Kinley has reflux. Yep, that is what we learned at the swallow study today. (As if we didn't know that already by all her throwing up.) Well, I guess that is not all we learned. We also learned that Kinley does not have any additional anatomical abnormalities that are causing her to have difficulties eating. We already knew that her stomach was in the middle of her body instead of off to the side like it is in the normal person, which makes her reflux worse. The good news is that she does not have any problems swallowing, her esophagus looked normal, and there were no kinks in her stomach or small intestines that might have caused a problem. All good news. And, Kevin even got a compliment on how well Kinley's NG tube was placed. It was just in the right spot. Yea Kevin! He is such a pro at placing NG tubes now.
So, now that we know the only problem seems to be reflux I am not sure if there is anything else we can do to help Kinley eat better since we were already treating for reflux. I guess we continue to do what we have been doing and wait to see what the docs say at Kinley's next appointment at Children's Mercy, which is the later part of next week.
Thursday, September 11, 2008
Wednesday, September 10, 2008
Kinley eating?
We are still trying to figure out how to get Kinley to eat more, but Kevin's sister was over yesterday to take some family pics and she got this great pic of Kinley eating. I thought I would share. Family pics to follow.
Tuesday, September 9, 2008
Happy 6 Month Birthday Sofie!
Happy Birthday to you...Happy Birthday to you!! Today Sofia is 6 months old! Kevin and I have been following Sofie's progress since we met her and her mom during our tour of Children's Mercy after Kinley was diagnosed with CDH. Sofie is quite the fighter and gave us hope when no one else could. Have a great birthday today, you deserve it!! Oh, and eat lots of bottles today for your mom, pretend it is birthday cake. YUM!!
Monday, September 8, 2008
Infant-Toddler OT Visit
Today Kinley met with her occupational therapist from Infant-Toddler Services of Johnson County. Since this was the first time Jami met Kinley, the first hour was spent going over Kinley's history. Jami listened intently and took lots of notes. She asked Kevin and I what goals we had for Kinley which was nice because up until this point we have just been told what our goals should be. We stated that our goals were for Kinley to keep gaining weight and for her to increase the portion of her feeds that are from the bottle.
Jami was able to watch me feed Kinley and Kinley ate very poorly, as she has been eating for the past several days. She only ate 25mls from the bottle before getting upset and starting to cry. This is especially frustrating because we were feeding Kinley an hour and a half late and she should have been very hungry.
After watching a feed, Jami stated that she wants Kinley to have a positive bottle experience each time we feed her. I agree with that. Jami suggested that we buy a toy or two to attach to Kinley's bottles or have some sort of toy/blanket that Kinley can hold onto or focus on while we feed her. I agree with that as well. The problem is that Jami said we should stop feeding Kinley at the first sign of refusal of the bottle by Kinley. I have a little problem with this. While it sounds great on paper, Kinley gets upset after less than 1 ounce of milk at almost every feed. I feel like we need to figure out what is causing Kinley's fussiness when she eats, and not just give into her fussiness and stop the feed. Hopefully it is not just reflux because we are already maxed out on Kinley's reflux meds and it doesn't seem to help anymore. I am waiting to see what happens at the swallow study this Thursday. We need to figure this out pretty quickly, because what we have been trying is not working and her oral intake has been steadily decreasing since we have been limiting bottle time to 20-30 minutes per session. It makes sense that her intake has been slowly getting worse because we are feeding her for less time. What was supposed to happen with the shorter bottle feeds was for Kinley to enjoy feeding more and get hungry for the next feeding. Kinley does not seem to be getting that because, as I said before, her oral intake has been steadily decreasing and for the past 3 days Kinley has been eating less than 300 mls of milk from the bottle for the entire day (she had been eating closer to 500mls)!
There are a couple of reasons for this that I can think of. First of all, I think Kinley needs some encouragement to continue eating from her bottle after she starts to get fussy. Most of the time Kevin and I were able to get Kinley to take her bottle back with a little persuasion, singing, toys or changing feeding positions. Now we are not supposed to do that anymore and are supposed to just stop the feeding instead. Secondly, I think Kinley is just getting used to receiving most of her nutrition at night while she is sleeping and doesn't really get hungry during the day, so she can not associate a bottle with stopping hunger. Since Kinley has been eating so poorly the last few days her overnight feeds have been lasting 10 to 11 hours to make sure she gets all her nutrition. This in turn leaves less time during the day to even try bottle feeding. It is a vicious cycle that we have entered into.
Jami, Kinley's new OT thinks that we need to get more calories into Kinley during the day by bottle or NG. She suggested that we feed Kinley a bottle and give the rest through her NG tube so that she gets used to having a full bottle's worth of milk in her stomach at once. That's when Kevin and I said that we had originally tried to do just that, but Kinley threw up her tube so much it wasn't really worth it. We may have to go back to having the NG in all the time and see if anything has changed. Kinley did get her reflux meds increased, so maybe that would help her keep the tube down. It is hard to say, but I am not too optimistic about that since she threw her tube up this morning just after her tube feed finished. I didn't even get a chance to pull it out before she threw it up.
Well, for now we will continue to try and follow the instructions from the people at the special care clinic and the new OT from Infant-Toddler. We will wait until Thursday to see what the swallow study reveals, but then I think we need to seriously consider a new plan that is individualized for Kinley and her unique situation. If anyone has any suggestions we are open to those as well.
Jami was able to watch me feed Kinley and Kinley ate very poorly, as she has been eating for the past several days. She only ate 25mls from the bottle before getting upset and starting to cry. This is especially frustrating because we were feeding Kinley an hour and a half late and she should have been very hungry.
After watching a feed, Jami stated that she wants Kinley to have a positive bottle experience each time we feed her. I agree with that. Jami suggested that we buy a toy or two to attach to Kinley's bottles or have some sort of toy/blanket that Kinley can hold onto or focus on while we feed her. I agree with that as well. The problem is that Jami said we should stop feeding Kinley at the first sign of refusal of the bottle by Kinley. I have a little problem with this. While it sounds great on paper, Kinley gets upset after less than 1 ounce of milk at almost every feed. I feel like we need to figure out what is causing Kinley's fussiness when she eats, and not just give into her fussiness and stop the feed. Hopefully it is not just reflux because we are already maxed out on Kinley's reflux meds and it doesn't seem to help anymore. I am waiting to see what happens at the swallow study this Thursday. We need to figure this out pretty quickly, because what we have been trying is not working and her oral intake has been steadily decreasing since we have been limiting bottle time to 20-30 minutes per session. It makes sense that her intake has been slowly getting worse because we are feeding her for less time. What was supposed to happen with the shorter bottle feeds was for Kinley to enjoy feeding more and get hungry for the next feeding. Kinley does not seem to be getting that because, as I said before, her oral intake has been steadily decreasing and for the past 3 days Kinley has been eating less than 300 mls of milk from the bottle for the entire day (she had been eating closer to 500mls)!
There are a couple of reasons for this that I can think of. First of all, I think Kinley needs some encouragement to continue eating from her bottle after she starts to get fussy. Most of the time Kevin and I were able to get Kinley to take her bottle back with a little persuasion, singing, toys or changing feeding positions. Now we are not supposed to do that anymore and are supposed to just stop the feeding instead. Secondly, I think Kinley is just getting used to receiving most of her nutrition at night while she is sleeping and doesn't really get hungry during the day, so she can not associate a bottle with stopping hunger. Since Kinley has been eating so poorly the last few days her overnight feeds have been lasting 10 to 11 hours to make sure she gets all her nutrition. This in turn leaves less time during the day to even try bottle feeding. It is a vicious cycle that we have entered into.
Jami, Kinley's new OT thinks that we need to get more calories into Kinley during the day by bottle or NG. She suggested that we feed Kinley a bottle and give the rest through her NG tube so that she gets used to having a full bottle's worth of milk in her stomach at once. That's when Kevin and I said that we had originally tried to do just that, but Kinley threw up her tube so much it wasn't really worth it. We may have to go back to having the NG in all the time and see if anything has changed. Kinley did get her reflux meds increased, so maybe that would help her keep the tube down. It is hard to say, but I am not too optimistic about that since she threw her tube up this morning just after her tube feed finished. I didn't even get a chance to pull it out before she threw it up.
Well, for now we will continue to try and follow the instructions from the people at the special care clinic and the new OT from Infant-Toddler. We will wait until Thursday to see what the swallow study reveals, but then I think we need to seriously consider a new plan that is individualized for Kinley and her unique situation. If anyone has any suggestions we are open to those as well.
Sweet Baby Elli
It breaks my heart to say that early this morning Elliott Arcile Reed passed away after a very hard fight against CDH. Heaven is now a better place with the addition of sweet Elli. Please keep Elli's parents, Brian and Cassi in your prayers during this tough time. If you want to visit Elli's blog and leave a note for her parents, the address is www.babygirlreed2be.blogspot.com.
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