Tuesday, June 7, 2011

Do Not Let Your Heart Be Troubled

Toward the end of the movie, Four Christmases, Reese Witherspoon's character Kate tells her boyfriend, Brad, played by Vince Vaughn, that she has taken a pregnancy test earlier in the day. This causes him to completely freak out:

Kate: Relax, Brad.  It was negative.  I'm not pregnant.

Brad: Well, jeez, why don't you just hit with that right from the start instead of making me take laps around the anxiety pool?

That was today-- endless laps around the anxiety pool--for 6 1/2 hours.

Thank you, Miss Kelly for my extra courage from Mr. Lion.

Today was about six and a half hours of appointments, labs, x rays and a roller coaster of emotions.

Part of the x-rays involved screening for atlantoaxial instability to see if there is any instability in Joey's cervical vertebrae.

He had both arms stuck to get enough blood to provide for all the tests.  For some reason the right arm just tapped out and then they had to poke through his beautiful chubby left arm to try and get more blood.

Midway through the day we got word that our surgeon, Dr. Bove, had an opening if we wanted to go and meet him.  We jumped at the chance and we are so grateful for the opportunity.  We learned from him that there is a very slight chance that due to where Joey's hole is, there is a very small risk of the "wire" that communicates between the heart and the brain could possibly be accidentally cut during surgery.  He said this is very rare, but that if it happens, it would mean that Joey would be on a pacemaker for life.  During this meeting I realized that if this were to happen, then we are in the right place to get Joey the right care for his needs.  Dr. Bove was incredible.  Before we left I asked him for a favor-- could I take his picture with Joey?  He said yes and asked in return if we would let him know every year how Joey was doing.  A plan was in place.

After this meeting we headed back to the Coordinated Care and prepared for our final visits of the day-- Anesthesia and labs.  Once we got back we were told that the attending physician wanted to see us again.  I don't know why, by now, I'm not ready for the unexpected.  I should be--it's what always happens.  Aspiration?  Check.  Congenital nystagmus.  Been there, done that.  Torticolis?  Plagiocephaly?  Can't pronounce them, but no problem!  Open heart surgery?  Almost done.

This we weren't expecting.  The doctor sat down and said, "They found an enlarged area on Joey's skull when they took the x-ray."  Huh?  Didn't see that one coming.  In case it was his pituitary gland they rushed us to get the lab work done.  If it was a thyroid problem the doctor told us that surgery would be postponed for a few weeks.  A few weeks?  How would we ever make it through this again?

We got the blood drawn and returned.  They told us that it looked like his thyroid might be slightly elevated, but that they would call us to let us know this evening whether or not surgery would still be on tomorrow.

We finally got the call at about 5:45pm.  We were told that his thyroid was slightly elevated, but that they could not figure out what the enlarged area on the skull was and that we would now also be followed by endocrinology.  Despite those issues, surgery is still on!!!

Last feeding for Joey is at 5:00 am.  We head to anesthesia at 10:30 am.  I'm not sure what it is going to be like to hand my precious baby over.  I'm not sure I'm ready for tomorrow.  We were told what to expect tomorrow-- that he would be on a ventilator.  That he would be puffy.  That his chest incision would probably be closed, but sometimes has to be left open.  As we get ready for bed and try to sleep, I just keep playing Sugarland's song, "Joey" over and over in my head....

joey i'm so sorry
oh, can you hear me?
joey, i'm so sorry

would i know this hurt
would i feel this pain
do you know that with all i have left in my very last breath
i will call your name

joey, i'm so sorry
oh can you hear me?
joey, i'm so sorry

were you sad, were you scared, did you whisper a prayer to be free
was it quiet and cold, was it light or too dark to see
and did you reach for me

joey, i'm so sorry
oh can you hear me?
joey, i'm so sorry
Joseph David-- be strong little man.  Don't be afraid-- I pray the words that your great-great aunt Doris's daughter, Judy, sent to us:

John 14:27

Peace I leave with you; my peace I give you. I do not give to you as the world gives. Do not let your hearts be troubled and do not be afraid.

Joey-- Mommy and Daddy will be here every step of the way-- do not let your heart be troubled.  Soon your broken heart will be healed.


  1. You all will be in my thoughts and prayers all day today... keep us posted when you can. <3

  2. What a day. Thinking and praying all day for Joey, you guys and doctors. It sounds like you are in good hands.

  3. Praying for you guys! May God put his hands on all the Drs and staff to guide them & mend Joeys heart

  4. I am thinking of you and praying for you.

  5. Oh my goodness. Talk about a full day for you and Mr. Joey. Lots of prayers headed your way. Keep us posted when possible.

  6. What a whirlwind. Prayers are on the way for little Joey and for you. Handing your baby over is a moment you'll never forget, but I pray that you feel the peace I felt at that moment; knowing that I wasn't letting her go, but that she was in God's hands too.

  7. Praying for you guys and thinking about you! I know how it feels to hand your precious little person over - he will be in good hands and I know God is watching over him.


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