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.....
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'm writing this shorter (but hopefully the start of more frequent) post while sitting at Jake's bedside thanks to the wonders of modern networking technology. Duke has a fast but unreliable wireless access that drops or resets the connection from time to time (yet I have to give credit where its due--unlike most things at Duke it is free). I downloaded Firefox 3 the other day and it let me save the connection settings for the Duke login page which has made it a little more stable.
I'm happy to report the little guy is still doing well. He's handling his ever-increasing feeds & he's now up to 2 pounds, 6 ounces. Assuming he doesn't have any setbacks, the goal from here on out is to just gain weight. Ideally he'll gain 30 grams (~ an ounce) a day.
He's still working on figuring out the breathing while eating deal but he's had very few A's & B's this week which is awesome. The reflux might be going down with the gentler fortifier but whatever it is its working. Hopefully he stays the course & remains 'boring' in medical terms. Whatever happens, we'll let you know....
Addendum:
- For those that don't read the comments (& I encourage people to read them; they're a good time) the truth has been revealed--my dad doesn't remember any Cosby Show-type bonding experience on the trip down to San Diego. I'm not too surprised and its probably a good lesson for me that I might not know when I'll be having a special moment with Jake.
- In what has to be a software conversion gone horribly wrong, the Costco Photo Site still isn't able to share any photos from our albums (originally mentioned in late May). As most of you know, I love Costco but I must admit this (& the 40 character description limit) is trying even my patience. We'll keep you updated....
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.
Well yesterday was my first official father's day & opening a card addressed to 'Dad' was kind of wild. Kristin got me some cookies from a local bakery & she worked with some of the nurses to secretly pose the little guy with an outfit for a photo which she framed for me. As you can see in the picture above I'm holding the snuggly he's wearing and its for preemies up to five pounds--if you can't tell its huge on him....
Not for long though; Jake recently joined the 'Kilo Club' which means he now weighs over a kilogram (rather than he's smuggling cocaine out of Bolivia). His current weight is 2 pounds, 5 ounces which isn't too shabby. The nurses & doctors say that once a baby reaches over a kilogram they start to put on weight at a quicker & steadier pace. I suppose we'll see what happens.
Jake's doing much better than the last time I posted which is always a good thing. As I mentioned in the last post, the acid reflux isn't doing him any favors in the breathing department which is common for babies his size. After some trials though, it seems that he might have more issues with the milk fortifiers than the milk itself. Human Milk Fortifiers are thought to give preemie babies extra calories & minerals to help them grow faster.
However, some babies don't tolerate it well & the HMFs can create extra acid reflux. Since Jake had some issues with the standard fortifier, they held him to just breast milk for 24 hours & he did wonderfully. This evening they changed the type of fortifier to see if it reduces the reflux--the initial signs are promising so we'll see how it goes.
Speaking of father's day, my mom & dad were in town for the weekend (yes, we really do have an endless stream of relatives coming to visit) as they're heading out of the country for a few weeks cruise through the Baltic sea. They (rightly) figured he'd change quite a bit in the time they'd be gone so they flew in for the day Saturday & left early Sunday morning (its easy to do these kind of impromptu trips when one can fly for free). My dad got his own copy of the Jake photo & they actually had a few of their own framed for us.
Quick Fathers-day-related aside.....As I was driving to the hospital last week, Pearl Jams' remake of the song 'Last Kiss' randomly popped up on the iPod. Pearl Jam is my favorite band & in a circumspect way hearing the song always reminds me of my dad. The story goes that back in 1999 the 2 of us flew out to the west coast for the wedding of our good family friends Casey & Greg in San Diego. Due to the particular challenges of flying stand-by, we had to fly into the John Wayne/Orange County airport & drive down the coast.
On the way down I-5 ('The 5' if you're Californian) the PJ version came on whatever top 40 station we were listening to & my dad immediately recognized it. He said it was a big hit when he was younger and it led us to a few hours of good old fashioned father-son bonding. We talked about what kind of kid he was, what his interests were, and the kinds of trouble he got into as a teenager--essentially who he was before he became a dad.
I'm not sure how he remembers the trip but I always think of it fondly. Its also a reminder that nothing stays the same as I transition into becoming a father. I often wonder how I'll change & grow and how my priorities will shift as he gets older. I'm looking forward to making those kinds of memories with Jake and I can't wait to tell him the kind of guy I used to be......
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 can always tell when its been too long between blog posts because we start to get the concerned voice messages & e-mails from friends & family (essentially, everyone reading). As the lead blogger, my apologies for the delay and, as always, we appreciate everyone's concern. At this point it seems like there aren't enough hours in the day to do our jobs, keep the house & the dogs taken care of, & see the little guy as much as we'd like (the latter we could never do). The upshot of all that is two-fold--we haven't been able to do as much of the 'little things' as we'd like & we're not getting a lot of sleep which isn't a pretty picture.
On to the Cubby himself, lately he's been up & down. As his feeds have increased he's having spells where he struggles to keep his breathing & heart rate up (the aforementioned 'A's & B's'). The doctors & nurses believe this is due to infant acid reflux, which every preemie (& many full term kids) gets. Though I should stress to say he's still doing well overall, its hard to watch him when his vitals dip & there's a chance he might need more help breathing from the ventilator for awhile.
Duke has a reputation for avoiding 'the vent' whenever possible as when babies are on it for too long its force drawing & expelling air can lead to long-term lung problems. It should be fair to note, however, that some hospitals use the vent on all preemie babies for weeks regardless of how strong their lungs are. Jake only has been intubated for a little over a day total over his 3 plus weeks so there's not really any concern that a few days would hurt him.
Still, it stresses K & I out (especially me I think) when he's not doing well. Its funny because watching us in the ICN room is like the bizzaro world--Kristin is calm & I'm constantly looking at the monitors. The nurses swear I'm the type A one & Kristin is laid back one; if they could only see us outside of the hospital.
Personally, this is the time when its important for me to take the long view & realize how much Jake has accomplished & how healthy he's been. I remember worrying about his high blood pressure (which has miraculously cured itself), his kidneys (which the nephrologists now believe are normal), and possible brain hemorrhaging (which he didn't have). Sometimes it seems that all I do is worry instead of focusing on all the amazing progress has made. Here's to much more progress in the future.....
Addendum:
- Kristin's mom & sister Kathryn were in town until yesterday with our niece Lily. Of course it was great to see them & we appreciated the errands & housework they did for us while they were here. It was also helpful for me to have them here as I was out of town from Monday afternoon to yesterday evening (which naturally ratcheted up my stress levels).
- Previously I've mentioned my that my friend Amy recently had to be on hospital bed rest & delivered at 37 weeks for a situation similar to Kristin's. She was kind enough to send us a blessed coin depicting St. Gerard (the patron saint of expectant mothers & babies) that someone had given her at the hospital. Though we're not Catholic, I'm very touched and its now resting on my keychain.
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.
A few minor, yet exciting milestones were passed this week. First off, Jake turned 2 weeks old which is very cool in and of itself. He went back to the CPAP yesterday as he was having a few more Bradys and his lungs just need a little more help. He's since breathing better & the 'A's & B's' have dropped quite a bit. As mentioned previously, all preemies just have bouts of apnea & bradys & it can be a cycle of being on the CPAP, Nasal Cannula, or just room air (though hopefully not going back to the ventilator).
Overall though he's doing great & the doctors are pleased with his progress. His blood pressure has stabilized and his 'output' is very good. His kidneys are working fine and he's tolerating feedings (K's breast milk through a tube) well & they are upping the amount every day.
One of the benefits of him turning over two weeks is now we don't have to wear gloves when we touch or hold him. While this would seem to be a minor detail its very exciting to actually feel his skin (which not surprisingly is very soft). We've also got to kangaroo him a few more times which Kristin says she could do 'forever.'
Its interesting and perhaps a little sad how these little victories mean so much to us since there's so little we can do with him. A good example is I can count on one hand how many times we've kissed his head--every time is wonderful but the scarcity is a reminder of what it means to be the parents of a preemie.
However, we cherish all the Jake we get--we generally put in at least a full day's work at the hospital and while we're there we touch, hold, speak, & sing to him as much as we can (or as much as he puts up with as he can be overstimulated). And, as seen above, when we're not around he's got Ben & Chloe watching over him....
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 bit since the last update but all everyone needs to know is that Jake's doing very well. He's off the CPAP & for the past few days has been on a nasal cannula, the weakest form of 'breathing help.' He's actually breathing on his own & the tubes don't give him any oxygen (depsite what the link says); they just help keep his lungs inflated between breaths.
This is also the 5th or so day in a row where all his vitals (heart rate, blood pressure, breathing) have been good and his 'output' (e.g. pee & poop) has been strong too. The latter is quite important because the doctors were concerned that he might have some kidney issues but now the nephrologists are fairly sure that his kidneys are normal. Its kind of humorous that we're so excited about excrement but that's the way it works in the intensive care nursery.
The other exciting Jake development is that he's gaining weight--he's now officially 2 pounds, 1 ounce which is higher than his birth weight. All newborns (preemie or full term) lose weight their first week or so of life & slowly make it up. Since they've also increased his breast milk feeds (by 50%), hopefully he'll continue to put on some pounds. As you can see above, he's pretty sure he's becoming a big boy--even giving the 'large' two-handed pacifier a shot tonight.
In other news, my parents were back in town for the weekend and we had a good time with them & my 2nd aunt/uncle Denny & Georgia who drove up from Charlotte. Earlier in the week my sister Jennifer was in town & she not only enjoyed seeing Jake but also talking medical terms & procedures with the 'human' doctors & nurses. We've got a few days alone & then Kristin's mom & sister are flying in with that cute niece Lily...
Addendum:
- A quick intro to hospital charges & why its good to have health insurance. For those that remember, Kristin had some food issues when she was a patient at the hospital (essentially, it sucked). Duke had one of their staff dietitians come down to the room twice & discuss some other food options. We may have seen her a total of 10 minutes. We just received a copy of the insurance invoice & Duke is billing $376 for her services. I did some quick extrapolation on the figure for fun & if she was billed out at 40 hours a week that's ~ $4.7 million a year. Clearly I'm in the wrong career field....
- Apparently the Costco photo site won't be online until Wednesday, June 4. Sorry, we just pass along the info but we'll try to put a couple more shots up on the blog.
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