Rest is a very good thing. This past weekend I got to go back home and spend some fun time with some awesome people. I got back to Charlottesville today feeling much stronger. We went to Avy’s first soccer game- which was him and his best friend, mostly holding hands and standing, had a small party for Avy with grandparents for his 4th birthday and then on Sunday I took him to his best friend’s birthday party where I have a lovely time and he enjoyed his little friends.. A very busy weekend. I got to spend some quality time with Avy and it was a huge morale booster. This morning it was hard to say bye to him, as I will not see him till Friday. I keep telling myself, soon we will all be together.
My dad left today, I dropped him at the airport, again a hard good bye, but things have to move on. I stopped by my workplace and said hi to everyone, felt nice to be there and meet everyone. I have realized how much friendships and social connections make you feel normal.
My mom and I drove directly to the hospital and it was noon when we reached. Atiksh was awake and he had a new mobile for his bed and he seemed to love it. The upper powers, the surgeons had okay-ed breast milk to be fed by tube and they had spent the morning debating if they should start with my frozen colostrum or fresh milk and finally decided to do 3 feeds with colostrum. It was a HUGE day !!!!!!!!!! He is getting my milk, the one I painstakingly froze hoping he will get to enjoy it. My mom and I were just in time for that. My mom was so happy to be by his side when he took the first milk. I am so emotional right now, my boy is slowly eating.
So he gets 10ml of breast milk through the tube every three hours. This is a tiny tiny quantity of food (70mls is about 2 ounces). They started at noon today and he will get breast milk every three hours for 24 hours and then based on how he does they will think about increasing it. If he throws up, they will stop the feed and give him time.
We then got back home, rested for a while and I went back around 4pm. I got to hold him. He was awake and I was hoping to read to him and talk to him, but the minute he landed on my lap he fell right to sleep. The nurses were saying that he just needed to be held my mommy to sleep. I held him for 2 hours while he slept- smiling in his sleep- it was the most beautiful thing ever. Surgeons came on rounds while he was asleep and they are happy with his progress. As I was getting ready to leave, since it was shift change time, he woke up!!! I got to change his diaper, dress him up, take his temperature – for a minute there, he was a normal baby and I was a normal mom. They are now letting me do it all, as he not longer has that many tubes, plus they said I am there so much watching them, that by now I have learned how to hold him and handle him with the tubes. I got him all dressed up, saw him take his 6.30pm feed and left for the night. I am too tired so will not be visiting him tonight, I will be there tomorrow. It has been a long day, with a long drive!!!
In other news, today the whole day he has spent on the nasal cannula. They will do a blood gas tomorrow morning and an x-ray. Based on those two they will decided if he needs CPAP again or if he can be in the cannula. I hope we get good news, mainly because he HATES CPAP. They have also weaned down his sedation and painkiller more and he is handling it well. He still gets tremors but calms down when being held. Ajit told me that the surgeon mentioned that, even when awake, Atiksh is calm and never cries, apparently he commented that he must have some good genes (insert proud glee face):):)
Hoping that he can keep all his milk down and we take baby steps forward!!!