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
26
July
2008
Things Dorrie likes to have in her mouth:
- Teal Soothies pacifier
- Blue Hippo
- Telephone rattle
- Glitter Baton rattle
- Breastmilk
- Ribbit frog
Things Dorrie does not like to have in her mouth:
- Pink Soothies pacifier
- Sweet Potato
- Pears
- Popsicle
- Ice cream
- Spaghettios sauce
- Chocolate frosting
- fingers
- Spoon
You may notice a trend in these lists.
In other news, Miss Dorrie has not been feeling well for the past few days. Looking back, it probably started on Wednesday when she fell asleep early for her nap (1:30) and slept away the entire afternoon, waking only for her bath at 5:30. She had a similar long nap on Thursday and then it was pretty clear by Thursday night that she was feeling blah. She had a slight fever on Friday morning, and though that was gone by noon, she was pretty tired and irritable for the rest of the day. She hasn’t required -more- suctioning than usual, but her secretions are definitely mucousy and not the usual spit. She had another long nap in the afternoon and really only woke up for a very short time before going down for the night. So far she seems to be doing ok with increased attention given to keeping her cool and some extra oxygen, but it’s hard to tell if things will get worse or better over the next couple of days.
Posted: moving forward... or not, our little witch, trying to stay healthy
17
July
2008
Miss Dorrie is chronologically one today! (Officially at 6:20 PM Eastern)
She’s come a long way in a year, though we still have quite a ways to go before she catches up with both her chronological and gestational peers.
Here’s a bit of a year in review.
On 7/17/07, Dorrie was born weighing 1lb 5oz:
At 1 month, she was on the conventional vent and getting kangarooed by daddy.
At 2 months, she lost her fight with the opthamologist and had to have surgery the next day.
At 3 months, she was reintubated after 2.5 weeks on CPAP due to high CO2.
At 4 months, she was on high-flow and trying to hide from the camera.
At 5 months (and daddy’s birthday), she was forced to model dresses.
At 6 months, she was hanging out at home with dad.
At 7 months, she was on her way to get a Synagis shot.
At 8 months, she was waking up after a month of sedation with a new trach.
At 9 months, she was stylin’ on the hospital floor with her toys.
At 10 months, she was sitting in her bouncy chair at home.
At 11 months, she was pretty in yellow.
At one, she was ready to bop you in the nose.
And, a couple of bonus pictures. First, Dorrie and daddy in the hospital (April).
And the Return of Blue Hippo! (8 months adjusted).
Posted: moving forward... or not, 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
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
20
June
2008
Now there’s a title Jane Austen missed.
As Bob noted in his comment, we’ve been happily Pukie-lite for most of this week, and I’m hopeful that Dorrie has adjusted to the NeoCate and will now return to her normal throwing up schedule of about 25% of the time.
Bob was also able to repair the dryer last Saturday while I was at work. And there was much rejoicing.
In further strange developments, at the ripe old age of 11 months, Miss Dorrie has discovered the joys of being burped. She never had much of an opinion about it before, but for the past few days she’s demanded our attention up to a dozen times each day, needing her back patted until she decides what kind of belch she’ll grace us with now. She has quite a repertoire now, ranging from the scary, painful sounding gurgly burp to the quiet sighing burp that sounds like a rush of air. But this we can deal with, and we will take it over pukies any day of the week.
Posted: 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
8
June
2008
A pleasant title, no? But that is what we’ve been dealing with this weekend.
The heat wave that was rolling over the country finally reached us on Saturday and it’s been a sauna since. And it’s not even 90 here yet (according to the car). The AC is already having trouble keeping up with the heat generated by all of Dorrie’s equipment, and I shudder to think what late July and August are going to be like. For her part, Dorrie has been spending her day in the buff, and yesterday I bought a cooling pad which we can place in her bed to keep her back from getting overheated. No such luck for mom and dad, though.
On Friday, we switched over to NeoCate for Dorrie’s food. NeoCate is an amino acid based formula, meaning that it’s supposed to be even easier to digest than breastmilk and is hypoallergenic so it shouldn’t cause any kind of inflammatory reaction in the gut. Except that she’s been puking at nearly every feed, and we don’t know if it’s just because of the heat or because she doesn’t tolerate the NeoCate or because she needs a little longer to get used to it. We are going to try adding a bit more SimplyThick to it (the formula is much thinner than breastmilk) to see if that helps, but if she won’t keep it down, I’m just not sure what we’re going to do.
And to top it off the area around her G-Tube has been making belly boogers again. This is discharge and goo that comes out of the stoma and then dries around below the plastic tube and irritates her skin. It’s quite unpleasant and we’re not sure if that might not be contributing to the puking also. We’ve pulled out the bacitracin again to try and see if a bit of antibiotic might help matters.
In other news, the nurse did not bother to show up or call on Friday, nor did she actually contact the nursing agency as far as we know. So we aren’t sure what’s up with that. Especially interesting is that Dr. Optimist came on Friday again and naturally asked where the nurse was, so I told her. I’m not sure anything will come of that (more likely she will get in trouble as the agency knows she didn’t show — Bob called to find out if she had called in sick) but I am finding having the nurse here during the day gets more and more on my nerves as time goes on.
Posted: medical morons, moving forward... or not, our little witch