As much as I try to prepare my mind – and heart – for the reality of the rollercoaster that comes with a congenital heart defect, I still find myself struggling. I knew – I wrote about the fact – this heart surgery wouldn’t just magically fix everything. Kiran is not going to just start eating like a normal kid, he’s not going to start crawling tomorrow ….
Feeding. This has been a major, major source of frustration for me. His entire life. There must be something very primal about a mother’s ability to feed her baby, because I have probably cried just as many tears over feeding issues as I have over the very scary heart stuff. He fed really well for a few days, and then he just…stopped. He is back to either flat out refusing his feeds or only taking 10-20 ml by mouth. Basically, we are right back to where we were before heart surgery again.
I don’t really know why. I have my theories. Teething. I’ve cried wolf on that one a few times, but I honestly think there is a tooth coming any day now. Aspiration. When he is focused on eating, he does fine. When he plays and messes and tries to spit his bottle out, I think the milk tries to go down “the wrong tube” and he coughs and gags and cries. I plan to request a swallow study again – we see the pediatrician Wednesday.
I also plan to move forward with the feeding clinic evaluation at Childserve. It can’t hurt, and I need a plan in place or I will go crazy.
I keep reminding myself of these things: Just because he now physically CAN (heart-wise) take a full bottle doesn’t mean he WILL. It also doesn’t mean his mouth/throat muscles are strong enough to do so consistently. It doesn’t mean he won’t be stubborn because he knows he will get full either way. This will be a rollercoaster. I have known that, in my head, from the beginning. But it’s hard to not let your heart get carried away with your hopes for your child, especially when you see him finish half or more of his bottles a few days in a row.
Also, what a beautiful problem to have! I never lose sight of that. He is a survivor. He rocked his recovery. We are HOME, and we aren’t even at three weeks post-op yet. Isn’t it amazing and wonderful that we are in a position that I can worry about feeds. It doesn’t lessen the worry or the frustration – they are very real, and it is the reality we are living in – but it does help me keep things in perspective. We are blessed with this boy.
And now we move to the lesser tough stuff. Feeding. Development. Vision. Feet. Genetics. All the things we had to put off until this surgery was over. The journey continues, and it will forever. This surgery was a big step – an important step – and a truly huge chapter change…but I have to remember this is still his story. There are many more long, frustrating, joyful, amazing chapters to be written.
And I still can’t control a darn thing.
Except loving him and keeping perspective. The first one is easy. The second one, I am struggling with.