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
30
May
2008
Weight: 7.5kg (16.5lbs)
Length: 60.5cm (23.8″)
Head: 43cm (16.9″)
Posted by mom, under little fat fairy, our little witch
29
May
2008
As I’m sure everyone is well aware, it’s strongly recommended that children under 2 years of age watch no television. And in spite of how difficult it was going to be, I really did intend to try and at least keep the television out of the picture until at least a year.
But with Dorrie literally living in the living room about 5 feet from the television, it’s just proved impossible to keep her from seeing it at all. If she happens to notice it’s on when she’s awake, she will often try and rotate herself to see it. So we’re working on viewing in moderation instead, and have started recording episodes of Sesame Street to have them available when she decides she wants to watch.
But Dorrie, while she currently tolerates Sesame Street, is not really a big fan. She was cranky this afternoon and condescended to watch part of an episode, sucking furiously on the pacifier she insisted I hold in her mouth at just the right angle.
But after that was over, we began watching this
and suddenly she was all smiles.
Posted by mom, under our little witch
26
May
2008
Dorrie blends in to her surroundings.
Ready for Fenway.
Posted by mom, under 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 by mom, under little fat fairy, moving forward... or not, our little witch
26
May
2008
I’m happy to report that after a somewhat discombobulated week, it looks like everything is back to normal, such as normal is. Dorrie seems to be mostly over her cold — her secretions went back to white a few days after we started the antibiotics, she’s no longer hot all the time, and her oxygen requiement is almost back to normal. She’s also a lot happier — we’re back to being able to play with her and get her to smile again. Her sleeping schedule also swung back to normal, which is icing on the cake.
Posted by dad, under our little witch
19
May
2008
Things have not exactly been smooth this past week-plus-weekend, but they have not been disastrous either. Mom came down with a cold Saturday of the week before last, possibly picked up from her mother, who had been sick for several weeks earlier. Then last night, I pulled a back muscle while taking care of Dorrie, making it hard to stand up and sit down, let alone doing anything that involves being on the floor with Dorrie. And to top it off, it is looking like Dorrie has caught Mom’s cold in spite of our best efforts, as she is needing extra oxygen, she’s cranky, and the secretions we’re getting from her trach are looking more yellow than they usually do. Naturally, the latter issue is our greatest concern.
I called the pediatrician’s office, and the nurse I spoke to recommended going to the emergency room. Anyone who’s read this blog can guess how we feel about that idea. So, we called Dr. Optimist, who has more faith in our caring skills, and she felt that with the change in her secretions, it was time to start treating her with some antibiotics, and that we should have prednisone on hand in case she starts to run a fever. As long as she is not having trouble staying saturated, we can choose to either visit the pediatrician tomorrow, or if she seems stable, we can try to hold out until Dr. Optimist comes down to see her this Thursday. Granted, our luck so far with trying to hold out and hope Dorrie’s condition stays stable hasn’t been good, but we’ll see — I’m not going to jinx things by saying anything predictive.
Posted by dad, under trying to stay healthy
5
May
2008
Dorrie has quite a few toys and even more stuffed animals, but while she has consented to look at them and even touch a couple, she never really showed much enthusiasm for them until she met Blue Hippo. (Not to be confused with Purple Hippo, of whom she has no opinion.) Blue Hippo was a gift from Betsey at the library.
Hello hippo!
Gimme kisses!
Oh yeah, that’s it.
Posted by mom, under our little witch