Pre-Cath. Jitters

Children's decided I had suffered long enough waiting on them to schedule Caroline's heart cath.  Don't get me wrong, I'm not excited about it.  It just took forever.  Each day I grow a little more anxious about handing her over again, even for such a "routine" procedure.  The date is set for Tuesday the 17th. We are fortunate to be the first case of the day, so Chunk won't go very long without eating.  Let's just say she turns into a total "Princess" when she is hungry.  It seems our luck has run out in regards to keeping everyone in this tiny apartment healthy. Parker has just today come down with what we are calling a cold of some sort.  Please pray that Caroline stays healthy.  We need her strong and funk free for her catheterization.  Monday we have lab work...poor baby hasn't had to be stuck with anything since we left the hospital.  I guess you could say I'm nervous about that, too.  There is something unsettling about holding a visibly upset baby while someone causes them pain.  No matter that it truly is for her own good, she is old enough now to understand that Mama makes things better.  I am worried that she won't trust me after this ordeal, or worse, I won't be able to stand her so upset.  I can imagine her little eyes looking at me screaming "why are you letting them do this to me?"  
We have been packing our things in preparation for our Memorial Day move.  All I can say is that we have accumulated a lot of stuff in this tiny space.  Moving just adds another straw to the camels back.  It is necessary, it just may get done half-assed or in a hurry...we have bigger things to deal with.  Depending on the results from the cath., we may be back at Children's for Caroline's Glenn procedure at the very same time we are moving.  This presents more problems, like where we will stay after we are discharged from the hospital.  It is a three hour drive (depending on this wonderful DC traffic) to our new place.  These are all things we never had to think about before because our apartment is so close to CNMC.  
Parker keeps us motivated to get to our new place.  Everyone he meets gets to hear about his new back yard and all the cool things he is going to have to play outside.  I'll have to admit, I'm ready.  And it keeps the light bright at the end of the tunnel.

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.

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.

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. 

Milestones

Happy 2 months to our sweet baby girl!  I have recognised how much more significant all the milestones seem to be when comparing my healthy boy to Caroline.  I consider also how very blessed we are and I don't take one single smile for granted.  She weighed in this morning at a staggering 4.50 kilos (which is 9 pounds, 15 ounces) so we are excited about almost breaking into the double digits.  Eight weeks ago, we began a journey we had been preparing for...but nothing really prepares you for the fight these little one's are born with.  She has already endured so much and shown us just how precious life is.  I continue to stay cautiously optimistic about her progress, she still has so much to overcome.  We thank everyone for keeping us in your thoughts and prayers.