Note: Jacob Raymond Walker was born 12 weeks prematurely at Duke University Hospital the morning of Monday, May 19 2008. The following are updates, notes, & observations on his growth & development.
It's been a quiet holiday weekend here at Duke University hospital. Jake's really had a wonderful week as his breathing continues to be excellent and he's working on putting on some weight as well. He's also growing fonder of his pacifier, which he tries to keep a grip on. Hopefully he'll settle into this pattern so he can just rest up, put on weight, and grow until we can take him home.
In the respiratory department, Jake's been on the nasal cannula unit (definition in the handy glossary) for the 2 & half weeks. As correctly mentioned previously, the NC is the weakest form of breathing support and the doctors have been steadily turning down the dial of airflow help. However, as incorrectly mentioned previously, only now is Jake at its very lowest setting (.5 liters/min), while before he was actually at 1.5 liters/min.
He's still doing well on the (true) lowest setting & assuming that continues through tonight, he'll be off it entirely and back to breathing on his own. He's had a couple of stints breathing himself (the first was right after he was born which earned him the 'rock star' moniker), but hopefully this should be the final switch. Breathing without assistance is important not only because it would be a pain to lug around an NC machine for life, but its also a prerequisite for the exciting world of bottle feeding, which he would start soon.
The other goal is to put on weight and Jake's doing a pretty good job in that department too. Since his allergy scare, he's been on pure breast milk without any additives or fortifiers that add extra calories & nutrients. Still, even without the extras, he's now up to 2 pounds, 14 ounces and we can see that he's noticeably fuller in his face & extremities. Certainly he's still pretty skinny but its nice that his face is more rounded & his ribs aren't so prominent. We'll say that now he's less Manute Bol & more Kevin Garnett,
The only 'new' development is we've now given him his first 'big boy' bath. He gets them twice a week and all his previous baths were of the sponge variety and done within his isolette. On Thursday we actually put him in a little tub of water & gave him a proper scrub down. He may have been less than thrilled during the process but he calmed down well afterwards. We repeated the process today and he was much more calm so we think they're growing on him....
Addendum:
- Big thanks to our good friends Stephanie & Nathan who were not only kind enough to grill up a classic 4th of July meal (burgers, corn, & potato salad) for us but schedule it to fit right in TCN dinner break. Hope everyone had a good holiday....
Note: Jacob Raymond Walker was born 12 weeks prematurely at Duke University Hospital the morning of Monday, May 19 2008. The following are updates, notes, & observations on his growth & development.
Yesterday was a bit bittersweet here at the Duke hospital as the Cubby passed what we consider his 'halfway point' in terms of when he might come home. He's been here just over 6 weeks since being born right down the hall on May 19. From the start, the doctors told us the general rule is to expect him home at his due date which was August 13. Off the record, we've heard chatter that he's doing rather well overall & he might be able to go home early, but that's something we shouldn't count on.
As if to underscore the point, Jake--who I've started to dub 'Mr. Burrito' when swaddled as above--is doing quite well lately. In fact, his 'halfway day' might have been his best day yet. He didn't have any apneas or brady episodes at all (which is a first for him) and he tolerated his increased feeds just fine. His blood pressure is now under seemingly reliable control thanks to the propanerol which lets us sleep better at night. He also has a new nephrologist assigned to him who at least has a theory on why he's got elevated blood pressure.
As mentioned before, Jake's left kidney is known as a 'pelvic kidney' and its smaller than his right one (which is normal sized for his age). The doctor believes that the smaller kidney has some scar tissue in it that is secreting excess amounts of renin, a hormone that regulates blood pressure by constricting vessel walls. The good news is he had another kidney ultrasound and yesterday and both his kidneys are growing, with the smaller one at a higher rate than the regular sized one. The doctor thinks we'll just need to support him with the propanerol in the short term and eventually he won't need it as the smaller kidney grows.
The day was bittersweet not only as a milestone for the little guy but it also marked the departure of Courtney, one of his favorite nurses. The previous post discussed how the nursing teams work here at Duke & I mentioned that he had a 5 person team plus an 'unofficial favorite'--which was Courtney. She wasn't technically on his care team because she had her own primary patient but because Jake was right across the room from her primary she often cared for the Cubby too (the ICN rooms usually have four babies & two nurses to a room).
In fact, Kristin flipped through Jake's journal (where we write each days notes, medicines, etc...) and he actually had Courtney the most of any of the nurses. Courtney's husband took a job transfer to work at Tennessee, where both of them went to school & while she was excited about the move, she was sad to leave 'her two boys' behind. Due to some scheduling magic, she was able to spend her last two working shifts here in the TCN (where her former primary is too) and it was great to see her before she headed west. We (along with Jake) wish them the best......
Addendum:
- Since I seem to mention the same phrases every so often I'm building a quick reference glossary in the upper right of the main page. It should contain definitions & links to the more common medical terms we throw about
Note: Jacob Raymond Walker was born 12 weeks prematurely at Duke University Hospital the morning of Monday, May 19 2008. The following are updates, notes, & observations on his growth & development.
We're pleased to announce that little Jake is still doing well. He's still hanging out in the transitional care nursery & it looks like he's in it for the long haul. A couple of days ago he was officially transferred over to the TCN doctor staff (they have their own nurses & doctors that are 'core' to the nursery) which just about sealed the deal.
We've enjoyed meeting the new nurses and practitioners but we've also missed our old favorites. As mentioned above, the 'core' nursing staff means that its rare that Jake will get to see his old nurses. The TCN has a standard stable of 12 or so nurses that specifically handle their own babies (there are only ~ 9 babies in the TCN at any given time while the ICN has ~ 40). The ICN works on a primary care philosophy that assigns most nurses a single specific baby that they will care for on each of their shifts (12 hours long, 3 - 4 days a week).
In addition to Annette (his current primary), Jake also has 4 other members on his care team (not to mention an 'unofficial' favorite) and we've been lucky enough that they were all hand-picked from the best. The rumor goes that a few of the higher-up nurses playfully jockeyed over who would get to be the primary nurse for the little guy & they settled it by putting most of themselves on his care team.
While this is great in theory, since the nurses were some of the most experienced ones in the ward they would often have other duties assigned to them (such as being the 'charge nurse' or leading research teams). This led to Jake not always being attended to by his team & his previous primary volunteered to step down (while she was great, because she has so many other responsibilities she almost never actually got to care for Jake) and a few weeks ago she & the team recommended Annette to fill the role.
Though she's relatively young & less experienced than the rest of the team (who average over 15 years each) she's great-- we couldn't be happier. The problem now is it's hard for Annette or anyone else to be assigned to him now that he's in the TCN. If there's ever a TCN 'core' nurse available that's who he'll get. She can only sneak in if there's an opening for the day (either by vacation or illness).
Regardless of the nurse assigned, the little boy is doing wonderful. He's still breathing very well and is literally on the least amount of assistance available (they turned his Nasal Cannula down to its lowest airflow setting). He also passed his initial ROP screen with flying colors which bodes very well for him having normal vision.
They are steadily increasing his feeds; he's currently at 140ml/kilo (the previous high last week was 180ml/kilo). His weight last night was 1197 (his previous high was 1185 last Friday) so he's up a little but has essentially plateaued for about a week which means the whole allergy scare cost him about a week's of growth.
However, a former nemesis has returned--for some reason unknown to the doctors his blood pressure has increased to the high levels of a month ago. He's been put back on the Propanerol (the same med that caused his resting heart rate to slip to 95 awhile ago ) but at a much lower dosage. Though his rates are still elevated & there have been some dosage adjustments, the medicine is working all right & the doctors seem satisfied so far. Other than that, we're very pleased that he's doing great.
Note: Jacob Raymond Walker was born 12 weeks prematurely at Duke University Hospital the morning of Monday, May 19 2008. The following are updates, notes, & observations on his growth & development.
Always remember rule #1--"Never trust a preemie." I'm now comfortably lounging right next to Jake back here in the transitional care nursery. You've read that right--little Jake's now back in the big leagues.
Yesterday, Jake kept improving and it turned out that he just had a bad reaction to his milk fortifier which we sort of suspected. His white blood count never rose, he has a history of sensitivity to the milk fortifiers, & his belly distension coincided with the increase in the fortifier amount (I've been at the hospital less than 2 months & I think I'm Dr. Ross).
He's now back on feeds though they started back at square one & are slowly increasing the dosage. He was up to 180ml & yesterday we started off at 40ml. He's handling the food just fine & this morning the doctors doubled him up to 80ml. We're just excited he's back on the food as he was visibly cranky yesterday and it was pretty clear from his constant sucking on his pacifier that he was hungry.
The whole feeding routine is quite interesting. Since he's too small & his mouth is too weak to actually feed on the breast, we (that's Kristin) pump his milk and they give it to him via a small feeding tube (through his mouth or nose[!]) that empties into his belly. The milk is put in a large syringe & a mechanized pump slowly pushes it into his stomach.
Since he doesn't know how the milk gets there & he has the natural urge to suckle, he often gets a pacifier when he's getting fed. That way he associates sucking with a full belly. This of course made it extra sad yesterday when he was sucking like crazy on the pacifier but not getting any milk. I suppose its a different version of nipple confusion....
Note: Jacob Raymond Walker was born 12 weeks prematurely at Duke University Hospital the morning of Monday, May 19 2008. The following are updates, notes, & observations on his growth & development.
One of the more common sayings muttered by doctors & nurses around the ICN is 'Never trust a preemie.' Loosely translated, it means that no matter how good or bad things seem you never know what's going to happen next and a baby's condition can change in a second. If we've learned anything over the past 5 weeks, it's a popular aphorism for a reason--it's true.
When we last left our hero he was in the transitional care nursery where he was doing fine except after feeds his belly had started to distend when he was being assessed. Distended abdomens can be a signal for a range of issues, from simple gas to various life threatening conditions. As Jake's belly began to get bigger over the course of 18 hours or so they sent him back down to 'the minor leagues' (the ICN) and started preparing for the worst.
One thing we have to give Duke credit for is they waste no time in jumping into proactive treatment if they have a hint that something isn't right. This kind of thinking is critical when dealing with very little kids who don't have time to recover if something goes wrong. If they have even a tiny suspicion that a baby might be getting sick they stop their feeds, grow blood cultures in the lab that will show an infection, and start them on mandatory antibiotics for 48 hours. Much to our surprise, this is where we found little Jake when we called to check on him at 3AM.
After hearing the news, K & I didn't sleep much the rest of the night and went to the hospital this morning. We spent the day with him and the doctors told us they were looking at two options--he might be having an infection (which while sounding simple can be dangerous in preemies) or he could be having an allergic reaction to his pregestimil milk fortifier (which he has a history of).
The latter would be preferred as it would far less risky for him (and seems logical given that he's been very sensitive to medications & previous fortifiers) but its too early to tell. If there's any good news here, they've eliminated the possibility of NEC, which is one of the most dangerous conditions a preemie can have.
However, we've been with him all day and his condition has improved. The strange thing is that outside the specter of a possible infection hanging over him, he's had a great day. His breathing has been as good as ever and though he seemed a little lethargic this morning he picked it up as the day went on. His belly has also shrunk back down to his normal size with some help from a repogle tube, which vacuums out excess air & bile in the stomach (a medical device that's so obscure there isn't a good link).
Jake's also been getting x-rays of his abdomen every 12 hours and they show it stable & improving. Assuming the next one is consistent, they will start his feeds again at a lowered rate (using pure breast milk without fortifiers) tomorrow. It will take time to see if the blood cultures grow any infection samples (they take 24 - 48 hours) but an encouraging sign is that his blood work yesterday didn't show any increased white cell counts (which are a sign of infection) and all his other vitals are strong. He'll get another round of blood work tomorrow.
We're certainly concerned about the little guy but we're feeling much better than we did last night. We're especially relieved to know he doesn't have NEC (though following a recent pattern I was more stressed than Kristin as the only symptom he had was the distension). Hopefully he won't have an infection or at least just a minor one (the nurse practitioner suggested tonight he might have a urinary tract infection). At the moment, Ben (the stuffed version) is coaching him up for his return to the TCN major league. Whatever happens, we'll keep you posted.....
Note: Jacob Raymond Walker was born 12 weeks prematurely at Duke University Hospital the morning of Monday, May 19 2008. The following are updates, notes, & observations on his growth & development.
As we've mentioned more than once things can change very quickly in the hospital. And even when these changes are positive, they can still create stress & worry. We last left the Chronicles on Thursday when Jake had went back to the Nasal Cannula (the 'weakest' form of breathing support). Even as he was doing well with it through Friday we wondered when he might have to go back to the CPAP machine (which provides more air pressure to his lungs).
Yesterday morning we called the ICN to see how he was doing and to see if he was still on the NC. Much to our surprise they said that not only did they take him off the NC at 8:30AM to let him breathe on his own, but they were going to move him from the intensive care nursery to the transitional care nursery (TCN).
Most of you know I'm not a big baseball fan but for some reason a sports phrase--and a hardball one especially--seem apropos here. The best way I can describe the move is that Jake got called up from the minor leagues to the show. The TCN is essentially a holding area for preemies and smaller full term babies who don't have any major medical issues and just need a place to rest and grow.
While its a very exciting development, the whole change seemed very abrupt and I think Kristin & I were a little caught off guard. We had settled nicely into the routine of the ICN over the past 4 & a half weeks. We were in the same room with the same familiar nurses and pretty much had the routine down. Now that he's in the TCN, everything is new again, including his nursing staff.
So far we've liked the ones we've met but we'll miss his old favorites. Its also a little unusual because we still check in at the ICN (we always have to call back to his nurse to get permission to see him in case there's a procedure going on in the room) but the TCN is on a separate are of the floor.
Jake is by far the smallest baby in the TCN, and the only one in an isolette. Its kind of wild to see him among the different kinds of cribs with bigger babies in them. I like to imagine it as he's the young, new guy who's only been upgraded to the TCN based on his raw talent. A Cinderella story, outta nowhere...
He's still doing well and he's now at 2 pounds, 9 ounces (actually down from his Friday peak of 2 pounds, 10 ounces). He stayed on room air (breathing on his own) for 9 hours or so but he's now back on the NC as he was getting tired. There's a chance that he might get sent back down to the ICN if he ends up needing the CPAP again or something else comes up (its common for babies to go back & forth after a trial run). But regardless of if stays or if he goes its a great step that he's stable enough to have a shot at the big leagues....
Note: Jacob Raymond Walker was born 12 weeks prematurely at Duke University Hospital the morning of Monday, May 19 2008. The following are updates, notes, & observations on his growth & development.
Welcome to the 20th installment of the Cubby Chronicles and once again thanks for everyone's support as we witness Jake grow into a 'real boy.' We're (once again) here at the hospital & I'm trying to keep the promise of more frequent posting. Jake's heading into the weekend looking very good. As you can see above, he's already demonstrating his strength while cheering for Michigan in the hat his Gamma B made for him. He's had an excellent week and as mentioned in the last post he seems to be figuring out the whole 'digest food while still breathing' routine. Last night they put him back on the Nasal Cannula and he's been on it without any real incidents for about 24 hours. This is huge because while we were excited that he strung together some strong days on the CPAP, doing the same on the NC requires him exerting a little more effort breathing. So far he's taken the challenge well.Other recent highlights include him now up to the big 2 and a half pounds (which sounds more exciting than 2 pounds, 8 ounces). He's been doing well on the growing front; even after yesterday's 'big poop incident.' Jake hadn't had a a large stool yesterday even though the nurse (Annette, one of our favorites) sensed that he'd been trying for awhile. After examining his belly it was determined that he should have a little glycerin to help move things along. Well, right as Annette was placing a tiny sliver, the poop started coming--the best way to describe it is 'explosive.' It was all over the diaper, on him, on the nurse, and on his snuggly (the little bed that wraps around him). It took her an extra 20 minutes during the assessment to clean him up & replace everything. Jake isn't afraid to prove that it's a one way street down there.....
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