SLEEPLESS NIGHTS AND BREATHLESS DAYS

After Owen’s formal diagnosis I continued to remain overwhelmed. I was so disheartened by the lack of information out there. I found a very useful support group on Facebook but it was hard for me to believe that there was so little out there. I know the syndrome is rare but come on throw me a bone. Most doctors don’t even know what his syndrome is. It was crazy to me. As the days went on Owen had difficulty feeding and just breathing in general because of the size of his tongue. I was anxious to set his sleep study up with his pulmonologist. I contacted them and they gave me their soonest appointment. He was only a few weeks old at this point. I was anxious for what the results would show but I had another two weeks to wait. Those two weeks were some of the most sleepless nights and breathless days both Owen and I have had during his whole entire first year.

During the two weeks leading up to Owen’s sleep study I noticed that he seemed to gag on his own tongue. Sometimes to the point where he would vomit. I could also hear him do that same gagging in his sleep. I never slept. I was constantly making sure that he was breathing and that his airway wasn’t compromised. Finally, I couldn’t take it anymore. I had heard about the Owlet sock from a friend of mine and decided to look into it. It was a sock with a pulse oximeter in it that keeps track of your child’s blood oxygen level and their heart rate. It was kind of expensive at $300.00 but I didn’t care. It turned out to be the best investment we had ever made. I’m convinced it saved Owen’s life numerous times.

Up to this point Owen was sleeping in our bedroom in a rock and play. I refused to have him in a crib in his brother’s room until he had his sleep study. I will never forget the first time he stopped breathing in his sleep. Who knows if he would even be here or not. I was finally starting to drift off to sleep when I heard the loud alarm of the Owlet sock. I jumped out of bed and Owen looked peacefully asleep but when I looked at my phone the app showed that his oxygen level was in the seventies. Normal is between 95-100%. I picked him up and shook him to wake him up. He woke up after I shook him twice and looked startled. I was shaking. I remember holding him so hard and just sobbing in the middle of the night. I was so rattled. What if I never had this on his foot? Would he have woken up eventually? Or would he have slept and never woke up? I held him the entire rest of the night and my eyes stayed fixated on my Owlet app on my phone. There was at least three other events just like this one.

Even when Owen was awake he seemed to really have to work to breath. You could see his belly retracting and really working to get air into his lungs. The crazy thing is Owen never complained once. He just adjusted. I could tell that he was breathing hard for air but yet he still smiled. If you looked at him you would never know that anything was bothering him. That is one of the things I love about him. But it also scares the hell out of me because it makes it challenging to figure out if he is struggling with something. I tried to imagine what it must feel like to constantly be struggling for air. It made me so upset that already all he knew was struggle. Struggle to breath. Struggle to eat. Struggle to sleep. This time in his life is supposed to be easy for him. Yet he knows nothing other than struggle at this point. Breathing was exerting so much energy for him. His sleep study could not come soon enough.

Finally his sleep study arrived and it was a nightmare. He was such a spitfire! He had all sorts of electrodes taped to his head and he was not having it. He was wild! He kept ripping the oxygen out of his nose and trying to get the hat they taped over the electrodes off. He barely even slept. Most of the night I had to hold him with everything attached to him. It was such a long night but in the end was worth it. We had all the information we needed. The pulmonologist reviewed the information gathered from his sleep study and diagnosed him with obstructive sleep apnea. He said when Owen did sleep it showed he stopped breathing anywhere from 20-30 times an hour. I again had never been more thankful for trusting my gut and getting that Owlet sock. He wore that sock religiously after that. I immediately scheduled an appointment with Dr. Taylor, a plastic surgeon at Children’s Hospital so he could look at Owen’s tongue and tell us what would be the best thing to do for him.

I made up my mind that even though Owen was so little I was going to push for him to have the reduction surgery on his tongue. Everything I was googling and reading was saying that its better to wait as long as you can but I wasn’t willing to. I wasn’t willing to put his life at risk. I had no control over whether he stopped breathing or not in his sleep but I did have control over whether or not he got this surgery. I made up my mind that no matter what the surgeon said I was going to push for it. Surprisingly I didn’t have to. When we met with the surgeon he took one look at Owen and said he absolutely needed it. I was a little caught off guard. I came prepared having to fight and advocate for him to get this surgery. The finality of him saying he needed it stunned me a little bit. He then started to talk about the procedure and what recovery would look like. I’m not sure why but I was not prepared for Owen to have to be intubated. Looking back on it now I don’t know why I never thought of that. The thought of Owen being sedated and intubated really hurt my heart. I know what that looks like on adults. I don’t want to see what my child looks like in that state. We were told he would be intubated anywhere from 5-7 days and to prepare to possibly be in the hospital for two weeks. We were told that the surgery would probably be harder on us than him. We scheduled his appointment that day. In the mean time he needed to see cardiology to make sure his heart was strong enough to handle a major surgery like that. Owen would be 7 weeks come surgery time. I was a mess. I was hysterical. The surgery I planned to advocate so hard for for my son was going to happen and I was losing it. I knew that no matter what I googled, no matter how hard I tried to prepare myself for that day, it wouldn’t matter. Nothing would prepare me for that day. Nothing can prepare any parent for seeing their child like that. It was at this point in time that I thought maybe I am starting to realize what its like to struggle to breath…

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