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FRIDAY JANUARY 13th, 2006

Susan was admitted to Mt. Sinai hospital for observation after another heavy bleeding episode. This time the bleeding was greater than most others and the blood loss was quicker.

WEDNESDAY JANUARY 18th, 2006

Susan was released from hospital after having her bleeding go back to normal, where normal was only a little bit of bleeding. Susan got home about 5:30pm and was in bed about 10:30pm.

Shortly after, while both Susan and Jacques were in bed starting to doze off, Susan started to bleed. When she went to the bathroom Jacques followed and upon seeing the extent to which Susan was bleeding, both agreed it was best to rush to the hospital.

At the hospital Jacques quickly wheeled Susan in an available wheel chair up to triage and upon seeing Susan's bleeding a doctor checked the baby and Susan's vital signs.

The doctor determined the baby was in danger and that Susan was in labour. They immediately suspected a placental abruption and rushed Susan into the operating room for an emergency c-section.

THURSDAY JANUARY 19th, 2006

Isla Marie James Lauzon (or Isla James as she is known to the hospital) is born by emergency c-section under minimal general anaesthetic at 12:28am while Jacques waits in the lounge. (Jacques was not allowed into the operating room as Susan was sedated).

First picture of Baby Isla was taken by nursing staff.

About 1:10am Jacques was taken into the recovery room to see Susan and both sets of grandparents were called to tell them the good news.

Susan and Jacques are taken shortly thereafter to see newborn Isla, who has been connected to breathing equipment (intubated) and had 2 IVs put into her belly button.

Isla is immediately put on antibiotics to make sure that any harmful bacterial infections that may be in her system are quickly killed as her immune system would not be able to put up a fight. The doctors use Ampicilin and Gentamycin, common broad spectrum antibiotics.

FRIDAY JANUARY 20th, 2006

Isla, like a true canadian started on caffeine today. It is very common to give caffeine to premature babies because it is a stimulant that help their brains develop, as well as a stimulant for their hearts.

As well, they did the first ultrasound of her head. The doctors said there was a visible anomoly, possibly a slight bleed, but that the next ultrasound would confirm if there was something to be concerned about as it is not uncommon for there to be visible anomolies with the first ultrasound.

Also, because Isla's hemoglobin is constantly being destroyed by her body (this is normal and is happening to all of us as we speak) but her liver is still premature, her liver is not able to process all the dead hemoglobin cells and so they tend to deposit just under the skin causing jaundice. In order to get rid of this Hyperbilirubinemia, Isla is given her first free sun tanning session (this helps to break down the bilirubin for her).

SATURDAY JANUARY 21th, 2006

Isla's blood work shows no sign of harmful bacteria, so her antibiotics are stopped at 12:30pm.

Isla's Dad gave a sample of blood to be checked for a DIRECT DONATION of his blood for a transfusion. This will likely be necessary as Isla's prematurity means she cannot make red blood cells as easily as the rest of us.

SUNDAY JANUARY 22th, 2006

Isla's Bilirubin levels are normal and she is taken off the phototherapy. No more tanning!

MONDAY JANUARY 23th, 2006

Mount Sinai confirms Jacques' blood meets their criteria (no CMV amongst other things) to give to Isla. We have to wait for Canadian Blood Services to call him for an appointment. Susan is released from hospital late afternoon.

TUESDAY JANUARY 24th, 2006

Isla was started on indomethacin, to help correct her PDA. PDA is the reason she has a heart murmur. Blood Services calls Jacques with an appointment to give blood for Isla.

WEDNESDAY JANUARY 25th, 2006

Jacques gives blood at Blood Services in am. They will strip out the platelets, white blood cells and plasma, keeping only the red blood cells for Isla. She needs them to bring up her haemoglobin. Blood Services will screen Jacques' blood before making it available to Isla. We hope they can turn it around soon before Isla needs it. Otherwise, Isla will get blood from the general pool at the blood bank.

Today, Isla held onto Mommy's finger with both hands for about 45 minutes while she snoozed.

THURSDAY JANUARY 26th, 2006

Isla Turned 7 today. 7 days old that is. She has now had 5 doses of Indomethacine and her heart murmur is very faint. This 5 doses is considered 1 course by the doctors/nurses. She could be given another course (usually 3 doses but it could be more) if the murmur doesn't go away. As well, another ultrasound was done on her head and there was visible improvement so the doctors are optimistic that there are no issues with her brain (visually at least).

FRIDAY JANUARY 27th, 2006

Mommy and Daddy head to the hospital for a date - they are going to hold Isla for the first time. Unfortunately, when they get there, they discover Isla had a rough night. She had pulled out the feed tube and the ventilator in her mouth, so they had re-intubated her twice in 12 hours. That much handling tired her out. The ventilator tube that helps her breath was bothering her so they tried her on the next step - the CPAP machine. She was put on this by the time Mommy and Daddy arrived. However, this was too much work for her. So, after one hour, Isla was moved to a similar machine, the SiPap. This machine is similar to CPAP, but it has 2 pressures instead of one. The lighter pressure assists and prompts Isla to breathe on her own.

As much as Mommy and Daddy wanted to hold her, it was not the day for it. Isla needed to stay quiet, free of apneatic and de-sat episodes. Otherwise, these episodes could re-open her murmur and it would be back to square one with a heart murmur.

Isla was also given another round of the PDA drug Indomethecine and this made her stomach puffy. By the end of the day the doctor felt that she was getting bound up (ie no poopy) and so they were going to introduce glycerine to help her. This also meant holding back on her feeding as she was not tolerating her latest feeding of 6ml of breast milk.

Mommy and Daddy were sad, because Isla seemed very uncomfortable.

This was not helped by the IV put in Isla's leg so she could have a blood transfusion of Daddy's blood. Her hemoglobin had dropped to 89 and it was time to give her the help she needed from Daddy's blood. Isla received the transfusion at 5pm

SATURDAY JANUARY 28th, 2006

Isla was off the SiPAP machine when Mommy and Daddy arrived. She tolerated it well for about 10 hours after they put her on it. But tired her out so much that they put her back on the ventilator and reinserted the tube. Since she kept pulling them out of her mouth, they inserted it up her nostril. Poor thing! It looks uncomfortable, but it's much safer for her.

Isla had two x-rays today. One at 12:11am and the other later in the morning. The doctors were concerned that Isla was showing signs of Necrotizing Enterocolitis (NEC) and wanted to be sure to catch it if it was there. The first x-ray showed some abnormalities in her intestines but the second x-ray was greatly improved.

Isla looked much better after her transfusion last night -- pinker!

Mom and Dad have met some great people to share their experience with, including Diego and his mom Vanessa and Grandma Helen (and dad Ross, who we have not met yet). Diego had the operation for PDA and he is doing famously.

Check out the sick kids website and especially their animation of PDA.

Isla used a soother for the first time today... and liked it!

SUNDAY JANUARY 29th, 2006

Isla's second x-ray was also looked at to check her chest and lungs. There was concern that her lungs were showing signs of Pulmonary Interstitial Emphysema (PIE). Because of this, Isla was taken off the regular ventilator and put onto a high frequency jet ventilator. The doctors want to take all necessary steps to ensure that Isla does not have/get PIE.

The follow up x-ray, after the jet ventilator had been running for a couple of hours showed great improvement in Isla's lungs. She seems happy with her new machine and the nurses said she did not desat as much (desat means that her blood oxygen level drops - normal range is 90-97% and Isla's would drop to 50-60% and sometimes lower). If you've ever been to the hospital and had the nurse put a clip on your finger with a red light on it, that is what they are checking.

Today, for the first time, the murmur cannot be heard by stethoscope. It may be gone and an ECG next week will confirm this.

Today, Isla kept spitting out her soother -- prefering to hold Mom or Dad's finger instead!

MONDAY JANUARY 30th, 2006

Three nurses, on three consecutive shifts have told us they cannot hear the murmur. We are crossing our fingers that the PDA is closed.

Mom held Isla, while she was inside the incubator, for the first time today while the nurse changed her bedding. The nurse had been changing sensors from her leg to her arm, taking her temperature, changing her diaper. All the while, Isla waved her fists and kicked her legs in protest. Her heart rate elevated to 187. Then, Mom held her and her heart rate re-set down to 155. She calmed right down and she opened her eyes to look at Mommy.

During the evening, Isla was quiet and content. Now that the PDA seems closed, she seems free of desats and breathing spells.

TUESDAY JANUARY 31th, 2006

Isla had her IV removed from her umbilical cord today; it supplied lipids and vitamins. Now, Isla is feeding exclusively on breast milk. She is now feeding 11ml every 2 hours. At some point soon, she may need human milk fortifier. Normally a full term baby gets all the nutrition she needs from breast milk, but a preemie is so small and cannot drink enough volume. In that case, human milk fortifier is added to the breast milk to ensure she gets all the nutrients she needs to grow.

Mommy changed Isla's diaper tonight and Daddy took her temperature. Mommy also weighed the diaper to calculate the amount of stool in the diaper. Fun!

WEDNESDAY FEBRUARY 1st, 2006

Isla has not had a nurse or doctor hear her murmur all day. Her breathing is still mostly free of desats.

She weighs in at 930 grams -- and has held that weight for 2 days now.

Today, after feeding, Isla made a dramatic movement -- like the cat stretch or an attempt at downward dog. Mom and Dad could not believe how strong she is! Perhaps she is not used to the sensation of more food in her tummy and is trying to shift her position because she feels uncomfortable.

THURSDAY FEBRUARY 2nd, 2006

Isla Turns 14 days today.

Isla was switched from the high frequency jet ventilator to an oscillator ventilator today. It's just as gentle as the high frequency one and accomplishes the same thing. The high frequency jet ventilator is used for children much sicker than Isla, and it delivers air in a different manner. This was good news!

Isla did her acrobatic moves again today, again just after feeding in the afternoon. Perhaps she'll be ready for the Olympics in 2018!

FRIDAY FEBRUARY 3rd, 2006

When Mommy and Daddy arrived, Isla was sleeping (good for growth!) and was on minimal oxygen with the oscillator. The new plan for Isla is to keep her on the oscillator over the weekend, and then -- if everything continues as it has -- re-try the CPAP machine on Monday. This time, they think it will go well. Last time Isla tried the CPAP machine, she still had the heart murmur. It was a lot of work and she struggled while on it.

SATURDAY FEBRUARY 4th, 2006

Isla weighed in at 985 grams today. She's almost made it to the 1000 grams club!

When mommy and daddy came in, the nurse told us that Isla's umbilical cord stump had fallen off. She asked us if we wanted to keep it. ??? Apparently, some parents like to keep these things, but we took a pass.

Isla had almost self extubated herself -- meaning, she almost took the ventilator tube out of her nose. The tape had to be re-done, but at least the tube didn't have to be re-set. Her oxygen saturation swung high and low today, as she moved around quite a bit to try to adjust her ventilator herself.

 

SUNDAY FEBRUARY 5th, 2006

Most nurses don't object to mommy and daddy looking at Isla's chart (which is a thick binder!) and so today daddy took another good look at the information on the two x-rays. On the January 19th x-ray the doctor wrote "findings consistent with Hyaline Membrane Disease aka Respiratory Distress Syndrome (RDS)". We were aware of this in the beginning however did not realize that it could have a long term impact on Isla's lungs. The treatment that is currently being given is consistent with the information on the above link.

On the January 28th x-ray the doctor wrote "consistent with streaky atelectasis complicating Bronchopulmonary Dysplasia (BPD)/Chronic Lung Disease". This is a complication of RDS. quoting the linked source above, "If symptoms of RDS persist, then the condition will be considered BPD if a baby is oxygen dependent at 36 weeks' postconceptional age. So Isla can grow out of all the above potential problems, so please stay calm...!

On another note, Isla had a tough Sunday even though nana and grampa were there for support. About 4pm, the nurse found discharge leaking from Isla's left ear and right eye. She took a swab and sent if off for a culture. She also took blood to check white blood cells (elevated white blood cells show the immune system is fighting something off) and did a lumbar tap to check for meningitis. This check for meningitis is precautionary; apparently, the fluid was clear when drawn and this is not likely a possibility.

Later that evening, when mommy and daddy came in, Isla had an IV in her hand [poor little thing!] and was on 2 broad spectrum antibiotics. Her blood work came back with slightly elevated white blood cell count so they started antibiotics as a precautionary move.. In a few days, when the culture comes back, they will adjust the antibiotics to specifically target whatever bacteria she has. IF she has nothing, then they will remove the antibiotics.

On a positive note, Isla has passed 1000 grams, weighing in at 1020 grams. Yippee!

MONDAY FEBRUARY 6th, 2006

Over the weekend, Isla had been desat'ing quite a bit. Today she was calmer and peaceful. Her weight today dipped a bit to 1010 grams. She is feeding on 10 ml of breast milk every 2 hours. They reduced it by 1 ml per feeding in the past few days while she readjusts.

They moved her IV from the left to the right hand, as it was getting irritated, red and swollen.

They have not put Isla on the C-PAP machine yet. The past 24 hours was quite a lot for Isla to deal with so they will delay that move. One thing at a time. It is possible they will try tomorrow as Isla was on 32% oxygen today, a very low amount that shows she is almost ready to graduate to C-PAP.

TUESDAY FEBRUARY 7th, 2006

Hurray! Good news today when we arrived at noon. The cultures came back negative. Isla does not have an infection or meningitis. The IV will be removed this afternoon.

She was peaceful and sleeping lightly, without de-sat'ing very much - even while she was feeding. Normally when she feeds, breathing and eating at the same time is a lot for her to handle and her oxygen saturation level drops. While we there there, Isla's oxygen levels were in the proper range (85 to 95) and the oscillator was giving her minimal oxygen (38%). There was no news about when Isla may be switched to a C-PAP machine.

Isla's feeds have been re-set back to 12ml every 2 hours. We'll have to see what she weighs in at tonight. Update: she weighed in at 1050 grams!

WEDNESDAY FEBRUARY 8th, 2006

Tonight, Isla was quiet and content -- once her primary nurse got her into a good position. Her weight tonight was down marginally to 1035 grams. Small fluctuations are not a concern. The medical team looks at her overall growth over a weekly basis.

Isla spent quite a bit of time with her hands about her face, putting her fingers in her mouth and playing with her tongue... just like any full term baby. The mouth and putting fingers or pacifiers in the mouth is very important for the baby's development.

Years ago, medical theory was that bundling the baby's arms next to the body in a blanket was best, making the baby feel secure. Now, the line of thinking is that while it's good to swaddle the baby in blankets or use bed rolls around them, it's best to leave the hands free for the baby to place near the face. This promotes normal development, encourages sucking, and lets the baby soothe itself. The baby got used to his/her hands near the face while still in the womb, and s/he feels calmer when they are near.

Research also shows that introducing a pacifier or allowing the baby to suck its thumb or fingers as early as possible has other benefits:

- regulate oxygen usage/ establish breast or bottle feeding/ improve weight gain/ cope with painful procedures (while in NICU)/ tolerate feeds better/ and minimze hypersensitivity (from feeding tubes and tape around the mouth).

THURSDAY FEBRUARY 9th, 2006

Isla turns 21 days today! We found out yesterday that her hemoglobin was 117 and the nurse explained how that is likely to go down because her body is still trying to figure out how to create it. It works like this: baby gets blood transfusion to bring up her hemoglobin; her body, sensing an adequate amount of hemoglobin decides not to make any. As her hemoglobin goes down the hope is that her body will register the drop and start to make it for her. But, her body may not register this need or she may make too little and her hemoglobin will drop. This is normal! So, don't be surprised if you read that she has gotten another transfusion. In a short while her body will get the hint and make hemoglobin in the right amount.

In order to help her body to produce hemoglobin, the doctor has perscribed FeO4. This is to ensure that there is adequate supply of the building blocks of hemoglobin should her body decide it wants to give the whole "create hemoglobin" a try.

As Isla is gaining weight, her caffeine (which is administered based on her weight) has been increased from 3.4 to 4.1 (not sure the units).

FRIDAY FEBRUARY 10th, 2006

Isla is 30 weeks gestational age today.

Today Isla graduated to SiPap. She had been put on it once before (Jan. 27), when she had pulled her ventilator tube. The doctors wanted to try it, in case it worked (and since her tube was out already), but it was too much work for her then. Now, she was handling it like a pro. They took her off the ventilator, not only because she was on it for 14 days (and getting an infection is a risk), but also because they suspected her ventilator tube was getting clogged since she had been de-sat'ing (blood oxygen level dropping below acceptable levels) so much. It turned out her ventilator tube was moderately clogged.

Now, on SiPap, she was calmer and stable. She was breathing most of the time on her own. The machine is set so that after a number of seconds in which Isla holds her breath (perhaps because she is distracted by also trying to swallow or listen to us chatter at her), the machine gives her a breath. Then she remembers and continues to breath again on her own.

It's important for Mommy and Daddy not to be alarmed when Isla breathes sporadically, meaning she may take several breaths in quick succession, pause, take a few more, all in a random pattern. It turns out that babies do not learn to breath in a rhythmical pattern until 18 months of life. The doctors said if you hooked a full-term baby up to one of these machines, his or her breathing would likely be even more erratic.

One side effect of the SiPap machine is that it dries out Isla's mouth from the constant air blowing into her nose mask. Since she has not yet mastered swallowing - or tricky moves like licking her lips - she gets a build up of goo around her mouth. Tonight, Mommy and Daddy learned how to clean that off in a fun way. They dipped a q-tip into sterile water and put it into Isla's mouth and rolled it around. She LOVED it! She has always fed through a tube going through her nose or mouth, directly into her belly. This is the first time she is eating or 'drinking' something orally. When the swab is in her mouth, Isla sucks on it, as if it was a nipple. This is good practice for her.

Then, when Mommy or Daddy removed the swab, they used it to quickly wipe and clean up Isla's mouth. Later on they introduced fresh breast milk this way. Isla loved that too.

Isla is gaining weight. She is 1100 grams (or 2 pounds, 6 ounces).

SATURDAY FEBRUARY 11th, 2006

Today was fun! Mommy and Daddy arrived promptly after shift change at 7:45pm. Isla's isolette has to be changed (every 7 days to prevent bacteria growth and chance of infection) and today was the day. Mommy was able to hold Isla, skin-to-skin (see kangaroo care), during the change over. This was the first time she has held her outside of the isolette; and it was possible now that Isla is on SiPap (ie. the ventilator tube is out of her nose).

Isla was so content and calm, that she was able to remain out of the isolette for feeding and long afterwards. All in all, she was out of the isolette for 1.5 hrs! Since it went so well, Isla will be able to be held this way on a regular basis. It will help her development, as well as get her ready for breastfeeding down the road.

SUNDAY FEBRUARY 12th, 2006

Isla was still handling the SiPap machine like a superstar. And her weight is now 1150 grams (or 2 pounds, 8 ounces). When Mommy and Daddy arrived, the nurse informed them that Isla had pulled the whole mask/bonnet off a few times that day.

With this machine, she wears a bonnet that has straps to hold the mask in place over her nose (see photo on photo page). Since Isla is so good at pulling it off, it has to be secured snuggly. Over the past few days, however, the bonnet had trapped moisture and the back of her ear started to ooze. One of the nurses invented a different strap system to hold Isla's mask in place. Without the bonnet on her head, the ear had a chance to dry out. They will likely alternate using the bonnet and other head gear to keep this problem at bay.

Due to the increase in caffeine (a different web link than before), Isla is much more awake and aware of her surroundings. She tracks Mommy's and Daddy's voices; her eyes look around the room as if she is exploring. Today, Daddy was helping nurse by holding the temporary oxygen mask over Isla's face while the nurse re-configured Isla's SiPap head gear. When he spoke to Isla, to keep her calm, Isla immediately turned her head towards Daddy with wide open eyes and had a happy look on her face. She was very calm during the whole procedure as she seemed mesmerized by her Daddy's voice. She has always seemed aware of Mommy's and Daddy's voices, but today she was exceptionally attentive.

And lastly, the week came to an end with Mommy and Daddy hearing Isla's gurgles and a 2 second cry for the first time (Until now, the ventilator tube has been in the way of her vocal chords, blocking any sound). Most parents don't like to hear their baby cry, but it's a sound we embrace because it means Isla is progressing FABULOUSLY!

Isla had a great week, which means Mommy and Daddy had a great week.

MONDAY FEBRUARY 13th, 2006

Mommy held Isla again today -- this time in the cradle hold, wrapped up in a blanket. This way, Mommy could look at Isla's face more easily. Isla found the light out of the isolette too bright, however, and so, kept her eyes shut most of the time. Other than that, Isla was very happy. After 30 minutes of cuddling, the nurse said she had never seen Isla's skin look so pink (a really good sign). Daddy put Isla back in her isolette, complete with her blanket so she could smell Mommy's scent that lingered on it.

Today, Isla's weight jumped to 1230 grams (2 pounds, 11 ounces).

TUESDAY FEBRUARY 14th, 2006

Earlier today, Isla was desat'ing off and on. Then, the doctors ordered her caffeine dosage to be increased to match her new weight (now 1220 grams or 2 pounds 10 ounces). By evening, her spells had decreased and she slept quietly.

Mommy and Daddy got the results back from a follow up ultrasound (of her head) and everything had resolved.

Also, how Isla is being fed has been adjusted. First of all, she now receives breast milk on a controlled drip through the feeding tube that takes one hour to administer (rather then dripping by gravity through a syringe in approximately 20 minutes). This slower process helps her to handle her feeds better, and now she does not de-sat during or after the feed has finished (some babies are on continuous feed). And her feeding tube is now placed through her mouth, rather than her nose; it was hindering oxygen flowing from the SiPap machine.

Isla is handling the SiPap well. The nurses have been able to reduce the amount of oxygen she receives, and her blood-oxygen levels have remained normal. The goal is for the amount of supplementary oxygen to be reduced to 0 and Isla to be breathing 100% on her own.

FYI - Daddy changed her diaper tonight (not the first time).

WEDNESDAY FEBRUARY 15th, 2006

Last night, Mommy and Daddy went to a weekly meeting for parents with preemies in NICU. The topic was "Bringing your Baby home" and the classroom was packed with anxious parents, who all wonder what needs to be done and what challenges they face when their baby comes home at long last.

One big thing to understand is a preemie's corrected age. In terms of development, a preemie is not at the same stage of other babies with the same birth date. He or she has to do all the development, s/he would have done in the womb. In other words, on April 21, Isla will not be 3 months old, instead her corrected age will be one day old. This would be very important if we had to go to a hospital emerg during Isla's first few years. We would not want a doctor to take extreme measures to treat what they think is, say, a 5 month old who seems underweight, instead of understanding that she is the equivalent of a 2 month old. It was reassuring to learn we will take a copy of Isla's chart with us when we leave. If we travel anywhere, we'll carry a copy of it with us. After 18 months, Isla will catch up to other babies who were not premature.

Every parent in the meeting was worried about his or her baby having breathing spells at home. We learned that Isla will have to be free of spells or de-sat episodes for a full week before being released.

When Isla returns home, she will be as a full-term baby, except for several risk factors. The biggest concern for a baby born as young as Isla is her lungs. She will have a higher risk of asthma, of SIDS, and of contracting infection. We will have to take extra precautions, over and above what a parent of a full-term baby would take.

For instance, we should ask visitors to wash their hands upon arriving at our home. There is no problem taking Isla outside for walks or outings, but we must be diligent about strangers not touching her. Also, the nurse was adamant about not allowing anyone to smoke or even who smelled of smoke to be allowed near Isla. Not only does smoke increase her risk of lung issues, it increases her chance of SIDS. We were given recommendations about what to ask our visitors to do in those situations.

Tonight, Mommy held Isla again, this time for one hour. Isla handled it very well again and looked so comfortable. She fell asleep quickly and had very few de-sat's. Her skin was pink, her oxygen good (down to 34, the lowest so far!) and her breathing relatively even. When the nurse picked her up to replace her in the isolette, Isla began to cry... and then promply fell back asleep.

Isla continued to gain weight today; she is now 1250 grams (or 2 pounds, 11 ounces).

THURSDAY FEBRUARY 16th, 2006

Isla turns 28 days today and her weight was up to 1260 grams (still 2 pounds, 11 ounces). When Mommy arrived, the nurse told her that Isla had many spells overnight, but that she had been fine during the day. The plan was to increase her caffeine levels if her spells started up again.

Meanwhile, since Isla had been fine all day, Mommy got to hold her again (skin-to-skin which is best for development) at 4pm, after the nurse finished "changing her up" or changing the sensor locations, changing her diaper and the position she lies in, taking her temperature. Mommy held Isla for one hour, while her feed was being given to her. Isla handled it all very well, only squirming a little from discomfort and no major de-sats.

That evening, Mommy and Daddy took a CPR course (Infant and Child CPR) at the hospital, designed for all the preemie parents. In addition to the medical rescue techniques, it included information about SIDS, and car seat safety.

FRIDAY FEBRUARY 17th, 2006

Isla turns 31 gestational weeks today. Her weight is 1300 grams (2 pounds, 13 ounces).

Today Mommy arrived to find that Isla had been re-intubated with the ventilator. This step back was a bit of a shock and upsetting. Medical staff were right there to let Mommy know what this meant. The nurse mentioned all the steps that had been taken; then the respiratory therapist discussed the importance of her oxygen and CO2 levels; the resident explained many of the steps that had been taken and answered Mommy's numerous questions; and finally, the staff neonatologist (pediatrician for preemies in NICU) went over everything to ensure Mommy understood everything. When Daddy arrived, the doctor came back to ensure Daddy understood everything. Certainly, there was complete support and information. Here's all that was discussed...

Usually, when Mommy and Daddy are there, Isla does not spell very much. Isla had been spelling more frequently, however, through the past few nights. In order to control this, a number of things had been tried: increasing her caffeine intake, administering her feed over one hour (instead of 20 minutes), adjusting the pressure levels and increasing the back up rate on the SiPap machine.

Also 2 days before, Isla's blood had been taken to check for illness. More often than not, when a preemie baby is ill, s/he shows no signs of it. Sometimes unusual behaviour is the only telling sign. Since Isla's spells had increased over night, her blood had been taken to see if there was any indication of infection, meningitis or any other illness. The results then came back clear.

Her haemoglobin was low (94), but it had been chronically low before. What they were looking for was a significant drop in her haemoglobin before assuming that it was the cause of the spells. Having said that, haemoglobin carries oxygen through the blood around the body, so they will watch that number and if it drops lower, consider another blood transfusion. But this is, we think, a separate issue and not the cause of her spells.

Two days prior, Isla had a vaccine for RSV (Respiratory Syncytial Virus). If an adult gets this virus, it's like a cold or flu; but some babies and children get a severe form of this disease which is very serious. I asked if this vaccine could have weakened Isla's system and caused her to spell more, but the answer is no. This is due to the way the vaccine operates; it delivers antibodies to the body rather than a deactivated form of the virus which builds its own antibodies. In the 3 years this vaccine has been administered, no babies have had symptoms of RSV as a result of the vaccine.

They took a chest xray at 1100 to check Isla's lungs. All was clear. After they re-intubated her, they took another xray at 1230 to ensure all was still well and that the tubes had been inserted in the correct place. With the second xray, they noted that a small part of her upper right lung seemed collapsed. This could be due to the whole process of re-intubating her and her lung could re-inflate on its own once she was on the ventilator for a while. This will be monitored.

Also, Isla had an IV in. She was given a sedative to relax her while the tube was re-inserted. This made her sleepy for the rest of the day. The IV lock was left in, in case any other meds had to be administered in the next day.

They could not find a reason for Isla's de-saturation episodes. One of the doctors mentioned Isla was feisty when being examined, and she liked to see that; if Isla was lethargic, it would be a clearer sign that she was ill. The doctors waited as long as they could before making the decision to re-intubate. Once she was spelling frequently, they felt it was too damaging (tiring her out and not allowing her to grow) to allow Isla to go through the de-sats. She was small and perhaps she only needed to grow a bit in order to manage the SiPap machine (ie. breathing on her own with some help) better.

Another change made was that Isla was put on a continuous feed. If feeding was increasing the number of spells, a lower/slower volume may reduce these episodes.

After they re-intubated her, her CO2 (carbon dioxide) levels were high. I asked the doctor if this was due to her spells or if it was a separate issue. She said the levels went up [likely] after the re-intubation process. While changing the SiPap machine to the ventilator, her CO2 levels rose. The respiratory therapist reviewed bloodwork to ensure the machine's numbers were calibrated correctly; the bloodwork confirmed her levels were accurately reported. Accordingly, he increased the volume of oxygen Isla received to help bring the CO2 down to a safe range. After a few hours, Isla's CO2 levels were there.

When Mommy and Daddy spoke to other parents, it was clear that this step back was common. Most other babies had to be re-intubated for one reason or another.

Mommy and Daddy were still at the hospital during evening rounds. An order to take Isla's blood gases in the morning was given. Also, it was likely an xray and other blood work would be taken again the next morning to check all was well.

SATURDAY FEBRUARY 18th, 2006

This morning, Mommy called into NICU and spoke to the nurse to see how Isla had been through the evening. She had a rough night after we left. Isla had been put back onto the oscillator machine, which is gentler on the lungs and will help re-inflate the collapsed part of her lungs.

Since she had not improved overnight, an xray had been taken. It showed the area of the lung had not re-inflated and it looked "fluffy" - potentially due to bacteria growing.

Bloodwork was ordered and cultures taken of her blood and secretions. The bloodwork came back, showing her white blood cell count and other indicators of immune system response were elevated.

All these indicators pointed to pneumonia, which means part of her lungs are inflamed. Isla was put on antibiotics right away, the same broadspectrum ones she has been on before (cloxicillin and gentomycin). When the cultures come back on Monday and the type of bacteria that is causing the problem is identified, the antibiotics will be changed to a specific antibiotic for whatever bacteria they find. This is also when pneumonia will be confirmed and septicemia will be ruled out.

Isla slept most of the day, being pooped from all the exams and an improperly working lung. But at the end of the day, after only a few doses of medicine, she started to show signs of being her old self... protesting and batting at the nurse when being examined. Hopefully by tomorrow, she will feel better.

Lastly, Isla's weight tonight was 1340 grams (or 2 pounds, 14 ounces). While we are thrilled she is gaining, some of this "growth" may be fluid retention due to this infection.

SUNDAY FEBRUARY 19th, 2006

Mommy called in the morning to see how Isla had been overnight. Her ventilation had been "upped" a bit to assist her, but other than that she was stable and fine. She was comfortable and more active, showing signs of fighting off the infection and starting to feel better.

Mommy and Daddy spent most of the day with Isla. She was back to her old behaviour of trying to pull on her tubing and moving her head around when uncomfortable.

Other good news: Isla is 1400 grams (or 3 pounds, 1 ounce) now!!! She continued to gain, despite being ill.

MONDAY FEBRUARY 20th, 2006

This morning, Isla was on the same amount of ventilation as yesterday. She was receiving 36% oxygen, needing more generally when the ventilation tube moved into an awkward position or she was handled. She was still "swinging" up and down, but most often brought her blood saturation and heart rate levels up herself. She only needed more oxygen (up to 44%) a few times to assist her. All this is the same as before Isla got pneumonia, and is not out of the ordinary.

An xray was taken, and the respiratory therapist said the lung looked as though it has "opened up". The respiratory therapist had considered putting her back on the high frequency jet oscillator if her lungs had not improved, but now did not think this was necessary. They were waiting for the resident doctor to take a look at the xray as well.

Isla's blood culture come back negative, so it looks as though she does not have septicemia. The lab will continue to watch the culture up to 5 days, to ensure it remains negative.

The nurse did not have any orders for an eye exam this morning (they are done on Mondays), so we assume it has been delayed one week until Isla is better.

Later that afternoon, after many medical staff had looked at the xray, noted that the lung had re-inflated, and the "gunk" had mostly cleared up and decided that Isla did not have pneumonia. The bacterial group that showed up in the culture from her secretions was Gram Negative Bacillus. If the blood culture remained negative, they would likely take her off the IV in the morning.

TUESDAY FEBRUARY 21st, 2006

Throughout the night, Isla had to be suctioned a lot, as her body was trying to clear the secretions from the infection. As a result, they put her back on the high frequency jet ventilator today. Also, Isla was taken off the antibiotics (and the nasty IV taken out). The reason for putting her on the jet ventilator is that it is better at breaking up the secretions (or 'gunk') she has from the infection. This ventilator will be the primary tool to assist her in fighting the infection, rather than antibiotics. If the bacteria had been a different strain (staph, strep or pneumo), then Isla would have been kept on the antibiotics.

In the afternoon, she had an xray taken to check how much the infection had cleared from the day before. At 10pm, when Mommy and Daddy left, the results had not yet come back, but Isla was doing well.

WEDNESDAY FEBRUARY 22nd, 2006

Today, the results of the xray showed that Isla's right lung has completely cleared up. ln fact, it turns out that Isla does not have an infection at all. Mommy and Daddy were glad they waited in these past few days to find out all the details about Isla's condition before getting upset. Here's what happened:

Mommy and Daddy looked up Gram Negative Bacilli in their Merck Medical Manual, and discovered that it is the name of a family of bacterias. The information provided seemed pretty grim, yet the doctors had taken Isla off antibiotics and did not seem worried. Realising there was a reason for this, Mommy and Daddy asked more questions. It turns out that some gram-negative bacterias circulate in the blood and some live in one location, like the lungs. As long as the type of bacteria is not one that will circulate through the body via the bloodstream, antibiotics are not required.

Then, the resident with whom Mommy and Daddy were speaking decided to look up the latest findings. It turns out that the "gunk" in Isla's lungs was natural flora, and not the gram-negative bacteria they initially identified. It could very well be that bacteria was present in trace amounts, but was not the culprit causing Isla's lung to collapse.

In the last 24 hours, Isla had to be suctioned every hour, thanks to the high frequency jet oscillator helping to speed that process along. Today, Isla only needs suctioning every 4 hours - so this is a great improvement. Her beautiful pink colour has returned and she boxes with all the nurses who try to change her diaper and relocate the sensors.

In fact, a day or two ago, Mommy and Daddy arrived to visit and found Isla "parked" on the side of her bed roll, looking somewhat like a car with one wheel parked up on a curb. She had moved herself down the bed, and her legs were dangling over the bed roll. We knew she was on the road to recovery when that happened! Also, yesterday, Isla decided to practice Pilates, in particular the 'corkscrew' position. She was on her back and kept putting both legs directly 90 degrees in the air. Mommy and Daddy can't do that! Certainly, our friend Dawn (a yoga instructor), would be impressed!

Tonight, Isla weighed 1480 (3 pounds, 4 ounces). She gained an ounce in the last two days.

THURSDAY FEBRUARY 23rd, 2006

Today Isla is 35 days old.

The nurses have started bundling her. She loves it! Apparently most preemies like being bundled after about 30 days. It makes them feel safe and as if they are back in the womb. There is a practical reason to bundle little Isla as well... it keeps her hands under wraps and away from all the tubes or cables she would like to pull on. Every so often, the hands find their way out of the blanket to her face OR to a tube.

Isla needed a fair amount of suctioning today because she had a lot of secretions n her lungs.

Today, Mommy graciously allowed Daddy to change Isla's diaper during the evening "change up". Good thing too. After he changed the diaper and cleaned Isla up, she decided there was a lot more left to purge. Isla covered the bedding, the sensors and cabling, the clean diaper.... everywhere! It was quite spectacular and kept Daddy busy for a good 15 minutes!

Isla weighs 1520 grams (3 pounds, 5 ounces).

FRIDAY FEBRUARY 24th, 2006

Today, Isla is 32 weeks gestational age.

Isla needed lots of suctioning again today. Secretions can be caused by the jet oscillator, as well as by Isla's body producing them. The strategy for dealing with the volume of secretions was changed today. The nurses had tried to wait to suction her every 4 hours, when they do their assessment of her. This reduces the amount of handling Isla receives and allows her to get much needed rest. Now, they suction her more frequently, in order to reduce the amount of de-sat'ing she endures, which is hard on her system too. On average, they have been suctioning her every 2 hours.

Mommy and Daddy asked the Resident today what the next step would be. The plan is to let her rest over the weekend, and to try her on the SiPap (the C-Pap machine with 2 pressures that she was on last week) machine next week. There will be no need for her to move to the oscillator before going back to the SiPap. They will watch her to see how long she can tolerate the SiPap machine this time around. It's only through challenging Isla to keep trying the SiPap or C-Pap that she will learn to breathe on her own.

Isla needs to be weaned off the high oxygen settings she is on right now. Once she is on minimum settings without de-sat'ing, she will be moved to the SiPap machine.

We found out that Isla is scheduled for her first eye exam on Monday. Our primary nurse explained what is involved with this exam. The test will not be a pleasant one for her, with drops, bright lights and the exam itself. She may have more de-sat's on Monday and be more tired. Our guess is that she will not be put onto SiPap until at least Tuesday.

Isla weighs 1540 grams (or 3 pounds, 6 ounces).

SATURDAY FEBRUARY 25th, 2006

Isla has gained almost one more ounce, she is now 3 pounds, [almost] 7 ounces or 1555 grams.

Both Mommy and Daddy changed diapers today. Mommy sponge-bathed Isla for the first time, removed a probe, and measured her girth. They are encouraged that Isla continues to grow at a steady pace.

Isla didn't have much to say today, so neither do we. And that's a good thing!

SUNDAY FEBRUARY 26th, 2006

Isla had a follow up xray done today. It shows that her secretions are worse than last week's xray. The respiratory therapist changed some settings. She seemed to go longer before needing suctioning. Tomorrow, Mommy and Daddy will ask the doctor what the plan is to deal with this if the volume of secretions continue.

Isla gained 85 grams (or 3 ounces) in the past 24 hours, so she is now 1640 grams (or 3 pounds, 9.9 ounces).

MONDAY FEBRUARY 27th, 2006

Today was a big day for Isla. First of all, she had her eye exam, which is not a pleasant thing for a preemie. It's a very important exam and milestone. She did well, and the results show she does not show any signs of retinopathy so far. Her blood vessels have a ways to grow yet before they are fully developed. Isla will have a follow up appointment in 2 weeks.

Shortly after Mommy and Daddy arrived for their evening visit, things started to heat up. Daddy was holding Isla, to comfort her while the assessment was going on. Mommy took her temperature and gave her a sponge bath. Isla let us know she did NOT like it!

Mommy and our primary nurse could hear Isla making noises from where they stood. Normally, when a baby is intubated, the tube blocks the vocal chords and you cannot hear the baby cry or gurgle. The nurse quickly checked Isla's breathing with a stethoscope, to see if the tube was not in the right place. It was not incorrectly placed, but did not seem optimal to our nurse. Also, Isla was breathing heavily, as if she was breathing on her own.

The nurse called for a respiratory therapist and soon we had two there. They agreed the tube was not optimally placed. It could have been moved by Isla. When babies get bigger and stronger, they can work the tubing and change its position. So out it came, and the C-Pap (the biphasic SiPap model she had been on two weeks ago) machine was quickly wheeled up. Isla was soon outfitted with a new size of cap (since she has grown so much in the last 10 days), and the machine was set up. So, she is on C-Pap again, a few days ahead of schedule.

The question is, is it too soon? We will know better in the morning. Now the issue of the heavy secretions may become moot, since the constant blowing of air pressure will dry out Isla's nasal passage (she still will have secretions in her mouth). On rounds tomorrow, they may decide to do a follow up xray to see how Isla is responding to the C-Pap before deciding how to proceed. They may also decide to put Isla back on caffeine.

If Isla remains stable, then Mommy will be able to hold her again. And Daddy should grab a chance to do so this time around too. If she goes back to ventilation, Isla will not be stable enough and there will be too many cables/tubes to navigate out of the isolette.

So it was a tiring/busy day for young Isla, as well as Mommy, Daddy and the nurses. To top it all off, Mommy has developed a full blown case of mastitis.Very painful! We were worried about giving Isla breast milk with Mommy's infection + antibiotics, but apparently it is not an issue. Isla will receive about 10 percent of what Mommy ingests. Mommy is on Cloxicillin, the same antibiotic that Isla has been given already, so we know Isla is not allergic to it.

Despite all this, Isla has gained 20 grams, and is now 1660 grams (or 3 pounds, 10.5 ounces). Yaay!

TUESDAY FEBRUARY 28th, 2006

Isla was still on the SiPap machine when Mommy called in. She had spelled during the night only once at 2am. Everything was going well. When Mommy visited in the afternoon, Isla was still very stable.

It turns out the doctors did put Isla back on caffeine. If she was older, they would not likely have tried it, since after 35 weeks, studies show that caffeine is not as effective in stimulating the heart and lungs of preemies as before that gestational age.

Mommy and the nurse talked about the possibility of holding Isla today. Even though Isla was stable and had been doing well, yesterday was quite a day for her. Not only had she been extubated, but Isla had her eye exam as well. It was remarkable that she was so stable, but even so, the nurse pointed out that it was best to wait 24 hours and Mommy agreed. After all, whatever was best for Isla is what should be done.

In spite of all the action, Isla gained weight in the past 24 hours. And not just 10 or 20 grams, but 60 grams (2 full ounces)! She now weighs 1720 grams (3 pounds, 12.75 ounces). Go Isla!

In the evening, Mommy and Daddy attended a class on Infection control. The Information was very useful in helping Mommy and Daddy understand if there are special needs for when Isla comes home. The most important thing to remember is that Isla will be a regular baby girl when she comes home and is to be treated as such. The only thing that Mommy and Daddy will have to watch for is anything that can affect Isla's lungs. This includes but is not limited to cigarette smoke and sick people as it will be a while before Isla's lungs are completely developed like a regular baby.

One thing that had Daddy wondering was, did Isla's RSV vaccination have anything to do with Isla's sudden turn for the worse shortly after she received it? The infection control teacher pointed out that with any vaccination, there is a small group of people who react differently than the general population. This 1-3% of people will have a reaction ranging from small to serious. Daddy did further research and found that indeed what Isla went through could be because of the vaccination. Of course, it could have been a regular part of Isla's development. It doesn't matter. RSV is serious and if Isla were to get it would be much worse than the minor reaction that she may have had.

 

WEDNESDAY MARCH 1st, 2006

Isla was still doing well today. Only one spell for her daytime nurse and no more by the time Mommy and Daddy left at night.

Today, Mommy arrived just in time to help with Isla's afternoon "change up", but Isla decided to speed up her schedule. About 15 minutes before the usual time, Isla filled her diapers and then the cubicle when the poor nurse was changing the first diaper. Everything was finished when Mommy arrived and it was not a good time for her to hold Isla.

Mommy had a wonderful visit, however, as Isla was alert for a full hour after her change up. Isla held Mommy's finger, put it in her mouth several times and gnawed on it (a first! and it means she is developing well), listened while Mommy sang and recited "Green Eggs and Ham" from, er, memory. Daddy arrived from work and joined in before Isla fell back asleep.

In the evening, Mommy was able to hold Isla, the first time since she was re-intubated. Now that she was back on SiPap, it was possible again. Isla had been active and alert while Mommy, Daddy and the nurse all worked on taking her temp, changing her diaper and sponge bathing her. Then the nurse took her out of the isolette and put her on Mommy skin-to-skin. Isla promptly fell asleep. Mommy held her for over an hour. Daddy took pictures and re-adjusted Isla's SiPap cap and mask when it shifted and made Isla uncomfortable. It was a great day!

Oh! And our little superstar gained weight again. Isla now weighs in at 1740 grams (or 3 pounds, 13.5 ounces).

 

THURSDAY MARCH 2nd, 2006

Today, Isla is 6 weeks old (or minus 7 weeks, corrected age) and she weighs 1780 grams (or 3 pounds, 13.5 ounces). Today, Isla did really well with next to no spells. And today Mommy held her again in the evening. All around, a great day!

FRIDAY MARCH 3rd, 2006

Daddy arrived to visit today, and found the settings on Isla's SiPap machine had been changed... now it was set to C-Pap (instead of biphasic - or two pressures). In other words, she had hardly been spelling since being put on the biphasic machine on Monday, so they decided Isla could graduate to C-Pap, which is the next step to heading home. This was excellent news and showed that Isla was progressing really well.

Daddy also learned that Isla's haemoglobin was now 74. This is low. Actually quite low. But, at Isla's age it is now time to test her body's ability to create her own red blood cells. The measure of her body to do this is called her retics count (which in Isla is very good) and during rounds the doctors told mommy and daddy that they are waiting to see if Isla is up to the task. Daddy's blood is still on standby in case Isla's hemoglobin goes down further when they test it on Monday. It is important to give Isla's body the chance to step up to the plate. It takes a low hemoglobin to stimulate a premie baby's body to really kick in to high gear.

But daddy was reassured that the signs of low hemoglobin being an issue for Isla's health were not present - that being higher than normal heart rate, increasing needs for more oxygen and spells. Despite Isla's low hemoglobin, her body is handling it well. So, no transfusion is currently planned.

In order to help Isla's body to create red blood cells and hemoglobin her Iron supplimentation was optimized.

Mommy held Isla again tonight for 1.5 hours. Isla slept like a log, sucked on a soother, gnawed on her fist, and sucked her thumb. All this is good preparation for learning to breastfeed in a week or two.

Her weight is now 1850 grams or.... 4 pounds, 1 ounce!!!!! Her gestational age is 33 weeks today.

SATURDAY MARCH 4rd, 2006

Isla is doing so well now that she is on C-Pap. It is such a difference from last week, with all the suctioning and spells. The high freqency oscillator didn't agree with her and she fought it. Her body produced secretions in response. Now that she is on C-Pap she rarely needs the nurse to intervene.

Mommy and Daddy talked with the primary nurse about the next steps ahead. Isla has to move to "low flow" (light low of oxygen for a mild enrichment to her own breathing) and then breathing completely on her own. They may alternate her between C-Pap and low flow, to ease her into that phase.

Isla has gained enough weight to warrant putting her in a crib. There are other factors, other than weight, to consider before moving a baby to a crib. One factor is that Isla needs to be able to regulate her own temperature before moving from the controlled environment of the isolette. As well, there are a limited number of beds to be used, so it is not a given that this will happen right away. It will be good for Isla, developmentally, to move into a crib as soon as she is ready. Also, then Mommy and Daddy can do more to care for her once she is out of the confines of an isolette. Isla will have to be on low flow, however, before Mommy and Isla can start to work on learning to breastfeed.

Mommy and Daddy are not sure how long it will be before Isla will move to Level II. She will need to have her eye exam (on Mar. 13), but not sure how fast her transition will be after that. If Isla continues to advance at this same pace, it may happen quite quickly. Once Isla is on low flow, that whole process will become more evident.

Isla weighs 1895 grams (4 pounds, 3 ounces).

 

SUNDAY MARCH 5th, 2006

Tonight, Mommy changed Isla's diaper, but there was not much in it to change. Daddy checked Isla's chart and saw that she had not had many BM's during the day. Isla's iron supplements have been increased to help oxygenate her blood (because of the low haemoglobin). Unfortunately, iron binds you up and that's what was happening to Isla. Daddy thought that massaging Isla's poor bloated belly would make her feel more comfortable. It certainly did!!! She exploded right across the isolette, covering her bedding and a few cables and sensors along the way. Daddy was working from the porthole at the end of the isolette, and had to jump out of the way. While doing so, he let out a yelp and alarmed half the unit's nurses in doing so. This is the second time this has happened to Daddy. Everything happens in threes. Watch out, Daddy!

After going through 5 diapers (Isla is known to go through at least 2 every diaper change), and completing the rest of Isla's "change up", it was time for Mommy to hold Isla. Everything was set up, but when Mommy got Isla situated, Isla was still not comfortable. She kept moving her head back and forth, knocking her C-Pap tubing. Daddy and the nurse tried to adjust her cap, but it slipped off. We left her cap off while Mommy held Isla; Daddy spent the full hour watching/holding Isla's tubing like a hawk to ensure it did come loose. It gave Isla's scalp a break from the cap, but kept Daddy busy!

Earlier in the day, Mommy and Daddy bumped into Millicent in the hallway; we were invited to the Level II nursery to see how much her daughter Kezia had grown since they left NICU a week ago. Level II is a much quieter place - no beeping of monitors going off constantly.

Today, Isla weighed 1940 grams (4 pounds, 4 ounces)-

MONDAY MARCH 6th, 2006

Today Daddy woke up very ill. He called NICU and spoke to the Team Leader who verified that he could not come in to see Isla for at least 24 hours, maybe as long as 48 hours. Daddy and Mommy were very sad, but it's not worth the risk to Isla's [or any other baby's] health.

When Mommy went in, she learned that Isla's feeding schedule had changed. Isla had graduated to being fed every 3 [instead of 2] hours. Also, Isla is back to bolus feeds -- with the feeding tube coming from a big syringe that hangs upside down. She is fed over 1/2 hour instead of over 3.5 hours.

Isla's oxygen was down to 27% when Mommy arrived - the lowest it's ever been. When Isla was 2/3 the way through her feed however, she started to squirm - like she used to do when fed this way. The nurse had to increase her oxygen for the rest of the feed to 34% - where it was yesterday. It will take time to bring her oxygen requirement down. We just have to be patient.

Mommy helped with Isla's change up, and held her for a very quick hour. Isla had not yet been weighed when Mommy left, so that news will have to wait until tomorrow.

 

TUESDAY MARCH 7th, 2006

Today when Mommy walked into NICU, she checked Isla's weight from last night. Isla was 1990 grams (or 4 pounds, 6 ounces). By tonight, when Mommy left, Isla weighed 2040 grams (or 4 pounds, 8 ounces)!!!

Today, the nurses were weaning Isla's oxygen down to 25% and raising it to 34 - 40% when she was feeding or being handled. Even though her oxygen has to be raised to levels she has had in past weeks, Isla is now able to do more at that oxygen level. For instance, she is now on bolus feeds (feeding faster and higher volumes) and regulating her own temperature. So she is progressing.

Daddy was still sick today, and so was not able to visit. Mommy took lots of photos for him to see. It's important that either Mommy or Daddy visit as often as possible. When Isla hears Mommy or Daddy's voice outside her isolette, or feels one of them touching her as she sleeps lightly, her blood saturation levels go up and her heartrate settles. And when Isla is able to come out of the isolette to be held, it's even better.

Mommy held Isla for about 90 minutes tonight. Isla graduated to a bigger soother tonight and really seemed to be "rooting" or looking for it. Whenever she started to squirm (ie. threaten to move her head and knock off her C-Pap oxygen hose), Mommy offered the soother and most of the time, she settled down.

Mommy and the primary talked again about the possibility of Isla moving to a crib. There is one crib available right now, but 3 babies, including Isla, who are eligible to move. One of the babies is bigger than Isla, and so may have first dibs on moving first.... unless Isla grows really quickly!

 

WEDNESDAY MARCH 8th, 2006

Today Daddy thought he could go in to see Isla [his symptoms had been gone for 24 hours], but this evening his symptoms returned, and so it was not possible. Poor Daddy.

When Mommy visited in the afternoon, Isla was facing a direction she likes the least. She started squirming [moving into the cat stretch] and succeeded in turning her head from right to left. Unfortunately, she has a C-Pap oxygen rig over her nose. This got knocked off and Isla was without oxygen. Also, it got lodged under her head and Isla began to cry - something she does not do often. Mommy raced around the isolette and quickly re-adjusted Isla's head position and re-inserted the nose prongs. Phew! Mommy patted Isla on the back to settle her down and watched the monitor and Isla to ensure everything was okay. Once settled in this new position, Isla calmed down. At no point was Isla in serious danger and there were plenty of nurses nearby, but it was heart-wrenching to watch. Isla is getting stronger and is fighting the C-Pap. For this reason, we hope she graduates to 'low flow' soon.

We are also hoping that a crib is available for Isla soon. There are a few babies scheduled to leave Level II nursery on Friday. If things go as planned, and if space for a crib can be found in NICU, she wiill move into a crib in two days. Very exciting!

Today, Isla gained one more ounce... she is 2070 grams or 4 pounds, 9 ounces.

THURSDAY MARCH 9th, 2006

Today Daddy was still ill, and so Mommy went in on her own. Isla was doing quite well and Mommy was able to hold her for almost 2 hours. By then, Isla was getting restless and needed to be moved into another position.

Things are looking good for getting Isla moved into a crib tomorrow. A sign is hanging on one of the cribs in Level II and that family is moving to a "care-by-parent" room tonught. If all goes well, they will go home tomorrow on schedule.

Isla weighs 2130 grams or 4 pounds, 11 ounces.

 

FRIDAY MARCH 10th, 2006

This was the first day, since Sunday, that Daddy was able to visit Isla. Daddy was so happy! And Isla had grown almost 7 ounces since then and looked so much bigger! Tonight she weighed 2190 grams (or 4 pounds, 13 ounces). Mommy was a preemie too (arriving only 3 weeks early) and this was her birthweight.

And today Isla got her crib. While Daddy and our primary got the crib organised and moved into place, Mommy held Isla. When it was time to put Isla back, we chose her first outfit and everyone struggled to gently fit Isla's quick limbs into it. She looked so cute and Daddy took lots of photos.

There is an area in the unit that has cribs set up in it; it's a little quieter and the lighting is muted. Unfortunately, all the bed spaces were taken, so Isla stayed put in her bedspace for the time being. Her primary nurse set up a canopy above her head, to give her a little more shade and at night, turned down the lights in her area. We tucked Isla in and she went right off to sleep.

 

SATURDAY MARCH 11th, 2006

Today Isla's haemoglobin was checked. It was 78, up marginally from the last test (74), so the doctors decided Isla does not need a transfusion, as her body is starting to keep up with producing blood cells, as needed.

Isla is doing quite well, and seems content with her new crib despite all the beeps and interaction around her.

The next step for her is to move to low flow ( the baby does all the breathing on her own, but has a supply of slightly enriched oxygen to assist him or her). Right now, when her C-Pap gear is removed to check her nose and head, Isla 'drops' quite quickly without the support, so she is not ready to move to low flow. There is a technique that some doctors like to try to assist her making the transition to low flow called "cycling". It's not the kind we do on a bike! When a baby is getting close to graduating from C-Pap, the baby is put on low flow for short periods of time. In other words, the baby will try low flow for, say, an hour and then be put back on C-Pap. Over time, the length of time she is put on low flow is increased until the she can switch to low flow completely.

Another reason to consider having Isla cycling is that it is important to get her started now in learning to breastfeed. This cannot be done while she is on C-Pap. First of all, the headgear she must wear on C-Pap is cumbersome and would be knocked off. More importantly, is that C-Pap provides a pressurised flow of oxygen and therefore, would blow breastmilk into her lungs. So, one way to start to teach Isla to breastfeed is to do NNS (non-nutritive sucking) during the short time that she is cycling on low flow. This decision will not be addressed on the weekend, and so we must wait to discuss it on Monday.

Also on Monday, Isla is scheduled for her second eye exam.

Today, Isla weighs 2240 grams, or 4 pounds 15 ounces!

 

SUNDAY MARCH 12th, 2006

Today, Isla was doing well, although she swung down (dest'd) when her oxygen levels were set below 30. She just needs time to build up the strength in her lungs.

Mommy and Daddy both helped with Isla's care today, changing her diaper, wiping goop off her eyes and mouth, adjusting her C-Pap cap and massaging her nose and head when the cap and nose gear are removed to give her a break.

Today, Isla weighs 2310 grams or 5 pounds, 1 ounce!!!

 

MONDAY MARCH 13th, 2006

About noon today, our primary nurse found out Isla's eye exam had to be postponed to tomorrow.

During rounds, discussion about whether Isla would begin cycling between C-Pap and low flow did not even come up. This is because Isla's haemoglobin is low. She is managing exceptionally well but tires easily and her numbers drop quickly when thec C-Pap is removed as necessary for short periods of time. She has little reserve to tide her over. To add cycling at this point may rock the boat and is a little early. Also, Isla has an eye exam and her RSV vaccination this week. It may be too much to do more than one thing a day. Once all those things are done this week, the issue of when to start cycling can be re-addressed.

Isla had a good day today. She swung up (heart rate) and down (blood saturation) a little today, but had no spells (in which the nurse had to intervene). She squirmed a bit when the C-Pap straps became uncomfortable or condensation accummulated and dripped into her nose. Daddy was around to take care of adjusting her cap or emptying out the water.

Isla continues to be a superstar in the growth area... she weighs 2235 grams (or 5 pounds, 2 ounces) today!

 

TUESDAY MARCH 14th, 2006

Isla had her eye exam today. Although she was given Lidocaine for pain, it is uncomfortable and her eyes were swollen afterwards. Also, she spelled more frequently afterwards, as the exam put more stress on her body which is already tired from low levels of haemoglobin. However, the good news is that there is still no sign of retinopathy and her blood vessels continue to grow normally. This was a big relief for Mommy and Daddy. As any parent who has a child in NICU knows, every eye exam is a big deal and everyone holds their breath until they know the results.

After her eye exam was over, Mommy and Daddy were able to spend time with her, help change her diaper, take her temp, hold the oxygen mask over her while the nurse weighed her, etc. Then while Mommy was in the pump room, pumping breastmilk, Daddy held Isla. When Mommy returned, she held Isla. All in all, Isla was held almost 2 hours. During this time, her blood saturation increased and her heart rate regulated itself and she slept soundly.

Then, Isla had a very stinky diaper, so Mommy and Daddy stuck around to help again with all the care needed. It took quite a bit of time, not only because Isla kept filling diaper after diaper, but mostly since Daddy changed the diaper this time around. Daddy takes his time, but that's okay because he had fun playing with Isla and telling her all kinds of funny things. Although Isla didn't understand the jokes, she certainly responded to being coddled by Daddy while Mommy and the nurse doubled over laughing.

The nurse found wider straps to put on Isla's C-Pap cap. Maybe this will not cut into her cheeks so much and be more comfortable for her.

Today Isla weighs 2385 grams, or 5 pounds, 4 ounces.

 

WEDNESDAY MARCH 15th, 2006

Today when Daddy and Mommy arrived, they found out that a bed space in the area for cribs would be available late afternoon. Our primary had made arrangements for Isla to be moved there. Hurray! That area is somewhat quieter, the lights are muted, and it's a little more private - all better for Isla's speedier growth and development. Now that she is out of the isolette, the unit is a noisier place for her. In this new location, she will be able to sleep better - and therefore grow faster. By the time Mommy and Daddy returned in the evening, Isla had been moved. We were so grateful Isla is in this new location.

Tonight, Mommy learned how to bathe Isla in a bathtub. Up until now, she had sponge bathed Isla in the isolette. The C-Pap nosegear and cap had to be removed, so while Mommy bathed Isla, Daddy gave Isla oxygen from a hand mask (called free flow). The nurse stood by and coached Mommy. Everything went well and Isla was gurgling and enjoying it.

After the bath, diaper change, weighing her on a scale and all the other care, Mommy held Isla "kangaroo care". Isla fell fast asleep for over 1/2 hour. The nurse stepped away to get something and Daddy went to the front to get some water. All of a sudden, Isla's numbers dropped dramatically. Up until now, Isla's blood saturation had been super high and her heart rate regulated - which normally happens when Mommy holds her. Isla had not been squirming or pooping or doing anything that could explain her numbers dropping.

Mommy watched the monitor while her saturation dropped to low 40's and her heartrate dropped to low 60's (normal rates for a preemie are 85 to 95 and 155 to 170, respectively). Isla didn't come back on her own. She was having a true spell. Mommy rubbed Isla's back and then started to pat it, to remind her to breathe. Daddy returned. By this time about 45 seconds had gone by. Daddy went to call the nurse. By the time they returned, about a minute had gone by and now the sound of the alarm bells changed to a more insistent sound.

The nurse tapped Isla more assertively on her diaper, to try to rouse her so that she would remember to breath. She turned up Isla's oxygen and continued to tap Isla. Isla woke up a bit and resumed breathing. Mommy and Daddy sat back in relief.

Isla has been doing exceedingly well, but still has spells like this one every number of days. And she does not usually have spells this dramatic when Mommy and Daddy are there. As alarming as all that was, this type of spell is common and will decrease as Isla's lungs, brain and heart mature. Who knows what caused it? It could have been that handling Isla during bath time tired her out excessively and she had a delayed response to it. It could have been that she was so content and relaxed that she "forgot" to breathe. It could have been many things.

While it was scary for Mommy and Daddy, things were never out of control. And Isla was not without oxygen, as the C-Pap machine supplies that to her. She just was not doing any of the work herself. It will take a bit more time for her to learn to do this unconditionally. It was a reality check for Mommy and Daddy that Isla will progress at her own pace.

Isla never really woke up fully, despite Mommy's, Daddy's and the nurse's efforts. We put her back in her crib, and she drifted immediately off to deep sleep, oblivious to the drama around her. Instead of leaving early to get a good night's sleep for a change, Mommy and Daddy stayed longer than planned to ensure Isla was really stable. And she was.

Isla continues to grow and now weighs 2465 grams or 5 pounds, 7 ounces.

 

THURSDAY MARCH 16th, 2006

Today Isla had her RSV vaccination shot; this is the second monthly shot she has been given. Daddy and Mommy are holding their breath, to see if Isla reacts to it. Reactions are extremely rare, however, last month, Isla was reintubated within 20 hours after receiving it, with a collapsed lung and [we thought] pneumonia. Isla remained intubated on the ventilator for 10 days, and this was a setback to her terrific progress. There is no way to know for sure if the RSV vaccination tipped the scales and caused Isla to be reintubated. Additionally, even if it did cause her setback, it may not happen this time around. Isla is one month older, stronger and her lungs are more mature.

Isla did very well today, swinging down many times, but with no spells like yesterday's episode. It has been a busy week for Isla, and so the doctors decided during rounds today, to keep Isla on the C-Pap machine until next week. By then, we hope she is ready to try cycling on either high flow or low flow while being cuddled. We can also start trying to breastfeed once she is off C-Pap for short periods.

Isla was cuter than ever and so alert today. In the afternoon, Isla started "talking" to us. Daddy had been cooing at Isla and telling her funny things while changing her diaper. Isla opened her mouth and strained a bit. We thought she was about to cry. Instead, she started talking gibberish to us and gurgling. We were so excited and tried to get a bit of it on video. Later in the evening, she "talked" to us again. Mommy and Daddy better learn her language soon and get it translated.

Mommy held Isla 'kangaroo style' for almost an hour tonight, and then passed her to Daddy. Daddy tried 'kangaroo care' for the first time. Both he and Isla loved it! Isla was so relaxed, while being held by Mommy and Daddy, that she passed wind many times and left a present in her diaper. Mommy and Daddy didn't think it would be very nice to leave that for the nurse, and so they changed Isla before leaving for the night.

Isla is 2.5 kg or 5 1/2 pounds!!

 

FRIDAY MARCH 17th, 2006

Today Isla's gestational age is 35 weeks old.

The doctors decided during rounds today to take Isla off caffeine. She received her last dose at noon today. After a certain age and weight, caffeine is not longer efficient in stimulating the preemie's heart and brain to breathe. So, no more lattes for Isla!

Other than that, Isla did well today. There was no sign of any adverse response to yesterday's RSV vaccination. Isla was patient with Mommy while she was bathed [Mommy needs more practice] and enjoyed Daddy's antics while he changed her diaper, etc.

Isla is 2530 grams today or 5 pounds, 9 ounces. She's our little chunky monkey!

 

SATURDAY MARCH 18th, 2006

Isla had a busy day of growing and looking cuter than ever, but there are no new updates.

Mommy and Daddy have both started holding Isla each day. After finishing her care at 9pm., it's usually time for Mommy to pump. So, Daddy holds Isla kangaroo style while Mommy heads to the pump room. When Mommy returns, they trade off. Isla barely rouses while she is resettled. All in all, she is held for almost 2 hours daily. Her blood saturation always rises and her heart rate drops a bit (good).

Isla is 2590 grams today, or 5 pounds, 11 ounces.

 

SUNDAY MARCH 19th, 2006

The doctor dropped by Isla's bed space while Mommy and Daddy were visiting. She had noted that Isla is 59 days old. Isla was due for four vaccinations as of tomorrow: 1. Diphtheria, Tetanus, Pertussis, Poliomyelitus, 2. Hib (Haemophilus Influenzae), 3. Pneumococcal, 4. Meningococcal. Children get 4 doses of the Pneumococcal vaccine, the first at 2 months old. It prevents infections of the brain, lungs, blood and middle ear.

Daddy asked the doctor a few questions about the pros and cons of vaccines. Although Mommy and Daddy are concerned about some claims that have emerged about vaccines causing health problems (and at this point, there is no conclusive evidence that they cause autism or other conditions), they felt the risk of not immunizing Isla was greater than not doing so.

Isla was due to begin "low flow" tomorrow as well. Mommy and Daddy had a discussion, together with the doctor and Isla's primary nurse, about starting low flow or administering the vaccines tomorrow. It may be too much to do both on the same day. The doctor left the decision about which to begin on Monday with Mommy and Daddy, and asked them to call in with their decision in the morning.

When Isla moves to Low Flow, she will be breathing completely on her own (see March 4 & 11 for background). The doctors wish to begin "cycling" - or alternating - her between low flow and c-pap until she can be moved exclusively to low flow.

Today Isla weighs 2645 grams, or 5 pounds, 13 ounces.

 

MONDAY MARCH 20th, 2006

Today Isla is 60 days old.

Mommy called to let the nurse know they preferred Isla to try low flow today and to have the vaccines administered on Tuesday.

Follow up bloodwork was done this morning, and the results came back that Isla's haemoglobin is now 93. Ten days ago, Isla's haemoglobin was 78, so this is very good news. It shows her bone marrow is producing red blood cells as it should.

This afternoon, Isla was put on low flow for 2 hours. Mommy was able to cuddle her for the first hour. Now that Isla is working towards being exclusively on low flow, we can try getting Isla to breast feed. It's very important to try this soon, as the window of time to do so is short (Isla may not be interested in breastfeeding if not introduced to it soon).

Today, Mommy and the nurse did not actively try to get Isla to breastfeed because it's important to do only one new thing a day. However, as soon as Isla was put on Mommy (without all that C-Pap headgear), Isla arched her back, opened her mouth wide, and started searching around for the breast. This is called rooting and is a great sign. It shows a clear instinct to breastfeed.

Isla continued to root and squirm around. She was trying to move into position. It was a lot of work for her, however. While Isla's strong and feisty, her arm muscles and torso need to develop so she can move herself around. She squirmed and grunted and pushed. Then, she lay down for a nap. After a while, she roused and the process began again. Finally, with Mommy and Daddy helping, Isla moved herself into the cross-cradle position and happily went to sleep.

This was not the first time that Isla has started to root. She did so before when on the C-Pap machine, but sometimes it was hard to tell if she was simply uncomfortable by the head and nosegear. She would not have been able to smell Mommy's breastmilk while on C-Pap, like she can now while on low flow. That's one of the reasons Isla's instinctual rooting was so dramatic today.

Isla is 2700 grams today (or 5 pounds, 15 ounces).

 

TUESDAY MARCH 21st, 2006

Today Isla is 2737 grams, or 6 pounds. Isla has tripled her birthweight!!

The nurse today arranged for Mommy to be able to cuddle Isla on low flow for a few hours, by waiting to administer Isla's immunization until later. Today's cuddle session went really well. Isla only "swung" up and down a bit, but for the most part was stable.

Being on low flow must be such a welcome break from wearing the C-Pap gear for Isla. The cap is uncomfortable, the straps dig into her little cheeks and inch up and irritate her eyes, and the vapours become condensation [since she is wearing it outside of an isolette] and the water runs down into her nose. All in all, it must be miserable. No wonder Isla seems to brighten up when all that gear comes off. It will be a fabulous day when C-Pap becomes history.

After the regular parent meeting, Mommy and Daddy came in to find Isla sleepy, but other than that - so far - no adverse reaction to the vaccines. In fact, she was doing so well, that Mommy was able to hold Isla again, although this time on C-Pap.

 

WEDNESDAY MARCH 22nd, 2006

This afternoon, Mommy held Isla on low flo for about 1/2 hour. She was calm, content and doing nothing (like coughing or squirming) to cause her to spell. All of a sudden, she "went apneac" or stopped breathing. Her blood saturation and heart rate dropped dramatically. Mommy called the nurse over. Isla was blue and not responding. As quickly as she could, the nurse got Isla back in her bed and put her back on C-Pap.

We are not sure exactly what caused this episode. Isla had been handled a lot a few hours before Mommy came in to hold her. Also, the vaccinations from the day before could have made her more susceptible to this.

Mommy went home and came back after Isla had rested. Then, she was able to hold her again on low flow. Everything was fine this time around and Mommy was able to hold her for 1.5 hours.

Today Isla weighs 2760 grams, or 6 pounds, 1 ounce.

 

THURSDAY MARCH 23rd, 2006

This morning, Isla's great-grandfather Champagne died. Daddy and Mommy are sad that Isla will not meet him.

Today when Daddy called in the morning, the primary nurse told him Isla had been put onto high flow. She had noticed, when she changed the C-Pap nosegear, that Isla's nose was red. A number of days prior it had been white. This was not a good progression. It must be very sore and there was risk of further complications. The nurse conferred with the doctors, and it was agreed to try her on high flow. It was pushing her to do this, but everyone agreed that it was imperative to find an alternative to the current C-Pap set-up.

When Mommy arrived this afternoon, Isla's blood saturation and heart rate were great. The number of respirations she was making per minute was low, however. And this was a concern because she could stop breathing again.

While she was feeding, her respirations remained low. Mommy stimulated Isla to remember to breathe by patting her diaper or rubbing her back and talking to her. Isla wanted to sleep but it was important that she didn't have another apneac spell. Once Isla finished feeding, her respirations increased and Mommy did not need to continue patting and rubbing. She did not hold Isla however, since that may rock the boat.

In the evening, once Isla continued to increase her respirations, Mommy was able to hold her. The nurse kept her on high flow, rather than moving her to low flow. When Mommy and Daddy left for the night all was still well. Then, Mommy was up late to pump and called the nurse at 2am, just to see if Isla was still okay. And she was.

Today Isla weighs 2780 grams or 6 pounds, 2 ounces.

 

FRIDAY MARCH 24th, 2006

Isla's gestational (corrected) age is 36 weeks old.

This morning Isla de-sat'd a few times, with her blood saturation swinging down to the 50's and her heartrate dropping as well. She could not come back up without assistance. The nurse discussed this with the doctors and it was decided to put her back on C-Pap. Isla was just too tired out from doing all the breathing on high flow. She was put back on C-Pap at noon, 24 hours after she had been put onto high flow.

Mommy and Daddy were sad to see Isla have to be put back on C-Pap, because they knew how uncomfortable it was for her. But, they were proud of Isla for doing so well and tolerating high flow for a full 24 hours.

Mommy waited to hold Isla until evening, to give her time to rest. It was also bath night. Daddy was out of town all day, to attend his grandfather's funeral, so it was up to Mommy to bathe Isla, change her diaper, weigh her all by herself - with the nurse supervising, of course! Everything went just fine. Then, Isla was put onto low flow while Mommy held her. And Isla had no problems at all. What a relief!

Tonight, Isla weighs 2815 grams, or 6 pounds, 3.25 ounces.

 

SATURDAY MARCH 25th, 2006

Mommy met with the lactation consultant today to get tips about NNS, or non-nutritive sucking. It is time to introduce Isla to breast feeding, but we need to go slowly. Her mouth is small, her ability to suck is immature and she lacks the strength of a full-term baby. Also, the business of sucking, swallowing and breathing is a big deal for a preemie. It's a difficult, and potentially dangerous, thing for them to coordinate. It is very easy for them to choke.

To do NNS, Mommy needs to pump breastmilk first, so not to "drown" Isla when she tries and also, not to scare her with a huge gush of milk that she cannot control.

Isla weighs 2870 grams today, or 6 pounds, 5 ounces.

 

SUNDAY MARCH 26th, 2006

Not much to report today. Isla continues to cycle between C-Pap and low flow. She is tolerating low flow quite well, and can be held 3 hours or longer without spelling. A few nurses have said that she seems to be ready to cycle for longer periods on low flow. That would be wonderful for Isla. As she gets older and bigger, it's more and more miserable for her to wear the C-Pap cap and nosegear.

Isla is scheduled for her eye exam tomorrow.

Isla weighs 2885 grams, or 6 pounds, 5.75 ounces today.

 

TUESDAY MARCH 28th, 2006

Today, the nurse received a call from the opthamalogist to put drops in her eyes at noon, one hour prior to his visit. Great news! Isla has Stage 0 retinopathy (ie. still no sign of it) and her blood vessels have continued to grow normally into zone 3. Her next exam is in 3 weeks.

When Mommy came back after Isla's eye exam, it was time to "change her up". Mommy did so as quickly and gently as possible. Isla was fussy, not wanting to be touched too much and her eyelids were red from the exam. Mommy wiped her mouth but skipped her eyes this time. Also, instead of trying NNS, Mommy just held Isla until she settled down and fell asleep. The eye exam was short and "went well", according to the nurse, but it is tiring and upsetting for the baby. Isla was no exception.

When Mommy and Daddy returned after dinner. Isla was happier and calmer. She was still tired, however, and trying the NNS was still not a good idea. It's better to do only one big thing a day. Again, Mommy held Isla for a few hours.

Daddy heard the medical team doing rounds. The nurse gave them her observations about how Isla was doing. Daddy told them she was on low flow twice daily when being cuddled by Mommy. The sessions were going well and Isla was tolerating it for a good 2 hours each time. The doctor increased the orders to be 4 hours twice daily. Daddy and Mommy were ecstatic!

Isla is 3055 grams, or 6 pounds 11 ounces.

 

WEDNESDAY MARCH 29th, 2006

This afternoon when Mommy arrived, Isla was already on low flow. She asked the nurse when it had been started. The nurse smiled and said she had been on it since last night!! She had been sleeping so comfortably then that the nurse decided not to wake her up immediately to put her back on C-Pap when Mommy and Daddy returned her to her crib. She slept and continued to tolerate it, so they decided to keep her on low flow to see how long she could handle it. And she was still handling it beautifully at 2:30pm.

In addition, overnight she had been weaned from 200 cc of oxygen to 150 cc. Then during the day, she had been weaned down to 125 cc of oxygen.

Mommy was elated. She ran down the hall to call Daddy the good news, and then ran back to "do up" Isla and hold her during her feeding time. Daddy arrived unannounced 45 minutes later. At 5:30pm, Mommy put Isla back to change her diaper, pump, and then hold her again at 6pm during her next feed. Through all this, Isla maintained her good numbers.

Just before Mommy put her back into her crib, the respiratory therapist came by to officially remove the C-Pap machine. It had been there all day, in case Isla needed to be put back on it. Now they felt it was not necessary. Hurray! Another big milestone.

After Mommy and Daddy grabbed a quick bite to eat during the nurse's shift change, they came back. They changed Isla, and bathed her. Isla loves her bath! And she loves being dried afterwards. Daddy spent lots of time cooing at Isla and whispering secrets in her ear. She loved it!

Then, Mommy held Isla and together with Daddy's and the primary's help, tried to get Isla to do NNS. Isla's instinct to root is good, but then she just stops. After about 10 minutes, Mommy decided that was enough for Isla for one day. It was already a big day for her being on low flow so long. She was tired and needed her rest. Mommy continued to hold Isla for another hour.

A few times while Isla was sleeping, her heart rate and blood saturation dropped dramatically. She was just so relaxed, she forgot to breathe. Daddy was watching and called the nurse immediately. Isla recovered pretty quickly, but it made Daddy and Mommy nervous.

Daddy put her back to her crib and helped settle her down for the night. Just as he was saying good night to her, Isla coughed a bit. Then, her numbers dropped again. Before the monitor had registered Isla's distress by beeping, Daddy called the nurse over again. The nurse checked Isla's lungs, her low flow prongs. Everything seemed to be in order. Her blood saturation was back up to 100 percent.

In all these episodes, Isla came back quickly from the drop. Mommy and Daddy were nervous because in all incidents, they had been around to call to Isla and stimulate her. Since she did recover relatively quickly, these incidents are not recorded as a 'spell'. We hope Isla does not get challenged too much, if the next shift is unaware of her "dips" and have a set back. The other worry is what qualifies as a 'spell'. Before Isla goes home, she has to be 'spell-free' for a determined period of time. While her dips are common for a preemie, they are too much of a drop for her to go home safely. We are not sure how her status is monitored right now as Isla gets closer to coming home. At least with Mommy's increased time at the hospital, she can see how often this occurs and relay it to the doctors and nurses.

Isla's feeds have been increased to 61ml, every 3 hours for a total of 488ml (17 ounces) of breastmilk daily. Her iron supplement has been increased according to her weight gain. Her bloodwork came back this morning, and the dietician decided to keep Isla on the HMF, or Human Milk Fortifier.

Isla is 3075 grams, or 6 pounds 12 ounces.

 

THURSDAY MARCH 30th, 2006

When Mommy called this morning, Isla was doing well, still on low flow with 125 to 150 cc of oxygen to support her. When Mommy arrived in the early afternoon, Isla had had a spell, with her heart rate dropping to 40 and her blood saturation down to 67. This was the worst spell in 5 days.

Mommy held Isla during feeding. The clinical nurse practioner came by to explain that they wanted to put Isla back on C-Pap for 24 hours. She was exhibiting some signs of fatigue (the spell; fast, shallow breathing; sleepiness). In addition, Mommy noticed her sweating while she was being held, Isla was tired and not as alert or playful as usual, and when Mommy tried NNS during cuddles, Isla had been too tired to try.

Mommy agreed that putting Isla back on C-Pap was in her best interest, even though she would hate it. As the nurse pointed out, if Isla was left on low flow to the point of exhaustion, she would need to be put back on a ventilator, not C-Pap. That would be like taking 3 steps backward, not one. Plus it would take her longer to recover.

Isla was put back on C-Pap at 5:30pm, 45 hours after moving onto low flow. She promptly fell asleep. Isla had done very well. The plan is to give Isla a rest for 24 hours on C-Pap, and then continue to cycle her on low flow from there.

After dinner break, Mommy and Daddy came in to see Isla. She woke up shortly and became fussy. The C-Pap cap was bugging her and she kept pushing at the strap on her face. Usually Daddy gently strokes the strap, thereby soothing the skin underneath. Tonight, Isla went ballistic when Daddy touched her like that. This is because Isla is sensitive to the different tapes that are put on her face. She had developed a rash and pimple-like bumps in reaction to the tape. When she was on low flow, the nurses had taped around the rash to let it air and heal. It was not fully healed when the C-Pap straps + tape went back on. Her poor face must be in pain and/or itchy.

Since Mommy cannot do NNS when Isla is on C-Pap (milk would blow into her lungs), Daddy held Isla tonight. She continued to be fussy. Daddy fixed her cap and nosegear many times, but Isla still did not settle. She 'dipped down' many, many times. On the surface, it seemed that putting her back on C-Pap was much worse than the low flow.

Finally, Daddy started making up silly songs and talking to her in a deep voice, similar to "Edna" in the movie 'The Incredibles'. Isla started to settle and smile. When it came time to put Isla back, she was very sleepy and did not object much to having her diaper changed. Mommy and Daddy stayed quite a while, however, since Isla suddenly became alert. When finally closed her eyes, Mommy and Daddy played music from her mobile and then tip toed away.

Isla was not weighed before we left, so we will find out today's weight sometime tomorrow.

 

FRIDAY MARCH 31st, 2006

Last night, Isla weighed in at 3125 (7 pounds, 14 ounces) and today she weighs 3205, or 7 pounds, 1 ounce.

The doctor's orders today were for Isla to be on low flow for cuddling only to see how she tolderated it. If all went well, then increasing the length of time she is on low flow will be considered the next morning.

Mommy held Isla in the afternoon and in the evening, after her 3pm and 6pm care. Isla handled low flow really well both times. It was bath night, so Mommy and Daddy washed and played with Isla.

 

SATURDAY APRIL 1st, 2006

Today, the doctor's orders were to put Isla on low flow for 6 consecutive hours, starting when Mommy and Daddy arrive for care and cuddling. Mommy arrived at 2:20pm and got started with Isla's care. At 3pm, Isla was put on low flow. Mommy held her and tried NNS. Isla latched on for a full 3-4 minutes. So exciting!

Daddy arrived afterwards. When it was time for Mommy to pump, Daddy took over holding Isla until it was time to do her change up and put her back.

After dinner, Mommy and Daddy arrived at 8:30pm, in time for Isla's 9pm care. Six hours of low flow had ended, so the nurse put Isla back on C-Pap. Daddy held Isla afterwards, for a few hours. It made sense for Daddy to do the holding for 2 reasons. Isla cannot try NNS while on C-Pap and also, Mommy's mastitis has come back. She needs to pump frequently, in the hopes of clearing it up. And Mommy had to pump before the feed was done (it's not safe to move Isla around when her feeding tube is full).

Isla weighs 3235, or 7 pounds, 2 ounces.

 

SUNDAY APRIL 2nd, 2006

Today, Isla was put on 6 hours of low flow again. The routine was the same as yesterday: from 3pm until 9pm, Isla was on low flow; Mommy and Isla did NNS at 3pm; Daddy held at 9pm, after her care and C-Pap was put back on. It was bath night, so Mommy and Daddy both helped with that task. Who knew it takes 2 to bathe a baby! It's just that it's so fun! Isla loves her bath and being towelled off afterwards.

Tonight Isla got a French manicure (er, Daddy clipped her nails for the first time). They were getting long and she had scratched her chin.

Today Isla weighs 3255, or 7 pounds, 3 ounces.

 

MONDAY APRIL 3rd, 2006

Today, the doctors ordered Isla's low flow to be increased to 9 hours, starting when Mommy and Daddy arrived for care and cuddling. Also, they want Mommy to increase her NNS sessions to twice daily. Isla is 37 weeks old and she needs to get into a breastfeeding routine. Low flow was started at 3pm. Mommy tried NNS with Isla then. Isla latched on several times, but for short periods. Mommy asked the lactation consultant to come by tomorrow at 3pm, to see if Mommy is positioning Isla correctly.

Daddy had to go to work, so Mommy stayed through to Isla's 6pm "change up". After dinner, Mommy and Daddy were both back for the 9pm care, cuddling and NNS. Isla was more tired, more interested in sleeping than in breast feeding. There is always tomorrow!

Isla fell asleep after her feeding tube was started and remained sound asleep for 1.5 hours. While Mommy and Daddy were still cuddling, the door next to them opened up and a nurse shouted, "I need help in resuss (the resuscitation room) right away! As many of you who can help. 3 babies and Mommy are crashing!" Our hearts sank and at least 4 nurses charged out of NICU (their buddies would automatically assume care for the babies they were looking after tonight) and down the hall. An alarm at the nurses's station started to ring. Mommy quietly thought a quick prayer to herself.

Although we never heard the details, it turned out okay. But it was a sudden reminder that the three of us are very lucky to be here together. Although this situation had a happy ending, we have met a number of other parents who have not been so lucky - either losing one or more of twins, triplets, or past births in which their child did not survive. Part of the reason the care at Mount Sinai is so successful, is that the families here are encouraged to share, comfort and assist the other families who are here at the same time. The parents all pull together and boost each other up. It's how we get through this whole experience. Also, the staff direct their care towards the parents, as well as the patient. Many of Isla's visitors have commented about the supportive and friendly atmosphere here in NICU. All the parents who helped us when we first arrived are gone now. Their child(ren) have graduated to Level 2 or are now home. In turn, we are helping the newly-arrived parents who are a little lost, stunned to be here so much earlier than planned. We are all looking forward to seeing the friends we have made at the annual Preemie Picnic in June.

Isla is 3305 grams today, or 7 pounds, 4.5 ounces.

 

TUESDAY APRIL 4th, 2006

When Mommy arrived today, Isla's time on low flow had been increased to 12 hours. She went on low flow at 3pm and will be put back on C-Pap at 3am.

Mommy was glad to hear about the increase because when she arrived, Isla was squirming; her C-Pap straps were so tight on her face that they had cut into her cheeks, gouging into the bottom of her eyes. Her eyelids were puffy and bluish. Mommy was not happy! First she loosened the straps and then asked the nurse about getting the wider straps back for the C-Pap cap. They are more comfortable. The nurse spoke to the respiratory therapists, who will make a set for Isla.

Mommy and Daddy did NNS with Isla at 3pm and 9pm. The lactation consultant came by to check and adjust Mommy's positioning. Isla has the right idea, but she has not quite got the hang of it just yet. If Isla does not catch on in within this week, the lactation consultant will have Mommy try a 'nipple shield'. It's more like a soother and easier for Isla to hold. Her mouth is probably just not strong enough yet.

Mommy and Daddy went to the parent meeting tonight. The topic was about the steps to being transfered to your local hospital and being discharged / taking Isla home. Mommy and Daddy had a number of questions because they are not sure how close Isla is to being moved to Level 2 at St. Mike's hospital. They have to find out, in Isla's case, how long she will be kept at Mt. Sinai once she gets back fully onto low flow. NICU is full right now {7 babies were admitted last night} and Isla is quickly becoming a prime candidate to be moved to Level 2 as soon as its possible.

Tonight Isla weighed 3355 grams, or 7 pounds, 6 ounces.

 

WEDNESDAY APRIL 5th, 2006

Today Isla had the wider C-Pap strap put on her cap, but Mommy and Daddy did not see it before they arrived. At rounds, the doctors decided to put Isla onto low flow 'as tolerated'. In other words, they will wait and watch Isla closely to see how long she tolerates low flow. Last time they did this, Isla lasted 44 hours. At best, she will not need to go back to C-Pap at all. The machine (and her custom cap) are standing by at her bedside, just in case she needs it.

Isla was put onto low flow at noon, instead of 3pm (yesterday's schedule). While Mommy was with Isla, she swung down at least 5 times into the 60's and 70's but always recovered on her own. There were no spells, which is one of the big indicators that she is tiring out.

Today, Isla's belly button was an 'inny' for the first time since birth.

Mommy worked on NNS with Isla again today. Preemies are not sent home before they master feeding on their own, whether by breast or by bottle. And it can be a longer process to get them to feed by either method for a number of reasons. First of all, Isla has never had to work in order to eat. Food has been provided via umbilical cord or feeding tube all her existance. Secondly, up until now, anything put into her mouth or around her face is something unpleasant. She has been intubated, or on C-Pap, and had things taped around her mouth for 11 weeks now. She is defensive and often closes her mouth or puts her tongue in the way to prevent anything being put into it. For all these reasons, making the transition from a feeding tube to feeding on his or her own is not usually as easy for a preemie as it is for a full-term baby.

Mommy tried NNS at 3pm, together with Daddy and the lactation consultant. The lactation consultant gave Mommy a nipple shield to help Isla keep her latch. Unfortunately, Isla was much more interested in sleeping. Mommy tried again at 6pm, but Isla was still more interested in snoozing.

Finally, at 9pm, Isla was alert and happy. Mommy introduced the nipple first without the shield. Isla was rooting and interested, but she could not hold on. Next, Mommy used the shield, and Isla 'got it' right away. It makes it easier for Isla to hang onto her latch and figure out what she is supposed to do. Isla continued to root and suck for 40 minutes, even long after her feed was hung up and given to her. Then Isla fell into a contented sleep. Mommy and Daddy were very happy. Mommy continued to hold Isla for 2 hours, until it was time for them to head home to get some sleep themselves.

Tonight Isla weighs 3410 grams, or 7 pounds, 8 ounces.

 

THURSDAY APRIL 6th, 2006

Mommy called NICU this morning to see how Isla made it through the night. The nurse reported she was doing well but she had an apneatic spell at 4am. Mommy asked more about it, and pointed out that the last time Isla had a spell when she was being tested on low flow, they put her back onto the C-Pap machine. The nurse explained that as long as Isla does not exhibit any other signs that she is tiring out, one spell is not a concern. If Isla started having more spells or, as in the past case, had laboured breathing along with the spell, then C-Pap would be re-introduced.

Later in the day, Mommy asked the doctor for further clarification about the spell Isla had that morning. He explained said that since Isla was born prematurely and has chronic lung disease, it is not unexpected for her to have an occasional spell at this stage. However, they would be watching Isla closely to ensure that no other symptoms appear that are cause for concern.

Mommy tried NNS at 3pm and 6pm today. Both times Isla was too tired and showed no interest. Mommy and Daddy are not worried that Isla will not breastfeed. She has shown in the past that she is interested and she roots when hungry. We know, and the lactation consultants assure us, that she will catch on sometime soon. However, Mommy and Daddy are concerned because Isla has been too tired to show interest for 2 days in a row now. The last time this same sequence happened, Isla was being tested on low flow and she tired out.

This afternoon, Isla was swinging a lot, meaning her blood saturation level was dipping down time and time again. Although Isla continues to swing, she has not done it with this frequency in a long time. Also, this afternoon (and later in the evening), she was very fussy, arching her back and squirming a lot. Sometimes this means she is filling her diaper. Sometimes it means she is lying on a cable or her low flow prongs are in an aggravating position on her face/in her nose. Sometimes preemies squirm because that's what they would be doing in the womb anyways. Isla does not usually fuss, and when she does, the source of the problem is pretty evident. Today, we could not find a reason very often for her unrest. It could be that she would have been fussing anyway, but it's just one more thing that could point to Isla starting to get tired by low flow.

The nurse on the day shift suggested not trying NNS with Isla at 9pm as planned. It takes a lot of energy, and Isla needs all her strength right now to deal with breathing.

When Mommy and Daddy discussed Isla's care plan for the evening, the night nurse had the same opinion. In fact, Mommy and Daddy skipped some of the routine care for her, since Isla was sleeping. No bath tonight for Isla. As much as she loves it, it takes a lot out of her. Also, no temp and wiping at her face with a wet cloth. In fact, everything would have been bypassed except her feed, but Isla woke up when she heard Daddy's voice. So, the nurse pointed out that if Isla was going to fuss anyway, she would be better off being held by Daddy than lying in bed. She recommended being very quiet with her. So, Daddy held her while her feed was given by syringe.

The nurse also pointed out that Isla's oxygen requirement had crept up from 150 to 175 to 200 over the day. Yesterday she had been between 125 and 150. This is another indicator that she needs to get her rest if she is going to recover and 'pass' the low flow test.

The nurse will weigh Isla later in the night, and so we will find out that measurement in the morning.

 

FRIDAY APRIL 7th, 2006

Isla's gestational or corrected age is 38 weeks today. She is 79 days old.

Mommy called in this morning. Isla did well through the night and her oxygen requirements were weaned down to 150 overnight. Isla gained 50 grams yesterday. Her weight last night was 3460 grams, or 7 pounds, 10 ounces.

When Mommy arrived, she asked the nurse if there was anything new discussed at rounds. The nurse said, "Yes, Isla is going to Level 2 nursery today! She is first on the list to be moved". This was great news! Isla is one step closer to going home. A lot had to be organised, before Isla could be wheeled down the hall. First of all, a baby in Level 2 had to be transfered out to make room for Isla; the doctor had to write a summary of Isla's chart and approve her discharge from NICU; then the charge nurse in NICU had to coordinate Isla's departure with the arrival of a newborn to fill her space. At first Isla was going to move at 5pm, then 7pm, then sometime throughout the night. Since timing the delivery of any baby is never an exact science, it turns out that Isla did not move to Level 2 today as originally thought.

Mommy and Daddy had not left by the time rounds happened. Daddy had a question for the respiratory therapist about Isla's oxygen. Here requirements were back up again, this time just over 200cc. Was this a sign that she was tiring out? The RT observed Isla's breathing (the depth of her 'indrawing') and decided it was not excessive, that she was not struggling to breath. And she showed no other signs of tiring. All the other medical staff stood around to discuss the matter. In the end, the final opinion was that In the absence of other symptoms, it was not a concern.

Isla weighed 3530 grams, or 7 pounds, 12.5 ounces.

 

SATURDAY APRIL 8th, 2006

Mommy called NICU early this morning and checked with Isla's primary nurse to see if she had been moved to Level 2 overnight. She had not been moved. And her oxygen requirements had been weaned down again, this time to 130cc. The reason for Isla's higher requirements was that she was congested. The primary suctioned her, and presto! she did not need as much oxygen.

Mommy called back later in the morning to ask the day nurse if Isla had been moved and to discuss the day plan. Isla had not been moved. Mommy and Daddy would be in early afternoon, to try NNS and care for Isla.

When Mommy and Daddy arrived, the nurse told them that Isla would be moved just before shift change. The NNS was a non-event. Isla was sleepy. Apparently, she had been fully awake for the nurse at noon, and interested in playing then. Mommy and Daddy grabbed an early dinner and returned in time for Mommy to pump and then escort Isla down the hall, with the nurse and RT manoeuvering Isla's crib, Daddy pushing the dresser with her clothing and linen in it, and Mommy carrying the bathtub. Like a parade, we all arrived at Level 2 at 7pm on the dot! Isla snoozed through the whole pomp and circumstance!

Mommy and Daddy got the orientation to Level 2. Things are a little more laid back. For instance, poopy diapers do not need to be weighed and babies are weighed every other night.

About an hour after arriving at Level 2, Isla had a spell while sleeping. Her heart rate dropped to 80 and her blood saturation was 38. Daddy noticed first and jumped to rouse her. The nurse was at his elbow, and turned up the oxygen.

Tonight was bath night, so about 20 minutes after Isla had stabilised, Mommy and Daddy went ahead with bathing and weighing Isla.

Then, Isla and Mommy tried NNS before Isla's feeding tube was started. Mommy started without the nipple shield, and then added it soon afterwards. Isla was rooting and interested, but when the nipple shield was added, she really started to get the hang of it. Not surprising, since preemies (unlike full-term babies) have no problem using a bottle, but have a harder time breastfeeding at first. The amount Isla received would probably not have been very much, compared to the amount she is fed (today 70ml) every 3 hours, so she was given her full feed afterwards.

Isla weighed 3570 grams tonight, or 7 pounds, 14 ounces.

 

SUNDAY APRIL 9th, 2006

Mommy and Daddy arrived at 1:05pm, an hour later than originally planned. Isla was sleeping lightly and began to stir when she heard our voices. Mommy checked Isla's chart and noticed that Isla had just had a desat at 1245pm while sleeping, and needed oxygen applied.

Then, Mommy noticed milk dribbling down Isla's cheeks. And Daddy noticed white guck in Isla's neck. It was vomit. To our horror, then Daddy noted fresh vomit on Isla's clothes, down her shoulder, arm as well as the bedclothes. As Isla began to wake up, she started to shrug her shoulders, bothered by the vomit in her neck. She must have vomited around the time she desat'd. We were very upset, to say the least and promptly changed her clothes, washed her up and changed her diaper.

....................

MONDAY APRIL 10th, 2006

Tooday Isla had her hearing test done. It was done her primary was on break so Mommy and Daddy did not see the results right away, but there were no problems noted. Mommy and Daddy will have to find out the fill results-

Breastfeeding was unsuccessful at 3pm. Isla would latch and begin to suck, but then pull away and spit it out. The nurse put her on her belly to sleep . After about 20 or 30 minutes, Isla began to thrash around. Luckily, Mommy was there and jumped up even before the alarm went off.

Isla had done a 'face plant' - or tried to shift her head from looking right to looking left. Unfortunately, she was not strong enough to push her head up high enough to clear and she got stuck. She could not breathe and began to cry. Mommy picked her up and turned her over. Just after Mommy placed her on her back, Isla let out a big sneeze. A huge, green blob of mucus came out, blocking the nasal prongs of her low flow gear. Mommy cleaned her up with a swab until the nurse could come over. We had to delay suctioning her, however, because she still had a feed going through her. If she was suctioned, she risked vomiting.

After Isla's feed had been done for about 20 minutes, the nurse suctioned her and she could breathe much better. The nurse had not suctioned her before the breast feeding session, because she had done so fairly recently. At this gestational age, they try to limit the number of times they suction a baby. Their gag reflex is fully developed, and it's highly traumatic for the baby. No wonder Isla could nto feed earlier! She had been too congested.

At 9pm, Isla fed about 10 minutes. Hurray! She was fed with 1/2 the feed by feeding tube.

Isla weighs 3655 grams today, or 8 pounds, [almost] 1 ounce.

 

TUESDAY APRIL 11th, 2006

Today, Isla was given Synergis, the monthly RSV vaccination. This will be the last one until the fall. All babies in Level 2 + NICE were swabbed for MRSA - a dangerous virus. All this happened at noon. After this, Isla was tired and cranky. We don't blame her.

Mommy tried breastfeeding at 3pm, but Isla was still out of sorts and fed less than 5 minutes. At 9pm, Mommy tried again, and fed Isla for about 10 minutes. After that, she was given 1/2 of her feed by feeding tube.

 

WEDNESDAY APRIL 12th, 2006

Isla breastfed less than 5 minutes at 3pm; she fed 10 to 15 min at 9pm and 13ml held back from her full feed (making her supplement via syringe 60ml).

Today while holding Isla, Mommy noticed that Isla's left forearm was an angry red and she was covered with pitechie - or small pinpoints of bruising. Mommy directed the nurse's attention to it; the nurse thought it had been caused by the blood pressure cuff, having cut off circulation as a tournique would do. Later, Mommy thought it was getting worse and asked the nurse about it again, but the nurse thought it was the same. She pased the information over to the evening nurse. Mommy and Daddy asked the evening nurse's opinion, who agreed with the day nurse, but also thought a doctor should see it. She arranged for a doctor to see it, after night rounds, close to midnight.

Tonight was bath night, and Daddy did it all himself. Isla had some visitors tonight. There are rules about how many people can be at Isla's bedside at once. So everyone had to take shifts beside Isla tonight.

Isla is 3785 grams today, or 8 pounds, 5.5 ounces.

 

THURSDAY APRIL 13th, 2006

When Mommy woke up this am, she realised her case of mastitus had not gone away, despite trying remedies at home. It was not as bad as the first case of it, but Mommy did not want it to get to that stage. Instead of going to the hospital for the 9am feed, Mommy went to see her doctor and made it in early for the 3pm feed.

Today, the nutritionist cut the dose of HMF (Human Milk Fortifier) in half. Isla will not gain weight the same way. In fact, continuing to gain weight at this pace would not be heathy for her. Also, cutting back on thr HMF will give Isla more incentive to nurse.

As soon as Mommy arrived for the day, doctor and nurses spoke to her immediately about their observations of Isla's arm. The doctor had examined it; there was no damage to the blood vessels in her arm and her circulation was excellent. They would continue to observe it, rather than put Isla through testing, especially since it looks better today. The doctor ordered that blood pressue should not be taken on Isla's left arm and a big note went up at Isla's bedside station.

Today Isla fed for 20 minutes at 3pm. That is considered a full feed, and so no extra milk was given to her via syringe.

Isla was congested earlier in the day. She has been congested since last Saturday, but it's not getting better. She does not have any other symptoms of a cold, so it's not that. But it is increasingly becoming a problem because it has been affecting her ability to breathe while breastfeeding. Not surprisingly, Isla chooses to breathe rather than eat. Sometimes she is suctioned before feeding, but it is an aggressive thing to do, and then Isla is not always up to feeding after it has been done.

 

FRIDAY APRIL 14th, 2006 (Good Friday)

Isla is 39 weeks or (86 days old) gestational (corrected) age today.

Mommy had planned to go into the hospital for Isla's 9am feed, but she was 'on orders' to rest as much as possible, to fight the mastitus.

Tonight, Isla fed for 20 minutes at 9pm, which is considered a full feed. We did not have to give her any breast milk via feeding tube.

Isla weighs 3850 grams, or 8 pounds, 7.75 ounces. Fed 20 minutes at 9pm.

 

SATURDAY APRIL 15th, 2006

Isla's left arm looks much better, although the mottled colour and pitechie are not completely gone. But today, pitechie showed up on her right arm. It is faint when compared to how her left arm looked, but it was there all the same.

Today, Mommy showed up at 9am to feed Isla. It's time to add a 3rd feeding time to her schedule. Isla did not really feed at any of the times (9am, 3pm, or 9pm). but the evening session was positive. Earlier in the day, the congestion was so bad, that every time Isla tried to start to feed, she had to push away to breathe. At 3pm, she was so frustrated, she was red in the face and pounding on Mommy's breasts with her fists. AT 9pm, however, the congestion eased a little and everything went much more smoothly. Isla sucked and relaxed, but none of it counted as even a portion of a feed, and so her full feed was dropped.

Isla had a desat today while she was feeding. Mommy was holding her, kangaroo-style, and her blood saturation went down into the 40's. Not only does Isla need to be breathing room air before she can go home, but she has to be free of these spells for one week. If she has a spell, the clock has to be 're-set'.

 

SUNDAY APRIL 16th, 2006

Isla had just been suctioned (as well as all her care done) before Mommy arrived for the 9am feeding, but she still sounded really congested. She was unable to feed, so the nurse suctioned her again. Isla did not respond well to it. And her nose was not cleared by the procedure. Isla was so upset, she would not feed. So, the nurse dropped her feed into the syringe and hung it up once again.

Then, she had a spell at 1015 am. Her heart rate dropped to 60 and her blood saturation to 40. Isla was laying on her side, feeding. She turned blue and went limp. The nurse and Mommy clamped her feeding tube, got her upright to rouse her. The nurse noticed Isla's nasal prongs were plugged with mucous. She called the RT and ordered a new set; then she snipped the ends off the current set of prongs so that Isla could get some oxygen while we waited. The plugged prongs probably contributed to Isla's spell.

The nurse put Isla into bed and on her belly, to help with her breathing. We let her sleep through her noon feeding. Istead of waking her to change her diaper and do all the care, the nurse just popped the feed into the syringe and ran her feed.

Mommy tried to breastfeed Isla at 3pm, but she kept on spitting out the nipple shield. Again, she could not breathe. Babies do not learn to breathe through their mouths until they are 18 months old. If her nose is blocked with congestion and her mouth plugged while trying to breastfeed, there is no way she will be able to feed.

After the 3pm attempt to feed, Mommy and the nurse put Isla in her car seat for the first time. Before Isla goes home, she has to pass a car seat test: she has to sit in it for 1.5 hours, without a spell. Today was not a test, but a practice session. It's a different position than Isla has ever been in, and using muscles that have never been used. Usually during the first session, the baby lasts about 10 minutes. One hour later, Isla was still happily snoozing away! Even though she was content, we moved her back to bed. One hour was plenty long enough for her first time.

Isla weighs 3940 grams, or 8 pounds, 11 ounces.

MONDAY APRIL 17th, 2006

Today was a horrible day for Isla. It started out with her eye exam at 9am. The results themselves were fine - Stage 0 retinopathy and her blood vessels continued to grow correctly into Zone 3. Undergoing the exam itself was the difficult part. As Isla gets bigger and older, and as the opthamalogist needs to examine a larger area of her eye, it is more and more traumatic. Shortly after her exam, Isla spelled twice. Mommy arrived during the second spell, when the nurse was calling for more help to rouse Isla.

It is common for babies to have 'off' days after the eye exam. Most of the babies in Level 2 were examined today, so it made it a busy day for the nurses.

Isla had another spell at 1230, 10 minutes after Mommy left for lunch. Mommy did not know about this until evening.

Isla needed to be suctioned at 1430 today. She could hardly breathe through her congested nose. Mommy agreed to have her suctioned, and asked to have it done gently. If Mommy had known Isla had just had a spell earlier, she may not have agreed. Isla was suctioned and then Mommy held her for an hour, to calm her down. She was too tired and upset to suckle.

For one week now, Isla has had problems breathing, due to congestion. It is not a cold. The doctor told Mommy that babies with chronic lung disease commonly have congestion, which affects their ability to breathe, especially during breastfeeding. This congestion has been the main problem this week which has prevented Isla from feeding routinely. Mommy has been discussiong suctioning with a number of the nurses during the past few days. Mommy knew that suctioning was not recommended now that Isla was older, but did not know of other ramifications. It seems that it creates a viscious circle. By suctioning Isla frequently, even once per day, the tubing irritates the lining of her respiratory tract. As it goes down, it knocks into the sides and cuts them. Blood comes up with the mucous. The cuts dry and then are removed the next time with suctioning. The body develops more mucous to fight the foreign object (the suction tube), increasing rather than decreasing the problem. In the past week, Mommy and Daddy have suggested to the nurses that they only suction Isla's nostrils, but that had only been done twice. Some other solution has to be found because suctioning is becoming more and more traumatic.

Suctioning cleared up an extraordinary amount of mucous. Isla sneezed up a good amount of guck after the first sweep of suctioning. Unfortunately, her nasal prongs became filled and had to be changed. This required tape to be removed from her face and a new set fitted around her head. Poor thing! She thrashed around and was so distraught. Mommy did what she could to hold her and calm her, but it did not seem like she could help Isla much.

Mommy and the nurse agreed that Isla should sleep through her 6pm feeding. They would leave her diaper and planned to drop the feed into the syringe so she would get as much rest as possible. Unfortunately, when the nurse checked the position of the feeding tube, she could not hear it. It had to be removed and a new one put in, otherwise, Isla risked aspirating.

Normally, changing the feeding tube is a pretty quick procedure. When the tube was removed, it was covered with mucous plugs and dried blood. Then, the nurse tried to put a new tube in, but it took extraordinarily long. She removed it, rather than continuing to try to push it in. The new, not-yet-installed catheter was covered with mucous and blood. The next attempt, with a new tube, worked. Unfortunately, Isla was beside herself, despite how careful and gentle the nurse had been.

Mommy comforted her until she fell asleep. Every so often, she would begin crying loudly, from her sleep. This was awful! Isla rarely cries, and never for very long. Mommy comforted her each time. Isla was still exhausted at 9pm. It was not a good idea to try to feed, so Mommy and Daddy did her care, and coddled her. We could see her mood change, and become more content and relaxed. We stayed with her until she fell asleep.

 

TUESDAY APRIL 18th, 2006

Today on rounds, the doctor addressed the mottled appearance of her arm. Pitechie were showing up on her other arm now. The doctor had the nurse check the size of the cuff. It was too big for her! It must have been painful, cutting into her arm. It was most likely the cause of bruising. The size was reduced and the doctor ordered blood pressure to be taken on alternate arms.

Overnight Isla had been on 75 cc of oxygen... and she remained on this all day.

Mommy was present during rounds. She discussed a number of things with the doctor, in particular, suctioning. Mommy asked if Isla could be given saline drops instead of being suctioned. She also asked if suctioning were necessary, if Isla could be suctioned ONLY in the nose. Isla has never had any congestion in her chest. The suctioning seemed to be creating more secretions than before. The doctor agreed. She explained how the body could react to suctioning, and as a defensive response, the body could produce more secretions. She felt suctioning was too aggressive for Isla and wrote up an order for saline drops.

Today, Isla had a routine head ultrasound. There was nothing painful about this procedure, but Isla was very upset. She was still jumpy from yesterday's events. She squirmed, flailed and protested by crying throughout. Mommy sang to her, which calmed her for short periods. After it was over, Mommy comforted her. Then she tried feeding her, but after all the drama, Isla was too sleepy to even try.

Today's nurse asked the nurse clinician if Mommy could try feeding 'on demand'. Isla was sleepy from all the drama, but also, she never seemed hungry when woken every 3 hours. By waiting for her to wake up hungry, attempts to feed may be more successful. Also, it would more closely resemble what life will be like once Isla goes home.

After Isla's noon feed (by syringe) was done, she was wide awake. The nurse put her in a car seat at 1:30pm. AT 2:45pm, Isla was going strong! A great sign, since many preemies have not developed their muscles in their torso and stomach enough to support their weight. Soon after being put into the seat, they spell. AT 2:45pm, the nurse put her back into bed - not wanting her to get too tired out and unable to feed - sometime between 3:30 and 4:30pm.

AT 4:15pm, Isla was still sleeping and Mommy had to wake her up. Although we are demand feeding today, Isla needs to eat every 4 hours. You should not let a baby go longer than 4-5 hours between feeds; otherwise, she will not gain weight as she should. Mommy did her her diaper, gave her saline drops, and took her temperature. Isla slept through it all. She would not wake up to feed. At 5:15pm, her feed was dropped into a syringe.

Mommy was not upset or surprised. Isla was still exhausted from the past few days of suctioning, from yesterdays issues and from the ultrasound today. Mommy will demand feed tomorrow again.

Isla weighs 4055 grams, or 8 pounds, 15 ounces.

 

WEDNESDAY APRIL 19th, 2006

Isla is 90 days old today (but her corrected age is minus 2 days).

On rounds, the HMF (Human Milk Fortifier) was discontinued. Isla's weight gain has been exceptionally good, and she no longer needs the assistance. Mommy and Daddy were told that her weight gain may not be as dramatic from here on. It may even be negligible in the short run.

Isla was not suctioned yesterday; she received saline drops and sounded better. Today she received drops and needed suctioning - but only in her nose.

Isla was too sleepy to feed at noon and did not seem hungry. No amount of coaxing, tickling worked. Her feed was dropped. At 1pm, she was put into her car seat. She slept happily until 3pm, when the nurse said she should not be kept in too long. She did not want her to be too tired out from sitting up, using muscles in her torso and stomach that had never been exercised. We didn't want her too tired to feed at 4pm!

We woke her up at 4:15pm. She was too sleepy and too congested to feed. Mommy tried to get Isla to feed until 5:15pm, and then the nurse dropped her feed. Finally, her feed at 8:30pm was successful - mostly! Isla's congestion had cleared up significantly since Monday. Isla made it through 1/2 a feed (or 10 minutes), before she became too congested to continue.

We will demand feed again tomorrow.

 

THURSDAY APRIL 20th, 2006

On rounds this morning, the doctor ordered that Isla's blood pressure be taken with the mobile unit, instead of the bedside unit, which gives a much more reliable reading. Isla's BP is on the high side (apparently, this is common for babies with chronic lung disease) and she wants to monitor it. The doctor ordered also that the BP be taken from Isla's leg (alternating each time) as it gives a more accurate reading. A larger cuff is needed for Isla's leg - and the size was determined on rounds. Mommy changed her sign at the bedside immediately.

The RT changed the equipment that alters / shows how much oxygen is being given. Now that Isla is in the home stretch in reducing her oxygen, we need to be able to adjust it more finely, by a few points at a time, than the previous equipment allowed.

Breastfeeding continued to be challenging today. Mommy tried to wake Isla at 1pm, but she was too drowsy to feed. At 5pm, she was still groggy, but Isla had a proactive, determined nurse assigned to her. The nurse tickled Isla, undid her outfit and then got out the cold cloths. At first, Mommy was taken aback and thought that cold cloths applied to Isla's head and tummy was too much, but Isla immediately opened up her mouth and latched on. She fed for 10 minutes. She would have fed longer, but her nose prongs were out. At first, Mommy left them out, but then Isla's blood saturation started to swing down. After a few minutes, it did not self-resolve, so Mommy interrupted Isla to fix her prongs. Isla would not re-latch on after that.

Isla had a lot of gas today. She always squirms towards the end of her feed, but since the HMF was eliminated, she squirms around in a lot of pain. She even cried a little while straining. Mommy rubbed her belly, which seemed to help. She had not passed a stool today, just a smear, so Daddy tried his patented belly massage. No luck. The nurse tried some rectal stimulation, which did not upset Isla at all. Still no luck. Poor Isla. The nurses say it's normal for a term baby to have less stool, but she seems uncomfortable. We hope this gets better soon.

Tonight was bath night. The hot water was turned off this evening, so Isla's nurse drummed up a kettle and we were in business. Unlike most babies, who are ready for bed after their bath, Isla was alert and ready to feed. She fed 18 minutes, and no supplement was given.

Isla weighs 4085 grams, or 3 grams short of 9 pounds!

 

FRIDAY APRIL 21st, 2006 - HAPPY BIRTHDAY ISLA!

Today is Isla's due date. Her gestational age is considered zero or newborn!

Since Isla was born, Mommy has pumped 50,237 ml (or 50.2 L) of breast milk.

Isla remained at 50 cc oxygen overnight.

Bloodwork was done this morning. Isla's haemaglobin was 114, which is excellent news. Her white blood cells and reticular count were good too.

Isla had her hearing test done today. The audiologist was still in Level 2, and she came to discuss the test with Mommy. Today, Isla's left ear was tested (her right ear was tested on April 10) and it failed. In addition to a hearing problem, other reasons for a failed test could be: congestion, small canal, improperly positioned sensor. Isla is at more risk for hearing loss, due to her low birth weight and premature birth. As Mommy and Daddy have learned in this whole process, they will hold off being worried until the test is repeated next week.

Isla spent a lot of time today squirming from gas and trying to poop. This morning, she even desat'd trying to do so. Everytime, Mommy rubbed her belly or sat her up to rub/pat her back.

At 2pm, Mommy nursed Isla for 15 to 20 minutes. Hurray!

Afterwards, Isla slept for 45 minutes. Then, Mommy moved her back to bed to change her diaper, etc. She and Isla were playing together, when Isla coughed. Immediately, Isla went blue, limp and the alarm shrilled. Isla desat'd to 50, and her heart rate dipped to the 70's. Two nurses ran over. First they stimulated her, then applied oxygen. Isla did not respond. Finally, they had to 'C-Pap' her, by applying oxygen with force, using a bag that pumped oxygen into her and inflated her lungs. Isla revived within seconds.

One of the nurses commented that Isla looked scared after she revived. And she did. Mommy hugged her, cooed and reassured her. Isla fell asleep soon afterwards, which is common after a spell.

Breastfeeding did not work at 6pm, but it worked at 10pm... thanks to using cool towels on Ms. Isla. She opened up immediately and started to nurse.

 

SATURDAY APRIL 22nd, 2006

Today, Isla breastfed twice out of three attempts today. At 1:30pm, she was too sleepy to waken to feed. Even cool clothes did not rouse her. But she fed again at 6pm and 10pm - and no supplement was given.

Isla had so much gas today. Mommy spent most of the day burping her and rubbing her back. Also, Isla was very congested most of the day. Before her 6pm feed, Isla was too congested to eat. She sneezed up mucus. Mommy helped the nurse suction Isla's nose. Afterwards, she sounded much better and was able to feed.

Daddy tried to turn Isla's head towards the right side because she always seems to favour her left side. Immediately, Isla turned her head back towards the left after Daddy had finished. Daddy discussed this with our primary nurse and together they studied Isla. Perhaps she was subluxated; but she did not seem to be in pain. Yesterday she did not pass her hearing test in her left ear. It was too early to jump to conclusions, but if Isla had a hearing problem in her left ear, that could be the reason she kept her right ear up. When someone talked to her from the left side, however, she seemed to respond. Or, most likely, Isla could just have developed a preference for turning her head to that side. The primary nurse suggested that a specialist should examine Isla.

Isla lost a bit of weight (60 grams or 2 ounces). She is now 4025 grams, or 8 pounds, 14 ounces. While we don't want her to lose a lot of weight, it is not unexpected. Isla had her HMF discontinued. Changing her diet significantly + now Isla is feeding 'on demand' when Mommy is at the hospital could both impact temporarily on her weight gain.

 

SUNDAY APRIL 23rd, 2006

Isla passed a large stool at 6am. Finally! Hopefully, Isla will feel much better now.

At 7am, Isla had a spell. Her heart rate dipped to 70, and she desat'd to 49. The nurse told Mommy when she arrived. She said Isla was straining and trying to pass stool again. This may be the cause of the spell.

Today, breastfeeding was successful only in the early afternoon. Mommy tried to feed her at 1:30pm, but it took one half hour to get Isla to wake up and feed. Daddy burped her and put her back to bed. When he settled her, Isla turned her head to the left again. He tried to re-direct her head to the right, but Isla insisted on facing left. Daddy and Mommy really want the doctor to examine Isla soon.

Isla weighs 4085 grams, or 8 pounds, 15.9 ounces.

 

MONDAY APRIL 24th, 2006

The hearing test was not repeated his morning, so it will likely be done on Friday morning.

Breastfeeding at 2pm was successful, only after the lactation consultant jumped in to help. At 5pm, Isla was too sleepy to feed, but at 10:30pm, she was alert and ready to feed. It is not uncommon for preemies to be too sleepy to feed.

Isla had to be suctioned again today. The nurse suctioned her nose and dropped saline too. Isla sounded beter afterwards.

The nurse was unable to get a blood pressure reading today. She tried a few times. Isla hates having it done, possibly since her arm was so mottled and purple a few weeks back. She squirms around quite a bit and squawks. The second time, the nurse tried to take it while she was sleeping, but Isla woke up.

During separate conversations, the doctor and nurses talke about the criteria for Isla to go home: she needs to be weaned off oxygen, and she needs to be able to breastfeed and/or bottle feed. Mommy wants both means to be introduced to Isla prior to departing with the bottle to be introduced only after Isla was established at breastfeeding.

Isla weighs 4120 grams, or 9 pounds, 1 ounce.

TUESDAY APRIL 25th, 2006

The nurse was unable to get a blood pressure reading again today, as Isla was flailing around in protest. Isla remained in 30 and 40 % oxygen all day. She only passed a few small stools, and so she had a lot of gas pain.

When the nurse suctioned her in the morning, she got a lot of guck up - 2 full catheters.

Isla needed to be fed by NG tube (aka nasalgastro tube/syringe/bolus/gavage feed) at 9:30am and 5pm. The rest of the time, Mommy breastfed Isla: at 12:30 (13 minutes), 8:30 (22 minutes) and 10:30 (5 minutes). At 11pm, Mommy and Daddy thought Isla wanted to eat more, because she kept putting her fist in her mouth, but when put to the breast, Isla didn't eat. She had been hungry at 10:30pm however, because she gave Mommy a blood blister on her nipple. All in all, it was a pretty successful day with 2.5 feeds achieved.

Isla weighs 4150 grams, or 9 pounds, 2 ounces.

 

WEDNESDAY APRIL 26th, 2006

Today, Isla was moved from the quieter room she was in to the common area of the nursery. Four babies from the NICU have tested positive for MRSA and were moved to this room. It was designed as an isolation room. There will be a separate set of nurses to care for these babies. MRSA is spread from skin-to-skin contact and it is resistant to most antibiotics.

Isla's blood pressure was good today: 96/40. They are still watching it as she tends to hover with the diastolic pressure in the 100 - 110 range, which is on the high side for a preemie.

Today was pretty successful at breastfeeding again, with Isla feeding a total of 45 minutes: 13 min @1230; 6 min @6pm; 14 min @9pm; and 12 min. @10459m. Mommy was tired but ecstatic.

Also, Isla passed a HUGE stool. It was so large, it was up to her waist. Mommy and Daddy were thrilled because Isla has been writhing in pain for the past 4 days. Of course, as is his luck, Daddy was the one to change this diaper. After shouting in surprise (and scaring the nurses again). Daddy spent quite a bit of time cleaning Isla up. After all that, Daddy weighed the diaper - even though we don't have to do this anymore now that we are in Level 2. The contents weighed 70 grams, or 2.5 ounces. Hurray, Isla! Mommy and Daddy hope you will be pain-free now.

Isla's oxygen has been 30 grams in the past few days, but today she needed it up around 40 %.

After a discussion with the lactation consultant, the clinical nurse, Mommy agreed to weigh Isla daily. In addition, Mommy agreed to test weigh Isla before and after each feeding - starting tomorrow. Although this technique is not used very often, there was a concern about how much Isla was gaining from being breastfed. Mommy has noticed that her milk supply is down a little - partly from the pain of the blood blister. Everyone wants to ensure Isla is getting enough to eat.

While Mommy was at the hosital, Isla had to be fed by NG tube only once, and partially, at 6pm. The was breastfed: 10 min @1230pm, 6 min @3pm, 15 min @9pm, and 15 min @11pm.

Today, Isla did not require suctioning for the first time in many days.

Isla weighs 4145 grams, or 9 pounds, 2 ounces.

 

THURSDAY APRIL 27th, 2006

Isla had to be suctioned - nose only - early this morning. The nurse collected less than on Tuesday, one full catheter.

Isla was on 40 cc of oxygen all night and through the day. Her blood pressure was 96/64.

On rounds, the doctor decided the focus is getting the breastfeeding going well, and not so much weaning the oxygen these days. If she is sat'ing 100 for many minutes on end, then she should be dropped down. If she is sat'ing 99, the risk of retinopathy is not a concern because Isla is term now, so she does not need her oxygen weaned like she used to.

Today Mommy started test weighing Isla, or weighing her before and after each feed. It's supposed to be quite accurate - that is, if you have a baby who does not squirm and move around at all! Mommy's milk volumes are dropping for some unknown reason (although it's not a mystery that Mommy needs a lot more sleep and a lot less stress). Unfortunately, test weighing was not always successful from the scale shutting off mid-process to Mommy abandoning the procedure because Isla was getting colder and hungrier. Mommy has a very short window to get Isla to feed, otherwise she goes to sleep.

Today, Isla was so sleepy at noon, that she was finally given her feed via tube at 1:45pm. Mommy was only able to breastfeed at 5pm and 7pm. Isla was again too sleepy at 9pm, and so received her feed at 9:30pm via tube again.

Mommy, the clinical nurse, and the bedside nurse had a discussion about cutting the volume of Isla's feed before Mommy comes in. When Isla gets a full feed, she does not wake up in 3, sometimes more than 4 hours. She is too sleepy and not hungry. The clinical nurse did a lot of calculations before she agreed how much to cut down. We want Isla to wake up hungry, but we don't want her to lose weight either. Starting tomorrow, Isla's 9am feed will be cut from 83ml to 60 ml.

Mommy went to the lactation meeting for all Mommys with babies at Mt. Sinai. One of the recent grads, Sienna-Lee and her Mommy, Nadine, were there to offer advice to Mommys about breastfeeding. Sienna-Lee spent 4 months at Mt. Sinai. She is now 10 pounds and will head to Jamaica in one month to meet relatives. It was very good to see them again.

Isla was put in her carseat at 1:45pm with her feeding tube taped up on the post to her crib. She stayed there happily until 4:30pm, when Mommy decided to give her a break.

The nurse discussed the importance of putting Isla in her carseat at this stage. Not only does Isla have to pass the test of sitting in it for 1.5 hours before she can be discharged, but its important from a developmental standpoint. Isla is term now, and so needs to be up, involved in the world, not laying on her back all day. Mommy and Daddy hang birds from her mobile on the carseat for her to look at, or turn on the mobile so she can watch it moving around. The nurse suggested also giving Isla things with different textures to hold.

Isla weighs 4190 grams, or 9 pounds, 3 ounces.

 

FRIDAY APRIL 28th, 2006

Isla had her hearing exam for her left ear again this morning, and received another 'refer' (or fail) result. Isla still has congestion, and now they think she has a cold, and so the test will be repeated once the congestion has cleared up.

Today, Isla's feed at 0930 was cut to 60ml (instead of 83) for the first time. Isla started to stir at 1215. The nurse swabbed her for MRSA at 1220, and Isla went back to seep. Mommy tried to wake her at 12:45 and get her to feed until 1:45pm. Finally, she had to be fed by feeding tube.

Isla was in her carseat today from 5pm until 7:40pm.

Isla was off low flow for 20 minutes today. Her prongs had slipped off her nose and her blood saturation numbers were not dropping. The nurse watched Isla's numbers for 20 minutes to see how long she tolerated being on room air only. After 20 minutes, her blood saturation began to drop, and so the nasal prongs were put back in. Go Isla! It was great to see her last so long.

Mommy was able to breast feed Isla today at 4pm (18 minutes), 8pm (5 minutes only, so she needed to be fed by tube), and at 11pm (20 minutes).

Mommy and Daddy postponed Isla's bath tonight. It was too cold in the nursery and it was too late.

Isla weighs 4210 grams, or 9 pounds, 4 ounces.

 

SATURDAY APRIL 29th, 2006

Isla was born 100 days ago! That's a LONG time to spend at a hospital.

Isla was suctioned at 9am today. Only trace amounts were there.

Isla's feed was cut back to 60ml for her 6am + = 9am feeds, in the hopes she will wake up hungry earlier than 4 or 5 hours. However, Mommy tried to wake her at 1230pm, to no avail. Mommy tried to breastfeed Isla at 1230pm, 3pm, and 4pm. She had to be fed via NG tube once and finally she fed for 11 minutes at 5pm.

Mommy's milk flow and volume are definitely decreasing, for some unknown reason. While Mommy's milk volume still enough to feed Isla, there is no guarantee they will not decrease further. Also, it's hard to deteremine the pace of Mommy's flow. Mommy met with the lactation consultant to discusss. She recommended getting a prescription for domperidone to assist.

Isla enjoys her car seat. She was in it, quite happily, today twice: 9am to noon and 6pm until 8pm.

Isla was down to 25cc of oxygen all day!

Isla weighs 4250 grams, or 9 pounds, 5 ounces.

 

SUNDAY APRIL 30th, 2006

Isla's oxygen was put down to 20cc at 6am. It lasted 5 hours before it had to be put back up to 25cc.

When Mommy arrived at the nursery, Isla was asleep in her car seat and quite content. She had been there since her 9:30am feed. After 3.5 hours, she was still asleep, so Mommy woke her up at 1:15pm to provide her care and try to feed her. At 1:30pm, Isla fed for about 11 minutes. AFterwards, Mommy sang to her and read her "Love You Forever", by Robert Munsch. Mommy has read this enough times, she does not need the book. AND Isla recognizes the story now. Then she played with Isla until she fell asleep.

AT 4:30pm, Isla was starting to stir, but it was a 'no go' getting her to wake fully to feed, so she was fed by tube at 6pm. She was put in her carseat before being fed and slept there until 9pm. Isla breastfed at 9pm for 15 minutes. Yippee!

The baby next to Isla has tested positive (but not infected) for MRSA. It is a different strain than what the four babies (mentioned on the 26th) had. Since it is not an airborne virus, the baby will not be moved to an isolated location. There is a screen around his bedspace; he has a separate nurse to care for him; everyone has to put on gowns and gloves to prevent the spread of the virus. All the babies in Level 2 were swabbed again.

Isla weighs 4245 grams, 9 pounds, 5 ounces.

 

MONDAY MAY 1st, 2006

Isla had 4 successful feeds today! She fed at 12:30pm (16 min), 3:30pm (12 min), 6:40pm (11 min) and 10pm (15 min). She is getting the hang of it!!!

Isla remains on 25cc of oxygen today. On rounds, the doctor decided not to wean Isla down as much as the nurses had been trying. In her experience, when babies get down to a low amounts, to decrease oxygen by even 5cc daily is too aggressive. It has a bigger impact than when the oxygen is higher. Also, she wanted the focus to remain on getting the breastfeeding going. Once that was achieved, then the oxygen could be weaned again. Her orders were that Isla should remain at 25cc; she would assess daily and give the order when to start to wean again.

When Mommy arrived today, the nurse had Isla in her carseat and was playing with her to keep her awake until Mommy arrived to feed her. As mentioned above, it went well!

Isla (and all the babies) was swabbed for MRSA today.

Mommy got a prescription for domperidone today to help increase her milk volumes.

Isla was really gassy all day. Mommy and Daddy stayed really late, trying to help Isla work her discomfort out.

Isla weighs 4270 grams, or 9 pounds, 6 ounces.

 

TUESDAY MAY 2nd, 2006

When Mommy arrived today, Isla was in a pram. Her music box/mobile had been placed above her for her to look up at it. The nurse was trying to keep her awake again. Obviously, cutting back Isla's feed is working. She is now waking up after 2.5 hours.

Today, Isla fed 5 times successfully! At noon (19 min), 2pm (7 min), 3:40pm (10 min), 7:30pm (20 min), 10:20pm (12 min).

During the late afternoon, Isla was alert and wakeful. As she grows, she is becoming more and more wakeful. When Mommy put her in her carseat for a while today, she watched her mobile intently.

Today, Isla's neighbour, Ryan went home. Any day a baby goes home, it's a celebration, but today was very special. Ryan was a twin, and his twin brother has been at Sick Kids' Hospital since birth. In addition to the reasons he was sent to Sick Kids originally, he contracted an infection a few weeks ago. Tim became gravely ill. His Mommy and Daddy spent 3 days at the hospital non-stop. Finally, Tim was dying. In an effort to help, Ryan's nurse put him in a pram and took him through the underground tunnel to Sick Kids' Hospital across the street. Precautions were taken to keep Ryan safe; and he was put in the isolette with his brother for a short while. An hour later, his Mommy called the nurse. Tim had miraculously turned the corner. Tim's oxygen requirement had decreased by 40%. Tim continued to heal and never looked back.

Today Ryan went home and his brother went to a Level 2 nursery at a local hospital close to where Mommy and Daddy live. We just do not know all there is to know about how babies, and twins (or multiples) communicate/interact with each other. What seemed like a last ditch effort, was a very wise move on the part of the nurse. There are so many stories we have seen during our stay here. And each one is special; many are heartwrenching. It was wonderful to see a very happy ending to this one.

Tonight, Daddy went to the parent meeting, but Mommy was busy feeding Isla. They had former graduates (parents with their children) there to answer questions and support current parents. One parent explained how they monitored what things they did (or did not do) with their child and in what ways they monitored how their child interacted with the outside world once they were home. Thankfully, they had no problems, but another baby they knew at the time was not so lucky. His parents were so happy to be home, and had so much to do, they just took their child along everywhere. Unfortunately, the baby got sick quite often, seriously deteriorating his lungs. In the end, his Chronic Lung disease became much, much worse. When Isla comes home, Mommy and Daddy will have to be very diligent, while somehow regaining some sense of normalcy.

Isla was swabbed for MRSA again, after Mommy and Daddy went home.

Isla lost her 25 gram gain, and now is back to 4245 grams, or 9 pounds, 5 ounces.

 

WEDNESDAY MAY 3rd, 2006

Last night, Isla was fed one bottle through the night. The nurse started with only one, to see how she handled it. The rest of the feeds were done through the NG tube. The nurse reported she put her tongue in the way and does not open her mouth wide enough - (as she does still from time to time when nursing. And Isla was uncoordinated in sucking, swallowing and breathing at the start of the feed. Overall, the feed seemed to go well.

During the day, Isla nursed 4 times: 12pm, 3:15pm, 7:20pm, and 1045pm. During 3 out of 4 feeds, she choked while feeding. It could be that the domperidone is starting to increase Mommy's milk flow. If so, Isla has to learn to deal with (suck, swallow, and breath at once) more milk coming at her.

During one of the choking episodes, Isla looked scared afterwards. After the other 2 episodes, she was sleepy.

Tonight was bath night. Since Daddy has less time with Isla each day, Mommy insists Daddy be the primary bath giver + 'drier', while Mommy assists, organises the bath water, setting up and putting away everything. A lot is mentioned in this diary about all the things that Mommy does while here 12+ hours a day, but it should be recognised that Daddy has a big contribution too. Daddy is the one keeping things together at home. He works, runs all the errands, drives Mommy back and forth to the hospital, cooks Mommy's breakfast, and brings her meals to the hospital, does all the laundry, cleans up the kitchen. In his spare time, he works on getting things ready for Isla when she comes home.

Isla weighs 4270 grams, or 9 pounds, 7 ounces.

 

THURSDAY MAY 4th, 2006

Isla's blood pressure is on the high side still. Often, babies with chronic lung disease have high blood pressure and grow out of it. The doctor has been monitoring Isla's pressure for quite a few weeks now. She has arranged for the nephrologist from Sick Kids' Hospital to come exam in Isla tomorrow. She does not think there is anything intrinsically wrong, but since the kidneys create hormones that control blood pressure, she wants to have some baseline tests done before Isla is discharged. If Isla's pressure gets much higher, she could be put on some medication. Also, the nurse mentioned that a kidney ultrasound may be done.

In preparation for the nephrologist's visit in the morning, the nurses had to do a number of things to prepare: they collected urine samples and bloodwork; and they took four blood pressure readings - one on each limb.

Isla breastfed 5 times today between noon and 11pm. Once she choked while feeding, perhaps due to increased milk flow.

The nurse gave Isla a bottle, using the orthodontic (slow flow) nipple, once tonight to see how she handled it. Apparently it went well. The rest of the night, Isla was fed by NG tube. It will be a happy day when that feeding tube comes out, once and for all.

Isla lost 25 grams and now weighs 4245 grams, or 9 pounds, 5.5 ounces.

 

FRIDAY MAY 5th, 2006

The resident nephrologist was about to examine Isla when Mommy arrived. She did her prelim exam and asked Mommy a number of questions, mainly about family history. She mentioned the possibility of doing an ultrasound of Isla's kidney.

This morning, the neonatologist (the regulart doctor overseeing Isla's care) ordered her oxygen to be weaned down to 20cc and for it to remain at 20cc over the weekend to see how Isla tolerated it. She also ordered that Isla needed to have her blood pressure taken twice daily - once per shift.

Also, the discharge nurse asked Mommy if Isla had a pediatrician yet. I said no, but we were with St. Michael's Hospital. The discharge nurse assured Mommy she could refer Isla to a pediatrician without a problem. That's one less thing to do before Isla leaves!

Mommy saw the audiologist in the unit and asked if Isla would be having the hearing test of her left ear repeated today. The audiologist said no, they wanted to ensure Isla's congestion was gone before re-trying it.

At noon, the resident nephrologist returned. The bloodwork and urine tests were normal. The blood pressure was high, but it was uniformly high on each limb. They wanted to do an ultrasound, but it would not be done before Tuesday.

Isla weighs 4280 grams, or 9 pounds, 7 ounces.

 

SATURDAY MAY 6th, 2006

Isla's primary gave her a bottle, about 3am. Just as when Isla learned to breastfeed, she did not open her mouth enough and kept putting her tongue up (common with preemies who are 'protective' after months of being poked and prodded). After 10cc, she choked and desat'd to 70's. She recovered slowly and then took another 20cc. The last 50+ cc were given by NG tube.

Today, Isla's blood pressure was 89/49 at 8am. Good! Not all the readings taken are high, so the doctor continues to monitor her. Her arm is getting mottled again and the pitechie are starting to show up on her arm again. In case the nurses were using too large a cuff on Isla's arms, Mommy put up a sign by Isla's crib: BP - Arms #3 cuff; Legs #4 cuff.

At 0900, Isla sneezed and expelled a huge plug. The nurse suctioned (nose only) and removed a lot of guck. Isla sounded much better afterwards.

Isla is still on 20cc of oxygen.

Isla had a lot of gas today. At 4pm, she had so much gas she could not feed until 5:30pm. She also fed today at 9pm and 10:30pm. Hooray!

At 11:30pm, Isla threatened to root but she fell asleep. Mommy and Daddy tiptoed home at 11:45pm.

Isla gained 70 grams, now weighing 4350 grams or, 9 pounds, 9 ounces.

 

SUNDAY MAY 7th, 2006

Isla bottlefed just after midnight and took 75cc of milk with the regular nipple. She had to pace herself to suck, swallow and breathe all at once. Isla did well.

At 3am, the nurse gave Isla's feed by tube and then tried to bottle feed her again at 6am. Isla had to pace herself at the start. She was a little uncoordinated this time and desat'd to the 80's. She recovered with the removal of the bottle and finished the full 88cc's. Isla was more coordinated at the end.

Isla's blood pressure today was: 115/79 at midnight and 101/66 at noon. Pressure was taken from the legs today.

Isla was on 20cc of oxygen all day.

Isla breastfed only at 1pm (for 26 minutes) today. The rest of the day she fed via feeding tube.

Tomorrow is Isla's eye exam. Mommy will be at the hospital early. Even though the results were excellent at the last exam, Isla really found the exam itself difficult. She desat'd and had to be c-pap'ed with the oxygen bag three times that day. Mommy will be there first thing, in case the exam happens early in the morning.

Isla lost 20 grams, weighing 4330 grams or 9 pounds, 8 ounces.

 

MONDAY MAY 8th, 2006

We found out at 2pm today that Isla's eye exam was postponed until Tuesday. Mommy and Daddy are anxious about Isla having an ultrasound and eye exam on the same day. Usually, the modus operandi is to do one thing only in a day. Although an ultrasound is not painful, or even invasive, Isla hated her last one. She squawked and thrashed about the whole time.

Isla was bottlefed once last night, and did well. Her oxygen today was at 20cc all day, except from 1 to 3pm, when she was weaned to 18cc. And her blood pressure was 109/41 at midnight and 116/61 at 9am.

The nephrologist, who is following Isla's blood pressure issues, wants all further readings to be done on Isla's arms. If her pressures start to climb over 120 (diastolic measure), then she will recommend sending Isla home with blood pressure medication.

Isla breastfed 5 times today for a total of 95 minutes.Hooray!

Daddy discussed with Isla's primary the possibility of having a meeting with the doctor to review Isla's health. He and Mommy would like to a prognosis, to discuss how her care needs to be handled after she comes home, and what precautions need to be taken. The primary will arrange a meeting for Mommy and Daddy with the doctor, herself, the social worker and any other departments that are pertinent. It's called a 'Care Conference' and everyone involved with Isla's care sits in the meeting.

Tonight, Daddy played with Isla as usual. He stuck out his tongue at Isla, and she mimicked him by sticking out hers. We had heard babies mimic at this stage, but it was still amazing to see it happen. Although Isla didn't mimic all Daddy 's goofy faces, she watched him intently.

Isla was swabbed for MRSA after Mommy and Daddy left.

Isla weighs 4425 grams, or 9 pounds, 12 ounces.

 

TUESDAY MAY 9th, 2006

Isla's primary set up the Care Conference for Thursday, May 18 at 1pm. Mommy and Daddy wrote down quite a few questions right away.

Isla's blood pressure was 111/55 at 1am and 101/57 at 10am.

Isla had her kidney ultrasound today at 11am. Mommy gave her the soother before, held her hand and talked to her throughout the whole 45 minute procedure. It worked like a charm! Isla was fine. She sat'd 97 to 99 the whole time. The kidney ultrasound is the most difficult to get with infants because if they squirm, the image is distorted. Towards the end, Isla fell asleep!

While the ultrasound was done, Isla was on 18cc of oxygen. Afterwards, her nurse weaned her successfully to 15cc. Mommy got on the phone immediately after to give Daddy the great news.

Isla breastfed today 6 times with a total of 1 hr, 46 minutes!

The opthomalogist arrived at 5pm to examine all the babies scheduled. Isla was third in line, and the doctor took less than 40 seconds per eye. This was the first time Mommy stayed in the room. Usually, parents are not encouraged to remain during the exam. Of all that you go through here, this is the hardest thing to face on behalf of your child. First, the results could be very serious. Second, the baby is uncomfortable and frightened. Mommy did not watch, but she stayed close so she could comfort Isla immediately after the exam.

This time around, Isla was a superstar! She is 3 weeks older, more mature, than the last time she was examined. She handled it amazingly well, sat'ing 97 to 99 during the exam. A few times, her blood saturation hit 100! Her heartrate was stable too. There was no threat of a spell afterwards. Mommy picked her up to hold her and cuddle her for the next hour. Isla fell asleep until Daddy arrived shortly after 6pm.

What a surprisingly great day!

Isla weighs 4415 grams, or 9 pounds, 11 ounces.

 

WEDNESDAY MAY 10th, 2006

Isla pulled out her feeding tube, along with the tape one her face that secured it. There is a deep gouge mark on her face. I guess she really didn't want the tube in anymore! The nurse put some polysporin on it.

The plan now is to keep the NG tube out and see how Isla handles being bottlefed throughout the night. If she tires out, it will be put back in. And if she cannot be woken to feed during the night, it will have to be put back in. Of course, the irony is that process would wake her up. We'll have to see what happens.

The ultrasound report of Isla's kidney is not yet in.

Today, Mommy learned how to give Isla her vitamins and iron with milk. Last week, the nurse had shown Mommy and Daddy how to put the vitamins directly into Isla's cheek with an eye dropper. When Isla received her Trivarsol, she choked and went blue briefly. Since Isla will have to go home with vitamins and continue to take them until she is one year corrected age, Mommy was keen to learn a different way to administer them... especially since the trivarsol is bitter. So, the vitamins were added to 22cc of breastmilk, and Mommy gave them to Isla by bottle. This was the first time Mommy has given anything to Isla by bottle. Up until now, we have kept bottle time to when Mommy is not around, so Isla continues to associate Mommy with breastfeeding.

Isla is on 18cc of low flow now.

Isla loves her car seat. Today she sat in it, off and on throughout the day for more than 4 hours. She will probably have no problem passing her car seat test: before she is released from hospital, she has to sit in the car seat with the straps as tight as they would be on a car ride without desat'ing.

Today we learned that baby Findley has made it home. Findley was born 2 weeks after Isla and she was the same gestational age (26 weeks) as Isla. Quite a few weeks ago, Findley transferred to a Level 2 nursery at a hospital closer to home. Mommy and Daddy are so happy for the three of them. It's always a celebration when a baby goes home. It does make Mommy and Daddy realise, however, that although Isla is growing so quickly, she has her own issues (her lungs) which require her to progress at a slower pace.

Isla weighs 4410 grams, or 9 pounds, 11.5 ounces.

 

THURSDAY MAY 11th, 2006

Polysporin has been ordered for Isla. It will be applied twice daily to the gouge on her face.

Isla's blood pressure was taken twice today: 89/50 and 106/57.

Mommy went to the lactation meeting today. It's been a while since Mommy has gone. Breastfeeding has been going well, so it has not seemed necessary. But Mommy wanted to make sure she was positioning correctly. It paid off. Mommy learned a new tip. And the pizza served during the lunch meeting saved Mommy time!

Our primary nurse bottlefed Isla last night. She said Isla was slow, but had good, eager and strong sucks. She was still uncoordinated and took frequent stops for the last half of the feed and kept forgetting to breathe. During one feeding, Isla choked and her heartrate dipped to 70 and she desat'ed to 68. She recovered with milk stimulation. During the second feeding, Isla did not choke, and when she was about halfway through, Isla became coordinated and finished her bottle.

Isla continues to be on 18cc of oxygen today.

Isla has been 'bound up' these past few weeks, since the dietician stopped her HMF (Human Milk Fortifier). Normally, HMF itself is binding, so that is a surprising result. Perhaps the iron supplement is causing it. Mommy and Daddy were happy that Isla had 2x large stools early in the morning. She must feel so much better.

Isla weighs 4450 grams, or 9 pounds, 13 ounces.

 

FRIDAY MAY 12th, 2006

Isla is 43 weeks today, or the corrected age of 3 weeks old.

Isla took almost an hour to feed from the bottle, the nurse said this morning. Mommy fed her 6 times today, for a total of 82 minutes.

Mommy called her doctor today because her milk volumes had not incresed much since starting the domperidone. Granted, Mommy is on the lowest dose possible. The doctor approved increasing the dose to double gradually over the next few days.

When Mommy came in today, Isla's oxygen was down to 8cc, less than 1/2 what it had been all week (at 18cc). When her nurse came back from break, Mommy asked her if any changes to Isla's care had been decided at rounds. The nurse said 'no'. Mommy explained that the doctor had a standing order to wean Isla only when she decided daily at rounds. Mommy said that although Isla could 'sat' high, she was affected greatly by even slight changes downwards. The nurse kept her numbers at 8cc. All day, Mommy watched Isla's numbers (and her face/colour of skin) to see if Isla was swinging down more often, or if she was affected in any way. When Daddy came in, he immediately noticed how low the oxygen was set. Whe was quite concerned, even when Mommy told him she had been keeping an eye on it all day.

At the end of the shift, the nurse spoke with the team leader, who told her to re-instate Isla back to 18cc of oxygen. During the day, Isla seemed to be fine, but in the evening she swung down more often, especially when using more energy (for instance, while feeding). It could be Isla was a little tired after her oxygen level was dropped significantly.

Isla's left ear was tested again this morning, and she received a 'refer' or fail again. Mommy spoke to the audiologist, asking if she had noticed debris coming out of the ear canal. She had not. It was just before the weekend, and no one would be able to examine Isla's ears until Monday. The audiologist mentioned that the oxygen flow itself could cause a refer result. So, the plan was to have someone examine Isla's ears early in the week, to see if there was wax or any other debris blocking the canal.

Mommy asked if the results from the renal ultrasound were back. They were, and Isla's kidney was normal. That was great news! So far, all the tests of Isla's kidney function and structure were normal.

Isla has passed 0 stools today and is very gassy.

Tonight, Mommy, Daddy, and two of the nurses were discussing the upcoming care conference. Mommy and Daddy said that they wanted to ask about how Isla should be cared for when she comes home. Isla has been in hospital longer than other babies who were born at the same size and gestational age. We want to know what this means and if we have to be extra cautious when Isla comes home. One nurse suggested that with Isla's hyper-reactive airways, she should be treated as if she has asthma and kept clear of the same irritants that someone with asthma does (smoke, perfume, dusts, pets, etc.). Mommy and Daddy said they would ask that questions specifically.

Isla was swabbed for MRSA early in the morning, after Mommy and Daddy left for the night. Luckily, it's not invasive and Isla does not even really wake up when it's done.

Isla weighs 4475 grams, or 9 pounds, 13 ounces.

 

SATURDAY MAY 13th, 2006

Isla had trouble feeding this morning and until late afternoon. At 9:30am and noon, she only took 25cc (instead of 90cc) each feed and was very sleepy. Then, when Mommy fed her at 1:30pm, she only fed for 11 minutes (which is about 1/2 as long as she usually feeds these days). The rest of the day, she breastfed about 18 minutes.

At 9:30, Isla had a spell while feeding. Her heart rate dipped to 70 and she 'desat'd' to the 50's. The nurse gave her 60cc of oxygen and then she recovered.

Isla was very sleepy all day, barely waking up to feed. Isla has not had this problem in several weeks. The sleepiness before was caused by her damaged lungs (the chronic lung disease) and made her more tired and caused her difficulty to feed. Over time, her lungs have gotten stronger, which is why she has been breastfeeding better.

Isla was on 18cc most of the day. From 11am to 3pm and from 5pm to 9pm, she needed more oxygen and had to be put up to 19cc.

The sleepiness, the spell, the disinterest in feeding, the extra need for oxygen, all this shows the beginning of a setback in Mommy and Daddy's opinion. Thankfully, Isla's oxygen level was put back to 18cc, until she is ready to be reduced.

Isla's primary looked at Isla's ear. She cleaned the debris out of her outer ear; she made a note of the debris she saw clinging to the inside. She would pass this information on to the clinical nurse practitioner when the weekend was over.

Isla passed no stool today. Sorry Isla, when you're 15, you won't be thrilled I mention this. But it is a concern to us. It's 2 days since your last stool. Ever since you have been taken off the HMF, you have been bound up on a regular basis.

Isla weighs 4485 grams, or 9 pounds, 14 ounces.

 

SUNDAY MAY 14th, 2006

Isla had her photo taken at 2:30 am. When Mommy came in, there was a framed photo of Isla at her bedside for Mother's Day. This was provided, courtesy of the Linden Fund.

Linden is a former preemie graduate. His parents were so grateful to the staff of the NICU and Mount Sinai, that they created the fund about 3 years ago. It supplies quilts for the isolettes, receiving blankets for the bedding, clothes for the babies in cribs, and much more. Just this past Christmas, they provided a turkey dinner for the parents and staff of the NICU and Level 2 nursery.

What also greeted Mommy when she came in today was a bag of laundry... double-bagged! Before she even got to Isla's bedside, many of the nurses stopped Mommy to ask her if she had seen Isla's laundry, or the note left by the night nurse. One even stopped by the bedside to watch Mommy's reaction!

It turns out, the night nurse (Isla's primary) had given Isla a procedure called 'rectal stimulation' to assist her in passing stool. And it worked... from 2am through to 5am. Although Mommy and Daddy had given Isla a bath earlier in the evening, she needed to be bathed twice again by 6am! Mommy and Daddy were sorry the nurse had so much work, but relieved Isla was no longer bound up.

Isla breastfed today 5 times, for a total of 94 minutes!

Isla was at 18cc of oxygen mostly, but at 17cc from 10am through to 8pm.

When Mommy came home tonight, there was a framed print of Isla's feet as a gift for Mother's Day. Daddy and Isla's primaries had all taken part to make and/or deliver the print. Mommy was thrilled!

Isla weighs 4515 grams, or 9 pounds, 15 ounces.

 

MONDAY MAY 15th, 2006

Today was exciting! But I'll get to that in a moment.

When Mommy came in this morning, she found Isla back down to 10cc of oxygen. The clinical nurse practitioner explained they decided on rounds to challenge Isla. She had been at 18cc all last week, with no change. Instead of reducing her a small amount, they decided to drop her by 8cc and watch her closely.

Mommy explained that Isla had been reduced to 8cc on Friday by the bedside nurse and reinstated to 18cc at the end of the shift. Isla had been tired for the next 24 hours and did not feed as well.

Mommy and the nurse agreed to watch Isla closely today.

Isla's blood pressure today was 114/75 at 3am and 108/48 at 9:30am.

The nephrologist and resident nephrologist from Sick Kids' Hospital dropped by this morning. The Level 2 neonatologist happened to be going by at the same time, so Mommy was able to participate in a discussion with them all regarding the results of all the tests on Isla's kidneys.

All the tests done to date (blood and urine analysis, urine output, kidney function) have been normal. The nephrologist requested increasing the number of blood pressure readings taken from 1 or 2 to 4 daily. She wished the readings to be taken only when Isla was sleeping. Easier said than done!!! This would reveal more accurately how often Isla's pressure was close to, or above 120 (systolic). If Isla's pressure is above 120 and remains there, the nephrologist would like to send Isla home on blood pressure medication.

Also, she asked if an EKG (echocardiogram) had been done of Isla's heart. The neonatologist said she would arrange it. Once the EKG was done, and all other potential causes of high blood pressure ruled out, everyone feels it is likely caused by the chronic lung disease itself. A baby with lung disease grows out of high blood pressure. So, if Isla is prescribed medication, in all likelihood she will need it for only a few months.

Isla was very wakeful about noon today. Mommy was reading "Love You Forever" to her and put her in her car seat to watch the mobile move past her. Mommy added some black and white developmental designs to the mobile as well, so there were more things to look at as each shape or stuffed bird when past her face.

The nurse noticed Mommy trying to stimulate Isla and suggested organising a field trip for Isla in Willow's cart. The cart is like a small, short grocery cart with room for oxygen tanks below it. The cart is used to move a baby to Sick Kids' for an appointment or around the hospital, if they do not need to be moved in their crib or cot.

We call it Willow's cart after a baby who was in hospital for 7 months. By the time she went home, she was the equivalent of a 4 month old baby. Obviously a baby of this age cannot be allowed to lay in bed all the time, or she would miss out on developmental milestones. The nurses would put her in the cart and take her with them on break or on meetings. Everyone would interact with Willow on these trips, so that she would continue to grow and develop normally.

Today, it was Isla's turn for a field trip! I got permission to wheel her down the hall to the parent lounge. We got out the cart and the respiratory therapist hooked her up to the oxygen tank. I put the car seat in the cart, put Isla in the seat, and off we went to the parent lounge. Isla looked out the window at the sunlight for the first time, as I had my lunch. Then I wheeled her back, stopping at the nurses station to introduce her to some of the nurses who took care of me when I was in hospital. It was such a happy moment.

Mommy fed Isla 6 times today for a total of 115 minutes - almost 2 hours!

The clinical nurse practitioner examined Isla's ears. While her left ear had wax in it, the right ear (which passed the hearing test) had tons more wax in it. There did not seem to be any structural problems with the left ear.

Isla weighs 4535 grams, or a fraction of an ounce less than 10 pounds!

 

TUEDAY MAY 16th, 2006

Isla is still on 10cc of low flow! She is a little sleepier than usual. At 9:30am, she needed to be put up to 20cc of oxygen to bottle feed. At 1pm, she was too tired to breastfeed. Mommy was worried the feeding tube would have to be put back in, but luckily Isla woke up enough to bottlefeed. At 4:30pm, Isla breastfed for 18 minutes. What a relief! If Isla had to be bottlefed again, Mommy and Daddy would have had to address her oxygen levels with the nurse practitioner.

On rounds, the doctor implemented the nephrologist's request for more blood pressure readings: she ordered 4 readings to be taken per day, and only when Isla is sleeping. Good luck to the nurses in getting that many readings daily! Isla squirms and squawks whenever her pressure is being read.

Marcus' parents dropped in to visit Isla. Marcus was our neighbour baby in NICU. He was transferred to a hospital closer to home about a month ago. Today, he had to come back for follow up appointments that could not be done at his local hospital. It was good to hear he is doing well.

Isla is due to have bloodwork done tomorrow. This will include her hemoglobin, glucose levels, and testing that her bone are growing properly.

No stool in Isla's diapers today.

Isla's blood pressure today was 104/53 (at 0030) and 102/46 at noon.

Isla weighs 4600 grams, or 10 pounds, 2 ounces.

 

WEDNESDAY MAY 17th, 2006

On rounds today, the doctor said she had ordered a 2D Electrocardiogram (EKG). It will be done next week. The resident nephrologist will follow up next week.

Three blood pressure readings were successfully taken today: 106/55 at 2am, 77/39 at 6am, and 98/52 at 8am.

The plan to get 4 BP readings in a day is now this: put on Isla's cuff and wait until later to take the reading. She is so used to having to wear or navigate around cables, sensors, IV's, C-Pap caps, nasal prongs and more every day, that she soon just accepts and forgets about the cuff being on her. Once she falls into a deep sleep, the nurse hooks up the blood pressure equipment and gets the reading. If she is really asleep, Isla does not even wake up.

Isla was on 10cc all day. She no longer seems overly sleepy or has difficulty waking to breastfeed.

Isla sat in her car seat from 10am until 2pm today.

Isla's bloodwork shows her hemoglobin is now 123: on the low side, but an acceptable level.

Isla still has some congestion and twice today sneezed up pale, green mucus.

Tomorrow is our 'care conference' - or our meeting with everyone involved with Isla's care.

Isla now weighs 4610 grams, or 10 pounds, 2.5ounces.

 

THURSDAY MAY 18th, 2006

Today was our 'care conference'. We had requested a meeting for a few reasons. First of all, Isla has been in hospital longer than most other babies, even those who were born at a younger gestational age and smaller. We are not obsessing about this, but want to know how Isla's health is different, and whether she requires extra care or precautions when she comes home. Secondly, we wanted to discuss what is the current strategy for her discharge / going home.

Present at this meeting were: the Level 2 neonatologist, the neonatal nurse practitioner, one of Isla's primary nurses, the social worker, the clinical care manager (overseeing discharge).

We got an overview of Isla's health and care since she was born. Looking ahead, IF all goes well, Isla will be home in 3 weeks. The plan is this: Isla will remain on 10cc of low flow oxygen until the end of the week; Isla will be reduced to 5cc of oxygen on Monday; a week from Monday, Isla will be taken off oxygen and will be exclusively on room air; then, if Isla has no spells and is not struggling on room air during the next week, she can come home.

If Isla were to get sick, even a cold, she is at increased risk for a lung infection and becoming dangerously ill. The recommendations for infection control once she is discharged are these: all guests should wash their hands when they arrive; if a guest holds Isla, s/he should wash her or his hands immediately prior to doing so; guests who are under the weather should not visit; while we should not become hermits, we should avoid big crowds; Isla should not be put into group daycare during the first year or, even better, two.

The reasons Isla has been in hospital longer than most, are: her lungs were damaged by PIE (see link above on January 29) and she has hyper-reactive airways (aka chronic lung disease) - a condition very similar to asthma.

Isla's weak spot will always be her lungs, especially during these first 2 years. The damage will always exist on her lungs, but as her lungs grow, the damaged area will become extremely small and the impact of the damage will become negligible, unless of course, she takes up smoking or is exposed to irritants later in life.

Isla's lungs will continue to grow until she is about 8 or 9 years. During that time, and especially during these first two years, Isla should avoid the same irritants that someone with asthma should avoid. First and foremost they stressed, Isla should not be near people who are smoking and she should not be near people who have the smell of smoke on themselves, in their clothes, hair or breath. They said, if you can smell the residual smoke, it means particles from the cigarettes are still in the air. Isla is at increased risk of developing SIDS, so this is another reason to keep her from those who smoke or even just smell of smoke.

If guests who smoke wish to visit Isla, it is possible; it's just that certain precautions will have to be taken, such as changing out of smoky clothes and showering upon arrival. Having smoke on your breath is a big concern to us. We have endured way too much to risk Isla's health over other people's choices.

Secondly, Isla should avoid other irritants that someone with asthma should avoid such as smog, perfumes, dust and pet dander. We plan to keep Isla in on smog alert days.

On a positive note, other reasons babies, who have had PIE or who have hyper-reactive airways, need to stay even longer than Isla will stay is that they have trouble gaining weight and feeding. This is why the doctor was so focused on weight gain and on analysing how much Isla was gaining with each feed. The fact that she breast and bottle feeds well, and that she has always had good weight gain, is a good sign.

One issue that came to light when we heard the overview of Isla's care to date is that the last eye exam revealed that Isla was at Stage 1, not Stage 0, for retinopathy of prematurity. This was news to us. Now, this is not serious, but it will have to be watched. First of all, it means there is a slight abnormality - not the fully-blown condition - that was found. Secondly, the abnormality was found in zone 3, the area of Isla's peripheral vision rather than her primary vision. The blood vessels are not fully developed yet; they have to grow a little bit further. This abnormality may resolve on its own during this last stage of growth. Isla's next eye exam is May 29.

Before Isla is discharged, her blood pressure will be monitored. Also, she will be scheduled to have an EKG (echocardiogram) done next week.

Today, Isla's blood pressure was: 119/46 at 1am and 96/43 at 5am.

Isla weighs 4655 grams, or 10 pounds, 4 ounces.

 

FRIDAY MAY 19th, 2006

Today, Isla is 44 weeks, or her corrected age is that of a 4 week old baby. Corrected age is used to more clearly follow / account for a premature baby's development (see the explanation on February 15).

Today, Mommy started her day right out of the starter's gate. While there are many tedious similarities day to day, every day has to be met with a fresh approach. Today, Mommy called the nursery at 0915. Isla's last feed was at 0620. Oh! Mommy got into gear because Isla was still sleeping and she could probably make it to the hospital in time for her next feed. If she did not go in right away, the next feed would not likely be until 2 or 2:30pm. Waiting until then, would reduce the number of feeds Mommy gave Isla considerably. So... Mommy hoofed it in, and made it in before her majesty stirred at 1050am., an amazing 4.5 hours later. Phew! Gasp, gasp!

Mommy fed Isla 5 times today between 11am and midnight. The time between each feed was 3-4 hours. Nice! We can only hope Isla continues this trend when she comes home.

Isla's blood pressure today was: 117/57 at midnight, 116/63 at 10am, and 107/43 at 6pm.

Isla was on 10cc of low flow today. She needed rectal stim to help her pass stool after midnight.

Isla's neighbour, Jake, needed to go back to NICU today. Jake's mom found out early this morning, when she called in, that he had a bad night. When she left the night before, he had been 'swinging' a lot. Jake was 'tired' on low flow. It was a blow for his parents, and goes to show that although Jake was in Level 2 for almost 2 weeks, there are no guarantees that set backs will not occur. Jake is not the first baby to have to return to NICU for a short while. As parents, we cannot be complacent. Jake is being tested to make sure he does not have ain infection, and is back on C-Pap to help give him a 'rest'. Mommy and Daddy have our fingers crossed, praying that he is okay.

Isla weighs 4660 grams, or 10 pounds, 4 ounces.

 

 

SATURDAY MAY 20th, 2006

Today, Isla had her blood pressure taken 5 times today. The first reading at 1am was over 120 (121/52), so the nurse waited until Isla was asleep and took it again 1/2 an hour later; it was then 115/69. It was 116/57 at 4am, 113/58 at 10am, 93/48 at 4pm, and 99/62 at 9pm. It is good to see that her resting BP is under 120. If the systolic reading (the first number) is above 120 consistently, then Isla will be prescribed medication when she is released.

Isla's heart rate is now lower than when she was born. Back then, it ranged between 155 and 170. Now since she is more mature, it is often in the 100 to 110 range.

Again, Isla was on 10 cc of low flow all day.

After feeding Isla tonight, Mommy and Daddy gave her iron. Shortly afterwards, Isla coughed up blood. Mommy and Daddy were upset and called the nurse over. At first, we all thought it was due to Isla being given the iron too long after her feeding (ie.30 minutes later, the breastmilk would be out of her stomach). But after examining Mommy's breast, a little bit of blood was discovered coming from her nipple. The nurse had the doctor examine Isla late that night, after he completed rounds. Isla seemed fine (ie. the blood was likely from Mommy, and not from Isla) and would continue to be monitored.

Mommy spoke with Jake's Mom tonight. So far, the news is good: all the tests have come back negative. Once the blood culture results are in (tomorrow), the doctors can discuss when Jake can come back to Level 2. It's the long weekend, however, so Jake may not be back until Tuesday, at earliest.

 

SUNDAY MAY 21st, 2006

The big news today is that Isla has starte to imitate Daddy's faces. Daddy has always entertained Isla with all sorts of crazy faces. At first, she just stared, and then she smiled at his faces. Today, she is trying to imitate some of the faces he makes.

Isla's blood pressure was 116/46 at 2:30am, and 101/43 at 9am.

Isla fed well today, taking lots by bottle (120ml @6am!) and breast.

 

MONDAY MAY 22nd, 2006

Today Isla was reduced to 5cc of low flow oxygen at 10am.

At 6am, Isla passed a small stool, the first since May 19. Also, she sneezed up a thick, green mucous plug. It's good news that Isla can do this on her own. No more suctioning needed!

When Mommy came in, she brought in clean outfits for Isla. She immediately dropped 2 outfits on the floor. Back they went into the bag to go home to be re-washed. The hospital rule is: anything that falls on the floor is either thrown out or put into laundry. <Sigh>

Isla's blood pressure was better today: 107/62 at 1:30am, 87/39 at 5am, and 105/59 at 10am.

At 10am, Isla had an apneac spell (her heart rate dropped to 70 and she desat'ed to the 60's). An apnea spell means Isla stopped breathing.

Mommy has mastitus (infection of the breast) again. This is the 3rd time. Her symptoms were a large red, hot rash on her breast, fatigue, pain, but no fever. Since Mommy does not have a fever yet (and it was late at night at home when she discovered the rash), she decided to try using the castor oil packs. At the very least, they would ease her pain. But, Mommy did not have time to sit for an hour with the pack on before going to bed, so she just wrapped the pack in syran wrap around her and marched off to bed. Needless to say, Daddy was a little startled!

But the pack worked. In the morning, all the redness and pain was gone. By midday, the red rash and pain was starting to return. Mommy took Advil (which is safe during breastfeeding) to reduce the inflammation, as well as manage the pain. Although Mommy was advised to go to the doctor to get antibiotics, Mommy wanted to try the castor oil packs for a few days, especially since she had no fever, before taking a 3rd course of antibiotics in as many months.

Tonight, Mommy had a spot of blood again, while feeding Isla. Blood in the nipple is a symptom of mastitus, so the doctor at level 3 was notified again, but no one was too worried about it. Isla was fine when examined and it was likely caused by the mastitus.

Tonight, Isla found her voice! Previously, Isla had chattered to Jake's Mom, when Jake was our neighbour. Since Jake was still in NICU, Mattias was using his bedspace. Mattias' Mom came over to say hello to Isla. Isla went crazy! Isla loved her voice! She chattered with Mattias' Mom in her own little language for over 5 minutes, practically non-stop. Neither Mommy or Daddy had seen her this talkative before. It was fantastic!

Isla was not weighed tonight.

 

TUESDAY MAY 23rd, 2006

Isla was still on 5cc of low flow oxygen and remained on it all day.

When Mommy arrived, she found out that the doctor ordered immunization for Isla today. Isla was born 4 months ago. This would be the same round of vaccines that she had at the 2 month mark: Diptheria, Tetanus, Pertussis, Polio, Pneumoccocal, Hib, Meningitis. Remember that although Isla's corrected age is 4 weeks old, vaccinations are given based upon when the baby was born and exposed to viruses as much as anyone else is. Isla's corrected age is used for developmental milestones.

The vaccines are divided into 2 needles, which are injected into the muscle of the thigh. Isla had her immunization done at noon and she squawked loudly.

Shortly after Mommy arrived this morning, Isla's primary was informed that Isla was scheduled for an EKG and a chest Xray. In addition to giving Isla her immunization, she also had to take 4 blood pressure readings (one for each limb) before the two teams arrived. We switched into high gear!

The trick to getting a proper blood pressure reading for Isla, is to take it when she is asleep. As soon as she starts to wake up and realise what's going on, she begins to thrash - thereby giving a false reading. This time, Isla's primary began to take the readings at noon. Her right arm was 118/53 and her left arm was 121/79. The left arm was probably not accurate, because she started to move around while it was being taken. The machine would not give readings for Isla's right and left leg.

The technician arrived from Sick Kids' Hospital to do the EKG at 2pm. It was no problem at all. Isla had just fed and was fast asleep on Mommy's lap. Mommy opened up Isla's outfit and the technician placed the sensors onto Isla's torso. The test was done in no time at all. Isla didn't even wake up when the sticky sensors were [gently] pulled off her skin.

The xray technician arrived at 3:45pm to take xrays of Isla's chest and side. Isla shrieked during the first 2 xrays, but when the lateral view had to be re-done, she was calm.

Although Isla had so much done today, she never needed her oxygen increased, and she never spelled!

 

WEDNESDAY MAY 24th, 2006

Isla was born 125 days ago; she is 44 weeks, and 5 days old.

Isla remained on 5cc of oxygen all day long.

Since getting a 4 limb blood pressure did not work out yesterday, the doctor ordered it to be done again today. However, since there was no deadline [ie before the EKG] today, each limb could be done at different times.

Isla's pressure was taken at 1am: 97/60. Then, after doctor's orders: her right arm [at 10am] was 107/62; her left arm [at noon] was 98/54; her right leg [at 3pm] was 112/52; and her left leg [at 6pm] was 99/29.

Jake was back today, from NICU. Mattias left yesterday, so Isla and Jake are neighbours again.

Isla was swabbed for MRSA today

 

THURSDAY MAY 25th, 2006

Isla remained on 5cc of oxygen all day.

Now that the 4 limb blood pressure readings have been done for the nephlogy department at Sick Kids', Isla can go back to having only two readings done per day. Today, her pressure was 110/55 at 3am and 77/39 at 11am.

Isla slept well today, as usual. Isla's nurse today expressed surprise about how well she slept, as most babies with chronic lung disease do not sleep well and are restless. Really? No wonder other nurses have commented about how soundly Isla sleeps. No one had explained it before to us.

Today, we put up a mirror on Isla's crib. She loved it, laughing and squirming when she discovered it! Not only is it a developmental tool, but this mirror has musical lullabies and lights that illuminate when the music plays. Isla now lies quietly when she wakes up and looks at herself in the mirror. When she seees Mommy and Daddy in the mirror, she laughs with delight!

 

FRIDAY MAY 26th, 2006

Isla is 45 weeks old, or 5 weeks corrected, today.

Isla pulled out her low flow today just before 11am. Jake's mom, who was seated feeding Jake, saw a flurry of movement and Isla's arms flailing around. Shortly afterwards, Isla's primary arrived to feed her at 11am. The nurse picked her up and marched over to the clinicial nurse specialist's office to show her what Isla had done + to ask permission to leave her on room air. It made sense to leave the low flow off and see how long Isla tolerated it. So, between the doctor and the clinical nurse, and with primary's input, that's what was decided.

As usual, Isla takes her progress into her own hands! When Mommy and Daddy left at midnight, she was still on "no flow". It was a great anniversary gift [the anniversary of Mommy and Daddy officially "going out"].

Isla's blood pressure was 108/65 at 1m, and 87/46 at 7am.

Today, the clinical nurse specialist had a chat with Mommy today, reminding her to give Isla as much "tummy time" as possible. Since the medical industry now mandates babies to sleep only on their back to reduce the risk of SIDS, babies need to have as much time on their tummy to develop the strength of their torso. Without making a concerted effort to put the baby on her tummy as frequently as possible while supervised during play time, the baby will not develop upper body strength as she should and may even skip the motor development of the crawling stage.

The clinical nurse also mentioned that Isla was maturing into "quite a character". Apparently, after she pulled off her low flow, the nurses held her for quite some time. When they put her down, Isla cried real tears. This was a milestone, as preemies don't shed tears until they become older. While Mommy and Daddy don't want Isla to cry, they were glad to hear about this step.

SATURDAY MAY 27th, 2006

Isla's blood pressure was 114/63 at 9am and 107/50 at 10pm.

Isla is still breathing room air today!

 

SUNDAY MAY 28th, 2006

Isla's blood pressure was 103/79 today. The doctor has ordered only one reading to be taken daily now.

Isla sat in her car seat for 5 hours today. She sat'd between 90 and 94. To pass her car seat test, which she has to pass in order to be discharged, Isla's blood saturation has to be 95 or above.

Isla was breathing room air 60 hours by the time Mommy and Daddy left today.

 

MONDAY MAY 29th, 2006

We have news! Today at rounds, it was decided that if all goes well, we will "room in" on the weekend, and then take Isla home on Monday, one week from today! Hooray!!!

We received more notice than some parents get. Late this morning, parents of twins Azadeh and Kiana, were told they were rooming in tonight! and if all went well, released tomorrow. The girls were born at 35 weeks old and luckily did not need to stay in hospital too, too long. Although we have already started to get into the mindset we need when we go home, we're glad we have a week's notice.

Rooming in means we will stay in a room at the hospital. It's a "care-by-parent" room, in which we stay with Isla; Isla will have all her sensors removed and it will be more like being at home, but if anything were to go wrong, the nursery and staff are right down the hall. If the truth be known, however, by the time the parents room in with the baby, the medical team is certain the baby is ready to go home. Rooming in reassures the parents and acclimatizes them to life at home.

Isla's eye exam was postponed until tomorrow at 8am. Mommy had braced herself for it happening today. It's hard whenever it is postponed. But 8am tomorrow it is! Mommy will be there. It's important to console Isla as soon as it is over.

Isla's left ear was tested again today, but Isla was restless and so it could not be completed. One more attempt will be made before she is discharged. At this stage, the audiologist, the clinical nurse and the doctor are not worried that Isla has failed testing on her left ear to date, because there are many factors which could cause a 'refer' result (ear wax, congestion, the low flo tubing itself). The test is an initial crude test. We won't get worried about it until need be. If Isla fails again before being discharged, she will be scheduled for a full diagnostic in 2 months, when she is 4 months (corrected) old.

Isla's blood pressure was 79/40 today.

Tonight, Mommy and Daddy - with the nurse's blessing - unhooked Isla and walked around the nursery with her for about an hour. They visited with Jake's parents and got used to the idea of not looking at /or listening for a monitor every few minutes to check on Isla's vitals. Instead, Mommy and Daddy have to remember to look at Isla, checking her skin colour, the colour of her nails and lips, the rise and fall of her chest. Although Mommy and Daddy have been trying to do this for a month, it's easy to glance up at the monitor despite the best of intentions. It was surreal + wonderful at the same time to walk around without any wires or sensors attached to Isla at all!

 

TUESDAY MAY 30th, 2006

Today was a busy day for Isla! Mommy arrived at the nursery at 7:50am, just after the opthamalogist. He had already begun with another baby. Thankfully, he was quick in assessing Isla, so she was not distraught for too long. As tired as Mommy was, she was glad she made it in time to comfort Isla as soon as the test was done. Isla settled down faster and was not as jumpy as she would have been.

The results were: stage 0 of retinopathy of prematurity; Isla's blood vessels were almost fully developed.

After rounds, the discharge coordinator told Mommy that she would find a pediatrician for Isla at St. Mike's hospital. She would refer Isla and set up an appointment for her within the first few days after discharge. Nice! This is one less thing for Mommy to do.

At 1045am, the head ultrasound technician showed up. Everyone had forgotten this was booked it seemed. Isla's bedside nurse had not been informed, and so was on break. Mommy had last heard that it would be early this week, maybe Tuesday. But no matter, Mommy was already here and soothed Isla throughout the whole test. It went fairly well, and Isla remained mostly calm and still.

At 1:45pm, Mommy started to get Isla ready to go over to Sick Kids' Hospital for an appointment with a cardiologist, followed up by a test. What Isla still needs to have done is an Echocardiogram. This is to check the structure of her heart, to ensure that there is no reason for her intermittent high blood pressure.

The appointment was for 3pm at Sick Kids. Mommy and the bedside nurse got the "cart" ready. This is the same cart that Isla took a ride in down to the parent lounge. We stocked up with diapers, breast milk in a cooler, blankets, a change of clothing, wipes and more. There was a monitor to keep track of her blood saturation and heart rate levels, as well as oxygen tanks on board.

We took the underground tunnel that goes beneath University Avenue. It links to Sick Kids' Hospital east of Mount Sinai, north to Princess Margaret Hospital and south to the Toronto Rehab Facility. We arrived on time for our appointment, but unfortunately, the resident cardiologist was tied up in emerg. We waited 3.5 hours until we were able to have our consultation. He did not authorize Isla to have an echocardiogram done today, which was disappointing. He said he would defer to another doctor. The good news is that, after he examined Isla, and reviewed the DVD of her chest xrays, he ruled out congenital heart disease. So, we returned to Mount Sinai without much accomplished and hoped to hear soon if/when Isla would be scheduled for an echocardiogram.

Mommy and Isla arrived back about 7:15pm, shortly after the parent meeting had started. Mommy changed and fed Isla. Then, about 8:20pm, Mommy unhooked Isla from the monitors and took Isla with her to the parent meeting for the last 10 minutes. The topic was "the growth and development of your preemie while in the NICU and after discharge". This gave some of the brand new parents a boost, a chance to see how their own child(ren) will look when they get closer to discharge.

Isla's arrival certainly upstaged the parent resource nurse (oops, sorry!) who was conducting the meeting! After the meeting, Daddy and Mommy stayed by with Isla to chat with a few parents and a grandmother who are all going through their own difficult journey. They were thrilled to see Isla, who they had heard about for many weeks.

One more tidbit: Daddy had told the parent resource nurse at the meeting that Isla now tracks movement with her eyes and sometimes tracks movement with her head. Apparently this is quite advanced for Isla's corrected age!

 

WEDNESDAY MAY 31st, 2006

Everything is moving along on schedule. We are still on track to room in on the weekend and be discharged on Monday. The room is booked. Isla has been referred to a pediatrician as of today and an appointment has been booked for Tuesday, the day after we arrive home.

As recommended by Isla's primary, we will make sure that Isla's car seat probe test will be done before Monday, to ensure that we don't have any nasty surprises. Before Isla can leave hospital, she has to show that she can withstand sitting in a car seat, strapped in as she would be in a car, for 1.5 hours without spelling or even slightly de-sat'ing. This means that her blood saturation rate has to be 95 or above the entire time.

The reason for this test being done, is that the babies have spent a great deal of time, sometimes all the time, on their backs. While they may be able to maintain good saturation levels while on their back, it's quite another matter to do this while seated upright. Most preemies have not developed their torso strength, and slouch when they sit. This means that their lungs cannot take in the maximum amount of oxygen, and thus reduces their blood saturation levels. Taking a baby home in a car seat that cannot maintain their saturation levels could be very dangerous indeed.

Isla's systolic blood pressure measurement was 85.

Isla loves the voice of Jake's mom, whose primary language is French. She speaks both English and French to Isla and Isla respons back! Jake's mom lent Mommy some books for her to read to Isla in French as well as English. Often Mommy reads "Love You Forever" by Robert Munsch to Isla. Today, she read the french version to Isla, who enjoyed it very much!

Isla was swabbed for MRSA today.

THURSDAY JUNE 1st, 2006

Isla's blood pressure was 78/33! There has only been one other time when it was lower than this!

Today, Mommy noticed one of the social workers helping out: she held one of the babies in the nursery for more than 40 minutes. Another day, Mommy would see the same social worker holding the same baby. Perhaps the parents are unable to come in. How fantastic that she took time out of her day to do this!

Tonight, Isla was in her car seat but didn't probe very well. Her blood saturation levels ranged between 89 to 93. Too low! Mommy and Daddy re-adjusted Isla's posture, but it did not seem to make much difference. This made us nervous. Other parents have come in, prepared to take their baby home, only to be told the baby did not pass the car seat probing and could not go home just yet. It's in the best interest of the baby, of course, but is devastating to the parents.

Mommy left a message for the parent resource nurse, informing her about what had happened and asked her to stop by the next day to ensure Mommy and Daddy were making the rolls correctly. The rolls are towels or receiving blankets, rolled up lengthwise and placed in the car seat on either side of the baby. Car seat manufacturers supply one, but it is pretty much useless for the preemie, as it does not support the neck and keep it from falling sideways or forewards.

After Mommy and Daddy took Isla out of the car seat, her numbers improved to the level they should be, especially when Daddy was holding her.

Isla weighs 4875 grams, or 10 pounds, 12 ounces!

 

FRIDAY JUNE 2nd, 2006

Today, before Mommy was able to get in to the hospital, the nurse called to say Isla had passed her car seat test. The parent resource nurse had been in to inspect the rolls and all was well.

When Mommy arrived at the hospital, she learned the bedside nurse had been playing and laughing with Isla this morning. She had put Isla in her car seat to watch people as they passed by. Then, she set up a radio near her. Apparently, Isla likes ABBA, Rod Stewart and the Village People!!

Mommy also discovered that Isla had her hearing test for her left ear and had passed! Yaay! The audiolgist had set the sensors in place and then left to test other babies. By the time she returned, Isla had forgotten they were on her and had fallen asleep. There was no problem getting a pass reading. We had not been worried, but it was nice to have the test completed, to know we did not need to worry, and finally to have that detail done before leaving the hospital. Getting tests done while Isla was in hospital is easier then as an outpatient.

The discharge coordinator said Isla's follow up eye exam was scheduled and gave me the contact info at Sick Kids Hospital in case I did not hear from them soon.

Today, Isla had a desat and heart rate dip when she was given her iron. At this point, Mommy and Daddy know how to handle it, but it is upsetting to see Isla turning bluish. There was no problem giving her the vitamins, so Mommy will just have to be more watchful as she administers them at home. Isla will be taking viatmins and iron for a year past discharge. Some babies do not need to take these as long, but since Isla had low hemoglobin, she will be taking her iron a full year.

Isla had fun with her mirror again today. She was talking to herself, listening to the music and laughing for quite some time.

Maybe Isla is smiling and laughing because tonight is the last time she will sleep in Level 2 nursery! Certainly, that's why Mommy and Daddy are laughing. As soon as we are all ready tomorrow, we will move into the care-by-parent room.

 

SATURDAY + SUNDAY, JUNE 3rd to 4th, 2006

Isla had been 'hanging' out with her nurse all day, until Mommy and Daddy arrived at at 3:30pm with so much luggage and bags, people thought they were moving in! They brought along things they wished to try out before using them at home: a bathtub, a baby carrier, and bottles.

Before Mommy and Daddy arrived, Isla had been on rounds, she helped her nurse with updating reports on the computer, went for a walk in her stroller, and lots more.

Together with the nurse, Mommy and Daddy rolled Isla's crib, supplies and clothes down the long hall to the "care-by-parent" room. Isla was fast asleep when we moved her. When she woke up in a completely different and much quieter place, she cried briefly until she realised we were there.

And then it was play time! We put Isla on the bed while we chatted to her and played games.

The parent lounge was a few doors down from our room, so we prepared dinner there and ate in our room. By the time we got to bed, it was 0130. Isla woke up at 0430; Daddy bottlefed her breastmilk and got back to bed at 0530.

Mommy got up with Isla at 0730 and fed her throughout the morning. At noon, Mommy and Daddy took her to Level 2 in her stroller. Then, they left to run a few errands for 3 hours. When the returned, Isla was asleep in her stroller, after having been entertained by the nurses.

The routine from the night before was repeated: Daddy got up about 0400 and Mommy got up about 0630.

 

MONDAY, JUNE 5th, 2006

Morning rolled around and soon it was time to "check out" of the room and return to Level 2 Nursery. Before leaving, the clinical care nurse came by to examine Isla. And, of course, everything was fine.

Back at Level 2, Isla has not had a bowel movement for 5 days now. Isla's primary gave her a glycerin tip, to move things along. Mommy and Daddy waited a while, in case it worked. It produced a lot of gas, but Isla was not ready to pass a stool before going home.

Mommy and Daddy collected final paperwork, took photos with Isla's primary nurse, and said our good-byes.

We're happy, no, THRILLED, to be finally heading home, but we will miss everyone. We are so grateful for the great care that Isla received. Everyone - from the nurses, doctors, social workers, dieticians, pharmacists to the ward clerks and service assistants - everyone made our stay here so much easier.

Mommy will never forget the time one of the service assistants helped her breastfeed. Mommy was chatting to her as she cleaned a sink nearby. Mommy was worried that Isla would never learn to breasfeed. She always slept and that day was no exception. The service assistant immediately ran over, and began cheering Isla on, encouraging he to wake up and feed. After weeks of nothing working, and Isla sleeping despite varied attempts by Mommy, Daddy and the nurses, Isla woke up and fed vigourously. Mommy was thrilled!

In additon to the staff, Mommy and Daddy will not forget the other parents. They share equal billing as a resource and part of the 'team' that gets you through the whole experience. We made many friends, with whom we hope to keep in touch afterwards.

It was surreal taking Isla outside. We hurried past the smokers and made our way to the car. A bystander stopped to admire Isla and it turns out she had a baby born at 27 weeks. Her child was now 20 and off to university. It was a good sign for us!

The trip home was uneventful and we arrived about 2:30pm. It was wonderful to have Isla home at long last, and odd to her her squeaking and know she was with us.

An hour later, we recieved a call from the hospital. We had forgotten to sign Isla out properly!

It was bath night, so we go used to a new set up at home, and it all went well.

Isla's discharge weight was 4945 grams, or 10 pounds, 14 ounces.

 

TUESDAY, JUNE 6th, 2006

Isla had a lot of gas during the night, from trying to pass stool, so she squirmed and was uncomfortable. She didn't sleep as soundly because of it. Mommy, who is usually a sound sleeper, woke up every time Isla stirred and squeaked.

For her first night home, she woke up every 2 hours. This is the first time in months that she has slept such a short time. She "normally" sleeps 3-5 hours. The clinical nurse told Mommy not to count on her sleeping as long at home. She may do so, but there is an equal chance she will change her routine.

This afternoon is Isla's first visit to her new pediatrician. A mother in the waiting room says her daughter was 8 months old before she "slept through" the night. The medical definition for sleeping through the night is that the baby sleeps 5-6 hours. Not our idea of a full night's rest!!!

Isla's new doctor is terrific. He thought Isla was in very good shape, and was not worried that it has been 6 days since her last stool - as long as Isla was not uncomfortable and didn't have a distended belly. Breastfed babies can take longer to poop... after 14 days, they want to discuss it.

Daddy had to go back to the hospital tonught. We forgot the store of breast milk in the freezer yesterday. Daddy popped into th parent meeting for a few minutes, say hello, and encourage the parents there.

 

WEEK of JUNE 5th, 2006

Now that Isla is home, we will update this log weekly.

Mommy and Daddy did not need to worry about Isla not passing stool... She had a large poop the day after visiting the doctor (June 7) and a moderate one the day following that.

On Friday (June 9), we went back to see the doctor, because Isla spit up blood. Mommy was sure the blood came was from her nipple, but the doctor wanted to be sure Isla was okay. And she was.

On Sunday (June 11), Mommy and Daddy took Isla for a walk to the coffee shop. They needed to stock up. Mommy found it surreal walking outside in the sunshine with Isla, after spending so many months indoors in a windowless environment. We all sat together in the coffee shop, with our hand sanitizer in tow.

 

WEEK of JUNE 12th, 2006

 

We appologize for the delay in updates ...

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