I think I was riding high on the sense of safety that my admission brought. The fact that I could feel pretty confident that I would not be having a stillborn baby was such a relief that I sort of forgot about everything else. Or maybe as I get closer to birth, I’m beginning to realize what may happen afterwards- something I haven’t quite allowed myself to do, for mental survival’s sake. My crash came last night- I think I cried for the first time since I’ve been here. The reality is, my baby really might die.
I had been doing all this prep work for the idea of caring for a baby on a vent. My sister showed me a facebook page of a baby with Down Syndrome and many, many health problems- including kidney disease and being on a vent. As scary as some of the posts were (mucous plugs clogging the vent causing heart rate to plummet and EMTs to come), they also showed me that it’s totally livable. The baby sits up and bangs on the piano like any baby would. Lots of smiles. The milestones may be different, but it helped me get used to the idea of taking home a baby on a ventilator. Yesterday I did a little internet research- because I was worried about my baby’s birth weight and whether that would affect dialysis. I have mostly stayed away from the medical research for the past several months, but I thought answering this one question would help me. And it did- I’m not too worried about birth weight and dialysis (hopefully I’m right, but I’ll asks the experts- my OB team- too just to confirm). But I did come across some info on how to decide whether to use dialysis on newborns. Things I found out: Isolated kidney failure in a newborn has a 30% mortality rate. Babies that have other significant comorbidities often are not candidates for dialysis because the outcome is just so poor. One such comorbidity is severe pulmonary hypoplasia. This info is not so new to me, but I’m processing it in a new way, now that birth and actually a having a newborn is getting closer. We don’t know and won’t know until birth if my baby’s pulmonary hypoplasia will be severe (I am pretty confident it will be present- but to what extent, I can’t predict). And then if it’s mild or moderate- will that affect whether dialysis is a viable option? And what of other health issues often associated with Down Syndrome, that can be diagnosed after birth? Does having a bowel obstruction and needing surgery affect whether my baby can receive dialysis? And this is all under the presumption that the baby needs dialysis. I suppose I can hope that there might be some kidney function (after all, there are actual kidneys and wee bit of urine in the bladder on the last scan) and so maybe they can treat my baby with medicines to help.
I hear this a lot from people who have had sick babies or babies with poor prognoses- babies are resilient. Everything they see on ultrasound is not always the case after birth.
I bought my first baby outfit. We have a few outfits that were gifts at home, tucked away in a box out of sight- but those are more day to day outfits. I needed, as Chris said, a “coming home” outfit. That sounds better than a burial outfit. I had done some browsing online and eventually came up with two I liked from JC Penny- they were newborn christening outfits (piece of advice: don’t google newborn burial outfits. It’s too sad). One for a girl and one for a boy. I didn’t order them because I figured we would have time- I could do it right after the baby was born, when we knew the gender, because I figured we’d have a few days at a minimum. But last night in my doldrums I worried we might not- we might have a few hours. In which case I wanted to make sure I had something for the baby to wear on hand. So Chris and I browsed the web together and came across a simple unisex white layette that had a little carrot embroidered on it. It was perfect. It might seem very informal for a burial, but it just seems right for my wee baby. I do worry that my baby will be swimming in it- I’m anticipating a 5lb baby, which is a little small for newborn clothes, but it didn’t come in preemie, so I think we’ll jut make do.
We also bought a blanket. Two actually, because I can’t decide which one I prefer- I think I’ll have to see in person. Reading the blog of someone whose baby has kidney agenesis (it’s the closest thing I can relate to), gave me the idea. If the baby looks like s/he is not going to live, I want to be able to hold him/her in a special blanket as s/he passes. So we ordered our baby’s first outfit and receiving blanket.
These are not the kind of things I should be doing. These are not the kind of things any expectant parent should be doing. I should be picking out a fun little boy’s hat or girl’s headband for baby’s first pictures. I should be choosing sheets for the crib. I should be ordering diapers and pacifiers. And maybe I will be ordering those things- just not yet. We do what our children need and right now an outfit and blanket are what my baby needs. What baby needs, baby gets.