It's been eight full weeks since we brought Shiloh home. Now that we're through the rough part, I thought it would be good to write a few details of the story.
We were discharged from the hospital on February 20th, with no real idea of when the doctors would release Shiloh to come home with us. It seemed like it was forever before we got to bring her, but in reality, it was only two days.
On Thursday night, the day we were released, we drove back up to the hospital and spent an hour or so with her, feeding her, rocking her, doing our best to care for her. They had decreased the pressure of her oxygen by a little bit, which was encouraging.
On Friday, we went back twice more, in the morning and in the evening, to see our angel and do what we could for her. They had steadily decreased her oxygen while we were gone, and she was down to where we thought she might actually be able to get off of it. But on Friday morning, they confirmed that though they would let us take her, it would not be without supplemental oxygen. They contacted a home medical equipment facility for us, and ordered the tank, breathing tubes, and monitor equipment to allow us to take her. That night, they also had us take an infant CPR course, just in case.
Saturday morning came, and we returned to the hospital, where the equipment technician showed us how to operate everything. He gave us the number for the tank provider, and when we arrived home we called for the full-size tank (we had a small travel tank that would last only about a day when we left the hospital).
Then, we left. After everything, it was so simple. The nurse walked Ilene and Shiloh to the curb, where I had the car waiting, with the car seat base secured. Simple as it was, it was the most relief-filled moment of the entire week, and Ilene and I were both in tears.
Once we were at home, we got everything set up to keep Shiloh upstairs. For the first two weeks, she hardly moved 5 feet from the playpen that we temporarily set up for her bed.
The oxygen monitor went off constantly. Every few minutes, the sensor reading would drop to 88%, indicating that her oxygen was getting too low. Additionally, the sensor kept getting shifted so that it wouldn't get a reading basically every time Shiloh moved her foot, and when that happened, off went the sensor alarm, waking or annoying us, depending on the time of day or night.
Eventually, we found out that the sensor had gone bad. When we replaced the sensor with a new one, it showed that the oxygen level never really dropped, though from time to time the reading did get interrupted. The sensors were good for about 3 days, maximum, and then they would start showing decreased oxygen again. Once we realized that, we started switching them out more often, and Shiloh never had a problem. So every few days we would drop her oxygen flow rate. Never once did the decreased oxygen cause any problems.
On our visits to the doctor, we informed him of Shiloh's progress. He was always cautious, probably overly so, and before long we tired of prolonging the oxygen treatment. We eventually cut it entirely, though the doc wanted us to keep it on. We kept the monitor on her, and the equipment close at hand in case we needed to reconnect it, but the necessity never arose.
After a week of being off the oxygen and on the monitor, we went back to the doctor and reported that she'd been off the oxygen for a week without a single reading below 96%, and that only momentarily. He wanted us to keep the monitor on for 2 more weeks. We complied. For about 2 days. The thing was, the monitor connection wires and cuff annoyed Shiloh, and so long before we were supposed to, we simply disconnected the monitor. I don't mind that the doc was being cautious, but it had gotten more than a bit ridiculous when she had been perfectly fine for so long. Honestly, we probably had the oxygen on her for twice as long as she needed it.
As I indicated, it has now been 8 weeks (and 1 day) since we were able to bring our little one home from the hospital. A few funny things have happened along the way, like when I added Shiloh to our insurance, but it didn't take, and I actually had to add her the day after the deadline (ha ha, not actually funny). The bill for her care also arrived a few days after that, and insurance had declined payment saying she hadn't been included on the insurance at the time of her birth, which, of course, they don't allow you to add a dependent until after the birth, so big surprise there. The result was that the hospital was informing us that the bill fell to us, and was just a bit over $20,000.
A few phone calls fixed that pretty quickly. With our individual maximum of $2000 out of pocket for our insurance, we ended up with a pretty manageable bill. I know Mom calls it "legalized fraud," but this time, we sure were happy to have the coverage!!!!
In the end, many things have gone right. Looking back, there were some tough and scary moments, but the Lord was with us and saw us through. We were comforted when we needed it, and we received so much support from everyone around us. Within our ward, I think we have about 20 grandmas, many of them bringing gifts of clothing, and blankets, and food, and I don't know what all. (Thank You notes are on their way, though we've been slow about it!)
Shiloh, like Afton, is proving to be a slow grower, and she is barely bigger than when she was born. Compared with a friend's baby (Suzanna and Derek), who I think has doubled in size and is only about 10 days older, she seems so little. But we're not worried because she eats like a champion, and she lets us know every few hours that she is hungry and we better get moving to satisfy her.
Anyway, that's a nice overview of the last 8 weeks, at least, with regard to the development of Shiloh. Thank you to so many who made things easier for us, especially those first few days.
