I learned, early on, babies with heart defects often have trouble eating. Many of them go home with feeding tubes in order to get in their daily calories. They need to eat well and grow well, so they are big enough to handle the surgeries and procedures. In our case, Jalebi will need his “permanent fix” surgery around the 6-9 month range. He needs to get in his calories, and he needs to gain the appropriate weight. I knew that. I’ve been worried about the feeding tube. We have no way of knowing if he will need it or not, but I know it is a very distinct possibility.
I also knew we would likely have to supplement breast milk with formula, for the added iron. (at least, I think that’s why – I can’t hold everything in my brain) Again, we need to bulk him up! I understood all of this. I was okay with all of this.
What my brain failed to do was connect the dots of what this would all likely mean about breastfeeding. Because we have to closely monitor how much he is eating, I will more than likely not be able to breastfeed my son. I will pump (and pump and pump and pump) and will give him breast milk in a bottle, so we can measure how much he is taking in. But we would have no way of knowing the amount he eats if we let him eat directly from the source.
Again, we don’t know this with 100% certainty. Maybe Jalebi will like eating as much as his father and I do. If he’s a total Rock Star and eats with a great appetite, we may be allowed to feed him the way I always thought I would.
But it’s unlikely.
Of course, his health is far more important than any idyllic dream of mine. Of course, I will pump and do the best I can to give him the nutrition he needs…but man, I am grieving this one. There are so many pieces that are so different from what I had always imagined – and this just adds to the pile.
I am remembering a lesson I learned a few years ago: I am allowing myself to feel what I am feeling in the moment. I am not talking myself out of being sad about this. I am just letting myself be sad. I know it, too, will become a new normal for us – It is amazing how quickly we adapt to all of these new obstacles and realities. I know my brain will firmly move me away from sadness with time, and I will focus on what I need to do for him. That will be all that matters.
But for now, I’m incredibly disheartened about this.