Sunday, August 31, 2008

It's a mystery



Here is Brooklyn having her esophogram on Friday. The esophogram during which the pediatric radiologist told us that Brooklyn does not have a vascular ring.

I have weird feelings about this. I suppose that I should feel nothing but relief. I am relieved. But I am also so damn frustrated.

Don't get me wrong. It's not that I wanted Brooklyn to have a vascular ring. That's not the case. The prospect of surgery on one of her cardiac vessels scared me. I just want to know WHAT is wrong with my baby. Dave and I really thought that they were onto something with the whole vascular ring thing, it all made sense. And the surgery would have fixed it and made both Brooklyn's breathing problems and weight gain issues go away. When Dr. A called me on Thursday before we went for this test, he said, "I really think we are about to get some answers."

Nope. Not yet. Once again, this wasn't it.

Brooklyn's video swallow study was also "fairly normal." She has an "immature suck pattern" in which she sucks about 3 or 4 times and then takes a break. She tires quickly when eating as well. The speech pathologist told us that normal babies her age suck 30 to 40 times before stopping for a break. This is due to her respiratory problems. It does improve somewhat when she is given thicker fluids. But we already give her formula with rice cereal in it, so they didn't really tell us anything we didn't know. The test was quite brief, and she never choked or aspirated during it, so they didn't get to observe that. The speech pathologist gave us some different bottle nipples to try and said, "This will get better when she grows bigger and puts some weight on." But HOW??? How is she supposed to do that when no one can even figure out what's wrong with her? We stayed around Dallas and went to malls and out to eat Friday, and I kept seeing all these 2 and 3 month old babies who are so much bigger than my sweet baby girl. And she will be 6 months old next week.

I am having such a hard time with seeing how Brooklyn's case could possibly be so complicated and so unusual that no one can figure it out. I am sick of running into brick walls. I am so tired of having to put my baby through all of these tests and not getting anything in return. It's getting really difficult to justify the pain, fear, and discomfort that Brooklyn keeps having to endure. I HATE doing this to her. It's worth it if you can find out the problem. If you can tell us what to do to make her better. But it all seems like it is for nothing. Everyone agrees that there is a serious problem...so what is it?

7 comments:

Sam said...

I'm so sorry. This must suck big ole smelly donkey balls. I hope you find answers soon.

Hope said...

I'm sorry. I thought about you and Brooklyn on Friday, hoping you got some answers. Unfortunitly, all the Malacias cause failure to thrive. I wish she'd start to outgrow it. Is having the laser supraglottoplasty an option? This winter is going to really suck for both our girls!

Cibele said...

I so sorry, that is so hard! I hope you find answers soon, very soon

Jennifer said...

Booo!!! She looks so strong and brave in that brace though. Good job Brooklyn! I can imagine how hard this must be for you as the mother, not knowing how to fix the problem. My heart just breaks for you going through all these tests with no answers. I know she WILL get better though. Someone will figure it out or she will just start to grow out of the blue and this will all be one big bad dream. It will happen, I will pray for sooner rather than later!

Kate said...

Poor, sweet baby! I am sorry. That is so frustrating!

Carrie27 said...

Oh no! I completely understand how you wanted answers and were hopeful, but now you are back to square one again.

I know the tests are not fun but don't give up. LIke you said, there has to be something wrong and there will be an answer and hopefully you'll find out sooner then later.

Beth & Steven said...

brooklyn is such a little beauty. my heart aches for all you guys are going through. hope you find some answers soon. thoughts & prayers are with you.

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