Courage is not the absence of fear, but rather the judgment that something else is more important than fear.

- Ambrose Redmoon


The way is not in the sky. The way is in the heart.

-Buddha



Thursday, April 5, 2012

I am ready for my close up!!

I had just unpacked our bags from vacation, when I had to turn around and pack them again.  This time just for an overnight, but when you travel with a 10 month old heart baby, you always have a lot of bags.  We were up early packing the car on Tuesday morning.  We hit the parkway at 10 am..we had a pretty uneventful ride.  Xavier slept and Nate and I talked.  We arrived at CHOP at noon..and met with a photographer and some writers who work for the public relations department of the hospital.  CHOP puts out a magazine called The Children's View.  They contacted us about doing a story on Xavier.  They had interviewed us last month and now they needed pictures.  So Xavier smiled and charmed the pants off of everyone.  He was like a professional.  We ended up with some amazing shots of Xavier and the whole family.  The magazine is sent out to donors of the hospital.  It is so important that donations are made to CHOP and to the Cardiac Center.  I hope that Xavier's story will help people see the amazing work that the Cardiac Center is doing.  Xavier will also be a patient story on the Cardiac Center's website.  I hope that he will be a sourse of hope for new families who are researching hospitals and HLHS.  We had so many CHOP families who inspired and continue to inspire us..this is just our way of giving back.  We are going to be getting a digital copy of all the pictures they took, not just the ones they use, so be ready to look at tons of Xavier smiles!!  After the photo shoot, we headed to the intake center to just do blood pressure, O2, weight, length and go over orders for the MRI.  He was NPO (which means that he could not eat) at 11:00 pm the night before...NO FUN!!


Even after a long day..he is still all smiles!!

Off we were to the Holiday Inn in Cherry Hill.  I called the Ronald McDonald House the night before I could almost here the laugh in her voice when she said they were full with a 16 family waiting list.  It was worth a try.  Thank God for the RMH..they help so many families who just want to be near their sick children.  We just had dinner and hung out.  Xavier was a bit fussy..I just think that he knew he was not home...but we did squeeze in a little fun....


Xavier had to be at the hospital at 5:30 am...so we were up and moving at 4:30.  Considering that he could not eat anything, he was a pretty happy guy.  We checked in and the lady realized that when he had his Glen she was out on a leave and he never got his heart pillow.  She she gave him a cute one with monkey's on it.  He loves it!!  They took him into the CPRU (cardiac patient recovery unit) and prepped him for his MRI.  They hooked up his leads, pulse ox, blood pressure and put his hospital gown on him (in pretty purple).  He was flirting with the nurse and getting tons of oohh..and ahhhs.  We sat him up and started to put his arms through the gown when...he just threw his arms around my neck in a bear hug...I think that was his first real hug...he made his mamma cry (and I think I saw a little tear in daddy's eyes too).  He actually hugged me a few more times..I think that he knew something was up.  Finally he was all ready and he just watch some Mickey Mouse and was pretty mellow.  



Finally they gave him some medicine so he would not fight the mask as much and the team came to get him.  We walked together down the horrible hall that we have walked way too many times..it has a smell that you will never forget.  We went into a room, shook hands with the anesthesiologist and talked to Xavier while they gave him gas.  We kissed his chubby cheeks, whispered how much we loved him into his ear and walked out of the room with that all too familiar lump in our throats.  The nurse could tell that I was about to lose it and asked us  "show off your baby"  questions like who does he look like and is he sitting up on his own yet?  I pulled it together quick and Nate and I went for some coffee and attempted to eat.  

After breakfast, we just sat on the bridge that connects the CICU to the CCU and read.  Of course we called our parents to update them on how things were going.  We were told that it would take 2-3 hours.  
The staff often decorates the window of the bridge to reflect things that are going on at the hospital.  It is siblings week this week and they rocked out the window!!


Finally we got the call that everything had gone great and he was in recovery.  We rushed back to be with him and he was not a happy camper.  He just looked at me like "really mom??"  They ended up needing to give him a breathing tube toward the end, but that was to be expected.  We got him a bottle and he ate right away.  Soon he was in good spirits.  We went home soon after.  We do not have results yet, but I will be sure to post when we do. I have faith that it will be all good!!!  Thank you to everyone for your daily prayers for Xavier.  He is such a special little guy and we are super proud of how much of a fighter he is!!


Still waking up...and still super cute!!

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