Ok, I guess it has to start somewhere.

Well, I’m pretty sure that LP has something called laryngomalacia.  It is basically medical gobbledy-gook speak for when a person’s airways are floppier than usual.  There are different reasons for it, but in LP’s case, it is probably caused by his hypotonia (another gobbledy-gook term for low muscle tone).  It hear from other moms that there is a higher likelihood of also having something called a laryngeal cleft, which as far as I can tell is a congenital issue with the way that part of the trachea forms that causes food or fluid to pass into the airway.

What does this mean?  Could be nothing.  Could be a fairly big something.  A few weeks ago, LP got a cold from Chipmunk (aka the Germ Mafia) and got super congested.  Ever since then he has been really stuttery and snorty, especially when he is excited or working hard at something.  It mostly goes away when he is on his stomach or super relaxed, which is because being supine puts weight on his throat and that makes it worse.  For a while I thought the snorting was congestion, but not only is it not going away, but, you’d think if it were truly congestion, sleeping on his belly would make it all worse, not better.  Apparently a good number of kids with laryngomalacia outgrow it, just like they outgrow (some of) the hypotonia.  For some though, it is more serious and results in slower growth and difficulties keeping up blood oxygen levels.

So… I’m worried.  In addition to the laryngomalacia, LP also has random moments where his eyes water inexplicably, and I just learned that this can be a sign of aspiration (inhaling fluids into your lungs).  This can lead to scarring, infections, pneumonia.  Yeah, awesome.

I can ask for a swallow study.  They cover me up in all sorts of protective lead suits and feed LP a bunch of different fluids containing barium (a heavy metal not found in nature) that have been thickened to varying degrees with goodness knows what, while they x-ray his body and look to see if any fluid is going into his lungs.  Yeah, even more awesome.

Here are my issues with this:

1) Totally don’t want to do that to my son.  Barium, x-rays, strange thickened liquids… boo.

2) How does anyone know that the way a baby breastfeeds is the same way he eats from a bottle?  Might this not be a little apples v. oranges?

3) I’m scared that he really is aspirating.  The “treatment” for kids who aspirate is to thicken their food.  This means I’d have to pump, thicken the breastmilk, and feed it to LP in a bottle.  Double boo.

The thing about bottle feeding thickened breastmilk is problematic to me for many reasons.  First, there is a lot to suggest that breastfeeding (from the boob) is important to kids who can do it, because it is integral to helping the mouth, hard palate, and sinuses form correctly, which in turn has big implications for his dental health and linguistic abilities.  Given that kiddos with DS are already dealing with issues of poorly developed palates and sinuses, this is clearly important for LP.  Next, is what the heck do they use to thicken the liquids?  I’m just not all that comfortable with feeding my baby a bunch of thickener.  If it is between that and eventual lung scarring and pneumonia, then clearly it may be the lesser evil, but still.  Not what I want.

We are going to our pediatrician this week, so I’ll have to bring all this up.  I’m 100% sure on the laryngomalacia.  I’m getting that sinking pit of my stomach feeling the more I learn about aspiration, and that makes me think that it is pretty likely.  The potential decision between breastfeeding and eventual pneumonia isn’t sounding awesome, but one thing at a time, I suppose.

We are also wondering, because of all this snorting and snoring at night, whether LP has sleep apnea or not.  I’ve never really known anything about sleep apnea, but there are pretty serious implications for future growth, learning, and brain development.  So we will probably have a sleep study some time in the future.  Hooking your baby up to a bunch of electrodes while you try to get him to sleep overnight in a hospital sounds like a ton of fun to me.  I can’t wait!

I don’t mean to be too negative.  I am very, very aware that if this is the extent of LP’s health issues, we will be very lucky.  Even if he does turn out to have something severe going on, that is ok too, he is my kid and we’ll deal with it.  I guess I’d just been living in a very convenient bubble, hoping there would be no health issues at all.  I knew that bubble would eventually pop, but I’m still not psyched about it.

Phew.  Even my voracious appetite for obsessive internet research has met its match.  I just can’t keep up with all this crap.  Oh, and for those of you wondering, we are going to pediatric cardiology and ophthalmology next week.  To be continued.

4 Comments on “Ok, I guess it has to start somewhere.”

  1. Jess says:

    Can he be seen by speech pathology first? Maybe they could watch him breast feed and weigh in on if it looks like he aspirated and if a barium swallow is suggested still?
    Is it possible to breast feed him while he’s in a more upright position? That should help too.

    Be thinking of you and all the upcoming appointments. Let me know if you want any help with all the gobbledy-gook medical terminology.

  2. AK says:

    Thinking of you every day and hoping for good outcomes with next weeks’ appointments. A believer in the advantages of breast feeding, it wasn’t an option for me with adopted children. Both bottle fed, they grew up with great dental health and linguistic abilities. One of them had a sleep-deprived EKG, and that’s not as bad as it sounds. LP will sleep beautifully while you have all the anxiety. Don’t learn so much that you drive yourself crazy. I wish we could lift some of your burden. We love you.

  3. Jennifer says:

    As Jess suggested trying to feed in more upright position can help with aspiration precautions. Another thought might be to pump or express your foremilk , which has less fat content and more watery and give him the hindmilk which is a bit thicker and creamier naturally. You lose some of the lactose but a possible option. I, myself did this for E while in the NICU. And if he happens to be getting tired from feeding quick, you will be sure he is getting some fat content with the hindmilk. Thinking of you and the family.

  4. ji says:

    Thanks to all of you, exactly what I needed to hear. I’ve been wondering about the foremilk/hindmilk thing as well. Will ask about speech pathology. There are some great bonuses to having friends who are nurses!

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