The results came back from the blood work and everything was normal. Friday she survived the Berium swallow test and no reflux was found. That was an amazing experience! She was bound to a sort of board with velcro strips. Her head was held between two large foam blocks and then her wrists were tied above her head. She was not a happy baby. We were asked to not feed her for 3 hours before the test, so fortunately she was hungry enough that even that chalky stuff calmed her down. I was able to stay with her and watch the food go down her esophagus and and into her stomach (which looks like a sideways snowman when from certain angles!). It wasn't until he tilted her body towards her head that we saw a little reflux, however the radiologist said that was normal. A speech pathologist checked her sucking and swallowing and felt it was normal as well. She was young and newly married and very baby hungry! She stayed and played with her for quite awhile.
We've considered the size of the holes in the nipple and have tried that route. So far it's the same. She's had a small cold these last few days and I wonder if that's why she's eating a little less. If colds can make that much difference for her then my fears of keeping her from other people have been confirmed. We've also started waking her up in the middle of the night to try to get her to eat more and she barely got down 2 ounces. She just wants to sleep! When she's awake she's still bright and alert ... it's just such a mystery as to why she has no interest in eating!
Our bishop asked today for everyone to fast for her (as well as other people in our church that are struggling) next Sunday. I know she's been included in countless prayers ... and we're grateful.
Sunday, December 31, 2006
Still nothing
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4 comments:
Thank you for creating this blog. It's a great way to be kept abreast of everything that is being done to help her. I love all the photos, she is a beautiful baby! She is also a very lucky little girl to have such great parents. Her heart is not the only one that is hurting. It can be so hard as parents to watch things happen to our little ones and not have any control over it. We'll be fasting for her next Sunday as well.
Love you!
We also will be fasting next Sunday. Graycie worries daily about her, she even suggested we have Exteme Makeover come to you. Not for the big luxurious home, but she said she saw a show that made the air in the home pure. Just thought I'd add that, it was really heart felt.
A baruim swallow is not the best test to diagnose reflux. The gold standard is a 24 hour pH study. Some babies vomit alot from reflux, while others just reflux enough to choke and not vomit. Read about silent reflux.
At 2 months old, my son was diagnosed with reflux by a barium swallow. At 8 months, another barium swallow led to the diagnosis that he no longer had reflux. His ongoing problems led to finding physicians at a good childrens hospital. His pH study demonstrated severe reflux. Medication was not helpful and he eventually had surgery due to precancerous changes in esophagus.
Next topic-
Have they considered a Chiari malformation as a possible reason for your daughter's lack of appetite?
Has she had a neuro work up as well as a genetic workup at a prominent children's hospital?
I can't stress the importance of pediatric specialists.
I highly recommend children's hospitals. They know how to work with children and minimize the stress and trauma.
Good luck and God Bless!
I apologise for being behind the times. Apparently a milk scan is quite useful in daignosing reflux and more.
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