the recap

I had intended to post again before now.  This is REALLY long since I’m catching up.  I thought about splitting it up but decided that was too much trouble for me.

To take up where I left off… we had a nice trip to the Smokys with the kids.  It was quite relaxing and good for the soul after getting the news that we did.  We just decided to take it slow and enjoy creation and our children.

We told the kids about Baby G (who we now know for sure is Gabriel Elliott).  We explained to them that he has a hole in his belly and that he is very sick and may not make it.  Dylan, 4 and a bit too interested in death after last year’s events, then says “You mean he will die?”  I said “Yes, buddy.”  Then he went on to talk about his pizza and that was the end of that.  For the night, anyway.  I knew that Chloe needed to let it settle in for a little while and formulate some questions.

We were able to get a good family picture in the park thanks to a kind stranger.  After which I proceeded to bawl because I was thinking that I would probably never see Gabe’s face in a family picture.  I also broke down when I heard the kids talking about how when we came back to the Smokys that all 4 seats at the kid table would be full.  Again I was overcome with “No!  I’m not doing this again!  I’m not going to bury another child!  Don’t ask me to do that again!”

After we came home I had a bit of a scare.  I woke up one morning and hadn’t felt Gabriel move since the night before.  So my doctor’s office squeezed me in for an ultrasound.  She checked him out and he still had a heartbeat!  She asked us if we’d like to look around since we were there.  We said yes.  She showed us the abdominal defect.  She also showed us what she could of his back, which we learned has a pretty severe curve.  She is also concerned about a heart defect because she can’t see all of the structures.  She took a few pictures of his face for us since he was in a better position to get it.  We have a really neat 3D profile of him now.  (we also got a picture of the “boy parts”)  As we were leaving the tech said that any time we want to see the little guy to call and she’ll work us in.  That was very comforting.  I bet we’ll take her up on it.

So since the bomb was dropped we have decided we will carry to term – or as long as he lasts.  I believe that life begins at conception and I (and Brian) do not feel that we should say when he dies.  Only God knows when and how that should happen.  It blew a lot of minds at work, so I’ve heard.  No one has really asked me about it.  They haven’t avoided me but I can tell that some of them just don’t know what to say.  And who does, really?  I hope that some good, deep conversations can come from this.

Upon my return to work one of my sweet friends asked if she could share our news with her Bible study so they could pray with us.  I told her absolutely!  The next day she came in with the name of a fetal surgeon at the Children’s Hospital of Philadelphia.  God is amazing!  One of the gals is good friends with her sister so they decided to contact her about me.  She sent her cell phone # and said she would be happy to talk with us.  SO… we have an appointment on July 30th to have an evaluation done there.  They have a Fetal Diagnosis and Treatment Center that is top in the nation.  We feel that we can’t get any worse news than we have already so it’s worth going to see someone who’s encountered this more than twice in a career.  (Not that we in any way have doubts about my doctor – she is the bomb and I will never leave her!)  It was nice to tell the lady on the phone that we received a diagnosis of Limb-body wall complex and she didn’t say “Huh?”  I look forward to any insight they can give us while we’re there.

This is getting long so I’ll start another one before I go into my theological thoughts.

Comments

  1. hi, Just wanted to let you know if you ever need any support feel free to email me. I am also carrying a limb body wall baby. I’m already 35 weeks, I found out in may about my baby.. This is my first. 🙁

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