I vowed never to do it again. Look up stuff on the internet, that is. It's depressing; it's worrisome. Of hope, it is barren. I began searching for videos of swallow studies which lead me to browsing the internet for articles on aspiration, silent aspiration, barium swallow studies, and back to vocal cord paralysis (as if I haven't already read just about every article out there on the subject). Two years ago I had never even heard of these terms. Now, I'm obsessed with finding out as much as I can, and although I hate to admit it, it all goes back to feeling guilty that I couldn't carry my babies to term. Had they been born at term these words will still be unbeknown to me. Instead, they are now part of my vocabulary, and the thought of aspiration enters my mind on a daily basis - at most every meal. Each time Cade coughs when he drinks, I know that he very likely just aspirated at least a small amount.
The best description of aspiration I found in my depressing internet search is this:
"When the larynx is not closed tightly enough, food can penetrate into the trachea. The only cause for aspiration during the swallow is reduced laryngeal closure. During the swallow, the larynx closes at 3 levels: epiglottis and aryepiglottic folds, false vocal folds, and true vocal folds.
In order for aspiration to occur during the swallow, food must penetrate all 3 levels. " (UMD)
Cade did his 5th swallow study last week at Dell Children's Hospital. He did better than he has in previous swallow studies but far from ideal. At his last swallow study, we were told he should only drink from sippy cups with stoppers or slow-flow bottle nipples. At this study, we were told he had a delayed swallow on every cup we tried. I brought five different types of sippy cups, sports bottles, cups with straws, etc. to try. He did best with a sippy cup that has a rim. It did not have a stopper, but the flow was still slow enough for him to manage it. When he tried to drink from an open cup, he had a silent aspiration which means he didn't even try to cough it out. It went straight into his lungs. That is very dangerous. That leads to aspiration pneumonia.
I left feeling once again defeated. It wasn't what I wanted to hear. I don't know if I'm ever going to be able to accept that they both still face challenges due to their prematurity. It's really scary to hear him cough when he takes a drink too fast; it's even scarier to know that he is aspirating silently at times. We were advised to use the cup with a rim that he did best with and to "proceed with caution". I don't know exactly what that is supposed to mean. Am I supposed to tell Cade's epiglottis to be careful?
I found this short video on YouTube that shows aspiration when swallowing. You'll see the liquid going down the back of the throat. That is what it is supposed to do. You'll also see a thin line going down the front of the throat which is the airway. That is aspiration.
http://www.youtube.com/watch?v=1sFNMk87558
As disappointed as I was to learn he is still aspirating, the speech therapist was hopeful. She said he has already made progress and that he is getting stronger. She told us that the best therapy for swallowing is swallowing. As time goes on, hopefully he will get stronger and his swallow reflex will improve.
Our blog tells the miraculous story of our 24 week twins, Camdyn and Cade, and their big sister Brenna - the struggles, the challenges, and the many joys!
3 comments:
So I have a few questions. 1) Why has Cade had so many swallow studies if he hasn't had pneumonia yet? Isn't that a good sign that he is doing a good job of getting it out of his lungs? 2) has anyone mentioned the collagen injections they do to help the paralyzed cord? 3) So I'm FB friends with a ton of other micro moms so that we can communicate more easily about our kids. Tried to find you several times...if youre interested in friending you can find me under Sarah Clark Pope. If not, no worries.
Sarah-
Cade had 2 swallow studies while he was still in the NICU. After the second one, he was given orders to stop all oral feeds. He was aspirating even on thickened liquids plus they thought he may have bilateral vocal cord paralysis and not just unilateral. That is when all of our feeding challenges began. He missed the crucial window to learn. By the time he got out of the NICU, we had another study done which showed he could start eating by mouth, but by that time, he had already developed huge oral aversions hence the g-tube. He did get pneumonia last May, so we did another swallow study at that point. That was when they told us to use only cups with stoppers or slow-flow nipples. This last swallow study was done to see if he could safely drink from an open cup. It turns out that the answer is no, but at least he can use cups without stoppers now. I do know about the collagen injections, but no one is suggesting we need to do that right now. He only had pneumonia once, and although his swallow is delayed, they do think his muscles will get stronger and improve his swallow. I will friend you on FB. Thanks!
The guilt always seems to come back, huh? I just have to believe that I did everything possible for my boys and that's all I could do. It also helps me to think about the fact that I am not in charge and ultimately, the outcome wasn't up to me. Hang in there! The twins are so cute and getting so grown up!
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