Tuesday, March 16, 2010

Specific prayer request

Bodie says "they're doing WHAT to me today???"

Bodie needs some directed prayer today. Yesterday, he was evaluated by ENT. They put a scope up his nose and down the back of his throat to evaluate his vocal chords. Besides the fact that he went absolutely balistic and it took me 45 minutes to calm him down afterwards, the news wasn't exactly fantastic. Although it appears that his vocal chords do close, he has left vocal chord paresis (not even sure if I'm spelling that right). Basically it means that his left vocal chords aren't moving. I don't believe it's much of an issue from "will he ever be able to speak?" - from everything I've heard, most of these kids with vocal chord paresis outgrow it (or learn to compensate for it - they may just have a raspy voice). It's not an uncommon complication both from his intubation and from cardiac surgery in general (the nerve that controls the vocal chords runs around/through the heart). And let's face it, as long as I know his voice will come back eventually, it's not the end of a world to have a newborn that can't screem too loudly! :-)

It is, however, problematic from a feeding perspective, since there is such a risk of aspiration. The ENT has referred Bodie for a swallow study at 1pm today, during which time they'll give him a little bit of breastmilk in a bottle (mixed with barium) and do a constant x-ray to see where it goes. If it turns out it is aspirating into his lungs, they will most likely recommend putting a g-tube in. That's a feeding tube directly into his stomach. The advantages are that it is essentially like a button (or a very short tube) that you take the cap off, insert meds and food (I assume through a syringe) and then cap it off - so he doesn't have any long tubes or anything, can wear normal clothes, etc. The disadvantages are that it is a surgical procedure (so he'd have to be put under to have it inserted) and the biggest disadvantage - I won't get to breastfeed him. This is a really tough thing for me personally since it was such an amazing bond I had with Sierra and it is just something that I'll have to work through. The most critical thing is that Bodie gains weight and doesn't have any respiratory issues between the first and second surgeries. And the g-tube won't be permanent - the cardiologist told me most kids are able to have them removed by 6 months or a year.

So, Bodie needs your prayer this morning specifically for the following:
1. Pray that he can tolerate the swallow study - to do it, I think he needs to be able to take 10 or 15 cc's - when we met with the OT Friday, she stopped him after 5cc's because he was gagging and she was concerned about aspiration.
2. Pray that the swallow study shows that his gagging is NOT aspiration, but instead perhaps just a reaction to his ng tube and that he CAN take bottles and try nursing.
3. If that's not God's plan for Bodie, pray for patience for Dusk and I as we adjust our expectations for feeding our sweet boy.

Also, please pray for Bodie's buddy Isaac - he's having kind of a rough morning and struggling with a lot of the same issues Bodie's been struggling with (low sats, feeding issues, morphine addiction, etc.) - his parents are such awesome Christians and have already ministered to me on my rougher days. Pray for miracles to abound today for both Bodie and Isaac!!!

Thanks - and I'll update after the swallow study.


  1. First I must say I absolutely LOVE that picture of Bodie lol. Second, I will be praying for Bodie all day. You are such an amazing mom and I admire your strength and even the fact that you have even kept your sense of humor throughout this. Bodie is so lucky to have you and I know he will continue to amaze us.

    Praying everything goes well today and always!

  2. He looks like "Them are fightin' words". What a cutie. I will be praying that things go well, and as God plans. It is so hard when it isn't the way we want it to go. Many prayers and big hugs!

  3. We love you, Amy! He is strong, you are strong and you all can do this!

  4. A big hug and lot's of prayer from Babyline!

  5. Amy I am thinking good thoughts that Bodie will be able to handle drinking from a bottle. On a side note I have had a few students who have had g-tubes. They are really easy to use and take care of. I hope that Bodie will not need one but if he does make sure to still work with Bodie on his sucking motions with the OT so that he will be able to have it taken out and move to bottle feeding quickly. Take care and Thank you for sharing your journey with us!

  6. Amy,

    I am praying the swallow study shows no aspiration and he will be able to bottle/breast feed. I understand what that means, and I will be praying.

    I am glad he is continuing to do better all the time. He has a world of prayers, as does your entire family. Love you!


  7. My daughter Hayden has the same thing with her left vocal cord. It took her awhile to regain her voice it seemed, but she had been on the vent for a few weeks too. Now she sounds like a normal baby to us. She had the scope as well a couple times. At this stage for her it's very unlikely her vocal cord will ever regain movement, but her right cord does compensate so she's able to protect her airway. She is still breastfeeding and eats pureed food very well. So there's probably a good chance Bodie will do the same!! I remember wondering how this would all work out with Hayden too. We're praying for your precious little guy and you and Dusk and Sierra!!

    Jackie Cech