Happy 1 week Fonanniversary, MC!

6:00 AM One week ago today at this moment, I was handing over MC to her team of docs.  It’s amazing how far she has come and what she can do one week post op.  We had a fun afternoon yesterday with a visits from Aunt Kacy and a few friends.  Yesterday was the first day MC has been around another child and I think it was great for her.   I’m anxious to get McCanless here to visit her baby sister.  I know they will both love to see each other.

MC started off her day pretty slowly.  She was in no mood to talk to her cardiology team or Dr. Bradley, her surgeon.  She slept in and lounged around most of the morning and didn’t even want to head to the Atrium for a morning visit like we usually do.  We took a walk around the hospital and watched Nemo for a bit.  After lunch, I made her get up and we went to the Atrium.  She painted and played for a while once we were there.  Later on, her nurse changed the bandages on her chest, which was not fun, but she had a  great afternoon playing with Parker, my friend, Lee’s 7-year-0ld.  They laughed and giggled and he even painted her toenails.  It was amazing to see how happy she was just being around another child.

Her nurse came in this morning and checked her 24 hour fluid output from her chest tubes.  Her output is still somewhat high.  Her left tube output was 115 mls and her right tube output was 150 mls.  We’ll get there.

She continues to be a bear with taking her oral meds.  She’s just sick of them.  I can’t blame her, though.  She still doesn’t have much of an appetite, although she did chow down on a handful of Coco Puffs yesterday.  I’m hoping today she will want to eat more, get her meds down (and keep them down) and have enough energy to make it to the playroom.  Yesterday, a new neighbor arrived, a HLHS baby girl.  It was great talking to her family and being able to show them how great MC is doing.  As I talked to her mom about feeds, tummy issues and sleeping habits, the memories of her very first surgery came flooding back.  It seemed like an eternity away until I really started talking about it.  It still amazes me how much my baby girl has been through.  No wonder she’s so sassy!

Parker painting MC’s toenails yesterday!

7:33 AM The Princess is still sleeping soundly and I’ve enjoyed watching the sun rise on the Atrium.  It’s truly a lovely view, especially for my sweet girl who lives to visit the magical playroom everyday.  I snapped a few photos and thought I’d share.  On 8D, parents are required to stay with the children as primary care givers.  (Not that I would be anywhere else anyway.)  We do have a fold out chair that acts as a twin bed at night; however, I opt to sleep right in the bed with Mary Clare.  She loves to “get in her spot” smushed right beside me.

Do you see sleeping beauty all bundled up?

10:30 AM Mary Clare just downed 5 meds so I’m letting her take a break with a bit of “Max and Ruby” on Nick.  (I’m also giving myself a mental break after that ordeal.) Otherwise, she’s had a slow start today.  Our plan was to hit the Atrium at 10, when it first opens, but the docs have not rounded yet, so we’re waiting on them.  It’s amazing how full our days actually are.  We are never just sitting around.  We have appointments, and meetings with various docs, nurses schedule various events (dressing changes/IV meds/ check-ins) and we always have Mary Clare “events.”  I should have known that Mary Clare would wait to be plugged into an IV pole, with two chest tubes and collection chambers, and wireless telemetry leads to refuse to go potty in a pull up.  I’ve waited two years to really try to potty train her because I just knew it would be an ordeal to be in panties while in the hospital. Or in the least, I thought she would revert BACK to pull-ups-so I waited.  This week, though she is as potty trained as it gets, even through the night.  Dry as a bone.  My children are as hard headed and head strong as they come.  Shall we take a moment to pray for my patience?

Have I mentioned how blown away by all of the love and support we have received?  I have been amazed at the number of people who love our baby girl and pray for her everyday. I just read an eNewsletter from Thomas Hart and saw that the student body has raised $1,351.00 so far for the American Heart Association in honor of MC.  They have been selling buttons with her photo and “Pinkalicious” on them, of course!  So amazing.  I also have hundreds of photos of MC fans wearing pink overfilling my inbox.  We have seen photos of friends, students, co-workers, strangers, store owners, pets, people from the East coast to the West coast all donning their pink for MC.  We have photos of pink balloons, pink ribbons and pink decorations from everywhere on store fronts and houses!  My heart also overfills with happiness and gratitude. I can’t wait to show her the photos  one day and  tell her of the Day of Pink that was just for her!   Pinkalicious author, Victoria Kann, also contacted us and sent Mary Clare a Pinkalicious care package with Pinkalicious dolls and signed books.  How amazing is that?  We are blessed beyond measure.  Thanks be to God!

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