Saturday, December 27, 2008
Tuesday, December 16, 2008
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.
Wednesday, November 26, 2008
Kayley loves her swing which makes Megan happy. She smiles a lot, talks quite a bit more, and is even starting to giggle a little bit. The biggest development since the last post though is that she has found her almighty thumb. At first we thought maybe she'd be a finger sucker because they generally made it to her mouth first, but as soon as she found her thumb that's all she goes after any more.
My last post mentioned that we changed bottles for Kayley and it seemed to do wonders. Well, that didn't last too long. I guess the newness wore off and Kayley got bored again. Feedings began to get hard and long again. She was taking about the same amount that she always had but it puts such a strain on us when a single feeding could take an hour or so. The trend has been somewhat upward since then so we're hopeful that she's getting better. She was taking an average of around 80 cc's 6 times a day. Now she's closer to the upper 80's. We're still a little concerned so we are planning on seeing a specialist to help determine what the problem is. Sometimes she just doesn't seem hungry and sometimes her suck is just really weak. Hopefully the specialist will be able to figure it out.
Kayley's last weight check was November 14. She weighed 11 lbs 4 ounces. That's between a 1/2 ounce to an ounce a day gain since the previous weigh in. It's good that she's gaining weight but her pediatrician would like to see it more consistently around the ounce a day range. Kayley is still in the bottom 3rd percentile for her actual age. She is between the 50th and 75th percentile for her adjusted age. The developmental nurse is coming again today so Kayley will be weighed again. Hopefully she gains a bunch.
We've had a number of visitors since the last post. Megan's college roommate and her family were in the area so they stayed with us a couple of days. The day before they left, Drew caught the flu. I was at the Monday Night Football game when it all started so Megan had to take care of him. Needless to say, she got it right away also. Kayley and I stayed as far away as possible because as you know, it would not be good for Kayley to get sick. That's why we don't take her out in the public much and try to keep her away from kids with runny noses and colds as much as possible. Thankfully, Kayley pretty much got through unscathed. She has had a touch of diarrhea but hasn't acted sick at all. Kayley also had her first Synagis shot on November 4. That will help protect her from RSV during RSV season. The shot works for 28 days. Our insurance company approved her for 5 shots so she'll receive one every month through March.
The next weekend, my brother Chris, his wife Jenny, and their daughter Macie came to visit. They brought more of Macie's clothes for Kayley. It's like Christmas for Kayley every time they send us a package or bring an extra suitcase full of Macie's clothes. Too bad all we did was give them some of the flu. Last I heard, Chris and Macie both came down with it.
Tuesday, November 4, 2008
Last week, the developmental nurse came to the house to examine Kayley. She still has no setbacks to speak of except, of course, her feeding. The nurse weighed her and she was 10lbs 9 oz. That's around a 1/2 ounce gain per day since she was last weighed. It's acceptable but we are really hoping for more. Megan phoned the results into Kayley's pediatrician. She said she's happy with the weight gain but Kayley should be gaining more to catch up to what she should be according to her actual birth age. So, she is going to calculate an increased amount of calories to start giving Kayley so we get more bang for our buck for the amount Kayley does eat. If Kayley doesn't start gaining weight more like she should, the alternative would be to put a feeding tube back in. We really don't want that to happen so we're trying everything we can.
It doesn't help that Kayley now sleeps through the night. She started doing it last week. I feed her one last time late at night between 11:30 pm and midnight and then she sleeps until 8 am or 9 am in the morning. That's great for us but it cuts out another feeding during the day.
On Friday, we had a small revelation. We really liked the BPA-free bottles we got for Kayley and she seemed to take to them right away. However, we wondered if maybe she would like a different bottle better and start eating better. Luckily we had another type of bottle at home and we were able to try it Saturday afternoon. The only thing is that I had to do some handy work to make the hole in the nipple bigger for the cereal to come out. After we got everything ready, Kayley went to town. Evidently, she loves the new nipple on the new bottle. Saturday night she was taking around 90 cc's easily instead of her normal 70 struggling cc's. Then on Sunday, she continued on her new streak and averaged over 90 cc's per bottle. Instead of taking an hour or so to feed her, she was finishing the bottle in 15 minutes! We are so relieved right now. Hopefully this continues and it turns out that the bottle was the major issue. The nipples are very different and she just seems more comfortable now. The old nipples must have just worn her out. Megan picked up some more bottles today, so hopefully we got it right this time.
It's also worth noting that the Prevacid could be starting to work too. The directions say it could take 2-4 weeks for it to start to work. We're just past 2 weeks now. I can't imagine that it would make that much of an impact in one day but who knows. We'll chalk it up to the new bottle and the Prevacid for now.
Friday, October 17, 2008
Saturday, October 11, 2008
First of all, we officially found out that Kayley is not going to be supervised under the Arizona Early Intervention Program. She is simply doing to well. However, if we think at any time that Kayley would benefit from the program or if we see something wrong, we can contact them again to do another evaluation.
She said developmentally Kayley is where she should be. She said Kayley seems more alert than a 3 week old, but some other things she is closer to her adjusted age. For example, she didn't follow a colored ribbon, which babies don't start to do until 6 weeks old. She tried tummy time and Kayley had an absolute fit. She said that is from the reflux so we may need to do tummy time on a bed or something, but Kayley needs it. I told her that I notice Kalyey always turns her head to the right when she is in her infant seat and she gave us some stretches to do to make sure that doesn't turn into a problem.
I also told her about Kayley's eating issues and she thought it sounded like Kayley had pretty severe reflux. She said we need to make sure we are persistent with the pediatrician about treating it. She said that the neosure formula we mix in with the breast milk makes reflux worse because it is so heavy.
Sunday, September 28, 2008
Thursday, September 18, 2008
The actual examine went very well. The nurse was very happy with Kayley's development. She also weighed Kayley. Kayley was a wet diaper aided 8 lbs 12 oz. This is a 6 oz increase since her last weigh in at the doctor's office 3 days earlier. Again, no problems gaining weight. This is a positive because it allows Megan to try to breast feed Kayley more. Upon being released from the hospital, they only wanted Megan trying once a day because Kayley needed the calories from the breastmilk-formula mix through the bottle. Since Kayley is doing so well, Megan can try at every feeding. Kayley's next appointment with the developmental nurse will be in October.
Speaking of eating, Kayley has been doing pretty well. She's still pretty inconsistent. She does well but there seems to be a couple of times during the day that she's either uncomfortable or just not interested in eating. It really becomes a fight to get her to eat at that time and she usually wins. Good thing she normally recovers and eats well the next couple of feedings. We have kept Kayley on a 3 hour eating schedule including through the night. She keeps her average cc's consumed in the 60's and 70's per feeding. The gas and spitting up has subsided a little bit since we have her on Mylicon. Don't get me wrong though, she's still the gassiest baby I've ever known!
Friday, September 12, 2008
Monday, September 8, 2008
Saturday, September 6, 2008
Friday, September 5, 2008
First of all, we would like to thank Kayley’s Grandma, Marla. She made it possible for me to be with Megan when she was in the hospital and with Kayley after she was born. She took Drew in and was glad to do it. She allowed us not to worry about him. And the best part, Drew wasn’t impacted at all. He was with Grandma and he was happy. They became great buddies during that time. She even took care of Drew some Saturdays so Megan could go to the hospital and I could work on my golf game. Without her willingness to help out, there’s no way Megan and I could have been so involved with Kayley.
Next, we would like to thank our primary nurses at Phoenix Children’s Hospital…Lindsey, Kay, and Jill. They were all with us since the beginning and they were all so great to Kayley, Megan, and I. It’s a very stressful situation when your 3 lb, premature baby girl gets admitted to the NICU and they gave us so much comfort. We could tell how much they cared for Kayley. And, they were all so willing to answer all the questions that Megan and I had…and as you can imagine, there were a lot.
Also, we’d like to thank all the other nurses and staff at PCH. Many of them cared for Kayley numerous times and we added them as our associate nurses after Kayley had been there awhile. I could try to name all of them but there were so many that cared for Kayley that I’m afraid I’d miss someone. As I’ve said before, we were definitely at the best place in Phoenix for the situation we were in and this amazing staff makes it that way. As much as a parent worries when their child is in the hospital and not at home, we wouldn’t have wanted Kayley anywhere else.
And last, we’d like to thank everyone, family, friends, friends of family, family of friends, etc. who has followed Kayley’s journey. All of your thoughts and prayers were definitely appreciated and were definitely answered. Our ‘roller coaster’ ride through the NICU was limited to only a few ups and downs because of them. Our family is so lucky to have so many caring and thoughtful people on our side.
So again, thank you to you all. We couldn’t have made it through this without you!
Andy & Megan