Feeding Update

So I can’t say we really got any news yesterday. The swallow study and upper GI went OK. Olivia wasn’t a huge fan of the barium, but we were able to get a few swallows in her to see that she can swallow fine. They then put some of the barium directly into her G-tube to watch it travel through her stomach to her intestines. She puked it up a couple of times, but other than that it looked fine. The doctor said there was nothing to be worried about at this point. From there the speech therapist said that we just shouldn’t push the bottle. If she doesn’t want it just tube feed her so that bottle-feeding doesn’t become a bad experience for her. She also said that if she likes eating the baby foods to continue introducing those and let her eat as much of those as she wants. I had already set-up an appointment to see the feeding clinic at the Waisman Centerin December. That is where Dr. Pauli works also. This would be a team of people including a pediatrician, speech therapist, nutritionist, and possibly some others. I plan to keep this appointment because I would like to get some more opinions.

We also saw Olivia’s Pulmonologist. That appointment wasn’t bad, it just didn’t go as well as I had expected. I thought he would be really impressed with her breathing, and we would be able to turn her oxygen down more. Her breathing sounded good, and her saturations were good all the way down to 0.1 again, but we weren’t able to turn down her oxygen. He was concerned because her weight gain was not as much as they would like to see. Let me just vent about that!! There are several nutritionists who are supposed to be working with us, but they all just assumed that the others were. We didn’t know this so we haven’t had a nutritionist working with us. We’ve had to be just guessing at how we should be increasing feedings, but then Olivia started spitting up more again. It took about 5 calls to the GI doctor to get any answers as to what we should do with her feedings! So…If we had been given the guidance we were supposed to be, she probably would have gained the weight! UGH!

Anyway, it ended up being a really long day for all of us! We were at the hospital for about 4 hours, which seemed like about 10! In addition to the swallow study and upper GI, Olivia had to get a flu shot and RSV shot. Poor Kiddo! She handled it like a champ though, and then slept until 9:30 this morning! Which Joe and I greatly appreciated!

Have a great weekend everyone! Tomorrow we will be going to our first LPA event! I am super excited!