Twenty-eight week old babies actually do very well these days. They have a very high survival rate (something like 95%) and their chances of having life-long disabilities of various severities are something in the 10-16% range. Where once upon a time that wasn’t all that long ago, really, babies born this young could expect to have life-long, or at least childhood-long breathing problems, but our pediatrician tells me that she hasn’t seen a preemie released from the NICU with chronic lung disease for a rather long time. So long, in fact, that she isn’t even all that familiar with the pediatric pulmonologists in our area because she never has a kid who needs them.
Enter our baby.
Our baby did so well in the NICU that within only a couple of weeks of her being born (so somewhere around 30-31 weeks-ish), her neonatologist stopped by her crib and told us that all that was left to do was “grow her”. And this was basically how it proceeded until near the end of her stay.
She tolerated her feeds very well. She breathed pretty normally. She seemed to do well with the natural growing out of her medications. No NEC. No brain bleeds. No retinopathy of prematurity.
Then weeks 34 and 35 rolled around, bringing with them the need to train her how to bottlefeed. She did beautifully at first. She tolerated her milk in mouth very well. She enjoyed recreational breastfeeding (and if you didn’t know that that’s a thing, now you do). She took to the bottle with aplomb and adorableness.
Her initial oral feeds were all partial — they started her off with 5 ml out of her total volume and slowly increased until she was allowed to try to take the whole thing by mouth.
That’s where life got interesting. Suddenly, this tiny baby, who had dealt with all of the challenges thrown her way with spirit, simply could not even. And this, this is where all of her issues suddenly came out at once.
The nurse practitioner suddenly realized that no one had ever ordered an echocardiogram for our baby (a standard procedure). A hole was found in her atrial septum. When it was redone a month later, it hadn’t changed at all. She was dubbed a cardiac baby.
In the meanwhile, final attempts to wean her off of her inhaler and diuretic were deemed to have failed and she was put back on them. She had reoccurring fast breathing spells that no one quite understood because they went away at night.
The occupational therapist noticed that our little one had sensory sensitivities, more so than was normal for a preemie. Light, sound.
We went from flying through the NICU to a grinding halt. Where once they had talked of discharging her at 36 weeks, they now were trying to figure out how best to help her so that she could leave at all.
I stopped my attempts at breastfeeding her. She lacked the strength and stamina to do it well. We focused on trying to teach her how to take a bottle. It was hard for her. Very hard indeed. More and more her feeds ended up gavaged. Suddenly, they wanted to send us home with an NG tube.
We buckled up and set ourselves to learning how to place and manage an NG tube. (As our pediatrician points out, there’s a giant hole in the back there and it’s kind of hard to miss, so placement is the easy part.) It was stressful training, admittedly. The baby really didn’t care for it, and who could blame her. How would you feel about someone swaddling you up tightly and then sticking a tube up your nose and down your throat once a day?
Eventually we nailed it. The nurses were amazing. We were trained by several different ones, so we were able to accumulate a variety of viewpoints and tips.
Suddenly, we were going home. We were sent home with a referral to a pulmonologist and an appointment with a cardiologist. We thought we were looking at something very normal, that a few weeks at home would be all our baby needed to learn how to eat by mouth. That she just needed rest in a home environment and care from a cardiologist.
Little did we know.
Adventures At Home 