Casey is so happy to be home. With in an hour of having her home she was cooing and talking to her couch. She has been doing so much better since we got back home. We have the oxygen at home to use at night, but we really don't see it doing much. The flow is only 5, where the flow in the hospital was 12. So you barely feel it coming out at all, and to be honest we weren't sure it was really needed to start with. We started out using it every night, but have backed off since. We use it for a few hours if she is having a hard time, but for the most part it is just there in case we need it. We use it to give her Albuteral treatments as well, when needed. I think we have done maybe 3 since bringing her home. In addition she gets a daily dose of Caffeine Citrate every morning. We don't see this doing much either. We do give it to her, but don't see anything from it. We have an appointment with pulmonary on May 2nd. Hopefully they can see that she has improved and possibly won't need to continue caffeine nor the oxygen. We will just have to wait and see.We did not come home with an apnea monitor. I would guess Casey still has some apnea spells. We saw as she was getting better in the hospital that the spells seemed less and less frequent. I would guess they are pretty seldom now that she is feeling so much better. The Caffeine is supposed to help with apnea, and maybe it is, but its really hard for us to tell.
Other that continuing to regain strength Casey has a lot of work to do to get some weight back on. She lost about 1.5 pounds while admitted. They sent her home just barely over 14 pounds and she has been gaining a little every day. She is not quite back to 15 just yet. She has her next GI appointment on April 25th. Hopefully she is at least back to 15 by then.
We have a pretty busy schedule over the next few weeks. She finally is going to make it to the genetics appointment that we were headed to the afternoon she was admitted. She also has a follow up ENT to check on her ear tubes. These are both on Monday. Then Wednesday she will have her first Botox injection (FINALLY!!!). The following week she has her 1 year pediatric appoint, GI, and possibly a neuro follow up. And, most important, she has her birthday party coming up on the 21st.
Both grandmas are coming in for the party. Some of her NICU baby friends will be here. Some of our friends will be coming as well as some of her friends and care providers. It should be a really nice little party. I hope she has a good time. She loves elephants so we are doing a pink elephant birthday cake.
That's pretty much it for right now. We will post pictures from the party and her visits with the grandmas soon. We hope everyone is doing well.
