The gift of laryngomalacia

Many of you know that my sweet Logan was diagnosed with a condition called Laryngomalacia when he was 2 months old. I feel compelled to do some late night writing on this topic and am just getting that feeling that someone needs to hear this story.

First of all, according to The Children’s Hospital of Philadelphia, the definition of laryngomalacia is:

“a congenital softening of the tissues of the larynx (voice box) above the vocal cords. This is the most common cause of noisy breathing in infancy. The laryngeal structure is malformed and floppy, causing the tissues to fall over the airway opening and partially block it.”

Some of the symptoms of LM (laryngomalacia) are noisy breathing, choking while eating, sleep apnea, and acid reflux.

Our story:

So, before Logan was born, anyone who knows me knows that I did a lot of reading. Reading about feeding your baby, reading about baby sleeping habits, reading about french babies and why they are so awesome, reading about being a kick-butt mom, etc. You name it, I read it. One thing I read over and over was something to the effect of: “Babies make funny noises, so don’t freak out over every little noise. It’s just how they are.”

I thought to myself, Ok, Becca, You are a worrier. So, remember this. Don’t freak out about baby noises. 

Fast forward a few months and our little bundle of joy arrived and everything I read went out the window. Except for the part about babies making funny noises. I told myself I would not worry over every noise Logan made.

Friends would hold Logan and they would start to comment on his breathing. I distinctly remember my best friend holding Logan close to her ear and saying “Hmmm, that’s interesting.” Nobody wanted to worry me, but they were clear that it wasn’t exactly normal. Well, I still went about 2 months without worrying about it, but when one more friend commented that his breathing was strange, I started to let that tingle of worry start to take over. I became a google maniac. I would send videos of Logan to out of town friends just hoping that someone would say, “Yah, my baby sounds like that sometimes!” But, no one did. This is how my little sweetie sounded at 2 months old:

https://m.youtube.com/watch?v=vwgZg7T6muQ&feature=youtube_gdata_player

After a few doctor’s visits, we decided to take Logan to an ENT. We had a FABULOUS doctor who was a pediatric ENT who specialized in babies with LM! He basically told us that he was positive Logan had LM based on his symptoms but that he didn’t know how severe it was. Basically, most babies with LM are perfectly fine. But a very small percentage require surgery. The doctor did a small scope in the office and let me tell you, watching Logan go through that was worse than those stupid vaccines! But, it was quick. The doctor gave us bad news that Logan’s LM was moderate to severe and that he would most likely need surgery. Talk about a blow to the chest! Two new parents who love this little being more than anything in the world get told their precious 2 month old might need surgery?! If you have ever had a baby with even the slightest thing wrong with him/her, you know how we felt.

We had to rule out 2 things in order to find out if surgery was necessary or not. We had to make sure Logan didn’t have sleep apnea, and we had to make sure he wasn’t aspirating his milk into his lungs. We did the sleep study, and it was honestly such a hard night. However, I remember begging God for 2 things. 1) That Logan wouldn’t be scared and would sleep normally 2) That I would be able to get some sleep. The Lord answered both requests and I remember truly feeling his presence that night.

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Next, we did a swallow study and we were told on the spot that Logan was not aspirating! This was such a praise! I truly thought he was because he choked while nursing constantly. And badly. If he was aspirating, I would have had to stop breastfeeding and go to bottle feeding and that would have broken my heart. I know it is so minor in the grand scheme of things, but the Lord was so good to let me have that gift. We also received Logan’s sleep study results and he had minor sleep apnea, but nothing to be concerned about. Our doctor canceled our surgery (he had already scheduled it because he was that sure that Logan would need it) and told us that we needed to keep an eye on the LM, but that we should just be fine waiting for Logan to outgrow it!

Unfortunately, the worry did not stop for me. I can honestly say the worry over Logan’s LM was all-consuming. I can’t even tell you how many videos I took of him sleeping without his shirt on so I could see if his belly was retracting or not. Every time I fed him, if he choked, I worried he might be starting to aspirate.

It. Was. Awful.

I joined a group for moms coping with babies with LM. That was the worst possible thing I could do. All of those moms had babies with severe LM and serious issues. And every time they posted something, I worried Logan would go through the same thing.

Finally, I thought to myself one day. . . Ok, Logan is doing amazing. You are missing out on so much because you are so worried about him and his breathing. You have the very best ENT possible in our area and he is not concerned about Logan a bit. Just. Stop. 

I took myself out of that FB group, and I stopped googling. And things got so much better.

I was in the nursing room one Sunday morning and my pastor’s wife was in there as well nursing her baby. I was discouraged. I hadn’t been able to sit through a whole service in a few months and now Logan was going through a terrible nursing strike and it was a miracle if I could get him to nurse. It was a rough morning. We were chatting about Logan’s health issues and my pastor’s wife said,

“Logan’s LM is God’s gift to you. A very precious gift to you.”

What? A gift? I never thought about it that way. Suddenly, that comment changed the way I viewed what we had been through. God was drawing me to Him. And He had been by my side every step of the way. The thing is, we had a follow up when Logan was almost 4 months old. Logan’s LM was still moderate-severe. Our doctor was absolutely amazed at how well Logan was handing it. Our little guy couldn’t even breathe properly, but he was such a trooper. He never let it bother him and he handled it perfectly. Grace. Beautiful, overflowing grace. God had given us an amazing, caring doctor who even told us he was praying for us. He allowed Logan to not have severe sleep apnea and to not be aspirating and to NOT HAVE SURGERY! He was and is so gracious to us.

Today, Logan is 9 months old. He hasn’t outgrown the LM, but it is barely noticeable unless he gets really worked up. Our doctor told us that we don’t have to come back for any more follow-ups.

And you know what, I look back and I thank God. 

He is so good. Praise be to Him. Praise be to the One who gives us gifts. Even when they look like a baby with larynogmalacia.

Here’s to a day full of joy,

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3 thoughts on “The gift of laryngomalacia

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