Today was a very special day for me because I was able to hold Miles for the first time since he was intubated. It’s been 17 days since he was first intubated and I was told we would be able to hold him, but they didn’t know when it was a good time. So today was very amazing and beautiful because the moment I held him, it was magical. His heart rate was nice and low so he was very comfortable. Even though he was sleeping most of the time, it was nice to have him close to me. He was awake for like 10 minutes and it was nice to see him look around and know he was out of his crib. I was sitting in a rocking chair and it felt really nice to soothe him by rocking back and forth.

It was a very difficult transition from the bed to my arms, so I thank the nurses who helped us. They were very creative on how to make it work with all the medication lines and the tube being in the way. I am truly grateful that the doctors agreed he was okay for me to hold him. Miles seemed to really like it and slept very good. I was able to hold him for about 2 hours which was very nice. Since the transition to hold him was good, we plan to try to hold him everyday day now as along as the doctors are okay with it.

Miles is doing well, he is stable and on minimal support needed which is good. Him being stable means that he is tolerating the medication and feeds. He is starting to gain weight now which is very good so it can help him build more strength for when he does go into surgery. All signs look good from the doctors and very hopeful he will keep stable until his new heart comes. From what we hear from different families who did go thru a transplant around his age, they waited about 2-3 months, which doesn’t seem long but in our eyes, it seems like years. We have only been on the transplant list for almost a month now, so we pray the heart will get here soon.

We thank everyone again for all your support and prayers!