Another busy day

My husband and I joke that being in the hospital can be a bit like being on vacation. We have no other responsibilities and we don't even have to change a diaper if we don't want to. And the biggest luxury of all - we have time to read! It hasn't been a vacation yesterday or today though. Lilly has kept us busy. Really though, today was a lot better than yesterday. Lilly had periods of being quiet and resting. But she still had a lot of periods of just complaining.

We still haven't heard the results of Lilly's chest x-ray today.

The first thing I did when I came in this morning was to bolus feed Lilly some molasses and water. I also made the executive decision to feed Lilly like we do at home. Continuous with breastmilk overnight and then food and water during the day. Lilly's had apples, water, and some milk today. And several doses of molasses. Still waiting for a BM but she seems much more comfortable overall. With her home regiment she goes most every day so I figure let's get her back to that. (It must sound funny to talk so much about a child's needing to have a BM - I certainly have never done it so much! - but in the Trisomy 18 world it's a big thing. Or actually anyone with low muscle tone has this problem.) If there's no results tonight I'll buy prune juice on my way in tomorrow.

Lilly had several rounds of chest percussions with the respiratory therapists. (We do it a lot too.) She also had a little occupational therapy. When I came in this morning, Lilly was looking like a big girl sitting in a special chair that the therapist brought her.

We found that Lilly was happiest today when sitting straight up. In fact, she slept very well sitting up in my lap. She was quite annoyed when disturbed for meds and checks, but was able to go back to sleep quickly.

We think Lilly is just tired of everything here and is ready to go home. Hopefully we will before long. Lilly was weaned further off oxygen today and is on the tiniest amount.

Last night my three year old son asked me if Lilly was going to die when she got out of the hospital. I said "She's getting better! I pray God will let her live a lot longer before she dies." He said "But Pop died after he left the hospital." (My father-in-law sadly passed away this summer.) I told him that most people get better in the hospital before they leave. He was happy with that. I told him that we would keep praying that Lilly would live a lot longer.

[Jesus speaking] "Therefore I tell you, whatever you ask for in prayer, believe that you have received it, and it will be yours." - Mark 11:24