Today Ajit got up early and went for the rounds. I got to sleep in with my little Avy, which did me a world of good. At rounds, they discussed about Avy’s allergies and the potential for Atiksh to have some amount of intolerance too. So they decided from his 12’o clock feed to put him on Neocate (a milk and soy protein free formula) for 24 hours to see if it will reduce his reflux and throw ups, as it could be stemming from allergies. It is just a trial.
He had also lost weight for three days in a row (100 gms the first day, 70 gms the second and 15 gms the third). Now a little throw up once or twice a day is okay as long as he can keep his weight gain up. They also got him up to his full feed levels which is 67 mls. He takes about 20-30mls by mouth and the rest by tube. As he gains weight his feed will be adjusted. They talked about fortifying my breastmilk to make it more calorie filled, and hence will help him weight gain.
CDH babies cannot consume a lot of volume. A baby his size will drink more volume. However since we cannot go up on volume,his stomach cannot handle it, it has to be richer in calorie so he can get his needed calories but with lower volume. If he does well on neocate, they will use that to fortify my dairy free breast milk (I need to go on a dairy free diet, similar to what I did with Avy). However if he still throws up the same amount then I do not think going dairy free might be the answer.
We are also trying other tactics, like keeping him upright for a while after the feed, keep his bed elevated etc to keep him stable.
This whole feeding thing is just very very confusing and has so many parameters that all have to work together. I remember how hard it was feeding Avy those initial few months. He would not even take a full 2 ounce bottle, with Atiksh there are so many other things in play. Sometimes I feel we are asking so much of him- he has to breathe on his own, drink almost the same amount a normal baby would, we wean his pain medication and yet he should not throw up , and every time he will gain weight, they will increase it feeds and say he needs to do all this to even come home.
The goal to come home is eat all his feed by mouth and gain weight. Simple enough right? I wish it were!! It is like a moving target, when he gains weight they increase his volume and it starts all over. His goal now is 67 mls a feed which is a little more than 2 ounces. He takes only about 20-30 by mouth, anything more we force he throws up his entire feed. The goal this week is to work on getting him to take more by mouth. It is all very stressful when you know that he needs to do this to be able to leave the hospital.
Slow and steady is what it should be- what the attending doctor told me stuck with me- she said that, they need to get him to a good spot before he leaves the hospital so that we do not watch him under a microscope all the time. She said that I need to able to trust him and not worry about him every minute. I do hope that happens.
Today we also took Ajit’s mom to visit him and big brother to visit him. Avy was beyond thrilled to see him and touch him. He touched his head, his hands, his cheeks and was just so happy. He even told the doctor that he touched his baby brother. Atiksh was still sleepy a bit, so we are waiting for a better day, maybe tomorrow.
They are also weaning down his Fentanyl, his last medication on the central line. It should be off tomorrow (Monday) and they he can finally have a bath..yayy! While they are weaning his fentanyl he is getting methadone orally, to help. Soon he should be off all medications.
I called last night before going to bed and guess what he had gained 100 gms….maybe the wheel is turning…maybe it is!!!!!!!!!!!!!!!!!!!