Just keep swimming.

When Lucy was born, we thought that was the end of our medical education. Between hyperprolactinema and single umbilical artery, we were well educated in infertility and high risk pregnancy business. We didn't know what a coloboma was and we didn't think we would need to. But alas, Lucy came with two beautiful eyes- one looking a bit unusual and thus began our higher education into all things weird pediatric!

Now don't get me wrong- Lucy has a coloboma that causes her NO TROUBLE! We don't really have any idea what her vision will grow into, but these poor babies share genetics with me and my eyesight kinda blows. So eye exams and the potential for glasses/ contacts/ etc doesn't surprise us or worry us. It is what it is.

You know what does worry me though? My nearly 2 month might stop breathing, could choke and turn blue, might require surgery. I know- where did that come from?! It
hit us out of nowhere too.

A week ago, I thought Colt had normal newborn congestion. In fact, I've been told by medical types that he sounds fine for a c section baby. I never worried. As a second time mom, I rarely worried that he would stop breathing while I was asleep. So please understand that no one in our house expected this week to happen as it has.

Last Friday, we celebrated my father-in-law's 60th birthday. It was a great party and we visited with many friends. A lot of people were able to finally meet Colt. So Monday morning when Colt woke up a little wheezy and chest rattling, I thought he picked up a party cold. No big deal, right?

In my "be prepared" momma wisdom, I called the pediatrician. My question "how will I know the difference between his normal newborn congestion and a cold- and can I prevent it from spreading to his sister?". Their response "I can hear him through the phone. We need to check him out immediately."

I still didn't think much of it. Ok, he's noisy. Always has been. So I took Colt in to see Dr Miller while my mom hung out with Lucy. As the nurse got Colt's stats, she asked plenty of questions about the squeak/ noise/ problem. She wanted to get the oxygen thingy (I can say the word but not spell)... Colt's oxygen was 95. I know from colds with Lucy that 95 isn't ideal, but isn't serious (doesn't require supplemental oxygen). So I waited with my agitated boy to see Dr M. Finally, she came in with a barrage of questions. I still feel incredibly dumb because I don't really know how best to answer some of these. "He doesn't always make so much noise. I guess it's getting worse. He is a spitter and chokes/ gags when my milk lets down (or so I thought). Of course he'a louder when agitated, so am I."

After the questions and a quick exam, she just said "Yeah, he's too loud." Apparently the noise is called infantile inspiratory stridor. You can google that and find some great info. It's fairly common and well described online. The stridor isn't the problem, the cause of the stridor is. Dr M thought Colt might have a mild form of laryngomalachia. Say that five times fast.

A mild case for the following reasons: my son is huge! Talk about an effective eater. He was 12lbs at 7 weeks. (No need to worry about milk supply issues this time!) So, yeah- that's what makes this seem mild. Regardless, it was necessary to confirm the diagnosis and so Dr M called Children's hospital for an immediate appointment with the ENT, Dr W.

This all happened within a few minutes. I sent Jason a text message, not knowing anywhere near enough, telling him that Colt has Stridor and needs to go to Children's ASAP. Cool. (Sarcasm.)

ASAP was actually Tuesday afternoon. Jason took a few hours off work to go with me. We didn't know what to expect except a flexible scope. And that's what happened. After answering all of the same questions from Monday's pedi visit, Colt had to be held tightly against me while a camera was stuck down his nose into his airways. Again, cool. (Also again, sarcasm.)

Laryngomalachia occurs on a continuum. (Here's the newest lesson in my pediatric medical degree.) The mild cases are most common- like 99% kinda common. A noisy baby who eats and gains weight appropriately, may have some GERD/ acid reflux issues, and has visual vocal chords as seen in a scope.

Severe laryngomalachia is related to failure to thrive- baby won't eat, can't gain weight, spits up, gags, chokes, coughs, stops breathing, turns blue and has barely visual vocal chords.

Colt is symptomatically mild. However, the scope showed that he is anatomically severe. Even I was aware that something looked wrong during the scope. It was nearly impossible to see his vocal chords when he took a breath in. And my poor boy was screaming at the top of his lungs, so clearly he was moving air vigorously.

Since Colt is night and day, clinically and experientially, we were given a choice. Dr W asked how scared we were about this. I didn't know until the day before that I needed to be scared, so not much. Did we see a problem with his eating/ breathing/ sleeping? Maybe he's a bit more fussy than Lucy was, but I don't compare them much. I assumed a bit more fussy was still in the normal fussy baby range. I don't know!

Our plan: Colt is now on the highest, most aggressive medication for GERD/ acid reflux. Often the acid in spit up splashes onto a baby's vocal box and causes swelling- not an issue if your voice box has an adequate opening. Huge issue is the dang thing closes up on its own anyway! So, we are praying that the Prevacid will decrease some of the voice box swelling. If it does, we will continue with this plan as long as possible. Laryngomalachia is a condition that occurs predominately in children. It gets worse in the first 6-8 months of life, but is almost always gone by age 2. As long as Colt is able to breath and eat adequately, he will just be a noisy boy for a while.

However, if the Prevacid doesn't work- or if we report worsening symptoms- my baby will need a pretty invasive throat surgery to remove this extra tissue in his larynx. The more we listen, watch and assess Colt's eating and breathing, I think Jason and I are both starting to believe surgery might be the best option. Ridiculous that Monday morning I thought my babies were going to have a cold- maybe get an ear infection- maybe even RSV. I was so nervous about having two sick babies. I never imagined that we would be visiting Children's twice this week (we also had x rays performed this morning to rule out a tumor pressing against Colt's lungs or airways/ any other extra or floppy tissue issues. No additional issues. Praise God!)

I didn't know these things existed until I had children. I didn't know I could be so frightened and strong simultaneously until my babies required it of me. This has taken a huge toll on all 4 of us- between juggling appointments, emotions, fears and judgments. We are all literally crying to sleep at night. I know there have been many people praying for us over the past few weeks/ months/ years. Please keep those coming. We have made it through a lot by God's grace and we are confident this is yet another opportunity to demonstrate the goodness of the God who sustains us!