Wednesday, March 27, 2013

Back on 8 South CICU

(This post contains photos of Katy while she was intubated)

I was excited, and scared to see Katy.  As surprising as it is Katy has never had open heart surgery.  She was never a candidate.  So although I knew what to expect ( I have seen many other children post op) and I have seen Katy intubated, I was worried about seeing her chest open. I was afraid to see my baby girl in pain. 

Thankfully, I prepared myself for the worst and she looked so much better than I imagined.  Because, this heart was so very perfect for her the surgeon was able to close her chest and she looked so comfortable and peaceful.

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The plan is for Katy to stay on full support for the first 36-48 hours  Thankfully, the pressures in her lungs are much lower than we were expecting, and her lungs seem to be adjusting to her new heart.  The team is being very cautious, and the next 48 hours are crucial.

Monday, March 18, 2013

Back to waiting…

We made our way back and met up with the family. We headed to the surgical waiting room at 630 AM we were the first ones there so we set up our “space” TV, comfy chairs, lots of plugs for the many electronics.

We nervously chatted.  I was once again reminded of the differences of men and women.  My dad sat outside of our “area” to read…Mike stuck his nose in his computer and Tracy, Krissy & I chatted.   Eventually we settled in too our own electronics.  I logged on to Facebook and was surprised to see that Mike who is not one to post on Facebook had been giving the play by play on Katy’s day.  So sweet.   The amazing support from our friends and family across the globe was so encouraging. 

The nurses and doctors were amazing about coming up to talk to us,every step of the way.  Thankfully they always had reassuring words for us.  Katy was doing great.

At one point I laid down and put a blanket over my head… in hopes of sleeping to pass the time.  Or maybe just to “hide” for a little bit. 

At 9: 15 the nurse liaison came to tell us that the new heart was in and that it could take up to 45 minutes for them to warm up Katy and get the heart beating. Another 45 minutes?  You would think that after years of waiting this would be easy… but it wasn’t. Finally I said “ I am going to go to the bathroom and that is a surefire way to get more info” Sure enough I went to the bathroom and Dr. Blume was out in her scrubs to tell us that the heart was in and beating and all was wonderful.

My dad was the closest to me and we hugged and we cried and we both just felt pure joy and happiness.  Mike was across the room (my guess updating FB) and Krissie and Tracy had went in search of a bathroom.

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Now we just have to wait to see our girl! The surgeon Dr.Fynn Thompson has assured us that everything has gone fantastic.  It could not have been a better heart or surgery!  So Blessed.

Thursday, March 14, 2013

1 Month

A month ago today our lives were forever changed.  Katy’s recovery has been incredible. Dr. Blume  told us  that kids waiting for transplants fall on a scale between those that may not survive the surgery to those that will thrive and go on to play soccer. She has always assured us that Katy was on the soccer end of the spectrum.  I never expected that Katy would be ready to play soccer one month post transplant.  ( NO SHE IS NOT PLAYING SOCCER… yet)

Since Katy has been home she has been thriving and doing wonderful.  I am happy to report that she had her second biopsy and has ZERO rejection. Her immunosuppressant levels have been solid.  All great news. 

As for the rest of us Murphy’s… oh, we are loving life and breathing easy for the first time in years.  We are very excited and hopeful to get back to normal and it’s nice to see some of that already happening.  Katy still requires a lot of care ( intense med schedule and LOTS of appointments) but, it is just so much easier to deal with. 

I would like to share with you a video that my cousin Paula made for Katy.  It is gorgeous, and she is much quicker than me!

I still have have some more to share from our very special day… but I wanted to give you a current update. 

I we celebrate this milestone please pray for our donor family.  I imagine that this is a very difficult milestone for them. 

Hugs!

Amiee

Wednesday, March 06, 2013

Go Time

February 13th 2013

After many long days, months, years of waiting our sweet baby girl was being given a gift, a gift that would mean a chance for her to grow up leading a full and normal, healthy life. The most generous, selfless gift one can give.

Mike and I would finally be able to stop living in constant fear.  We would have new worries, but they pale in comparison to the worries we have lived with since we learned of Katy’s special heart at our 20 week ultra sound.  But, before we could do that Katy had to make it through the surgery and the crucial 48-72 hours that follow. 

Most kids who are going in for a heart transplant don’t go into it looking like this:

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Living a pretty typical 5 year old life.  So it was very hard for me to send my “seemingly” healthy daughter and send her in for a surgery that she may not make it out of.  My brain knew that she was very sick and that any moment her heart would get sicker and she would be fighting for her life or worse.  But, my heart saw this little girl… the little girl that is a vital thread of our family. Although, I have lived in constant fear of losing her every. single. day. the thought of her going through this major surgery was so scary. The thought of not living in constant fear every. single. day was so exciting.  So yes, it was an emotional roller coaster.  But, oddly enough I felt very calm… up until this point…

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Katy’s 5AM wake up call to a room full of people!!! She was less than thrilled.

5:15 came and everyone was ready to ROLL… Anesthesia was giving loopy juice… hugs and kisses to a sleepy Katy.  Lots of tears… (from the grownups) it was very rushed.  Mike and I escorted Katy down… we said our goodbyes in a hallway and even now it feels like it was very rushed… and I don’t feel I had enough time.  It is time sensitive… but there was a miscommunication at some point and it was a bit more rushed than normal. That said… I could have had 5 hours to say my goodbyes and it wouldn’t have been long enough.  Unless, you have had to send your child off behind those heavy metal doors I can never express  to you the feeling.  It never gets easier… you may get better at doing it… but that pit in your belly never goes away, that uncertainty, that last kiss, that plea with the nurse to sing her favorite song or rub her hair just so… that moment you look the Anesthesiologist in the eye and you beg him to bring your girl back to you, because you can not leave the hospital with out her.  It doesn’t get easier, sadly we just get better at it.

Well once Katy was wheeled away and Mike and the nurse were holding me a bit tighter than just a warm embrace in an effort to ensure I didn’t chase after her.  I lost it… the calm mama that no one could believe was being so calmed turned Into the hysterical hot mess everyone expected her to be… I was dry heaving and crying and screaming.  The OR nurse was the sweetest, most beautiful kind hearted person, she held me, cried with me and connected with me… she told she she was a mama and she would take care of Katy as if she were her own and that she would update often and that we had every reason to hope that this surgery would be very successful.  I can’t remember her name, but I will never forget her kindness. 

Of course Mike… oh my ROCK.  That was his little girl… his sweetest baby girl.  Those two share such a love and bond I can only imagine what Daddy was feeling… he is a man of few words. I do know that he was feeling mostly relief.  He knew his baby girl would come through with flying colors.  His presence is always so calming…no words just his embrace can calm me when no one or no words can.

 

Sunday, March 03, 2013

Hurry Up and Wait

February 12 2013

So once I realized that yes this was the call, and once I stopped jumping and dancing around with Patrick.  I called my dad to tell him it  was GO time.  That conversation went a little something like this:

Dad: “Hell-O”  if you know my dad you know how he says hello

Me: (in my most calmest voice ever… think soothing a baby during a yoga class) “Hi dad, what’s up?  Where are you?

Dad:  “not to much, work”

Me: “oh, OK, so we got the call for Katy’s new heart”

Dad” “……………when, what, Ok what should I do… OK so do I have time to take the dog out… OK wait why are you so calm.  Amiee, you are being really calm.

Me: “You have time to take out the dog, Mike is on the way home with Kate… we are going to pack a bag and head in. I will call you when we are heading in.  You call Tracy. “

Dad: “Ok, I am going to clean up here, take out the dog and we will head in when you call us. Are you sure you are OK?

Me:”Yes, Dad I am OK really happy, really ready, it’s time.

Once my dad was in the car on his way home he called me again just to make sure I was OK.  Everyone (including myself) expected me to be freaking out, and I wasn’t.  I was ready. Was I afraid sure, but I was more afraid of what would happen if this call didn’t come in time. Mostly I was incredibly thankful, hopeful and maybe a bit excited. 

I can tell you and my cousin Darlene will agree… I can not pack under pressure. LOL! I was walking around the house throwing random things in bags. 

So after dropping off Patrick to my dad and Tracy (they were bringing him to Krissie’s)  Saying goodbye to Patrick was one of the hardest parts of this process.  Watching him and Katy say goodbye and kiss and hug and share I love yous was hard for this mama’s heart.  But, I believed that they would be back together soon so I had to focus on that.

We got to the hospital headed to the floor and were greeted by some of our favorite people.  The nurses and staff on 8 East.  I thought it was fitting that Maura, Katy’s very first nurse on 8 East when she was 7 Days Old was her nurse today.  Full Circle.  I like full circle.

There was a lot of paper work to sign and people to meet with.  A lot of information to take in. 

Katy did a lot of this:

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Mike and I did a lot of this:

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We did some visiting with family and then everyone left to get some rest… My dad, Tracy and Krissie would be back at 4AM.  Mike went and slept and I cuddled up with my girl.  There would be no sleep for me.  I told Katy the plan and what she had to do and that we loved her and couldn’t wait to do all the things she wanted to do.  I wished I could sleep, just to pass the time, but I saw every 15 minutes. I felt every emotion one person could feel.   I was happy that this day I had prayed and hoped for had finally come.  I was sad for the family that was grieving the loss of their precious child.  I was angry that this had to be at all, why did my girl have to go through this.  I was scared, what if the surgery was not successful.

At 4AM once everyone was back the amazing Dr. Fynn Thompson came up to chat with us.  This amazing man was such a comfort to me.  I knew that Katy would be safe in his care.  This is the man that would hold both of my daughters hearts in his hands.  The one the beat inside of me for 35 weeks, the one that has gotten her this far, and the other that would beat on inside of Katy for hopefully many many years to come.

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Almost Go Time…