I am posting early today as I am waiting for Ajit , Avy and in laws to get here. They are coming today yayyy, I get to cuddle with my baby.
Atiksh is staying stable today on the conventional vent. He is on pretty low settings which is good. His blood gases are good so they are not going to make any more changes till surgery. Goal is to keep him steady and stable the same way till surgery.
Since the moved him to the newer vent, he has fewer tapes on his face and I could see more of his face. I still think he looks a bit like how Avy used to. Let’s see the title says bitter -sweet and here is why-
– I got to do oral care again today. It feels amazing to be doing ‘something’ for your baby when most of the day you can just stand and watch helplessly. He stuck his tongue out from behind the tube going down his mouth and it was very cute.
– He was awake for the first time since his birth that I have seen. This morning I got there at 9am and he was awake!!!!!! I got to see those beautiful eyes open and looking around. The nurse said he will hold my finger and he did for a fleeting 10 seconds, but it was the most beautiful thing ever. I immediately took a video and pictures since I know Ajit would be missing this and I did not want him to fall back to sleep. He was awake for hour and fifteen minutes and I just sat and stared the entire time. It was beyond beautiful and he looked like a baby, but with lot of tubes.
– His nurse today, Carroll, who is awesome by the way, had shampooed his hair. It finally looks jet black and absolutely gorgeous.
– He got his urine catheter removed and yes my baby can now pee :):). Which means we can change diapers, looking forward to that.
– They are cutting down on both Dopamine and Milranone and hopefully it will be fully weaned by surgery date. He had another heart echo today, I do not have the results yet.
-I saw my baby awake and move, but I could not touch him, I could not carry him and it just broke my heart to pieces. I started crying right there and had to step out to stabilize myself, as they say babies can feel how their parents are near them and I want to be happy and strong when he is awake as he can get my strength too. It is beyond painful to just watch him when all the cells in your body wants to just grab him and cuddle him.
– Ajit is missing this. It is beyond painful to think that you are missing the first of your baby but the situation is like that. I am hoping we can make a trip to the hospital after he comes and he can get to see his boy awake. Ajit is am amazing dad, a very hands on dad and it breaks my heart that we cannot be together to see our second little boy take these tiny steps.
– I am missing Avy and everything he is upto. He is going to start soccer next month and I will not be there to see him do the first kick and things like that. Heart is heavy sometimes.
All in all a day of mixed emotions. I often think my posts should be very positive and most of the time I am. People who know me know that. I am writing this in all honesty, as it should help other parents and when they feel that everything around them is hard, I want them to know that it is natural and normal. CDH sucks, but we can endure it and be the strength our children need us to be.
I want to add that, Ajit and I have the best parents ever. All of them are here. My parents stay with me and help keep the house when I need to be in the hospital. Ajit’s parents are with him in Christiansburg helping with Avy. Everyone has put their life on hold to help us through this and I know that we cannot do this without them. Ajit and I have not been the easiest people to be around, with tempers flaring sometimes, but it is the situation and we love our parents beyond anything and Avyukt and Atiksh have the best grandparents in this world.
Hello world…eyes open…