Well, I didn't wait as long to post this time so the updates are more manageable. Even so, we have plenty to tell you.
First of all, I finished the last post with a quick note about how we found out Kayley was allergic to the formula she was on. So, we switched her from Neosure to Pregestimil. And let me tell you, it's not cheap. But, we'll do anything to help Kayley eat better. That includes driving around Phoenix for 2 hours trying to find the new formula. I went from Target to Fry's to Walmart to Walgreens to CVS Pharmacy and finally found it at Basha's...which I might add, is only 1/2 a mile from our house. But anyway, we found it and Kayley has been on it for just over a week now. The GI doctor and our pediatrician told us it takes over a week to start seeing improvements and with Kayley, it will probably take longer. So far, we haven't seen the miracle we were hoping for but feedings are generally going a bit better.
Next, we were able to get in to the developmental doctor earlier than we originally thought. When Megan called a couple months ago, we couldn't get Kayley an appointment until March. However, we were put on a waiting list and were lucky enough to snag an appointment on December 18. To tell you the truth, my expectations weren't really that high because we've already had numerous doctors and nurses look at Kayley. But, to our delight, we were very pleased with our visit. Megan and I loved the doctor and she was very into helping us with all aspects. First, she noticed that Kayley was always tilting her head to the right. We've never noticed but after she said it, it became very noticeable. The big problem with it is that it could start to affect Kayley's vision. If her head is always tilted, her brain will tell her eyes to see things in a different way. So, we were handed some homework. Mainly, we needed to limit Kayley to turning her head to the left as much as we could. When we lay her down in her infant seat, we put a blanket on her right side to make it tougher to look right. Plus, we try to put everything interesting on Kayley's left. We were also given some stretches that we help Kayley with. I think all of what we have started doing has already helped. We don't notice the head tilt nearly as much.
The next thing that the developmental doctor was concerned with was Kayley's core strength. Since she knows its tough to put a baby with severe reflux on her tummy a lot, she really wanted us to start using Kayley's bumbo seat rather than her infant seat. With the bumbo seat, Kayley really has to stabilize herself and that helps develop her core strength. Again, we have seen tremendous improvement with Kayley's ability to sit up without slouching over.
And last, the doctor gave us a plan for helping Kayley eat. Our first goal was to cut down her feeding time. At that time, we gave Kayley an hour to eat. We were to cut that time down to 45 minutes immediately and not go over. Whatever amount Kayley took was fine. We had to stop after 45 minutes. Then after a week, if Kayley was taking 90% or more of what she was taking before slashing her time to 45 minutes, we were to knock it down to 35 minutes. We were very excited to try this because just feeding Kayley could take up to 7 or 8 hours of the day including preparation and burping time. So, off we went. To spare you the suspense, I'll just tell you that we are now down to 35 minutes. Kayley took over 93% of the 1 hour amount after we cut her time to 45 minutes. We've been down to 35 minutes since yesterday, December 26. So far, she's doing great. It puts a lot of pressure on the feeders, but we have come up with some innovative ways to distract Kayley while she eats. I guess that's one way to tell that Kayley's feedings still aren't perfect. She really needs to be distracted to eat well. Megan and Marla distract her with toys while I still walk around most of the time so she has something different to look at. Slashing the time from 1 hour to 35 minutes has been such an improvement for us. It gives us more time to play with Kayley...and Drew for that matter. It's just better all around for all of us.
The doctor also mentioned that she'd like to see Kayley move to solid food as quick as possible. Solid food will help with Kayley's reflux. So, we've started feeding her a little bit of cereal to see how she does. Right now, she really has no idea what to do with it in her mouth. Most of it just comes right back out. But, that's what we expected and we'll just keep trying until she starts getting use to it. And even though we're moving her to solid food, we still know the importance of Kayley getting the nutrients from the formula. After she can tolerate the solid food more, we'll add some scoops of the formula to any food that we give her.
With all these changes, we're due to go back to the GI doctor and developmental doctor in January and early February. Hopefully they are happy with Kayley's progress. We'll definitely keep you posted.
Hi! I found your blog through Kayleigh Freeman's blog. Your daughter is absolutely precious!
ReplyDeleteI just spent the last hour reading through your post. As I was reading about your Kayley I felt like I was reading about my own daughter, Morgan Kate. She was born August 24, 2008 at 26 weeks. We were able to bring her home over three weeks ago. Everything has been going great, except for the FEEDINGS. She hates eating, she arches her back, it takes us forever, like I said, she sounds a lot like your daughter. She is currently taking Prevacid and Levsin drops. Both seemed to work really well at first and then wore off. We actually have an upper GI scheduled for tomorrow morning.
I would love to know how things are going for you all as far as feeding. What works, what doesn't. Any tips??
You can find our blog at www.morgankatherine.blogspot.com
Enjoy your little one!
Heather Callahan
heather_callahan@yahoo.com
In reading through your post and your moms it looks like you had a wonderful christmas! Thank you for the xmas card, the kids are just adorable! I didn't get around to sending cards out this year...darn it.
ReplyDeleteSounds like Kayley's feedings are going a bit better! I think of you guys often. It was so good to get together with you when you were back in Iowa.
Take care and tell your family hello!
Jill Rudloff