Saturday, December 27, 2008

Slashing Kayley's Feeding Time

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.

Tuesday, December 16, 2008

Holy Cow There Are A Lot Of Updates

Well, we've been pretty busy with Kayley the last couple weeks. Her eating hasn't really gotten much better since the last post. With all the things we've tried, it's even gotten a little worse.

After deciding that something really needed to be done to help Kayley eat, we asked our pediatrician if there was something else we could try. She recommended getting a feeding evaluation at Phoenix Children's Hospital. So, we set up the appointment for December 2 and went in. We weren't supposed to feed Kayley for at least 3 hours before the appointment so she would be hungry enough to demonstrate her eating abilities. It ended up being about 3 1/2 hours before we got into the appointment. Kayley was acting very hungry. That was perfect except that Megan and I were worried that she'd be so hungry that she'd take down the whole bottle in no time. Then we'd look like fools for bringing her in. However, Kayley showed her true colors. She was so starved but then only took about 10 cc's and was done. The speech therapist took over and couldn't get her to eat either. She determined that Kayley had a pretty good suck but just didn't want to eat. Kayley just eats enough to squash her hunger and then she's done. The speech therapist decided it was not a mechanics issue with the way Kayley eats but was probably more of a medical issue. Kayley limits herself based on her hunger. The speech therapist really wanted us to see a GI specialist before she did anything else so that we could rule out anything medically wrong with Kayley. She also gave us some suggestions. She had us switch to a nipple with a bigger hole in it and put more cereal in the bottle so that slows the speed at which it comes out. That has seemed to help the amount of formula we can get Kayley to take but it doesn't change the fact that she still fights it during the whole feeding.

So, we made an appointment with the GI specialist for December 4. We were really lucky to get in so soon because they are usually booked out a couple months. But, we thought Kayley's issue was bad enough so Megan asked to get in sooner and they obliged. At the GI appointment, the doctor just talked to us about Kayley's habits...eating, pooping, spitting up, etc. He laid out a plan to check 3 different things. First, perform an upper GI test to determine if Kayley's anatomy is all correct. Second, test Kayley's poop for blood. If blood is present, it means Kayley is allergic to her formula. And last, give Kayley medicine to help her stomach motility. Basically, help her stomach, rectum, and anus pass her bowel movements. The doctor said this last option is one he doesn't like to use much. There aren't any good medicines on the market for this. The one they had was pulled because it caused heart issues in kids. So, we started with steps 1 and 2 first.

I'll start with number 2 (fitting because it deals with poop). The doctor sent us home with homework. He gave us 3 cards and some sticks. The next 3 times Kayley pooped, we need to take some of the darkest poop in her diaper and "paint" it on the card. Again, this is to check for blood in her stool. Marla, Megan, and I were all lucky enough to act as artists. Kayley pooped on each of our shifts. Then, Megan took in the samples to get checked. We are still waiting for the results.

For number 1, we scheduled Kayley's Upper GI test for 12/10. Again, we could not feed Kayley 3 hours prior to the test. This time, she had to drink some barium while the doctor watched it go through her system. It turns out that Kayley doesn't like Barium either. She would not drink it at all. She screamed more than we've ever seen her scream before. The nurse and Megan had to hold her down while I used a syringe to force feed Kayley while the doctor watched. Luckily it only lasted for a couple minutes. The doctor determined right then that nothing was wrong with Kayley's anatomy. That was a good result because if there was something wrong, it most likely would have required surgery. The doctor did say, however, that Kayley has severe reflux. Before we even started filling Kayley's stomach with the barium, she was already starting to reflux. So, our next step was to wait for the stool results and see what the GI specialist thought of the upper GI results.

Later that day, we had Kayley's 6 month checkup. Kayley weighed in at 12 lbs 13 oz. It was a great weight gain and showed that we were at least successful getting Kayley to take a good amount of formula. Now if it just didn't take an hours worth of fighting with her. Everything else at the appointment checked out well. Kayley didn't enjoy her shots of course.

That night went by normally. Kayley even "passed" the barium from the morning. We thought all was good. However, the next day wasn't so fun. While Megan and I were at work, Marla fought and fought with Kayley to eat. Kayley screamed through all her feedings like she was in pain. She was trying to have a bowel movement multiple times but only squirts came out (I call them sharts but Megan doesn't like me to use that term). Then in the early afternoon, Kayley passed a very hard and big poop and there was blood in it. Marla contacted Megan who contacted the doctor. They said to bring Kayley in right away. Whenever they have blood in their stool, the doctor wants to see them right away. So, I took off from work immediately and picked up Kayley and headed to the doctor. Kayley's doctor wasn't in the office so we saw one of the other doctors. He examined Kayley and the poop that we brought along in a plastic bag. He found that Kayley had some tears in some of the fissures in her anus. And luckily, he felt it necessary to show me. Yep. There were tears. Then the doctor examined the poop. It was just too big and hard for her. It also contained some of the barium from the upper GI test. So, the diagnosis was severe constipation from the barium. We were sent home with instructions to put diaper cream on Kayley's butt and karo syrup in her bottles and then call with an update the next morning. Kayley struggled a little bit to eat the rest of the night but it was nothing like the episodes during the day. Her bowel movements returned to normal.

Another thing we did was contact the Arizona EIP (Early Intervention Program) to come out and evaluate Kayley again. This is the group that determines if Kayley needs extra help in any areas due to her being a preemie. A lady first came out on December 7 and decided that she'd like to start following Kayley to track her progress. She recommended that to her board and they agreed to help. It will be great to have some people with expertise stop by every now and then to check on Kayley and give us some guidance. Her first appointment was this morning but I haven't gotten an update yet. I'll have to provide that later.

Since Kayley's upper GI test, her eating has regressed. She really fights eating now and will only take the bottle if we walk around with her or if she is half asleep. No feedings finish before an hours time. Megan called our doctor again and she is going to discuss options with the GI specialist. In the meantime, we are trying to determine what could have caused this regression. It's like she has developed a feeding aversion. It's possible that she still remembers the episode when we tried to feed her barium so she has become very reluctant to take any bottle. That seems like around the time where her feedings started getting worse. Well, whatever it is, we have everyone possible looking into this. Hopefully we find a solution soon...

Not everything has been bad with Kayley. I hate to be so negative but those things just seem to be the most important right now. Kayley is a very happy baby otherwise. She smiles any time we talk to her and is starting to giggle a lot too. She's really getting to be fun. And yesterday, she rolled over multiple times while Marla was watching her. She did it enough times that Marla was able to get video of it (see above). She went from her back to her stomach which is a good feat. She hasn't even gone from stomach to back yet which is supposed to be easier. Kayley is also starting to grab and hold her toys a lot too. She lays under her play gym for a good amount of time just whacking and grabbing the rings and other toys.

Kayley still sleeps like a rock for the most part. Some days her naps are better than others, but one things for sure. She never has any issues sleeping through the night. Megan and I got lucky again. Kayley falls asleep during or after her 8 pm feeding and then sleeps until I wake her up for her 11 pm feeding. She pretty much sleeps through that whole feeding and doesn't get up in the morning until around 7:30 am when we go get her to eat again. We couldn't ask for anything better. Hopefully we can start bypassing that late feeding soon so I can get to bed earlier.

There are some pictures of Kayley and Drew while we were trying to get a picture of them for our Christmas card. Drew loves helping Kayley and giving her kisses but as you can see, he's not too sure he wants her on his lap. That's pretty much it for now. I need to start updating this blog more often so my posts aren't as long.

***UPDATE****After I got done writing this, I received an email from Megan. I didn't want to go back and change anything so I'm just going to give the update here. We got the results back from Kayley's poop screenings. They did find blood in her stool so we are switching to a new formula. It may take a while for Kayley to adjust but at least we found something! This is good because this could help out tremendously. However, I wish it wouldn't have taken so long for us to find this out. It just seems so simple. I will give you an update later on how this works out.