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 by mom, under 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 by mom, under 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 by dad, under 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 by dad, under 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 by mom, under little fat fairy, our little witch
20
June
2008
If you’re not planning on buying Dorrie anything for her birthday, and by no means is anyone obligated to do so, you can safely ignore this message.
If you do want to get her a gift, Dorrie will not turn it down. She’s greedy that way. But for some categories of gift she has some slightly specific requirements, so I thought it might be a good idea to list them.
Clothing: Dorrie is currently wearing the size of 6-9M, and she is starting to fill those out pretty well. Please do not get her anything smaller than 9-12M, and if you’re looking at something for the winter, adjust upward appropriately. Thus far she has stuck pretty well to her adjusted age in sizes, so you can use her due date of 11/3 to figure out how old she will be at a given time.
In addition, please avoid the combination of zippers and feet when making purchases of clothing. Dorrie has a lot of tubes and wires and they cannot come out a zippered and footed outfit. Her legs are a bit shorter than the rest of her, but her bottom is big, so buying pants in a size smaller doesn’t work out very well. For that reason dresses and suits with no or short legs will fit her best.
Dorrie is a very hot baby. She gets overheated very easily if she’s put into those lovely plush sleepers that are so tempting and cute.
Toys: If there’s interest, I can make an Amazon wish list, but otherwise I think babies are easy to shop for in terms of toys.
Books: We love books. If you think we might already have a book, you can ask me (or see above re: wish list)
Posted by mom, under we interrupt this blog
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 by mom, under 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 by mom, under little fat fairy, moving forward... or not, our little witch
9
June
2008
While we were still up at the PICU, at the beginning of April, our furnace died. The guy came and fixed it, to the tune of $ridiculous-amt-for-30m-work (… reminding me I’d better check if I actually saw that bill and paid it) but told us probably we would need a new furnace and suggested it would cost us on the order of $4500. The fix lasted about a week before it went kablooey again, but we just do not have $4500 lying around. It being the beginning of summer, we elected not to replace it immediately.
Toward the end of May, some debris at the bottom of our oven was causing some concerning sparks so I tried to clean it up. It is self cleaning, but there was enough junk that it seemed like it would need some assistance. But as it turns out, the heating element at the bottom of the oven had somehow disintegrated and pretty much fell apart as soon as I touched it. Lovely. So we used the microwave and the grill for several weeks, until one of us could finally get out and price new stoves. We finally got a replacement last week to the tune of $420 which we also did not really have.
And now, the dryer may be acting up. Or rather, is definitely acting up. Why, I do not know. Unlike the furnace and the oven, the dryer we actually purchased new when we moved in. It’s only 5 years old, so it shouldn’t really be on the verge of collapse. Probably we’ll have to replace it too (with what money?).
My biggest fear is that the AC will die, and to get that repaired/replaced will probably cost not quite as much as the new furnace, but close. Being up at Dartmouth for 8 months out of the past 11 has been a real financial strain on us, and even though some family members have been more than generous, it’s still very stressful to have to worry about replacing all of these big items one after another.
When added to all the puking this weekend, which is enough on its own to have us tearing our hair out, it’s just not shaping up to be the best of weeks.
Posted by mom, under we interrupt this blog
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 by mom, under medical morons, moving forward... or not, our little witch