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

Purpose ofpage I will try to update these pages daily whenI get in. It is not that I mind people asking me how he is, but it willsave me repeating the same story over and over again which is a littlehard for me, especially if he has had a rough night. 
(Plus, my Boss may feel that I am accomplishingmore work if I am not always talking about Sullivan when he comes to mydoor!) 
Feel free to ask questions, but if you wanta 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 10am and I'll make this update my first task of the day) 
(When available, I will put images in heretoo, or at least links to them.)
Feb 1, Mon.
not weighed 
1500 grams Sun
not weighed Sat
  There is not much I want to say about the weekend. This wasSullivan's most challenging complication, and he almost didn't make it.Mom and Dad were at the Hospital from Friday night at 9:30 until 5pm onSunday. We slept for less than 2 hours in a patient room on Friday night,and got to use a "care-by-parent" room on Saturday night.
  The virus caused congestion in his lungs that became lifethreatening. The doctors worked feverishly on him over Friday night andinto the day.
  His is currently stable, but letting the ventilator breathfor him. The doctors are hoping he will begin to breath more on his own,as the morphine he has been on wears off.
  This has been a major setback, and he has been set back weeksif not more.

  The best you can do is to is to send positive thoughts towardsSullivan and to say a prayer for him. We know that many people are thinkingabout him, and praying for him, and it is that, along with his fightingspirit that has gotten him through this weekend.

Feb 2, Tues.
1590 grams
  Sullivan's condition is improving. He was much more alertlast night and this morning. He was opening his eyes and moving his fingersand arms and legs more.
  The doctors turned down the upper pressure on the ventilator.The breathing rate is still set higher than normal, but they'll get tothat once some of the other numbers are better.
  He is still puffy, so doesn't quite look like his usual self,but that is the least of his worries.
  He'll be getting another x-ray of his chest today to seehow the congestion is, the morphine will be turned down, and the nitricoxide in the ventilator will be turned down as well (on the weekend, nitricoxide had been added to the ventilator to dilate the blood vessels in thelungs to improve his blood oxidation).
  Last but not least, during the weekend, in an attempt tofind a site for an IV, they shaved the middle of Sullivan's head. Alas,it was all for not, as they weren't able to establish one there, and nowhis head that we love to rub, is like sand-paper! Oh well, there is alwaysthe patch at the back of his head that we can rub. (They finally establishedthe IV's in each of his arms. One was for his drugs, and blood transfusion,and the other which was actually an arterial line was so they couldtake blood samples without continually poking him.)
Feb 3, Wed.
1570 grams
  Sullivan is really doing well. He is breathing a lot moreon his own, he is alert and squirming more, like his usual.
  They are continuing to turn down the morphine, and nitricoxide. He still has the ventilator tube in his mouth instead of his nose,and they will hopefully change that soon. He is able to keep the oxygenlevel in his blood up at a good level, with only 38% oxygen. The ventilatornumbers (high pressure, mean pressure, rate) still need to come down further,but that will  happen.
  He is also not as puffy as he has been. They gave him morelasics last night, and that got rid of some of the fluid and he looks better.That also explains the drop in weight. 
  We haven't held him in a week, and we are looking forwardto doing that again soon.
Feb 4, Thurs.
1590 grams
(3 1/2 lbs)
Happy Birthday to You,
Happy Birthday to You,
Happy Birthday dear Sullivan,
Happy Birthday to You
  Today, Thursday February 4, is Sullivan's due date. Had all thingsgone the way they were supposed to, Sullivan and Griffin would have comeinto the world today.
With a premature baby, you measure developmental milestones fromtheir due date. So from this point until about age 2, his due date willbe used to calculate his corrected age!
  So although Sullivan is currently 12 weeks and 4 days old,for developmental milestones like crawling, walking, talking, etc. we willrecalculate his age from today. For example 2 months from now we will referto his age as 2 months corrected. This is because even though he came outin November, he really should have been inside developing, so the timespent from November to February, he was simply catching up to where heshould have been. He will generally NOT be 3 months advanced on other babiesexcept facial expression/interaction and maybe head control.
  He had a restless night last night. According to his nurse,he was awake all night. The morphine was stopped, as was the nitric oxide.The ventilation machine is still set at slightly higher than normal pressure,and he is requiring around 35% oxygen. He is breathing more on his ownnow, with the machine providing about 1/2 of his breaths.
He still has the following connected:
-ventilator (long tube into lungs)
-heart monitor
-respiration monitor
-ground for the above sensors
-CO2 monitor
-O2 monitor
-Arterial line in his arm
  (an IV in an artery for drawing blood)
-IV in his foot
  (an IV in a vein for infusion of drugs)
-feeding tube in his mouth to his stomach
  Hopefully, some of this will be coming out soon.
Feb 5, Fri.
1615 grams
  Sullivan is getting restless. He really dislikes the breathingtube in his mouth. Maureen and the nurses have had a hard time trying tosettle him. He just seems agitated. 
  The ventilator has slowly been turned down and the pressureis now 18 over 6 with a rate of 12, and as before he is breathing moreon his own. The doctors may extubate him today. I don't know if they willgo from this long tube to the short tube, or back to nasal prongs. I supposethat may be determined by how well he is breathing once they take him offthe ventilator. Here's hoping he does well today, and gets back to Level2 nursery soon.
Feb 5, Fri.
  Sullivan was taken off the long tube ventilation, and puton CPAP (Continous Positive Airway Pressure) thisafternoon. It is a ventilator that supplies Oxygen under pressure so thathis lungs stay "inflated" (ie when he breaths in, the air can "rush" in,because it's under pressure. It makes it easier for him to breath). Toattach it, he has to wear what looks like a little hat with the tubes attached(I haven't actually seen it to be able to describe it better!).
  He still seems more fidgetty and hard to settle. Not surewhat that is caused by, or if it just him being a baby! He is on about35% Oxygen. He was also moved out of the isolation/treatment room backinto the general NICU.
  He was finally found to be RSV +ve so moved back to Isolationroom in the late afternoon. (that is the virus they suspected he had inthe first place!)
Feb 8, Mon.
1500 grams
1525 Sun.
1625 Sat.
  Happy 3 month BirthdaySullivan!
More birthdays than the average man, its the incredible shrinking baby!Not to make light of it too much, we think because Sullivan is becomingso active that he is burning a lot of calories, and that is why he is losingweight. 
  Maureen held him for the first time in over a week on friday.I held him as well (kangaroo care, skin-to-skin)on Friday night.
  He had a good quiet weekend. He tolerated the change to CPAPwell. He was more fidgety though, possibly because the "hat" made him hot.On Saturday he was pretty quiet.
On Sunday morning, the doctors changed him to the low flow nasalprongs. The nurse let him sleep as much as possible to let him adapt. Heis tolerating it well. After holding him on Sunday afternoon, and puttinghim back into the incubator he was very hard to settle. I guess just beinga baby, but we're not used to it. The nurse was concerned because if heexpended too much energy he might not have enough energy to breath properly,and would have to come off the low flow! He eventually quieted down, andhe is still on the low flow this morning.
  It is amazing the progress he has made in a week. He hasonly the low flow on, he has no IV's in, and he is back to full feeds ofbreast milk (30ccs every 3 hours).
  If his virus tests come back RSV negative today, then he'llget moved back in with the general population from his "presidential suite"isolation room. It has actually been nice to be separated from the rest.A little more peace and quiet from the general hub-bub of the unit!
Feb 8
*** I've forgotten to mention that he definitely has a voice now.When he is fussing, he is being more vocal. Still not very loud, but heis expressing himself. Maybe he had to wait for his due date before hecould let loose!
Frequent traveller program pts accumulated = 13
(pts may be redeemed, when ready, for free trip to Parents house)
An accounting of Sullivan's travels:*
(*note: early arrival and transfer from resuscitation room to NICUnot covered under Frequent traveller program
  1. Mt Sinai NICU to Hospital for Sick Children Kids NICU (re:NEC sickness)via tunnel 
  2. Hospital for Sick Children Room 4 to Room 7 
  3. HSC to Mt Sinai via tunnel (despite 3 week absence, original bedspace obtained) 
  4. Mt Sinai to Hospital for Sick Children (re:Central line removal) viatunnel 
  5. return trip to Mt Sinai via tunnel 
  6. NICU to Level 2 Nursery 
  7. Level 2 Nursery to NICU (re:lung congestion) 
  8. NICU corner bed to central Nurses station location 
  9. NICU central location to isolation room 
  10. isolation room back to general NICU 
  11. RSV +ve, so return to isolation room (same day as above) 
  12. isolation room back to general NICU
  13. NICU to Level 2 Nursery
...so far
Feb 9, Tues.
1420 grams
  Sullivan continues to lose weight. He dropped another 80grams last night. The doctors are probably going to change the fortifierthat is in his milk to see if that can turn things around. (that is a lossof almost 1/2 lb in 3 days!)
  He retested +ve for RSV yesterday, so he has to remain inthe isolation room. In fact, another baby has tested +ve for RSV so Sullivanis now sharing his room with another baby. The hospital is also steppingup the infection control procedures. We now require masks, gloves and gownswhen entering the room. There is no concern for us, it is just the worryof it spreading as we walk through the NICU from his room!
  He still has a cough, and though the virus should only remainactive for 7 - 10 days, it may take up to 6 months before his lungs recoverfrom any damage the virus may have caused (i.e. he may show asthma likesymptoms, and coughing for quite a while! poor guy)
  He may get to breast feed again today. That will be the firsttime in almost 2 weeks. Maureen can't wait to get going again. Sullivanis feverishly sucking when he is now given his soother. I think he is ready.
  I have quickly scanned some more images. This latest Gallery7, shows Sullivan getting his first bath from mom, and another weighingshot!
Feb 10, Wed.
1470 grams
  Sullivan gained back a little of his lost weight last night.Yesterday he was switched to alternate feedings of breast milk and highfat formula. That should help him gain weight.
  The isolation techniques are still in place; mask, gown andrubber gloves required when you enter his room. That doesn't make it veryenjoyable for Maureen when she tries to breast feed. The doctors tell usthere should be no danger in him being reinfected by the baby that wasjust moved into the room. Sullivan should have enough immunity built upto be able to resist an new infection.
  We are now waiting for 2 consecutive -ve RSV results so wecan get back into the unit.
Feb 11,Thurs.
1485 grams
  Sullivan has gained back some more of the weight he lost.All is good. He is feeding well, and his temperament is good. 
  We are still waiting for the RSV test results from Wednesdaymorning to see if he'll get out of the room soon. It is crowded and hotand we can't wait till they let him out.
  He still has a bit of a cough, but he looks well, and heis reacting well.
Feb 12, Fri.
1490 grams
  Another step up the ladder to getting out of NICU. Sullivanwas moved out of the isolation room yesterday afternoon, and back intothe general population of the NICU. We haven't talked to the doctor, butthat means he is RSV -ve, and the virus has passed, or at least run itscourse.
  He is looking good, and breast feeding well.
Feb 15, Mon.
1640 grams
n/w Sun.
1525 Sat.
  By leaps and bounds, Sullivan is a star. He was moved toLevel 2 Nursery Friday afternoon. He grew over 100 grams on the weekend,and is still feeding well (they are still alternating formula with breastmilk). He still weakens and gets tired when feeding so he is still to smallto be able to get all the nourishment on his own. About half his feed isstill through the tube.
  His aunt, uncle and cousin from Saskatchewan visited, asdid his aunt, uncle and cousin from Ottawa. Our celebration of Valentinesday was subdued, but we did decorate his isolette with little cupids. Laterin the day, Peggy moved him into a clean isolette.
  He needs to grow and put on weight, and gain his strength.He also still requires more oxygen when he is handled, so he still hasa little way to go before he can come home.
Feb 16,Tues.
N/W Mon.
(only weighed 
every 2 days 
in Level 2!)
  Another baby has been diagnosed with RSV, the respiratoryvirus. Because of this, they have implemented "sterile" procedures forthe whole Level 2 Nursery. That means anyone who is going to touch a babyhas to wear a mask and gloves. It just happens to be the season for thisvirus. We hope Sullivan's resistance is still built up.
  He is still a "grabber". On Monday, he pulled out his feedingtube, while he was being fed, milk everywhere. He had to have his bed changed.The nurse says it was then a fight between her and Sullivan to get thetube back in. He didn't want it in and she did. She says she finally won,but it was a big struggle.
Feb 17,Wed.
1665 grams
  He breast fed for 50 minutes this morning, and so his feedthrough the tube wasn't given. It may have been a bit excessive, sincehis usual is only 15 minutes, but he does have to learn to how to feed,and if he can get enough for a full feed, that is great progress.
  He required more oxygen during this process, but once settledback in the incubator, his oxygen needs decreased.
  The sterile procedures are still in place, so we're stillcoping with the masks and gloves.
Feb 18,Thurs.
  All is fine. So fine, in fact that I may have to start givingweekly updates if things continue so smoothly.
  He continues to feed well, and grow oh so slowly.
Feb 19,Fri.
1685 grams
  Somehow my yesterday update got lost! I'll try to recreateit, but basically no change.
Sullivan is slowly growing, very slowly, but his is still alternatingon breast milk and formula. He is now feeding for 30 - 45 minutes a session,and Maureen is at the hospital for 2 - 3 breast feeding meals a day. Theother meals he gets fed through the tube (which he pulled out again lastnight).
  We have given the nurses permission to give him a bottlein the middle of the night if he won't calm down. He gets very franticwhen he wants to suck, and the soother just doesn't cut it at those times.With this permission (which the nurses must seek) he'll get held as well,which will help calm him. That should be better for him.
  In the morning at 9am, he is waiting for mom to feed him.He is very alert, and a bit cranky when we arrive, but calms down immediatelyafter we take him out of the incubator and put him to the breast. He islooking around a lot and is starting to look at our faces.
Feb 22,Mon.
1710 Sun
n/w Sat
  Big move today. Sullivan is going to move to a cot,from his isolette. The cot has an open top, and this is an indication thatSullivan is regulating his temperature well. The isolette is used to protecta preemie from germs and to help maintain its temperature.
  He gained another 25 grams over the weekend. He seems tobe gaining at a constant rate of about 1 oz every 2 days. (1710 grams translatesto 3 lb 12 oz.)
  He still requires extra oxygen when he feeds, but in those2 feeds a day at mom's breast, and he gets a full feed, and no supplementthrough the tube is required.
  He managed to regurgitate the feeding tube over the weekend.It was going in his nose, and though it was taped there, it ended up comingout his mouth! I guess he's trying to tell us something.
  He is very alert when we go in. He cries a bit when he needschanged, but he is generally very quiet.
Feb 22
  Sullivan has successfully completed the move to the cot.He is quite bundled up for now, to make sure he does okay. All monitorsare still attached. His primary nurse Peggy is on today, and she made thedecision to move him to a cot.
  He had his weekly eye exam, and one eye is now showing onlystage 0 where it had been stage 2 (that is an improvement. Once again,the number is describing the  stage of development of Retinopathyof Prematurity). The other eye is still stage 2.
  They used the "clockwork orange" clamps today duringthe procedure. They are little clamps that pry open the eye lids,keeping them open during the exam! (poor little guy. The things he hasto go through!)
Feb 23,Tues.
1810 grams
1810 grams
Sullivan has Tripled
His Birth Weight
  Last night, Sullivan weighed in at 1810 grams. That is 4.3 gramsshort of 4 lbs. He didn't feed so well last night, but that might be dueto the stress and exhaustion of the eye exam. It isn't a pleasant procedure,and he struggled a lot.
  He does not seem to be phased by the cot and the differentnoise levels that it allows. He is maintaining his temperature.
Feb 24,Wed.
  Sullivan is making good progress. The last 2 feeds, he hasnot required extra oxygen with feeding. 
  He was crying this morning when we got in, but calmed downas soon as we picked him up. He is definitely figuring out our scheduleof feeding him in the morning, and I suppose he is looking forward to it.Maureen is trying to feed him 3 times a day now, with the nurses feedinghim through the tube, the other 5 times.
Feb 25,Thurs.
1840 grams
4 lbs and growing.
Sullivan officially crossed
the 4 lb barrier last night.
  Sullivan is quickly achieving many milestones. 
-He is now over 4 lbs
-He is in an open cot and maintaining his body temperature
-He is not requiring extra oxygen to feed (generally)
-He is getting most of his nutrition and calories from breast milk(the lipids have been removed from the formula feeds he gets)
-He is feeding 2 - 3 times a day from the breast
  He is making wonderful progress.
  The sterile procedures were lifted 2 days ago so visitingis much more comfortable as well. Mom and Dad are getting much more comfortablelooking after Sullivan as well. Being in the open cot makes it much easierto change diapers, and to pick him up as well. He still has a heart monitor,a respiration monitor and an O2 monitor connected, but because he is onlygetting 5 ccs of oxygen when he is resting, the O2 monitor (red light againsthis foot) may soon disappear!
Feb 26,Fri.
  Sullivan is very attentive these days. Wide awake, and lookingaround, and if you can get into his field of vision, he will look at you.
  The cot is great. Much easier access to him. More like beingat home.
  I have added a mini ValentinesDay Gallery (#8). He's wide awake in all three images.
January 1999 January Updates
December 1998 December Updates