Friday, March 6, 2009

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Since the last post, Kayley started downing bottles and eating solids like the world was ending. Ok...so that statement is not quite true. Sounded good though didn't it? We're pretty much just trying anything we can at this point to see what Kayley reacts to.

We visited the GI specialist on Feb. 19. He was very happy with Kayley's solid food intake even though it limits her bottle intake. He likes the direction that we're going. We told him her average ounces a day dropped from around 23-24 ounces to 16-20 ounces. He wasn't worried about that at all. He said he was expecting us to tell him her bottle intake dropped to somewhere around 8-10 ounces. That would have been more of a problem. In the end, he said Kayley just needs to take around 70-80 calories per kilogram that she weighs. So, since she weighs just over 7 kgs, she needs just over 560 calories a day. With the solids mixed with formula and the amount she takes from a bottle, she's getting well over that. She takes anywhere from 610 to 690 calories a day. She'll be fat before we know it.

We also gave the doctor an update on how we think the medicines are working for Kayley. We told him the Prevacid seems to work but we really weren't quite sure. He said we're going to keep Kayley on it because it protects her throat by limiting the amount of acid reflux Kayley would have. We don't want the reflux to get worse and therefore cause problems with her throat. That could have very bad effects on her feeding.

Next , we told him that we didn't think the Reglan was working at all. It seemed to work the first week but then it wore off. Reglan is supposed to help the stomach move food through to the intestine. It should limit how full Kayley's stomach feels so she'll be hungrier during feeding times. It's also suppose to make it so food doesn't just sit in her stomach to be spit up later. Well, Kayley wasn't really eating well and she seemed to be spitting up quite a bit. So, the doctor told us to quit the Reglan for a while and see what happens. If it got worse, we would start Kayley back on it. If nothing happened, we'd keep her off it. Well, a week passed without giving it to her and we noticed quite a difference. Kayley was struggling to eat because she always seemed full. And, Kayley would eat solids and then have a bottle, then 4 hours later after playing and a nap, she'd spit up the solids. 4 hours is too long for the solids to be in her stomach. So, we put her back on. It didn't magically make Kayley start eating a ton better but it helped the spitting up a lot.

The last thing we discussed was how Kayley's cheeks would get very red after eating solids. This was more difficult to explain. It happened after all solids including carrots, beans, peas, etc. It's very rare to have an allergy to all those foods. Also, we checked the labels and there was no milk protein in them. We already know Kayley is allergic to that. So, the doctor said he would be surprised if it was the solids. And since Kayley's cheeks didn't get red after having just a bottle, he'd also be surprised if it was the formula. From there, it could have been the spoon, bib, or washcloth we were using while feeding solids. The conclusion, keep switching things up until we can narrow down what's causing it. We even were supposed to switch between formulas just in case...expensive, expensive, or more expensive. The 3 formula options are Nutramigen, Alimentum, and Pregestimil. They all have a different make up in proteins so switching could help. We had Kayley on Pregestimil at first and switched her to Alimentum. That didn't show any difference except I think the Alimentum smelled considerably worse. Pregestimil smells bad enough. Next, we tried Nurtramigen. That's what Kayley is currently on and it seems to help a bit.

Our next appointment with the GI specialist is May 6 so hopefully we can report a lot of progress then.

Our next appointment in general is a physical therapy evaluation this coming Monday. It was ordered by the NICU at Phoenix Children's so it seems pretty standard. In my opinion, Kayley seems like a normal baby for her corrected age so we'll see what they have to say.

Now to Kayley's weight. The last time we weighed her was at her last Synagis shot on the 24th of Feb. She came it at a whopping 15 lbs 11 oz. To me, that just shows that Kayley is getting enough to eat, but it's the struggle we have getting her to eat that's the issue.

For the last few months, we've kept Kayley on a schedule of 6 feedings per day. The first feeding started at 8:00 am and the last feeding started around 11:30 pm. They were spaced 3 hours apart. It worked fine until the last couple weeks. At the last feeding of the day, it became very hard to wake her up. She would be dead asleep and getting her to eat was almost impossible. I tried all of the tricks that we used on Drew and it still didn't work. So, we changed her feeding schedule to 5 times a day about 3.5 hours apart. Her first feeding starts at 7:30 am but her last feeding is now at 9:30 pm. So far it's working out pretty well. Her total ounces a day went down a little bit but not too bad. I'm just thankful that I get to bed before 1 am these days.

Onto Kayley sitting up. She's so close. She's a little behind schedule with it but one of these days she's going to get it. She stays up on her own for 1/2 a minute to a minute but then falls over. The couple of face plants she's done shows she's just not quite there yet but like I said, it'll be soon.

And last, Kayley is still quite happy. She's making more and more noises daily. She's noticing a lot more around her. She loves watching Sox and Drew play. She tries to grab everything. She's all over the place when we put her on the floor. I've even seen her army crawl a couple times to get to things. And unfortunately, she absolutely loves the Teletubbies. I've tried numerous time to switch her to Barney because I can handle Barney, but Teletubbies still reign. See the video to see how much she likes them.