A few weeks ago when I was working with Avy on his activity books, there was a question on it: “Which is faster the hare or the tortoise?”. Avy answered ” The tortoise” and I had a hard time explaining to him why the tortoise is slower than the hare even though the tortoise actually won the race. He could not understand the deeper meaning to that story. However I think I should understand. Slow and steady wins the race, I keep telling myself, however I did not realize the amount of patience involved in this.
So he did not get discharged today. Now I understand why the doctors do not like predicting discharge dates. Things go wrong, things do not go as expected. Atiksh has really not gained any weight in the last 3 days, and yesterday he lost 10 gms. So we are at a standstill. They increased his fortification yesterday and I am really hoping that results in some weight gain today. They have also decided to feed him “Ad-lib” meaning ‘whenever he wants’. Apparently during the night some times he gets hungry after 2 hours and when he does not get food he cries and fall asleep and does not wake up at the scheduled time. So they think letting him eat whenever he wants might result in more intake. I hope this works.
I gave him two bottles today and he did well. They are also starting his vitamins and coming down on his methadone. He is still having some withdrawal issues. They said that we can do some doses of methadone at home and that will not keep him in the hospital.
When I was feeding him today, the child educator, who works with the NICU babies stopped by to see him. She said that he is so charming, yet does not finish his bottles. I started telling her about how he has only one lung and hence it is hard for him to drink and she immediately asked if he has a diaphragmatic hernia. She started telling me on how those babies are the worst eaters in the NICU and how just the condition makes it hard on them. I told her that I spend my days celebrating small victories- the fact he took a few full feeds by mouth, the fact that he does not have a lot of oral aversion, the fact that his throw ups have reduced and keep pushing myself. I think it is impossible to be a NICU mom and maintain sanity if we do not celebrate small victories. I cherish every small step forward knowing that it will add up to a whole step forward very soon.
When you see Atiksh you see a normal, happy baby and for a minute forget what he has been through. Then I put that bottle to his lips and I realize that he is sick. He will forever have feeding issues. He will have issues taking a lot of food and hence working with calorie filled food so that he does not drop off the chart is important. I was reminded time and again today by all the doctors on how his journey the first few years will be and how much patience I need to have. I told them, that my other kid had food issues too and we have learnt to handle it with a lot of patience too and it is going to pay off soon when Avy can have milk again, and now we are back to the same starting place with Atiksh.
The thing about diaphragmatic hernia is that, the kids appear normal from outside, people do not realize just how sick they can be- a small cold for another child can land mine right into the hospital. I am learning to accept that Ajit and I have a huge responsibility with regards to Atiksh, to keep him safe, to teach him about his condition as he grows and to help him accept that. I feel like history is repeating itself, we had to do this with Avy and his allergies and now Avy is a four year old who is very clear on what he has and very accepting of who he is and what he can be and I hope we can have the same success with Atiksh.
Though I was bummed he did not come home today, I understand the need to make sure he can gain weight before he comes home. We need the right recipe for fortification that works for him so that he does not need to put more effort and take more volume.I for no reason want him to suffer. I tell myself, that I have a wonderful little tortoise, who is slowly, but steadily doing everything he can to get well and come home. I do not want him to be the overconfident hare, I want him to be the slow tortoise who will win in the end.
I love you my strong little fella, just a few more days…