4 months ago, when we first heard of Biliary Atresia and all the experiences that were headed our way, I never thought Dru would be in good enough health to make this trip.
In fact, I was saying this to Bill on our drive down. And later that night as we were going to bed in our hotel, I remember saying "even though it's harder to make these trips, I'm glad we make the effort."
The first day was spent driving (about 3 hours). Dru does really well in the car. We stopped once for a diaper change and to try and feed her. She was not interested in her bottle at all.
We checked in to our hotel, then spent the rest of the night at the ball park.
Dru was acting a little fussy and tired, but no more than usual. I was getting worried about her eating though. She had only had 5 oz all day. Our goal is 27 oz.
I really was nervous to pump 22 oz through her feeding tube, so I programmed her pump for 12 oz and put her to bed.
At about 3:30 am she made a really weird coughing sound so Bill and I both jumped up and I picked her up. She immediately threw up all over herself and me. I felt like a deer in the headlights. I wasn't sure who to clean up first :)
Thankfully, Bill took Dru and changed her while I showered. I just hate that it happened away from home and our washing machine.
Dru does not throw up often at all so I was so nervous about laying her back down. Visions of her aspirating were filling my mind (I know I'm neurotic). So I slept on the couch with her in my arms the rest of the night.
I cried for just a minute as I thought there might be more nights like this to come. But then, what an awesome thing to be able to tell her when she's all better, that her dad and I were holding her through it all.
Dru always like to hold on to something as she sleeps. Usually it's a fleece baby blanket, but on this night it was the strap of my tank top. It made me feel good that there was a small comfort like that that I was able to give her.
The next day, Dru seemed more like herself. She ate much better and napped as usual. And was more smiley.
We even took her swimming for the first time. She didn't cry, but she didn't smile either. In fact, her facial expression didn't change at all.
After a while, she was shivering. So we got out and dried off and watched her brothers and Dad swim.
It was our last night at the hotel and I didn't want a repeat performance of the throwing up so we opted not to hook her up to her feeding pump and just bottle feed her instead. She woke up a few times to eat, but on the whole she slept a lot better.
We are home now and you can tell she is in her happy place. She drank an entire 5 oz bottle, which hardly ever happens, and has been napping in her own bed for almost 2 hours already.
I am really glad we try to keep making trips and doing the things we normally would.
It's good for my boys to see that their interests are important to us even though we are distracted with Dru's disease.
It's good for our family to have things to look forward too.
It's good for Bill and I to put in the effort to make happy, lasting memories with our kids.
It's important for all of us to not let BiliaryAtresia win.
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