I am sitting here, tears of joy and relief streaming down my face, for a reason most parents would find laughable (but not a heart parent – never a heart parent): Kiran just took an entire bottle by mouth. 135 mls.
Prior to his surgical repair, he was taking 10-30 mls orally – more often than not, he was in the 10-15 ml range each feed. And he would be sweaty and tired, even after taking such a small amount.
We didn’t do much oral feeding in the hospital. He wasn’t interested. We did enough to ensure he didn’t seem to be aspirating, but we mostly used the g tube to let him rest and heal. He has never eaten well in a hospital setting anyway.
At the hotel on Saturday, he took 110 ml. I was blown away. Then he took 70 ml at his next bottle. Travel day was a little wonky yesterday – but so far today, he has done 100 ml, 80 ml, and now 135 ml.
We have a long way to go. He still gets 3 bottles worth over 8 hours at night through his g-tube. We will have to figure out a good nutrition plan that he can handle. It’s all overwhelming for me right now – I will need to work with his pediatrician and GI Doctor and cardiologist to make sure we do all the right things for him. Especially as we approach one year of age, switch to whole milk, introduce more foods….
But man. This is a VICTORY! And it is such validation for me. I was always so worried, especially with his feeding issues, that I was missing something. That maybe it wasn’t heart related at all, and I was failing him by not understanding the real problem. It seems it was heart related after all. It was an energy problem. And he’s ready to eat.
And I’m just sitting here sobbing about it. ❤️