In the beginning…

I read the notebook I kept on the boys, for the first time since writing the words on the pages.

It begins with each of their first and middle names, spelled in big letters. I wrote those before they took me back to the OR, so that everything would be spelled properly. Just in case.

Then: A—3 lb 12 oz, 17.25 inches, APGARS 6,7. Looked blue but then cried. Peed on nurse. “Worked” on him.
D—6 lb 12 oz, 19.5 inches, APGARS 7,8. Cried. Got footprints. I got to touch him.
Both to NICU.

Well, I suppose even then, it was there: Mr. A, strong and stubborn, but needing help. Mr. D, not quite normal (I got to touch him, not hold him), but enough that no one was worried. They felt calm enough to take his footprints.

The footprint issue bothered me for days. When I had to leave them upon discharge, I was hysterical for many reasons. One of them was that we never got A’s footprints. It felt like the ultrasound appointment when they told me he probably would not live, and then handed me pictures of only Baby B, his brother. (2nd opinion, and 3rd opinion ultrasounds all said the doctor was wrong. And indeed there was a computer error. But this was the first time anyone raised the issue of something being not quite right with Baby A…and then it vanished until his birth. Looked blue, but then cried.)

While I was recovering from my C-section, a neonatologist came in to talk to us. This was the first time I heard (although my husband already knew, but had *forgotten* to tell me), that A had a cleft palate. A “U-shaped cleft in back of palate” is what I have written. In subsequent weeks, there was much debate about whether it was a U-shaped or V-shaped palate (I still do not know, it looks pretty dang V-ish to me though), whether he had Pierre-Robin Sequence or not (his notes say “PRS-like”, so who knows), and whether the hard palate was at all involved (it’s not). The doctor also told me, which I knew, that he’d had apnea—he was working harder to breathe than he could sustain. Thus they gave him surfactant and intubated him. A chest X-ray revealed a pneumothorax, but it was gone on subsequent X-rays, so they think it might have just been a shadow. He was missing his gag reflex, which they hoped was from the sedation they’d given him for intubation. (It was not.) He got an ART line, an umbilical IV, and TPN. And I was told he had a square head and low ears.

Mr. D’s report was shorter. He had low blood glucose, so they gave him a scalp IV (could not get one in his umbilicus, or arms or feet) and some TPN. The end.

The notes go on. The first time D breastfed, the first time A gagged, the first time I held A (2/4/12 at 11 am, a few hours before I was discharged), amounts of milk pumped and given to each boy, moving rooms, under and not under lights and heaters, tubes and lines pulled or inserted…

Then they stop. I remember thinking it wasn’t good to be obsessing so much over the little details. It also hurt to know that D would be home soon, but then A would be all alone. And sometime, possibly the very day I stopped taking notes (2/8), we got A’s diagnosis. Welcomed to Holland (insert eye-roll here) by very poor bedside manner: the doctor told us of his deletion, but when I asked what it meant, proceeded to go on and on about how, even with typical kids, you just never know. Why, his own son had a learning disability, and who would have ever thought! He finally handed us a computer print-out, out of order, from Unique. It was folded in half and passed to us as if on the sly. He told us not to obsess about it, and then walked off.

Well. There you have it, I suppose.

Except not at all. A’s story, and D’s story, is so much more than that little notebook.


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