Friday, August 9, 2013

Boston Bound

It all happened so fast. It took far to long for poor Zuzu to get a scheduled surgery date here in Boston. But when she did boy did things move quit quickly! 
In a few days we had to book flights, arrange a place to stay, get all the paperwork and plane friendly oxygen, pack, celebrate our nieces 2 birthday and find a sub coach for CMBA to name a few.
Zuzu has been in heart failure ever since her last surgery. So once we got on that plane it felt so good to know soon Zuzu will be in the care of the best doctors the world has to offer. At the best hospital. Needless to say we were beyond excited with limitless nerves for Zuzu. We are sick of watching her struggle and suffer. Not to mention on our flight we got to hold Zuzu the whole time which is always so very very nice.
Since we flew on the red eye when we arrived at 6am we checked in and slept a good 4 hours. Then we just tried to enjoy the little time we has left together before Zuzu would be admitted and have her second open heart surgery in a month at 6 months old. 
Boston is beautiful so the short walk to the hospital is thoroughly enjoyed even though at times I walk it 6 times a day. My mom flew in the night before surgery to help where it needed. Bless her heart! We didn't know how much we needed her until Chris and I were sick with fevers and chills. My Mom got to be with Zuzu the night before her surgery so we didn't get her sick. It was hard I hated it! It was the last thing I thought would happen. But it did! 

It however wasn't the hardest thing that happened. 
One of the hardest parts is saying goodbye. everyone is watching as you cherish the last few fleeting moments. kissing her, touching her precious face, trying to express the unmeasurable love you have for her all while wanting so bad for her to understand that you wont be far and not to be afraid! and then the anesthesiologist whisk her away! I hate it! I hate it so bad. 
This time around a nurse had to hold me up and walk me to the waiting area. Which is the second worst part waiting... 
The surgery lasted a long 7 hours. But we didn't get to see her for 9. The doctor tried to repair the valve in her heart but knew if he did she would need another surgery in a few months so he replaced the valve. Which means Zuzu will need aspirin daily. A visit to Boston every 6 months to a year to expand the valve as she grows and eventually it will need to be replaced! We are hoping the next surgery wouldn't be for 8 years but it will most likely be much much sooner:( 

She is doing great! Zuzu the last 3 days has been given meds to give her paralysis to allow her body to fully rest and heal. Its hard to see her lay there with no emotion lifeless. BUT Today they slowly took her off it and have been allowing her to breath on her own a little, wiggle and shimmy and even fed her through a tube :) yea!! I told her I loved her today and she moved her head in my direction. 

That right there folks is what we call a tender mercy which made my day!

She is easily the bravest and strongest person I have ever met! I'm amazed at what she takes on and conquers on her own. And it's no surprise she does especially with her fan club all around the world cheering for her, thinking about her, supporting her, and praying for her! 
Thanks to each of you!

Tomorrow we are hoping to take the breathing tube out so I can hold her. Fingers crossed!!!!


Jody said...

I am in tears for you guys right now. The struggle, the ache of wishing it all different, and yet the love you get to share and receive to and from Zuzu is something I know you wouldn't trade for the world. My kids and I have been in prayer and sending thoughts for your family, and for the doctors and caregivers for your sweet baby all weekend. It is such a rollercoaster of emotions; I am glad she is through some of the toughest parts. So glad your mom cpuld be with you for support too. It is exhausting even to sit by a bedside and walk hospital cooridors for days! We will continue to send love, prayers and positive thoughts as Zuzu heals and recovers and hopefully astounds you all in bouncing back from this second surgery. I hope that she will get great pain management and the beauty is that she will never remember any of this. I look at all my one daughter has been through and am amazed that the scars she has that no one can see are sort of the parts of her that make my love deeper for her. They certainly are proof of the miracle our little ones are. I hope you feel that every time you hold her or get to see a smile on her face. I hope your other daughter is doing well through this too! She has to be quite the extra special sister as well. All the continued best...and thank you for the photos and update. Here's hoping it is all part of the plan for Zuzu to live a long and full life with her family! xoxo

Cummards said...

Those pictures comparing the two surgeries break my heart! Im So happy you are in Boston and she is getting the best care. xoxo

Anonymous said...

I just found your blog after reading your sisters and I am sitting here with tears rolling down my face, for the first time that I can remember I am reading the words that I myself have felt. I was 24 when I had my first baby, a beautiful little boy, Joshua and like your gorgous Zuzu he was born with Down Syndrome and a serious heart condition which required surgery at 4 months of age, we have photo's of him that are a spitting image of yours.

Cherish your first hold and enjoy every moment with your beautiful baby girl because she is amazing and she will continue to amaze you each and every day.

My little man is 11 and is doing great and our family is blessed every day with love, joy, laughter and...... dance.
Yours Faithfully
Sam Epps