Glad to be Home

Jill and I came home on Saturday afternoon. I’m so glad to be home. Based on Jill’s increased stranger anxiety each day she was in the hospital, I would say she is very glad to be back home too. It got to the point that anytime someone came close to her hospital crib or spoke to her directly, she would start crying. Once she saw the cleaning lady put on her latex gloves, Jill broke into tears. The cleaning lady kept saying, “Don’t worry, I won’t touch you. I’m just taking out the trash.”



Things I learned in the hospital:


* I pace when I get nervous especially when a surgery lasts 3+ hours longer than expected.
* Every two days it is nice to take a shower and change clothes.
* Nothing is more terrifying than watching your child turn blue.
* Hospitals are very lonely.
* I know my child better than the nurse who was briefed on her for 10 minutes.
* Constant beeps, alarms, and other hospital noise drive me crazy.
* For some reason labs, weight checks, x-rays, and other important items are always done at some ridiculous time like 5 a.m.
* Eating in the cafeteria gets old.
* Not seeing your child smile or laugh for nearly a week is one of the hardest things.
* With the constant interruptions, it is impossible to sleep in a hospital.
* When you start running into people who remember you from your last hospital stay, you know you have been in the hospital too much.


Now that Jill is home, Bryan and I are learning how to take care of her again. At this point, her care is a bit complicated. It is almost like having a newborn in the house. During the day she has to be fed every three hours and at night she is on a drip line for 8 hours. Since she has been home she has only taken two bottles (both from Bryan). The rest of the formula feedings are done through her feeding G-tube. We are trying to stretch her stomach so every feed is increased slightly. If she starts retching (appears to vomit/stomach not handling the feed) then we have to decrease the next feed slightly. On top of learning how to use the feeding pump, we have to clean her skin around the G-tube twice a day, and remember all of her daily medicines. Overall, she is doing really well. She smiles and laughs often. She has eaten some baby food in her high chair (note: she can’t have any chunky food for 3 months). She seems a little more worn out than usual. Late this afternoon she rested her head on my lap for about 20 minutes.


I think it is going to be hard to leave the house much. Originally, we were hoping the G-tube would be very temporary, but now it looks like she will have it at least for several months. Ideally, she will start taking most of her food orally, but with her extreme oral aversion to her bottle this is unlikely. I’m hoping that once she completely heals from her surgery, I can introduce sippy cups more to her.


We haven’t received any bills from her 11 day hospital stay and almost 7 hour surgery yet. However, when Bryan went to the pharmacy to pick up her new medications, one of them was going to cost $80. Bryan called the hospital to find out if there was a cheaper generic version of the same medicine. After talking with the surgeon, he said we could forego this prescription and just finish off our old medicine. So thankfully, we didn’t have that expense. At this point, we are in the process of applying for a supplemental insurance for Jill through Medicaid. I’m really hoping that we get this insurance, but I’ve heard almost everyone gets denied the first time they apply. We are also hoping that more engineering work will come in for Bryan’s company so his job will be more stable.