Well… my intention to write more often did not survive the switch to Daylight Savings Time. *eye roll* It was a really crazy spring and summer, though. Our little onion baby finally made clear that she was just not going to grow until we repaired the hole in her heart. So that’s what we did. It was done in August.
Back when she was in the NICU, I spent a lot of time on the internet reading about preemies and people’s experiences. Weirdly enough, though, nearly all of the blogs I found were from 2011. And about micropreemies. This may or may not surprise you, but neonatology has come a long way even since 2011.
As a result, I’ve been reflecting a lot on what my, and our, experiences were going through everything last year and what it was like to bring home a preemie with an NG tube and diagnoses of an ASD and CLD. I intend to write a little series about it so that people wanting to know now what it’s like can see.
But first, where do we stand now? The onion baby had, as mentioned, her ASD repair in August. Recovery was a bit difficult for her, mainly because she wasn’t into the whole sleeping thing, but we left the hospital a week after entering with a significantly happier baby. She was even happier after being home for a few days.
She went through a rough patch a week after that when the cardiologist decided to decrease her diuretic. Her breathing became easily labored and for several days we were quite concerned, but after the weekend her body adjusted and she was breathing much more easily but still without any visible swelling.
We’re now waiting for her pulmonology appointment next month to see how her lungs are doing. Do they still need help staying dry (as it were)? Etc. In the meanwhile, she is gaining weight well, keeping her food down better than ever, and is basically the happiest baby I have ever known.
A year ago, we had recently been told she has an ASD, but we were hoping it would close on its own still. A year ago, we were wondering why she wasn’t eating well. We were frustrated that she wasn’t home yet. Exhausted from NICU life.
A year ago, we were deep in the NICU slog, the one where babies seem like they’ll never figure out how to eat properly.
A year ago, we had no idea that bringing her home would be far harder than we had ever imagined.
A year ago, we had no idea that she would bring us more delight and joy than we could ever have imagined.
A year ago, we had no idea what was in store for us.
Adventures At Home 