Daily updates
(January 1999)
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Daily Update Archive:
(1998) December
(1999) January  February March  Current

Purpose of page I will try to update these pages daily when I get in. It is not that I mind people asking me how he is, but it will save me repeating the same story over and over again which is a little hard for me, especially if he has had a rough night. 
(Plus, my Boss may feel that I am accomplishing more work if I am not always talking about Sullivan when he comes to my door!) 
Feel free to ask questions, but if you want a quick update, check here first to see if I have made an update. (Note: my schedule will probably be such that I will arrive between 8:45 and 10 am and I'll make this update my first task of the day) 
(When available, I will put images in here too, or at least links to them.)
Jan 4, Mon.
1150 grams
1190 grams Sun
1150 grams Sat
1120 grams Fri
  An eventful Sunday evening. The short version of the story, is that Sullivan extubated himself. When we arrived in the evening after a visit in the afternoon, his ventilator tube looked different. It was 2.5 inches long outside his nose, instead of the usual .5 inches!
  We brought it to the attention of the nurse, and when the respiratory therapist checked the tube, it was barely in.
Sullivan had been breathing on his own, for at least 2 hours, and the nurse didn't realize it!
  SO, they skipped the intermediate step of the alladin/cpap or short tube and went directly to the nasal prongs. You know, the kind of oxygen breathing assistance everyone in soap operas, or movies seem to wear when they're in hospital. Simply short prongs in the nose providing some oxygen under minimal pressure.
  He was alert, looking all around, moving his arms, and seemingly enjoying the whole experience.
  One thing this means, is that Sullivan can finally be heard! He didn't have much to say last night or this morning. He made a few high pitched squeaks, and some sighing noises.
  He sucked on Maureen's finger pretty hard before falling to sleep.
  It was like he was a new Sullivan. His head is no longer pinned down by the cumbersome heavy ventilator tubes.
  He is a real fighter, taking his medical situation in his own hands! What a guy. He pulled the tube out at least 2 inches (and he did it quietly enough that no one noticed until his parents came in and made a comment).
That's my boy.
  His weight had reached 1190 grams on Saturday night, but slipped back a little.
Jan 5, Tues.
1170 grams
  After all the activity of the weekend it was good to have a nice quiet evening. He is handling the nasal prongs very well, and his oxygen requirement is really low.
I held him last night for about 1/2 hour, and he made a few peeps, but still not much in the vocal department.
  This morning, after I let him suck on my finger for about 10 minutes, I realized there was no tube in his mouth, and figured out that he had yanked that out!
I notified his nurse, and we found that his bed was soaked, a patch about 5 inches across, so it had been out for a while.
  When his feeding tube is in, he is getting 7ccs per hour, continuous feeds. Before he can be tried on breast feeding, they want to switch him back to bolus feeds. That is, feeds of 7ccs all at once. Once he is back on that regimen, he will get the chance at the real thing.
  Last but not least, I never mentioned, that not only did Sullivan get his old spot back at Mt Sinai (i.e. same space in the NICU), but he also got his old primary nurse back. That is good, because we like her.
Jan 5, Tues.
Not a big accomplishment to you or I, but today, while Sullivan was lying on his stomach, he picked his head up, and turned  it to the far side! I know I am sounding like your typical Dad here, but not bad for a little 2lb 9oz fellow.
Jan 6, Wed.
1170 grams
No weight gain yesterday. One of the factors affecting that, may have been the fact that he pulled out his feeding tube twice!
(The feeding tube, is a thin little tube, that goes into his mouth, and directly into his stomach (about 4 inches worth of tube). It is only taped at his chin. I expect that it is an uncomfortable feeling. His tongue is continually bumping it, and pushing on it. Add that to the fact that he likes grabbing things, and it was inevitable that the "bags" had to go back on his hands.)
He was calm and looking around last night. Things seem to be settling down nicely at the moment.
I have still only heard a few peeps out of Sullivan. Nothing that you would call crying.
BUT Maureen confirms that he can cry. When his blood pressure was being taken, he was wailing! So, though I don't want him in any sort of distress, I am looking forward to hearing his voice.
Jan 7, Thurs.
1180 grams
  Slow and steady he is approaching 1200 grams. I held Sullivan last night, and I bathed him. He still only gets a sponge bath but that is a bit tricky with the 3 different leads on him, the feeding tube, the nasal prongs and the central line, AND you are doing it through 2 of those arm holes in an Isolette! But he doesn't mind it, and he was wide awake after the bath.
  The doctors are ready to remove the central venous line, that he has had for over 2 weeks. It is the IV that enters his chest, and ends up entering a major artery. A doctor from the Hospital for Sick Children will have to come over to remove it.
  Because of the central line, he has not required any other IV for over 3 weeks. That has meant that his arms and legs have been free of lines and bruises for quite a while now.

  We got a special Christmas card yesterday from Sullivan by way of Hospital for Sick Children. It was a card, signed by Sullivan, with 2 photos of him enclosed that the nurses had taken of him in a red hat and little red and white striped elf socks. It had a very nice sentiment inside, and really made us feel good.

Jan 8, Fri.
1215 grams
Happy Birthday Sullivan
2 months today! 
Twice his birth weight last night .. 1215 grams!
  Despite all of that it sometimes feels like 2 steps forward, 1 step back...
  He was having a few more desats (low level of oxygen in his blood) yesterday and he was breathing a lot faster, meaning he was struggling to keep his oxygen level up, so last night they changed him from the nasal prongs to the NPT (short tube). With that he would still breath on his own, but there is +ve pressure so that when he breaths, the air can "rush" in and he doesn't have to work as hard. After about 6 hours, the doctors reassessed, and decided that things weren't to bad, so he was put back on nasal prongs.
  His hemogloban level was low, so they performed a test to see if Sullivan is producing red blood cells. If he is, he should be able to recover on his own. We aren't sure of the results yet.
 His stomach was slightly loopy, and his bowel movement was +ve for blood. That could mean a reoccurrence of the infection that he had. We have to wait for the next one for another test. 

So, when the baby is this small,  if its not one thing, its another.
Sullivan is looking good today. I think the above things are only a minor setback.

Jan 11, Mon.
1240 grams
  An uneventful weekend. Almost all the issues from Friday got resolved. No blood in his stool, his belly is no longer loopy (that just meant they could feel the outline of his intestines) and they are still watching his hemoglobin.
  The reason they have to watch it, is that he is currently pale, and his hemoglobin level is low. But it is around now that Sullivan's bone marrow kicks in and starts to produce red blood cells. So, though they would like to give him a transfusion, if his red blood cells are starting being manufactured, giving him a transfusion will hamper his systems ability to produce red blood cells. So, they can't let him get too "weak" because of his bloods inability to hold the oxygen, but they don't want to jump in too soon and hurt his chances for making his own cells.
  Maureen has been sick, and unable to visit Sullivan. That is tough on her, but I took videos of Sullivan, and played them back again for her when I got home.
  Oh, I almost forgot. I held Sullivan twice on Saturday, and the second time it was kangaroo care. That means , that I got to hold Sullivan without a blanket between him and me. His bare chest against mine. It lets him get my body warmth and get to know that feel, and smell.
  It was very nice. So a good weekend all around.
Jan 12, Tues.
1250 grams
A nice quiet day and evening. Sullivan gained 10 more grams. I visited at lunch time and he was wide awake for my visit, but in the evening, he slept through the whole visit.
I have put the Christmas card from Hospital for Sick Children on its own page, and have created a new Gallery 5 containing images from our Christmas day celebrations in the unit.
Jan 13, Wed.
1245 grams
Sullivan  has been quite alert lately. Bright wide eyes, looking all around, struggling quite a bit to. Hard to say why, but just squirming around.
During this squirming, he has been grabbing his tubes (feeding tube, and nasal prongs) so he has the bags back on his hands.
Lost a bit of weight, and he looks a little pale because of his low hemoglobin, but he seems to be content.
Jan 14, Thurs.
1280 grams
(2lb 13oz)
  Sullivan was collecting frequent traveller points again today. He took a trip to Hospital for Sick Children to get his central venous line out (the long term IV in his chest).
He was over and back within 2 hours, wheeled through the tunnel between the hospitals in his incubator. He just has a small dressing on the area now.
  Also, his Bolus feeds have begun. He started off with 12 ccs in 2 hours, and moved up to his full 15 ccs. He is tolerating it well so far.
  He still looks pale because of his low hemogloban, but other than that he looks good. 
Jan 15, Fri.
not weighed
  Well, Thursday was an historic day. Sullivan was moved to the Level 2 Nursery. They wheeled him down the hall around noon.  (I missed the move, I was home thawing frozen pipes!!) Thursday also would have been 37 weeks gestation. 

Some of the differences:

-relatively quiet -quite noisy
-20 babies -28 babies
-5 babies per nurse -3 babies per nurse
-Monitors -Monitors with overhead flashing light and bell
-More Parent Care -Some Parent Care
-Parents allowed to pick up baby without having to ask nurse -Must ask nurse, and she picks baby up
-Check in once per day -Check in on every visit
-Visiting may take place during rounds (generally), which involves a doctor and a nurse. -Visiting may not take place during rounds, which involves doctors, residents, respiratory therapists, nurses.
-Weighed every 2 days -Weighed every day if baby stable
  Sullivan has even graduated to the next size diaper. I think it is the new-born size as opposed to the preemie size.

  The only down point, he wasn't tolerating his Bolus feeds, too much aspirate left before his next feed. So late Thursday after I held him, he was switched back to continuous feeds.

  A talk with the nurse at the end of the evening, revealed some of the criteria for Sullivan coming home.

  • He will probably be close to 5lbs. 
  • He must have had 1 full week with no desats (a desat is when the oxygen level in his blood dips below 85%. Sullivan has about 1 of these a day.)
  • He will be off a monitor for a couple of days
  • and the parents will sleep overnight at the hospital in the Parent Care room with Sullivan to ensure they and he are ready for the move
  • He will be placed in an infant car seat and hooked to the monitor for 3 hours to make sure he can handle the position it places him in
  • He'll have to get to Bolus feeds
Since the nurses have 5 babies in their charge the parents will do more care in the Level II. We can take Sullivan out when we want. More often than in the NICU we'll take his temperature, change his diaper, bath him, and when the time comes, take him out to breast feed.
In preparation for breast feeding the stomach tube will be moved to Sullivan's nose so the tube won't interfere with him sucking. He'll be trying that soon, but it will be considered non-nutritive sucking, and his tube feedings will continue.

So Sullivan has made wonderful progress, though he still has quite a way to go.
Way to go Sullivan!

Jan 18, Mon.
1350 grams
1320 grams Fri

(10 weeks old
on Sunday, and 
37 weeks gestation
last Thursday)

  A nice quiet weekend for Sullivan. He began non-nutritivesucking (breastfeeding). They do not expect him to quickly replace his tube feeds, but he needs to learn, and know how to do it. In the 3 attempts he was moderately successful. (his feeding tube has been moved from his mouth to his nose to free up his mouth).
  Bolus feeds were started again, and he seems to be tolerating it this time. I think he is up to 18 ccs every 2 hours.
  He had his first "bath" on Sunday. Up till now, we have given him "sponge baths" in his isolette. This time Maureen took him out and bathed him in a big bowl (I will do it next time). He looked a little shocked or stunned when first put in the water, but he calmed down. He let out a quick 1 second cry and that was all he had to say.
  He fell asleep quite quickly after that.
  His Oakville cousins visited on Sunday, and 2 of them were seeing him in person for the first time. They enjoyed the visit, though he slept through the whole visit.
  On the whole, a very good week, and good progress was made. 
Jan 19, Tues.
  A busy day for Sullivan. He had his third eye exam yesterday. For the first time there are some concerns. Basically, the development of the Retina needs to be monitored because the Oxygen that a premature baby gets can cause blood vessels to grow in the eye that can alter the growth of the Retina.
Sullivan currently has been diagnosed with a stage 2 Retinopathy of Prematurity (ROP). His eyes will now be monitored every week. Some intervention may be needed, though the problem may also resolve itself. We'll have to wait to see.
  He tried breastfeeding again, to mixed results. Some luck, but he also seemed disinterested. We have to keep working on it.
  Because of all of the above handling, he showed his stress by having 3 spells (low levels of Oxygen/slow heartbeat) and spitting up 3 times. We handled him less in the evening than we usually would to give him a rest.
Jan 20, Wed.
1355 grams
All was quiet for Sullivan today. He was left alone as much as possible so that he could rest, and not be bothered by handling. He attempted breastfeeding twice today, and was moderately successful. He is still being fed through the tube into his stomach, and is tolerating that well.
Mom and Dad took an infant/child CPR course last night. It will help us feel more comfortable when we have to take Sullivan home.
Jan 21, Thurs.
All quiet in Level II Nursery. Sullivan was allowed to rest most of the day with no disturbances, and he did better. He was less stressed.
Since there isn't much to report, here are some new images (Gallery 6), most showing Sullivan's face without the ventilator tube!
In one of the pictures, you can see his "Winnie the Pooh" Head Hugger. In the NICU, a head hugger, which is normally used to keep a baby's head from rolling back and forth too much in a car seat, is used as a nest, to help contain the body of the preemie. It helps contain the baby.
Jan 22, Fri.
1390 grams
(3lb 1oz)
  It was Dad's turn to bathe Sullivan last night, for the first time. It was his 3rd bath outside of the incubator, and the 2nd by his parents. He is unhooked from the monitor and brought out of the incubator, and after his head is washed, he is placed in the round metal bowl they have for bathing.
  He is starting to be more vocal. He cried a 2 second or so cry when I washed his face and head, but quickly calmed down. He had a concerned look on his face when I placed him in the bath, but he soon calmed down, and didn't seem to mind it at all.
  On return to his incubator, Peggy his nurse had to re insert his feeding tube into his stomach through his nose. She tried his left nostril, and met resistance, and during this Sullivan was crying quite loudly, and tears were coming to his eyes. It is times like these that it is very hard to watch. Sullivan is generally so quiet and calm, and then procedures  like these have to be performed and he is in such distress.
  She then tried the left nostril and it went in smoother, but Sullivan still didn't enjoy this. Once the tube was situated he quietened down, and then Peggy repositioned his Nasal prongs by first removing the tape holding them in place.
  Sometimes, the nurses seems a little rough, but I guess they know what the babies can tolerate, and how sticky the tape is. But removing the tape pulled on his skin quite a bit, and Sullivan cried again. Hopefully he won't have to endure much more of this. We really want to take him home.
Jan 25, Mon.
1430 grams
not weighed Sat
1410 grams Fri

11 weeks old Sun

  Sullivan is doing really well. Still growing (what else is new), and still hanging out in his incubator.
  When they turn down the temperature of his incubator to 28 degrees, AND he shows he can still maintain his body temperature, he can be moved to a cot which is more open and would put him more in a "home" situation. His incubator is currently set at 29.8 degrees.
  He is now 11 weeks old, 38 weeks 3 days gestation, approaching his due date of February 4.  Hopefully he'll beat the last prediction of home in March!
Jan 26, Tues.
not weighed
  Like any roller coaster, there have to be downs with the ups. Sullivan started appearing sick on Monday night. He had his weekly eye exam early in the day. This usually wipes him out, but he never seemed to recover. When we went to see him in the evening, he was still tired, not interested in breastfeeding at all, and coughing and sneezing a lot.
  Overnight he had 5 spells (heart rate and oxygen dips), where he would usually only have 1 or none. He also required more oxygen during the night, and his temperature was fluctuating a lot.
  They did some blood work this morning, and decided to start him on a round of anti-biotics. For that he needed an IV inserted, and when Peggy put the IV in his foot he didn't flinch at all. No struggle left in him. The blood work showed low white cell count (babies show the opposite of adults when sick), and low hemoglobin count.
  So he'll be followed today to see how he does. To be cautious, they will do a spinal tap around noon to make sure he doesn't have meningitis (he had a tap done once before when he had pneumonia). Apparently preemies do not have the ability to localize infection at the site of entry, so infection can spread around the body, and the doctors have to treat it aggressively.
  As for his eyes, he is still at level 2 of ROP, and we found our that 37 weeks is the worst time for this development, and that is just about the gestation he is at. It is possible it will improve in the next few weeks, and we also learned that the center of his vision is probably fine, and it is the edges of his retina that are affected at the moment. So we'll be eagerly awaiting the next few exams.
Jan 27, Wed.
not weighed
  So far the preliminary results from the lumbar puncture are negative, and that is good (i.e. not meningitis). 
  When we visited last night he was more responsive, with his eyes, though his movements showed he was still tired. He had had no spells all afternoon, and the nurse said that the anti-biotics were probably starting to kick in. They changed his isolette so that he could be in one that would monitor his temperature.
  All was fine as well when we phoned the hospital at 1 am for a check-up.
  But this morning, his congestion got worse, he was coughing more, and he had a whole bunch of spells. They had to pump up the oxygen to 40 (I think it is milligrams of Oxygen in reference to his nasal prongs. His usual is 8-10) to keep his blood saturated, and they also placed an additional oxygen source near his nose to give him a further boost.
  They decided that he could use some more help breathing, and some closer attention from the nurses, so this morning at 10 am he was moved back to NICU Level 3. The respiratory therapist was going to insert a short tube connected to the ventilator (the short tube supplies some pressure along with the oxygen to help his breathing, while the nasal prongs simply provides oxygen when he breaths).
  We're not going to consider this a set back, but simply an aid to help him get better. He coughs, 2 in a row, about every 5 minutes right now, and, on a lighter note, they sound like little cartoon coughs! They will go back to suctioning his lungs to help clear them better. His coughs just aren't powerful enough to dislodge anything.
  For the anti-biotics, they put in an IV. But of course with Sullivan it is never simple. The one in his foot got blocked, so they put it in his other foot, and today it is now in his arm. They also drew blood from one hand, and had attempted an IV in his other hand! He is quickly getting black and blue again.
  He was opening his eyes this morning in response to us talking to him. So that makes us feel good. He is in good hands, and since he's a fighter, he'll be back on the road home soon.
Jan 27, Wed.
  After putting in the short tube Sullivan was still requiring more oxygen, so they removed the tube and inserted the long tube that goes right down into the lungs.
  That has improved things, but because his low hemoglobin is also interfering with his ability to oxygenate his blood, they are once again considering a transfusion. We'll hear more on that this afternoon.
Jan 28, Thurs.
1440 grams
  The weight taken last night is somewhat suspect because Sullivan has been retaining water during this latest sickness. He was really puffy yesterday in his eyes, cheeks, neck and feet.
  So, last night when he got his transfusion, they also gave him lasics to help get the fluid out. He is looking better this morning because of that. He is pinker and less puffy.
  He is only on room air, and the ventilator is turned down to 15 breaths per minute. For quite a while he was "riding the ventilator", meaning he was only breathing when it breathed for him, but that is okay, because it allows him to use less energy.
  Once again, because of the ventilator tube, he has no voice. He was trying to cry when the nurse was doing his blood work but nothing was coming out. Poor little guy.
  He's hanging in there.
Jan 29, Fri.
1460 grams
  I'm sorry to say, another rough night. Although he looked like he was doing well when we left last night, they had to keep increasing his oxygen, and the ventilator rate to keep his oxygen saturation to the level they wanted. By morning, he was at a rate of 20 breaths per minute, and the oxygen at 40% (he usually is usually set between 21% (room air) and 28%).
  His blood gas tests revealed a high concentration of CO2 and a low concentration of O2. They tried using a "puffer type" drug to open his airway but to no avail (ventalin?). So they changed him to a high frequency oscillatory ventilator.
  Instead of using "puffs" of air, it instead delivers mini "waves" of air. The machine can deliver 300-3000 "waves" a minute. The waves are measured in hertz, and Sullivan's rate was initially set at 12 hertz (or 720 "waves" per minute). His lungs will pretty much be constantly inflated, but at a lower pressure than the other machine. All this is in an attempt to break-up the congestion in the upper quadrant of his right lung. 
  We waited around to ask the doctor questions, and she showed us the x-rays which showed the congestion. All the blood work came back negative for bacterial infection, so that means it is viral (like a cold or flu) and they simply have to let it run its course.
  In the process of moving him to a new location in the unit, his ventilation tube came out and his IV's stopped working, so those had to be put back in.
  On the whole, a very rough, edge of your seat day. We can only wait to see how well he fights this off.