Has the pacifier
Losing the pacifier
Lost the pacifier
Looking for the pacifier
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.
The big news out of Durham is that the little guy is now up over 4 pounds!!! While not just being double his birth weight its also the magic number for Jake to go home. We mentioned earlier that he's ticked off most of the things he needs to do (breathe on his own, keep himself warm) & now that his weight is above the magic number, its all about the bottle feeding.
Jake is currently getting fed by bottle at least once a shift & we're working with the Speech people each day. I'm not sure if they're too territorial, too sensitive, or we just got stuck with someone that we clash with, but we haven't been too impressed with them. The real issue is they never catch him when he's fully awake and when he doesn't eat a lot (say, only 6cc) they assume he's 'not ready' or 'not stable.'
Of course when we're working with the nurses (who don't seem to be big fans either) he will eat 20 or so cc because he's fully alert & hungry. I imagine they're trying the best they can to catch him at his feeding time but its just not working. Luckily we get to practice on our own without them around at least half of the time.
I actually had my first bottle feeding experience last night (he took 16cc, BTW) and it went well. Of course when I was burping him mid-way through the feed he spit up on me but I guess its just the first of many. We were trying to figure out if I'll give him hundreds or thousands of bottle feedings in the future (given K will do some bottle feeding, there will be breastfeeding interlaced, & he'll eventually eat solid foods)--it looks like the latter but it could be right on the dividing line.
We also had some reassuring news yesterday from one of the lead attendings who believed that Jake would be home by his August 13th due date. While this is exciting news, we're getting less patient each day that goes by. As Jake has grown and matured our interactions & feelings have changed.
When he was young we were just so happy & relieved that he didn't have major medical issues & we constantly stressed about the challenges he did have. We would walk out of the hospital at night and hope he would breathe well overnight when we weren't around or wonder if his stomach would be able to handle his feedings.
Now that he's much more stable & we're able to hold and kiss him all the time, its tough when we have to put him back in his crib and know that he's alone (kind of like the extreme version of the Ferber method). We're excited to count the days down & each day it gets harder to leave the hospital without him. We looked at the calendar & we only have 2 baby-less weekends left, very exciting. Hopefully they go by quickly........
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.
I wonder how often I've started posts with 'its been awhile since...' but looking at the dates we're almost at a week since CC number 29. The main culprit in the delay was probably me traveling to Charlotte for a few days--actually, I doubt I'm fooling anyone. Of course, the main culprit of delays will tend be sheer laziness on my part. I was in Charlotte from mid-day Monday - mid-day Wednesday & even though he's doing well it doesn't get any easier to leave the little guy.
We've also had both my parents (over the weekend) & K's mom (during this week) in town & they really have helped us with getting some things done and running errands for us while we spent time with Jake. I think all of them were pleased/surprised with how big Jake's getting & the fact that they each were able to pull him out of the crib & actually hold him.
The Cubby has been hanging out in his big boy crib quite well over the past week. Though after a few shifts nurses have mentioned that his temp dropped a little, he's been fine for the far majority of the time. Jake's now up to 3 pounds, 12 ounces & we're excited as he's really entering the 'feeder-grower' stage.
From the last post you may recall that his last hurdle to heading home is eating on his own & he's done pretty well. The issue is the speech therapists come at scheduled times when he may or may not be awake. Naturally this directly affects his interest in/ability to eat which can be frustrating. We're hoping that his nurses will be able to work with him (as the speech people can be territorial) since they have the flexibility in their schedules to wait until he's awake & alert.
As the photo shows, not only is his weight up, he's really filling out & getting nice & chunky. I was describing him to a client yesterday & used the phrase--'he looks like a miniature baby' & its very true. His proportions & chubbiness are really starting to look like that of a newborn.
In some of the (many, many) pictures I take we'd be hard-pressed to tell he was about half the size of a full-term baby if there weren't any objects of scale in the shot. That's very exciting on its own, especially if one looks back at his older pictures, but we're looking forward to the day when he weighs the same as a newborn. Based on his excellent progress, that day is coming soon......
*--Vin Diesel-free
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.
If you happen to be amongst the few that read the amazingly inconsistent Twitter updates that appear on the lower-right side of the blog, you've been tipped off that Jake is now in a real crib. Of course, that's if your definition of a crib is something that looks like this. The rumors are indeed true & for the past couple of days Jake has been out in the cold, cruel world.
He's actually doing rather well with it for a guy his size. He's now around 3 pounds, 7 ounces & that's at the very low end of the crib eligibility scale. The hospital likes to make sure the babies are large enough to be able to manage their temperature well and Jake's doing all right with it. He has no problem keeping himself warm (ideally between 36.5 - 37.1C), but when he gets cold (after an assessment or examination) it takes him a little while to warm back up.
From our perspective its a big accomplishment & its exciting just as a growth milestone. Just being able to look at him in the crib makes him seem more like a baby & less like a hospital patient. And for a kid who still has a feeding tube & heart & respiratory leads that's comforting. The crib also give us much more access to him & since much of our time these days is spent holding him the added convenience is noteworthy.
In other news Jake is just starting to bottle feed and he's working with some specialists from the speech therapy unit (weird, I know) on how to manage sucking & swallowing milk while still remembering to breathe. He's only had a couple of sessions but he's had a good debut.
Essentially learning to eat on his own is the last major hurdle he needs to clear before he gets to go home (the other two being breathing on his own & keeping his temperature up) so we're exciting to see him progress. He's doing well with it so far and he really goes to town on his pacifier (showing strong ability) so we've got faith in the little guy...
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
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