Little Loves

Source:  Little Loves    Tag:  cdh orthopedics
You know what's lame?  When you type up an entire blog post Thursday and then forget to hit post.  Here we are, 4 days later.  Whatevs.  So let's do the time warp and pretend it's Thursday night. :-)

Happy Valentine's Day from the Knolls!
Cutest Valentines I could ask for!!!

We had a wonderful day.  Full of candy and kisses and hugs and big huge thank yous to our God.

Valentine's Gifts for Jeremiah's teachers. "Hugs and Kisses from Your Misters and Misses."
If overzealous room mom becomes a viable career path, THAT'S the day my ship will come in!  
 Is this not the most adorable thing you've ever seen?  Jeremiah got it from a friend at preschool.  I think his mom will be my first employee when Room Moms, Inc. takes off.  SO CUTE.

And who's that foxy guy, making my dinner for a change?  He stepped it up big time with some roasted chicken and mushrooms in a red wine reduction.  Love him so.

We visited Parker's surgeon, Dr. Parker, this morning, partly because he has us on a schedule of visiting every 6 months while getting chest x rays for him to review every 3 months.  Our visit today was focused on several things:

1) Any signs of reherniation
2)  Progress of possible CCAM on right lung
3)  Thoughts on having ultrasound of ECMO site to look for clotting (the veins on the right side of Parker's face are quite pronounced blue lines running up and down his cheeks.  This is somewhat to be expected, as he has no functioning jugular and the other blood vessels have to compensate.  Any other CDH mamas notice this on their ECMO babies?)
4) Recommendations for follow ups with cardiology and pulmonology

And here are our results:

1) "His chest looks perfect."  No signs of reherniation.  Delightful full lungs.  A perfectly smooth and intact diaphragm.  There was a possible-maybe-probably-not hiatal hernia (stomach moving up into the esophagus space) but he doesn't feel it's anything to worry about until Parker starts exhibiting signs of reflux (of which he has NONE, even after we recently discontinued his Prevacid.  He is now completely medicine free!)
2)  *hold onto your hat* The mysterious mass on his lung that has been there since birth is NOT VISIBLE on his x ray.  It just up and disappeared. Can't tell you what a relief that is to us.  Still, he scheduled us for a CAT scan in June to check blood flow in the lungs.  That will tell us definitively if there is anything there that will need to be surgically removed.  But he doesn't think so at this time.
3) He noted that the blue lines on Parker's face are more pronounced, but nothing out of the ordinary.  He gave us some signs to look for of what a dangerous clotting situation would look like, but again, he doesn't see any cause to worry about that now
4)  Abby: "So we need to schedule a follow up with the cardiologist?"
Dr. P:  "Why?  He has a structurally normal heart."
Abby:  " Pulmonologist?"
Dr. P:  "He doesn't have any signs of lung disease."
Abby:  "But... but... So we don't need to see any specialists right now?"
Dr. P:  "Normal pediatric care is all you need."


The bottom line is this:  until Parker exhibits signs that he needs to see a specialist, we aren't going to see any specialists. We have one more follow up with the GI in May, and we'll continue to see the developmental clinic and the surgeon for the first 5 years.

But that's it.  Going into this diagnosis, I knew that the babies who survive wind up somewhere on a spectrum from highly-medically-dependent to downright normal.
I never imagined, during those dark days, that we would be on the "normal" side.
No tubes.  No medication.  No oxygen.

Just normal.

It goes without saying that we had some donuts on the way home, and it goes without saying that we are grateful beyond words for the news we got today.  Best Valentine's Day present ever!

Sadly, as soon as you get comfortable in your normal status,  you get hit square in the face by the death of a CDH baby who had made it out of the woods.  Little Grace, who was just 2, died this weekend from complications of a reherniation.  It is unimaginable to think of those parents, who got through the worst of it and probably felt the same way I do now-- the worst is over, we'll just keep an eye on things but she'll be fine.  And then she's gone.  I can't wrap my head around it.

If you haven't yet, PLEASE sign the White House petition to light the White House for CDH on April 19th.  Yes, it requires an email address to sign in, but for the love of pete.  Something has to be done.  CDH kills 72 babies A DAY.  Lighting the White House means awareness.  Awareness means research.  Research means babies that come home and don't die when they are 2 years old.

Click HERE to sign!