Following the travails of Part Three, on October 3rd, the same guys who flew me to Hospital D back on July 27th came and flew the kids back Hospital A. Nigel was there waiting for them, and my mom and I cleaned up our room at Ronald McDonald House (with the help of the wonderful people there) and left early the next morning. We arrived at the hospital with two ice chests full of frozen breast milk, which drove everyone crazy, since they only had the small fridges. I ended up taking one chest home with me. We also had a carload of supplies the nurses smuggled to our car – bottles, diapers, wipes, alcohol wipes, formula, all kinds of things that came in very handy and would have cost an arm and a leg. We were there so long, that they all felt like we are family. I still keep in touch with many of them.
Shortly thereafter, The Princess came home. We had actually had trouble keeping her IN Hospital D. She was doing so well that I had to work hard to convince them of the wisdom of sending them to Hospital A together. Hospital A made us to a "sleeping-in" with her, which is just putting Nigel and I and The Princess in a room to be sure we aren't going to kill her or something. Her sleeping-in was uneventful.
A few days before Halloween, The Starving Child came home, over my objections. He didn’t seem right to me. His sleeping-in was horrible, none of us slept and he cried and had reflux all night long. But they insisted he was ready to go. Two days later, the home-health nurse checked his O2 sat and it was 88. So here we went, back to the hospital. Turned out he had bacterial pneumonia. I wrote a very scathing letter to the hospital administrator naming names. He stayed on the pediatric ward there for two days and nights until I realized that he would get better care at home with three adults and two babies, instead of with 2 nurses and 20 kids. They never brought his meds on time, and I always ended up giving him the stuff I brought from home. If I hadn’t been there the entire time, I don’t know if they would have even fed him. Imagine the fun if Nigel hadn’t had time off and if my mom weren’t there to help! So I signed the DAMA (discharged against medical advice form) and took him home, where he recovered in short order and I got lots more sleep in a real bed. He also had a hemangioma (strawberry birthmark that grows) on the back of his head and we had to keep it covered with Duoderm to keep it from rubbing and getting infected. It finally shrank down to almost nothing by the time he was 2. My oldest nephew asked me once if The Starving Child had an extra brain. Naturally, I said YES. We scared the hell out of a babysitter once, when we forgot to show it to her and she paged Nigel during the movie to tell us about this head injury and how she didn’t know how it happened.
The Lottery Winner had reflux so severely that he ended up getting a g-tube and fundoplication surgery. The drs thought he was having seizures at one point, and he got a full whachamacallit (EEG?) on his head, but no signs of seizures. We have since found out that he is one of 5% of kids who are able to stop breathing until they pass out. He did this when he was in severe pain and when he was in severe fury. He would just stop breathing, turn blue, then gray, then stiffen up and pass out. He’d wake up just a few seconds later and be tired and scared as though he had had a seizure, but it wasn’t one. No fits since he turned 4, though, fortunately. He also had casts on both legs for bilateral clubfeet (inherited from my grandfather). We fed him through the tube for a year, and he’s had two surgeries to correct his feet. He didn’t get to come home until two days before Thanksgiving. Both boys came home on oxygen and all three had apnea monitors, which we took off after the 50th false alarm at 3am, except for The Lottery Winner, who really did turn blue a time or two, just to scare the shit out of grandma. We even had a pulse oxymeter at home to check their sats regularly! I sometimes think I could be a NICU nurse.
After all that fun, having three babies at home was a piece of cake. My mom stayed for a month, then Nigel’s mom stayed for 6 weeks. By then, they were 6 months old, were sleeping through the night, (except we actually had to wake them up to eat once during the night – drs orders) and were on a strict schedule designed by Nigel and I based on the schedule at the NICU. We had to write everything down – BM’s, wets, how many cc’s they drank, what we put in it, which meds and when, etc. I look back in the notebook and can’t believe we lived through it! Some of it is funny: “The Starving Child didn’t eat for shit.” Or “The Lottery Winner took 30 cc’s by tube, then pushed it all back up.” Or “The Princess ate 30 cc’s, then barfed about 15.”
I look at them now, and can hardly believe how close they were to not coming home at all, especially the boys. People say to me, “Aren’t they just little miracles?” And I say, “Yes, miracles of modern medicine from conception to 1st grade!” It often annoys me when people who hear our story talk about how I should be thankful to a god, most likely the god they worship. I prefer to praise and thank the doctors and nurses, without whom neither I nor the kids would be here today.
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