Tuesday, April 26, 2011

Bad News First

It seems nowadays, every time I sit down at the computer...I find another reason to cry.  Glutton for punishment?  Maybe.  I can't stop reading about the journeys that others have taken, or babies that have taken that trip to Heaven too soon.  I woke up Monday morning to very sad news.  One of the first HLHS Mothers I found, mainly to ask questions, lost her baby girl Olivia.  She was 4 months old.  One month older than Caroline.  Yesterday was also my Sweetie's 3 month mark.  12 weeks ago, we were preparing to send our daughter away for her first open heart surgery.  I'm not sure why I feel so connected to this family.  I have followed their every move since we found out Caroline would be born with a CHD.  I wanted to be prepared.  I wanted to know EVERYTHING.  Now, I'm not so sure that all this is actually good for me.  I feel like, in watching those success stories, the one's with the not-so-happy endings always stand out.  I can't imagine the pain your soul feels when you hold your dying child.  I don't want to.  Not ever. 

Sometimes I reach over and touch Caroline in the middle of the night.  Just because I can.  I feel blessed to be able to touch my daughter.  I feel blessed that she is a fighter and has stayed with us this long.  Every day I catch myself thinking, "why am I feeling frustrated right now?" "I'll bet Olivia's Mommy would give everything she has to hold her baby".

No news yet on the Glenn.  I think Children's National is trying to torture me in the only way they know how...making me wait.

Monday, April 25, 2011

Happy Anniversary!

Three years ago, I married my husband Matthew.  Yes...it was a Friday.  Our journey has taken some unexpected turns, but I can't imagine having anyone else by my side. 

As it turns out, our Anniversary fell the Monday after Easter this year.  So, for all you picture hounds out there...they're on the way.  We would like to say thank you to Nana Vicki and Papa Keith for the cutest Easter outfits.  And send a shout out to Aunt Brette for driving the wheels off of the Saturn to hang out for the holiday.  We will be much closer soon enough...so we should see more of you.

Wednesday, April 13, 2011

Anything Else?

Like most heart parents, I have gotten used to the constant appointment schedule and always doing something, with somewhere to go.  Today, I was extra anxious about our Cardiology appointment because Caroline's second surgery (the Glenn) is looming in our not so distant future.  We got two thumbs up for the heart catheterization, to be scheduled as soon as Children's National calls.  As complex as her heart situation is, we have never experienced a glitch in progress or care...until now.  The Cardiologist saw some mild leaking of the tricuspid valve during her echo and perscribed enalapril to correct it.  Please pray that it does it's job, and she has no further decrease in heart function.  Hopefully, after the Glenn she won't need to continue to take the additional medication.  *I don't want any online flogging from other heart Mama's out there thinking "what's the big deal?"  It's a big deal to me. *

The D.C. Duncan's are quickly approaching a move to the Norfolk area.  Because we'll be living in the suburbs, we just got a new car.  Yeah.  I said new.  I'm excited, but my husband would go down and sleep in it at night if he thought he could get away with it.  Matthew has to be in Rhode Island by June 6th, so we have a big month ahead of us.

To give everyone an update on Parker (because so much of the time I feel like he is overlooked in the magnatude of his sister's needs), he is really excited about having a back yard.  That was one of the biggest requirements when we were looking for a house...the yard.  We talk about how amazing it is going to be every night before we go to sleep.  He is almost ready to wear "big boy" underwear.  Potty training is every bit as hard as everyone has made it sound.