|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.
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.
| 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.
| 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.
(3 1/2 lbs)
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.
|Feb 5, Fri.
| 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
(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.
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!
|*** 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
Maybe he had to wait for his due date before hecould let loose!
|Feb 9, Tues.
| 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.
| 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.
| 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.
| 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.
| 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.
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.
| 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.
| 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.
| 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.
| 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.
| 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!)
He does not seem to be phased by the cot and the differentnoise levels that it allows. He is maintaining his temperature.
| 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.
-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!
| 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|