Guessing Game & Balancing Act

The last two days have been hard. In a way it's funny. Just when we feel like we're getting the hang of things and have some good experiences, something changes and it's hard and frustrating. Brewer started having more of a difficult time burping and seemed more uncomfortable. Usually about a half hour after eating. We attributed it to gas and spent more time burping him, which didn't really help. In addition he was sleeping as good and Thursday night I was up a lot of the night trying to get him to go back to sleep or just sitting in the rocking chair holding him when he was finally comfortable. 

Saying it was frustrating is sort of a understatement. It was frustrating when Boyd had colic and gas and refulx issues. Again, it's so hard to watch your kids suffer and be in any kind of pain or distress. But with Brewer, it's multiplied. Any time he cries or gets upset it works his little heart harder and pumps more blood to his lungs. That isn't good. And not being able to console him is very hard for me. As his parents that's our job. To help comfort him. But it takes him a good while to settle down. So part of me feels like a failure. I know I'm not. I know by who those discouraging thoughts are being put into my head. I try to push them away, but it's hard. It also seems unfair to me that these heart babies have to endure everything else a normal baby does on top of their heart defect (which can cause a lot of other issues too). I need to try to wrap my head around that one. It's something I'll be praying to understand.

As I was emptying out our backpack from being down in Utah I came across the notes that were taken when Brewer had his baby blessing the night before his surgery. There are many lines that bring me comfort in that sweet blessing my husband gave. But one that is helping me get through some of this says, "We bless you that your body will be strong enough to overcome the weakness in your heart, that you will be able to live a happy and healthy life...." Brewer is a strong boy. We've always known that. And he is still fighting to overcome the weakness in his heart. And I love that part about being happy. That's all we want for our kids right and for the people we love? 

Last night we talked quite a bit with the high risk clinic practitioner to try to figure out how to help Brewer. She thought that it was most likely that he had reflux, even though he's on Zantac and has been on it for quite a while now. But she thought we should just give him straight breast milk to see if it was the higher calories that were giving him trouble. We did that last night and he seems to be much more comfortable. Thank goodness. I hope it lasts. Now that we guessed the problem we have to balance it out. He can't just have straight breast milk forever because there aren't enough calories to help him grow. Because of his heart defect, he burns a lot more calories than a normal baby when he eats and just in general. So that's why they fortify the breast milk. Also, because of his heart defect, his body has a harder time digesting because there isn't as much blood going to the stomach and intestines. So after a few more feds of just breast milk we're going to up his calories to 24. If that goes well then we'll have to up his volume too to make sure he's getting enough calories. If he doesn't do well, we'll drop his calories to 22 and then again figure out how much we need to up the volume. So much of this is guess and balancing it all out. It's hard though because it takes time, days, to figure it all out.

Praying hard that we can settle him into what works for his body very quickly!!

Again, we are so grateful for the doctors and nurses at PCMC!! They are amazing!