Our little girl is getting bigger. Casey is 9 pounds 5 ounces now. She hit a period where she just maintained the same weight for weeks, but she is finally gaining again. We actually found some clothes she is starting to outgrow.
It has been a pretty busy few weeks for Casey. Her GI specialists had us start to advance her feeds from 20cc per hour to 25. We started to do this and after passing 24cc Casey started to spit up a bit. If she didn’t actually spit it up, it would get up into her throat and just sound awful. We ended up going back down and staying between 20 and 23 for a few days going down to 20 overnight. The next GI appointment she had (last week) I told them how much trouble she was having once we got up over 24. Even though she is gaining, they want her to be able to take more volume. They ordered a GI for last Friday. Just as we had expected as soon as the barium hit 25cc we saw it come up her throat and then she spit up all over the place. The GI doctor changed up some of her medicine to hopefully help to speed up her digestion a little bit so that we can hopefully get up to 25cc. The medicine change went into place on Friday as well, and we were hoping to see a change right away so we could go back up on volume. However we did hit a bit of a snag. The barium really clogged Casey up so instead of maxing out at 25cc we could barely put her on 20 since she was having such a hard time getting things passed. Poor little baby, she had such a tummy ache this week. Finally today things are starting to get back to normal. Maybe if they continue to progress we can start adding volume again over the weekend.
On Tuesday Casey had a few doctor appointments. The first one was with her surgeon who put in her button. It is really great. We don’t have to tape up a bolster on her belly for the temp tube anymore. The button is much smaller and easy to maintain. It hurt her a little to take out the temp tube so they told me to hold off on feeds for a little while. By mid afternoon she seemed to be doing well, and she was getting really hungry so I started up the feeds and everything went great.
After her button we went to the lab for her to get her bili rechecked. She is such a good girl. They take blood from her arm now instead of her foot (thank goodness) and she cries some, but she does so well. He count is continuing to go down, so hopefully she will able to stop the bili medicine in the next few weeks.
After labs Casey and I headed up to her NICU follow up. Luckily everything is in the same building. The NICU follow up ended up going for multiple hours. She had some OT/PT, some developmental tests, a general physical check, and lots of questions about everything that she has been up to since she came home. In the end the doctors are very pleased with her progress.
Today the regional center finally came by. The regional center is setting us up with home visits with OT/PT. I have been calling them daily since getting Casey home, and they finally came out. Now I have a few more assessment type things that they will be doing, but if all goes as planned we could have OT/PT out at the house as early as the week after next.
In addition to doctor appointments Casey has been getting out more. I take her with me to the drug store on the corner every now and then just to get her out of the house. Tim and I took her down to the beach on the 4th to watch fire works. She was not interested at all, she just wanted to go home and sleep. Last weekend we took her to the promenade to get some shorts for Tim and grab a bite to eat. She was having a really bad tummy ache though, so we ended up getting dinner to go.
Well, that’s about it for now. I hope everyone is doing well.