Sunday, September 16, 2012


That right there is a word that could describe two things currently in my house.  (um, actually three, but that's tomorrow's post):

Exhibit A:  This guy.

Exhibit B:  This creepy goo filled bottle.

We had Parker's swallow study done Thursday morning, which meant a trip back to Egleston.  We are coming up soon on a month since we left there, and I can say with 100% certainty that I haven't missed it. The people, yes. The building?  The gut-grabbing fear?  THE PARKING DECK?  No.

The study itself was quite fascinating-- they put Parker in a little purple roller-coaster-looking chair  and rolled an x-ray machine right up to his right side. I stood next to him and fed him barium through one of his bottles from home.  The whole thing took 5 minutes, and I heard some mysterious terms being thrown around before our lovely SLP Kristin gave me the details.

(I'm going to screw this up. My dearest friend Ali, forgive me and correct me.  Penny, same thing and we are sorry that we missed you!)

Apparently, during such a procedure, they are watching how the baby swallows. They want to be sure that the baby is able to swallow effectively and efficiently.  There are two red flags that can show up-- "penetrations" and "aspirations".  When a  normal person swallows, his or her airway is protected by approximately fifty-eleven moving parts that keep food/liquid out and shove it towards the esophagus.  Penetrations happen when some liquid is allowed into the airway, stopping before reaching the vocal cords before being pulled back out.  Aspirations occur when the liquids actually go past the vocal cords, which means they are likely to enter the lungs.  Coughing.  Choking.  Pneumonia.  Bad news.

Parker was given "thin" barium first, and out of 30 swallows, several had penetrations (no aspirations).  Next, he was given a thicker barium, and out of 30 swallows with that he had significantly fewer and much shallower penetrations.

**I got to watch the video of this business happening, and let me just say it is FASCINATING to watch someone swallow. (some brave soul has put his swallow study on YouTube so you can see what I mean)  It was another one of those moments where I was struck by the wonder of our bodies.  So many tiny little systems that have to fire just right.**

It was determined that, though the penetrations with thin liquid were not too bad, it would be wise to move to thickened liquids for a few weeks before a repeat study in 6-8 weeks.  The underlying problem comes from Parker being intubated for so long, keeping a tube between his vocal cords and causing some irritation and damage.  They will heal up just fine, but the best thing to do is to exercise them. How?  Swallowing.

Parker eats with gusto, now that he eats.  Swallowing should not be a problem.  How do I know this?  HE GAINED AN ENTIRE POUND IN 8 DAYS.  Yep-- pediatrician visit on Friday showed "significant gain" and all thoughts of the NG tube are now behind us. The swallow study shows us he is eating safely, and the scale shows us he is eating well.  Hooray!

What is NOT hooray is this thickening business.  They gave me some free samples of "SimplyThick" gel to put in his milk, which comes in at a lovely price of $1.50 PER BOTTLE.  Times 6 bottles a day.  Times 30 days a month.  You do the math. What's that?  You want me to do it for you? GLADLY.  That's $270 a month, friends.  I'll do it if I have to, but not if there's an easier way!

 "The Thickening Gel You Can't Taste!" 
Calling shenanigans on that.  I tried it.

My alternative is to use rice cereal, which rings up a total of $0.09 per bottle.  That's $16 a month.  Yes please.  Not to mention, the SimplyThick just absolutely creeps me out.  Pouring it into the milk leaves this clear goopy pile of spaghetti looking stuff that floats in the milk, and even if you shake it for 10 minutes it never fully incorporates.  The rice cereal does just fine, so long as you use it immediately and don't let it sit for too long.  Can do.  I shall use your free samples and then buh-bye, creepy goo.


The happy news is that Parker is largely unfazed thus far.  He will guzzle the thickened milk just as happily as he was the thin.  I did back off on the thickening a bit today due to his poor little belly's inability to move that stuff through his system, and I will check with the pediatrician next week (at our 4 month well check. FOUR MONTHS!) about maybe mixing some juice in once a day to help shuffle things along.  The joys of parenting.

We are pleased with our 16 pound Chunk of Love's progress, and we are pleased that the NG tube seems to be but a distant memory. **knocking on all available wooden surfaces**

We did get to go back up to the NICU on Thursday and see some of our favorites (though many of our favorites were missing, too).  Parker was quite happy to see all his lady friends again and gave them some of his famous grins.  Mike and I were so excited to show him off and say, "LOOK!  No tubes!"  All the doctors and nurses were overjoyed to see him looking so well.

We were overjoyed to give them all lots of hugs and then get the heck out of there, escaping for lunch at Doc Chey's, one of our favorite hospital haunts in Decatur.

This picture tickles me.  Love my boys!


  1. It was another one of those moments where I was struck by the wonder of our bodies

    And, for me, by the breathtakingly world-changing medical technology we all take for granted nowadays!

  2. Way to go, chunky boy!! Sad I missed your visit. Have loved keeping up with all of his triumphs on your blog. Much love!
    Nurse Lauren

  3. Love good news. Opa.

  4. All 3 of your boys are looking good! Know they ALL have captured your heart and YOU theirs in return! Be happy, Knoll family!

  5. We have to use Simply Thick for Jacob's bottles, and it is covered by insurance and his medicaid. It isn't that bad and it DOES completely incorporate if mixed with warm milk, no lumps or clumps. The prices you have are a lot more than ordering directly from the Simply Thick website which offers the packets at $0.22/pkt if you buy in bulk. Still pricey for an entire month, but if the rice cereal doesn't work out I don't want you to feel overwhelmed by thought of dishing out almost $300 a month! Here is their website and pricing guide:

    What awesome weight gain for Parker! He is looking so great! Happy and Healthy! Praise God! I can't express how happy I am for you all. He is doing amazingly well!


    I'm a NICU nurse that has followed sweet Parker's blog for a while. Saw this just today and thought you should know about concerns about the use of Simply Thick in infants. I know you said you are only using the samples, but wanted to let you know!

  7. I'm so glad he's gaining weight and can say bye-bye to the feeding tube!

    FYI, I just saw this posted on the BOH site about Simply Thick :-( But then again, I know of tons of CDH babies who have needed to use it to eat and had no problems.

  8. Hi- I'm a mama of a special needs kiddo and have been following you guys since the beginning. On Facebook there is a Medical Supply Exchange and Simply Think frequently comes up Free for Shipping. You can email me if you want more info