Friday, July 20, 2012

*Now* what?!

Bonnie is still doing well, y'all, but now we've got something completely out of left field to worry about.  Her initial newborn metabolic screen (which they do on all babies--tests for a variety of diseases) came back abnormal.  I knew about that one because they had mentioned it in passing one day in rounds.  Didn't think much about it because there are a billion obscure diseases that can show up, and nobody seemed worried about it at the time.  I didn't even ask which test came back abnormal.  Well.  Anytime a metabolic screen turns up something, they send a second one to confirm the results.  Bonnie's second test was sent about a week and a half ago.  

We found out today that this one was abnormal too.  It came back positive--for the second time--for the marker for cystic fibrosis.  All I'm going to say right now about cystic fibrosis is that it's a really scary disease.  In the grand scheme of things, I'm probably more freaked out by the possibility of CF than I was with the diaphragmatic hernia.  Maybe that's crazy. Whatever.  *Anyway*, Bonnie had an elevated marker for CF, (which is called IRT--immunoreactive trypsinogen).  This doesn't mean that she has the disease, only that more testing is needed to definitively rule it in or out.  Various folks have assured me that it's quite likely she doesn't have it (no symptoms, for one thing), and that there are a variety of things that can cause an elevated IRT.  One of the main ones is stress, the type that might occur when you are a brand new baby with a diaphragmatic hernia.

Sooo Bonnie will be tested for cystic fibrosis.  The initial test will be a sweat test, and if that's inconclusive they'll do some genetics labwork.  The sweat test involves some kind of complicated procedure, and there's only one person in the hospital who can do it, and they only do it on Tuesdays.  Today is Friday, so we get to wait four days for any sort of information. 

We would really *really* appreciate your prayers that Bonnie doesn't have cystic fibrosis.  By the grace of God, she's made it through the scary phase of her CDH.  Not sure we can handle another life-threatening diagnosis.

Here are some fun pictures to cheer us all up:

And then we have Bonnie and Jonathan. I was out of the room when these were taken (pumping, of course), and I'm so sad that I missed out on this smile-fest!  So glad our nurse was able to capture it on film, though.


  1. Will be covering you in prayers. So happy for how well she is doing and I know God has got this under control too!!

    Love from Oregon - and Finley is cheering Bonnie on.

  2. Praying for you all! I would think she would have had symptoms by now if she had that! Stay strong!!

  3. Leslie, Samuel was tested for CF as well - and I was freaked out by it too! The sweat chloride test is very particular but not invasive so hopefully she will sail through that and you can rest easy. Hmm. Rest easy. Does that actually happen?!?!

    Sending prayers to you.
    Mama to Samuel, lcdh, Feb1/11