Weight: 7.5kg (16.5lbs)
Length: 60.5cm (23.8″)
Head: 43cm (16.9″)
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.
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.
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.
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.
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.
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.
So we are home again and have been since Tuesday. Cross fingers, but so far things are going as well as can be expected. Our new daytime nurse seems okay, though I don’t think she quite realizes that having her here is not precisely a relief. We have her here because it is safer for Dorrie if there are always at least two people in the house with her. (Occasionally we do not follow this rule and people will pop out to the store leaving just one person with Dorrie, but 98% of the time there are always two people here.) But having another person, a stranger, in here with me all day every day is incredibly stressful.
Most people get to go to the hospital, have their baby, and in a day or two bring them home and then start raising them as they see fit. There are occasional checkups, but for the most part they are unsupervised and experience little interference with what they’re trying to do. We’ve had none of that. 8 months of Dorrie’s life has been spent in the hospital with a veritable army of doctors and nurses telling us how much she could eat, what she could wear, when she could have a bath, when we could hold her and so forth. Being at home gets us away from that, but not entirely, because, you see, we still have this person here.
It is always a relief when she leaves. I can spend time with Dorrie without feeling like I have to keep an eye on the nurse or find things for her to do.
Today we did our first trach change at home; it was quite scary, because for some reason we had a lot more blood during the change than I’ve ever seen before. The new trach also did not go in very easily, and I hate feeling like I’m shoving it in. I’m afraid I’m going to puncture something. (And for us, this is not just a worry out of the blue. The ICN people managed to perforate her esophagus right when she was born trying to put a tube into it.)
Dr. Optimist came down in the morning for a home visit, which was nice. It’s possible to get Dorrie and all of her gear into the car, but it is neither simple nor fun, so having the doctor come to us was a big plus. She brought with her the trach tube we later used for the change — we had come home with a trach we thought belonged to her, until on Wed the hospital called us in a tizzy because no, this one was not Dorrie’s, it belonged to L., another long term ICN resident (a July baby like Dorrie). This was not the first time their trach tubes had gotten mixed up, but it was really worrisome that it happened more than once even after everyone was aware of the fact that they were so easily confused.
The outpatient nurse will come down once she is back from vacation (she was unable to come home with us because of that, but we didn’t really want to wait until May 12th to leave the hospital) and then probably she and Dr. Optimist will visit again later in the month. Then we will have to go back up to CHaD for some followup appointments in June and see everyone and their uncle. They’ve been in communication with Dorrie’s ped, but I’m assuming we’re going to have to go and visit him at some point.