13
July
2009
It’s hard to believe that it’s been two years since Miss D decided to join us on her own schedule. Like January/February, this is not a time of pleasant memories, and even at the best of moments I feel uneasy as we approach any “important” dates. I’ll be happier when we’re past it.
There’s not all that much of note to report this week, as we worked on getting back to our normal schedule following the long weekend. Dorrie continued to do very well with her prune food, and so we have now begun adding carrots to a different meal. If we can successfully introduce enough foods, we’ll be able to perhaps cut down on the amount of formula with the ultimate goal being to stop the overnight feeds altogether. I’m very hopeful that if we can manage this, it will lead to a big improvement in her sleeping.
We had some success during the week with getting her to take decent naps during the daytime, though this did not continue over the weekend, so I’m not sure what to think there.
We’re still waiting on word of the new chair/stroller arriving; I’m getting very impatient now. The stander is great, of course, but I see how well that fits her and I feel bad when we have to squash her into that tiny Tumbleform chair to sit.
Dorrie also received her birthday present from Grammy and Uncle Jonathan, which is a Little Tikes swing and slide. This is something which I had seen a picture of on another blog, and I thought it would be great for Dorrie. Both of the toys do not really require her to do much, so she can use them now with our help and hopefully play with them on her own some time in the future. So far, though, she is absolutely terrified of it and has added a new expression to her repertoire in its honor.
I don’t like this
HELP ME
And just to prove we don’t torture her all the time.
Posted: little fat fairy, moving forward... or not, our little witch
5
July
2009
This week saw Dorrie progressing more with her stander. The PT put some foam blocks on the tray so that it’s easier for her to keep her arms from falling back, and now she finds it easy to keep her hands where she can use them. Her goals so far seem limited to getting things close enough to gnaw on them, but hopefully they may expand over time.
The gnawing on everything continues — our hopes for a break in teething were dashed at the beginning of the week when it was discovered that tooth #16 was not canine #4 but rather 2-year molar #1. There are bumps elsewhere (including that last canine) so probably some more teeth will make their way out over the next few weeks.
Now that we seem finally to all be well again (aside from daddy’s continued coughing) we’ve changed up Dorrie’s diet slightly. We hope eventually to be able to stop using the formula we’ve been on for the past year — Neocate — and let her eat real food. Ideally through the mouth, but the fact is that this is not going to be happening very soon, so for now we’ll need to blend it up so it can go through her tube. The trick is to figure out what real foods she can tolerate and then craft a nutritious diet from them that won’t drive us mad trying to make it. We’ve started simple, and this week she is getting 2.5oz of baby food prunes in one of her feedings every day. If that doesn’t cause any digestive distress, we’ll try introducing something else in a week or two.
She also gnawed on some carrot in a mesh feeder bag. She didn’t seem to mind it, though probably we’ll hold off on doing that regularly while we’re attempting to experiment with introducing significant quantities of other foods.
Bonus Pictures — Miss Tubbo at this time last year. Seeing her every day, it really seems like she hasn’t changed much at all. A bit leaner, of course, but just so it’s noticeable. Until you look at pictures and you realize holy crap.
Posted: little fat fairy, moving forward... or not, our little witch
31
March
2009
Height: 30.5″
Weight: 10.285kg
Had our last synagis shot for the season, much to Dorrie’s dismay. She also decided to pee everywhere to express her displeasure at being put on the scale.
Down to a PEEP of 7. Don’t anticipate -too- much of a difference with that; the CPAP valve is not exactly digital, so it’s all sort of an estimate anyway.
Also, the new night nurse showed up last night!! I was highly skeptical after her failure to show up for orientation, then her 2h late arrival for the rescheduled orientation. Hopefully she’ll also show up tonight.
Posted: little fat fairy, nurse or no nurse, our little witch
4
March
2009
Height: 29.5″
Weight: 10.15kg
Head: 48.5cm
Dorrie is no longer looking as fat as she used to. Her face and body have thinned out and she has a more healthy, normal pudgy appearence. She still lags on height, but seems to be catching up on that. Her weight has been fairly flat for the past few months, but she has grown a couple of inches. Hopefully by two she’ll be solidly on the chart for her actual age in all categories.
Posted: little fat fairy
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