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.Jake's been in either the ICN or the TCN for almost 2 months & its safe to say we're all a bit run down. When people see pictures of me & remark 'you look tired' its a pretty clear indication that more sleep could be used (though for the record Kristin always seems to look fine in pictures).
Of course, rest is at a premium because we're either constantly at the hospital, at work, or going to & from the hospital (~ a 45 min trip each way). Here's a quick average day for me in the past two months:
8:00AM - Wake up, feed dogs, head to hospital
9:00AM - Arrive at the hospital, hang with Jake & talk to doctors/nurses about morning rounds
12:00PM - Head back to Raleigh to work at the System Office building for the afternoon *
5:00PM - Drive back to the hospital
5:45PM - 6:30PM - Hang with Jake
6:30PM - 7:30PM - Dinner break--usually at Elmo's or Nosh (I recommend the Boo BLT)
7:30PM - 9:30PM - Hang with Jake & watch the evening assessment (when he's weighed)
10:15PM - Arrive back home, do house chores, feed dogs
11:30PM - Go to bed
3:00AM - Call hospital to check on Jake overnight
*--just as often I'll pick up Kristin & we'll both head to the hospital to visit all afternoon
First off the goal is to have at least one of us at the hospital most of the day. When I'm at work at the System Office Kristin would be at Duke & vice-versa. Kristin is working half-time at her job & while I'm working full time I'm often at the hospital all day.
I'm extremely lucky as I've got a job where I can work from anywhere for the most part & I have an understanding boss who lets me do so (and who's a big fan of the blog). We also have kind friends who help us out by letting the dogs out in the evening when neither of us are in Raleigh.
Keeping up this kind of schedule gets pretty exhausting & I suppose its starting to show. The driving also wears on us, especially when we're going back & forth multiple times each day. Its not cheap either--we figure each trip to go see the Cubby costs us $8.
Of course he's well worth it at double the price* & since he's bigger now we get to spend most of our time actually holding him instead of where we were 6 weeks ago--just looking at him or touching him. Looking back at previous posts, I haven't spent much time talking about his personality but he's a very calm & amenable guy. He hardly ever fusses about anything & its even rarer to hear him cry.
*--maybe even 3 times but certainly not 4
Since no one wants to see pictures of me (and for the record, I'm not actually sleeping in the picture above), here's a bonus Jake picture on the house.....
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.Its been a little bit between posts here as its been pretty hectic week in North Carolina as I drove up to DC for a work class mid-week. Thankfully, the little guy hasn't been bothered too much and for the most part he keeps trooping along. He keeps getting bigger & bigger, now up to a nice 3 pounds, 4 ounces.
In fact, he's only 14 grams away from 3 pounds, 5 ounces which is the magic number for moving out of the isolette & into a big boy crib. In preparation the nursing staff has been gradually lowering the temperature inside the isolette and he seems to do a good job of keeping himself warm. Contrary to the photo above, he's almost always in an outfit & when possible he's nice and swaddled too.
Jake's still having some issues with his blood pressure and the doctors are trying some lasix in addition to the Propranolol. He's also still having the acid reflux & the staff has decided to try him out on some Zantac to help relieve some of the acid after his feeds. Kristin thinks he has 'old man problems' more appropriate for a 60 year old than a 60 day old & I tend to agree.
Even though he's gaining a good amount of weight on pure breast milk, he's now back into the dangerous world of fortifiers. This time they're trying him on Ellecare, which is the gentlest one the hospital has. The idea is to not only give him extra calories but also protein & calcium. He's tolerated it so far, we'll see how it goes.
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.....
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