If Dr. Seuss had written a book about that day for us, the first page would have read:
It was bad.
They were sad.
We got there at 9:00 a.m. which we felt was really the best we could do for our first time ever being there. While Jeff registered us I nursed Ellie in the lobby. Immediately after we registered someone asked us when the last time she ate was. I said just a few minutes ago and they said "Ok, then your swallow study will be at 1:00, four hours after her last meal". Swallow study, ok yeah that sounds important.
We were taken to our room on the second floor and had a minute to get settled. The second page of the Dr. Seuss book would then say:
They were scared.
They felt unprepared.
But they began to meet people who cared.
There was not a shortage of friendly, educated, kind, concerned people that began to explain to us what was going on with Ellie. We learned all about the heart and lungs and their relationship since she took her first breathes out of the womb. Even right after birth it was not that bad - only a few hours of breathing at that point.
We learned there was a cafeteria and thought about eating lunch but things were moving so quickly and we were trying to keep up. It was time to go to the swallow study. We sat her in a chair and she easily sucked down a bottle of barium which "glows" in your stomach on x-ray. After about 5 swallows there were some raised voices to stop the test, stop the machines - this girl aspirated. Back upstairs and all of the sudden in comes the nurse with this yellow THING she says she's going to put down Ellie's nose so she can eat directly into her stomach. Do what?
Ellie cried, she screamed - Jeff and I were trying to keep it together. Can you believe this was so far from my mind of possibilities that I didn't even bring my pump from home? I was using it to give her a bottle here and there to make sure she gained good weight. So the hospital provided one but thankfully my sister later ended up driving up and bringing mine.
So then she got oxygen - also another learning curve, but not quite as complicated. Then we were told we'd spend the night in the sleep lab to see what Ellie breathes like at night. I remember that night none of us slept a whole lot, including Ellie who was making this weird back-arching motion every 10 minutes. The "I have something tickling the back of my throat, could it be a tube?" motion.
Every day while there Jeff would go eat and he'd come back and I'd have to catch him up and vice verse. There were sooooo many people that came to talk to us and ask us questions about Ellie.
Other tests were done, they were all very thorough. But she did stabilize and by Friday afternoon some doctors were saying maybe we could go home by Sunday. Another doctor said he'd like her to stay longer but others said Sunday should be sufficient. We had a very slow day Saturday to process which was a real blessing. Then Sunday was very hectic - so much teaching was done. CPR classes, visits from medical equipment companies, how to give medicine, what to look for, follow up appointments...oh and she's still a newborn baby too, so watch for all that other typical stuff too. Overload! But we did get to go home.
We managed the best we could. One day when "rounds" were made and 12 people were in our room before 8:00 a.m. I just gave up and decided I didn't care I hadn't brushed my hair yet. I just sat up from the couch with my blanket around me and held onto the tiny shred of dignity I could possibly have due to the fact I only brought this shirt to sleep in.
We rented a movie from the library but had a dud remote so the volume didn't really work. On a subsequent hospital stay we asked to switch rooms based on this inconvenience. We weren't playing around with the value of distracted parents.
The free food for breastfeeding moms became a celebration each meal time - eating is something we do enjoy. Jeff was really excited about a carving station they had. I became enamored with wheat pancakes.
"Say what? That all happened to ME?!"
