Thursday, May 26, 2011

Congenital Heart Walk

The Congenital Heart Walk took place Sunday, just three days after Caroline was discharged from Children's National.  We were excited to see quite a few nurses and doctors that knew us by name (I'm not so sure that's a good thing...but we'll take it).  Last time I checked, the DC metro area had raised close to $68,000!  This was only the second year, so I was impressed with the results.  Thank you everyone who donated, and thank you even more for the prayers.  Parker was excited to get out and go on an "adventure", although it was hard to explain why we were driving somewhere to go for a walk...

As we continue to wait for word on when Caroline's Glenn will be, moving has taken up most of my worrying energy.  We will be in the new place by Saturday, and Matthew will have exactly one week with us until he reports to Rhode Island for school.  I can only speculate that surgery will take place while he is away...thank you again to those of you who will be watching Parker, again.  The Glenn has been labeled the "drive through" surgery.  Recovery times are much shorter and outcomes are more on the positive side.  That being said, it is still open heart surgery.  And as hard as it was the first time to hand her off, I'm trying not to think about how hard it will be this round.  We really know her now, not that we didn't love her before.  Now she smiles at us, and sings us songs.  She is very much a part of our family.  

Tuesday, May 17, 2011

Reality Check

As we wind down our first overnight stay in the CICU since Caroline's Norwood, I find myself sitting in the dark, contemplating her future.  Today sucked.  Standing by that hard metal jail cell of a crib tonight after such a traumatic day, looking over my girl with sweat stained hair, I realized that this is our normal.  This is Caroline's reality.  And it's a hard pill for me to swallow.  


We are settled into a VERY full CICU now. I was told that as a precaution, we will probably spend the night here. We'll see. Hopefully Caroline will remain calm and not have any episodes where they need to give her anymore medication. I'll bet she will be hungry soon, so these people better get ready for Princess Caroline.

All Done.

I just caught a glimse of Caroline as they were taking her upstairs to the CICU. The Doctor said everything went well and she will hopefully be awake and able to eat soon.

Cath. Update

I took Sweet lil' Miss back to the cath. room about 5 minutes ago. She was awake and smiling. Hopefully she will tolerate the all the medicine well and being intubated/extubated again. They prepared us for some time in the CICU, but we'll see.

Saturday, May 14, 2011

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.