Wow it feels so great to be home! We are hoping that this will be Annabelle’s last hospitalization before transplant but who knows! We were able to get discharged from the hospital on Friday around 3:30pm, giving us plenty of time to get settled in for the night. Usually Annabelle has no energy after a hospitalization but she was actually able to play for a little bit that evening before retiring to bed a few minutes earlier than usual. We all slept really well Friday night in our own beds! The hardest part of returning home is getting our hospital bags back in order: washing and repacking all the hospital toys, packing new unopened cans of her special formulas (the hospital doesn’t keep those in stock so I always have to remember to bring some with us), washing and repacking all of our hospital clothes, and washing and sterilizing all the new syringes and g-tube extension sets I collect during our stay (I have 20ml baxter brand syringes now which is VERY exciting). We’ve got our packing of hospital bags down to a science now so I had everything repacked and ready to go by Saturday morning.
Annabelle is back to her usual self for the most part except for the fact that she is still not eating well at all. I don’t know if her tummy still feels bad or if this is just another PA thing. I’ve heard from other PA parents that their child just stopped eating after a certain amount of time. Annabelle’s eating has just gotten progressively worse so I have to admit that feeding times have become a major source of stress for me. Mike seems to handle it okay but I dread feeding times. I know it’s important for her to keep up her oral skills so we try to bottle feed her as much as possible during the day. However, she may only take 1oz by mouth of a 4oz bottle. She has the oral skills to take a bottle by mouth but she just never has the appetite. I know this is a season and most transplant families have said their child’s appetite increased so much after transplant. However, right now in the moment feeding seems hopeless and I’m very discouraged. Plus, with adding solids I feel like I’m trying to feed her round the clock without success. Nothing about the way she eats is “normal,” and I just wish I could let her eat when she was hungry like any other baby. Please pray for me in the day-to-day monotony that is feeding our daughter.
In transplant news, we are still just waiting for the call. Thanks to some wonderful PA parents I was able to find some UNOS data on the national waiting list registrations. According to the website there is 1 status 1A child and 7 status 1B children listed for liver transplant in Region 2 (which is the region Pittsburgh is located). Annabelle is one of those 7 but I have no idea which one. These numbers are highest in region 2 more than any other region in the country so I’m not sure whether to expect to wait another week or another month (plus there are lots of factors at play in choosing the right liver for a candidate). So we will try to continue life as usual as much as possible during this time.
We appreciate everyone’s support during this crazy season of life. We really couldn’t do this without everyone’s love and support and knowing that there is a sovereign God who is in control of all things, including the tiniest details of Annabelle’s life. We will continue to trust in His plan for her life no matter what may come.
Charity