9
August
2008
Dorrie definitely seems to have inherited her mom and dad’s metabolism, which is both a good and a bad thing. Good because once we got her started gaining weight, she has not slowed down. Bad because for whatever reason, her length is still not keeping up with her body mass. Obesity is not great at any age.
This morning she tipped the scales at 20lbs 1oz, which means we are pretty soon going to have to think about getting her a new car seat. The problem: the next level of car seat is the convertible car seat, meaning the sort that can face rear and front. These are the kind of car seats that do not detach from the base to double as an infant carrier. For a normal baby that just means your average pain in the butt of hefting the kid into the car and out again. For Dorrie, with all of her tubes and equipment, it means we have to try and buckle her in carside while we also keep anything from disconnecting or becoming too stretched and thus pulling painfully on her body.
[Interrupting to eyeroll at Dubya checking his watch during the opening ceremonies. NICE.]
We’re also changing her feeding schedule a bit. For about 9 months now she’s been on q3 feedings, and with her constant puking we’ve been nervous about reducing the number of feeds and increasing the quantity of food she gets each time. First because, logically, more food = more likely to throw up, but also because less feeds = each throw up matters more. Result: paralysis. In any case, not that tube feedings are in any way ‘normal’, but perhaps if we spread them further apart she will start to develop more hunger pangs and a sense of when her belly is supposed to be filled. It should also give us a longer stretch of time where we feel she has digested enough food that she’s unlikely to return it. So this weekend begins the q4 feeding experiment, dropping from 8 feeds a day to 6. If it goes well, in a few weeks we’ll drop down one more, to 5 feedings a day.
Posted: little fat fairy, moving forward... or not, our little witch
30
July
2008
Since coming home at the end of April, Dorrie has left home precisely 3 times. Once to go back up to the hospital for Day o’ Appointments, once to go to grammy’s house for her birthday party, and now once to go to the pediatrician for her 1 year checkup.
The nurse who came in to take down her stats must have failed remedial baby measuring (her ear was caught in the head measuring tape, she was wearing a full diaper when she was weighed, etc) so I’m not going to bother to record the numbers.
We decided to delay the MMR vaccine this time, both because Dorrie is still recovering from her ick last week, and also because I think 2 shots at a time is enough for anyone. So chicken pox seemed more important, since there is actual potential for exposure if it came home on my clothes somehow. She handled the varicella and the hep A shots with minimal fuss, and did not even draw blood when she clawed at Bob’s chin. Overall she was well behaved, and we won’t count against her puking in the car seat before we left, puking in the car on the way there, or puking on the table in the exam room.
Posted: little fat fairy, medical morons, our little witch
12
July
2008
Done at DHMC:
Weight: 8.33kg (18lb 5.8oz)
Height: 64.5cm
Head: 43.8cm
Posted: little fat fairy, our little witch
5
July
2008
Weight: 8.19kg (18lb 1oz)
Height: 64.5cm (25.39in)
Head: 43.5cm
Not a whole lot of change over the last week, but everything’s at least heading in the right direction. Also, the weight was taken with a new scale now (an old, spring-driven dealie), so it’s probably not as accurate as the measurements with the digital scale. We’ll get better measurements next week during our visit to DHMC.
Posted: little fat fairy
28
June
2008
Weight: 8.15kg (18lb 0oz)
Height: 64cm (25.20in)
Head: 43.5cm
A pretty big jump in her height, probably mostly due to the fact that she was in a pretty good mood, so she wasn’t squirming and fighting while the nurse measured her. Also another respectable gain in her weight, which means she is probably still gaining ground on reaching a normal baby weight.
Overall, I would have to say we had a pretty good week. She’s still throwing up a little more than she was before we switched to the NeoCate, but the amount is tolerable. She’s also been pretty playful when she’s not having gas pains, which is nice.
We had a surprise visit from Dr. Optimist and her nurse to see how Dorrie is doing and to take blood for labs. The results weren’t as good as I had hoped — her bicarb was down, but not far enough to justify weaning her ventilator settings — but there wasn’t anything else exciting enough to report except that her hemoglobin was slightly lower than normal, so I’m not complaining.
Posted: little fat fairy, our little witch
21
June
2008
Weight: 7.88kg (17lb 6oz)
Height: 61.5cm (24.21in)
Head: 43.5cm
So her weight and head remain on their 35-40% tracks for her adjusted age, while her height continues to lag behind. If she manages to hit 8kg next week, or at least increase, probably we need to look at increasing her calories again. Dr. Optimist and the nutritionist from the ICN think that with her BPD and everything she probably needs at minimum 85KCal/kg/day. At 8kg and 8 feeds per day (which we’d really like to reduce, but that’s not going to be happening in the next few weeks), that means she needs 85KCal per feed. We’re at 80KCal/feed — not too far off, but starting to slip. And that, of course, is only if she doesn’t throw up half the food before it’s digested.
All that I’ve read suggests that the pukies should improve as her length does, because her esophagus will get longer and also will drop down a bit so the food will have a harder time coming up. Of course, that is the dimension that is lagging behind! I’m hopeful that now that she’s been off the hydrocortisone for nearly 2 months now that her growth will get going again. It had just really started to take off back in Jan/Feb when she had to go back on and it all ground to a halt.
Posted: little fat fairy, our little witch
16
June
2008
Weight: 7.74 kg
Length: 60.5 cm (no change :| )
Head: 43.25cm
So even with all the puking she still managed to gain half a pound in the past 2 weeks. Which is good and makes me a bit less worried over it. But it’s still going to drive us mad. At least we’re down to 2-3 pukes a day for the past few days, which is a vast improvement. Now we just have to get her volume back up to where it was and her pump speed to where it was (we lowered the speed to see if we could match her rate of digestion, and it seemed to help, but it was making feeds near continuous. We lowered the volume also by condensing the formula — instead of 80Kcal/4oz it was 80Kcal/3oz. As of right now, we’re up to 75cc/hour, so her condensed feeds are taking about 90-100m, still annoying but not in comparison to the 130-140m we had earlier in the week.)
Posted: little fat fairy, moving forward... or not, our little witch
30
May
2008
Weight: 7.5kg (16.5lbs)
Length: 60.5cm (23.8″)
Head: 43cm (16.9″)
Posted: little fat fairy, our little witch
26
May
2008
Feeding and digestion issues are as common with micropreemies as respiratory problems, and Dorrie has been no exception. From day one, where her esophagus was perforated, making her unable to eat anything for 2+ weeks while it healed, she has had her struggles with food and feeding. We haven’t faced the nightmare of gut-related issues that some have (and believe me, after watching what Dorrie’s ICN buddy and his parents have had to face, we dodged a real bullet there), but even with good growth and regular pooping, it hasn’t been easy for her.
After finally starting to get breastmilk in mid-August, her calories were slowly bumped up from 20Kcal/oz (regular breastmilk) to 24KCal (breastmilk + HMF), to 27KCal (breastmilk + HMF + NeoSure), to 30KCal (breastmilk + HMF + NeoSure + Olive Oil). She stayed on that concoction until around Thanksgiving, when we first dropped the olive oil, then replaced the HMF with more NeoSure, then finally dropped back down to just 24KCal (breastmilk + NeoSure). Around that same time we also added SimplyThick to help with her reflux. That’s what we came home on.
She’d always had a lot of gassiness, and she’d always occasionally thrown up a feed, but right around the beginning of April, while she was still in the PICU after her tracheostomy, she started throwing up a lot, and the gas attacks started to get worse — she’d be more upset by them, and for a longer period of time. When we finally came home at the end of April, we started keeping track of the pukies in a Google Spreadsheet (also linked in the sidebar) to see if there were any trends. The first trend that emerged was that her worst feed was the one at 9am/9pm. For some reason the combination of meds in that feed were making her throw up way more often than the others. So we tinkered with that and improved it a bit. But the gas was still horrible and was having other consequences: a gas attack will cause her to hold her breath while she tries to push the gas out, leading to desats and needing increased amounts of O2 to hold her sats at a reasonable level; it wakes her up from even the deepest of sleeps and makes it difficult for her to rest properly.
After reading about other preemie parents’ struggles with throwing up and feeding issues, I really didn’t want to keep going until this became a bigger problem than it needed to be. I thought part of the issue was probably the NeoSure — maybe she was having a reaction to the cow milk in it, or maybe there was something else in there that her body just couldn’t tolerate any longer. So we discontinued using the NeoSure to fortify the breastmilk.
Since then, we’ve seen a decrease in the amount of puking, though not a complete elimination of it. The biggest change is that the gas is no longer as awful as it was. She still has the attacks, and they still bother her, but they seem to be less frequent and they don’t last nearly as long. I consider the experiment a success.
Unfortunately, to keep her getting the proper number of calories to grow, we’ve had to increase the amount of breastmilk she’s getting, causing us to whip through the frozen breastmilk even faster than we had been. That means in the next couple of weeks or so, we’ll be out of frozen altogether, and since I had to cut back milk production due to storage issues way back in September, I no longer produce enough in a day for all of her meals.
So we’ll be having to switch her over to formula soon. Dr. Optimist immediately suggested we use NeoCate, much to my relief, since that’s what I was going to ask for us to use. I’m worried about how she’ll tolerate it, but cautiously optimistic that she won’t have a bad reaction. If she does tolerate it well, it will mean an end to pumping for me. And after 10+ months, let me say that getting back that 2-3 hours I spend doing it every day will be a HUGE relief. (And not just for me.)
On other fronts, we’ve also started trying Dorrie out on some solids. She’ll be 7mo. adjusted next week, and though she probably is not really ready for solids (she is nowhere near able to sit up on her own, and she hasn’t really shown any clear interest in eating), I think it’s a good idea to start trying to get her used to having food in her mouth. The goal right now is not for her to consume massive quantities (To get all of her calories from solids, Dorrie would need to eat about 15 jars of baby food every day) but to stimulate her mouth and make her more receptive to food. While she doesn’t seem to have an oral aversion, I have noticed that she is cautious about putting certain things into her mouth. She loves her pacifier, she’ll chew on Blue Hippo or her caterpillar, but when her fingers come up to her mouth? She makes a hideous face and moves them out again.
Posted: little fat fairy, moving forward... or not, our little witch
3
May
2008
Dorrie is 6 months adjusted today!
She was so excited, she threw up in her bath.
She’s about 2′ tall, and weighs 7kg (about 15.5lbs). She decided to sleep in today, and then nap most of the afternoon, so now, as we approach midnight, she is still awake (but very cranky).
According to the history in the pulse oximeter, today we spent 81% of the time between 91 and 100 for our saturations. Our goal is, of course, 100% of the time, preferably 95-100. But this is super progress. We only spent 7% of the time less than 86.
Posted: little fat fairy, our little witch