Friday, April 10, 2009

To Eat Or Not To Eat. That Is The Question....That Kayley Knows The Answer To...NOT TO EAT!!!

Forgive me...I've had writer's block. Since it has been a long time since the last update, I have a bunch of news. But, I'm going to try to keep it as short and sweet as possible. And, pictures and video will come later. I don't have anything relatively new so I'll get some soon. Until that time, Grandma Marla's blog has a lot of pics and video...

Kayley is now 10 months old. She is starting to get very mobile. She spins and army crawls all over the place. She even gets up on her hands and knees. It won't be long until she's crawling. The bumbo seat is no longer used. She gets out of that in minutes. The infant seat is close to gone too. We still feed her in it most of the time but she won't just sit in it and relax. Even though she's strapped in, she still spins around and tries to grab things from the floor. She surprised me one night while I was washing her bottles. I heard her grunting a little bit and I walked over to check it out. She was completely upside down reaching for a toy that was inches away from her grasp. She really wanted it.

On March 9, Kayley had a physical therapy appointment. Everything checked out great. Kayley was doing exactly what she should've been doing at that time. Even though that was the case, we still got homework. She wasn't quite sitting up perfectly so we were given some exercises for that. We also received some handouts on how to develop her crawling. We must be doing a great job because she's caught on to that pretty quickly.

On March 16, we took Kayley in for her 9 month checkup. She weighed in at 15 lbs 15 oz. It wasn't great but the pediatrician wasn't too concerned. She suggested we should try pureeing some high calorie foods like avocado to see if we could get Kayley to take more calories in her solid foods. Well, we tried and it didn't go over too well. I'll have more on that in the next paragraph. Next, Kayley was given her shots. I don't know if it's good or bad but she handles those like nothing. She's a pro at it which means she's gotten so many that it hardly fazes her any more. Lastly, they informed us that Kayley will no longer be receiving the Synagis shot (helps with RSV). They saw a sharp decline in RSV so they declared the RSV season over. Kayley was out of house arrest!!! We promptly took ourselves out to eat for the occasion. It's been rough not being out of the house for such a long time.

Within the week after her checkup, Kayley took a bad turn with her feedings. Up until then, we were giving her the bottle and then feeding her solids with formula mixed in. She wasn't doing real great but she was eating at least. Well, she started refusing solids all together and the bottle started to decline too. Megan called the GI doctor immediately and got an appointment with the nurse practitioner. They couldn't get us in for a couple weeks. In the meantime, we stopped solids completely and continued to struggle with the bottle. We were stumped. So, we thought we'd try to make the bottle taste better by putting baby food in the bottle. We put bananas, applesauce, and pears in the bottle. It was very thick but Kayley took the bottles much better. She went from taking 11-12 oz/day (yes, that little) to 20-22 oz/day (still not very good but better). We were feeling ok but we knew something more needed to be done.

On April 1, we took Kayley to an appointment with the GI nurse practitioner. She weighed 16 lbs 2 oz. Not good. That was only a 3 oz gain in just over 2 weeks. It was not a good appointment. We came to the harsh reality that Kayley NEEDS to start eating better or she will have to have a feeding tube. The nurse practitioner came up with a feeding plan. We were to scrap the baby food in the bottle and go back to the basics...formula and cereal. The baby food actually dilutes the formula and causes Kayley to get less nutrition. In other words, less bang for the buck. And, no more rice cereal because it is constipating. Basically, the plan was to start with a new formula, Alimentum, and see how it goes. If that didn't work, we were going to move to Elecare (we thought the other formula was expensive). And, our goal was 30 oz a day!!! Megan's and my immediate reaction was, "NO WAY! That will never happen." After all, her highest total in one day to date was only 26 oz. And that probably happened once. Now we have to get 4 more ounces down her when she's eating worse?!?! We're definitely not giving up, but that's impossible. Oh well, that was our goal and that was that. We took that plan home and had to go back to see the nurse practitioner 2 weeks later for an update.

We started with Alimentum and oatmeal cereal and added the 6th feeding per day back in. She started out pretty well like she normally does. She likes to fool us. We even got up to 29.3 ounces one day. Then, back down we went. She started struggling again and she was spitting up more than before. It was very difficult to get her to eat. So, after 6 days on Alimentum, we switched to Elecare. And guess miracle. She kept struggling. We were dreading our next appointment. Would we have to do a feeding tube?

Yesterday, April 9, we took Kayley back to the nurse practitioner for an update. She weighed in at 16 lbs 4 oz. Heck, we were surprised she gained weight at all! The nurse practitioner and the nutritionist came into the room and asked for an update. We gave them the bad news that there was no feeding miracle. Surprisingly, no feeding tube was mentioned initially. Instead, we were to continue on the Elecare since we just switched. To help with the spitting up, we were to add more cereal. The good news was that since we were adding cereal, the calories per ounce went up so the total ounces Kayley needed to take per day went 28. We only had to climb Mt. McKinley instead of Mt. Everest. The nurse practitioner also instructed us to up the doses of Reglan that we give Kayley. Kayley is a little bit bigger now so she can handle the bigger dose. Lastly, Dr. McOmber told the nurse practitioner that if it didn't get better by this visit, schedule a scope and biopsy. So, one of the next Monday's, we'll be taking Kayley in for the procedure. They will put Kayley to sleep and then stick a scope down her to check things out. They will also take a biopsy to see if anything else is going on. The visual results will be available instantaneously but the biopsy results will take a week or so. We're just happy that they are taking the next step to figure out what is wrong.

So all in all, Kayley is progressing perfecting in all areas except feeding. As as you just read, we are struggling quite a bit with that. Hopefully something positive happens with that soon. We really don't want to have a feeding tube put in even though they keep telling us it actually reduces OUR stress a bunch. We would no longer have the pressure of getting Kayley to take a certain amount. We'll just give her what she'll take and then tube feed her the rest of it. I can totally understand how that could be because every feeding normally ends with the feeder frustrated and dumbfounded. However, we still don't want the feeding tube. Poor Kayley doesn't need that discomfort too. She's already going through enough...

No comments:

Post a Comment