Thursday, July 8, 2010

"How Are You Better Than Ever?"

I am a part of a group called TwitterMoms and I heard about a contest that made me think.  You can read about it HERE.  The contest asks...How Are You Better Than Ever?

I can tell you the fact that I can sit in front of my computer and answer this question is one of the reasons that I can clearly say I am Better Than Ever!  I have a 3 year old little girl who is a Survivor!  She is my Warrior Princess!  She is the reason I am the Woman I am today...the Woman I am proud of..the Woman who she calls, "Mami".  

Savannah was born with a rare liver disease named Biliary Atresia.  When she was 4 months old she was listed to get a liver transplant.  She was dying.  The only thing that would save her is a liver transplant...oh...I thought I knew what life was about but ... I didn't.  In April, I wrote the following blog and I wanted to share it again....for this child is what makes me Better Than Ever...for the decision of a stranger that grieved the passing of their child is what makes me the advocate I am today...I am who I am because of the journey I have taken...I Am Better Than EVER!

April is Organ Donation Awareness Month....3 years ago I would have read this and thought.  I am an organ donor.  I have it on my driver's license...and never would I have had a second thought about it.  I certainly do not think I would have brought up the conversation with my hubby....not a serious one.  The most serious conversation about death that we had up until 3 years ago was my threat to haunt him because he said he would freeze my body and make sure I had no socks feet are always cold....that is just wrong!
I think I was a pretty typical organ donor...I knew it was the right thing but never really spoke about it.  Then on December 5, 2006 the most precious little girl was born.  Her name was Savannah Isabella.  I carried her in my body for so long that I remember telling Robert that I just wanted to keep her in there...I could protect her in there...I did not want her to come out of me and into the world where harm could come to her....little did I know the journey she would be facing.  Little did I know how much she would change the way I look at the Gift of Organ Donation.
She was here...she was perfect.
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I remember the day we went home from the hospital with our baby girl...she had all 5 fingers and all 5 toes...what more could I ask for?
I always new I was lucky.  I found a man to love and who loves me unconditionally.  I have woken up on so many days and told him that I was just so surprised that it was possible to love him anymore then I already do and yet my love continues to can I love someone with all of my heart and yet have it grow?  I had no idea that the love one has for a child can be so deep.  It is so different then anything I have ever felt before...I loved my baby more then I can ever explain in words...but if you are a mother, a father, then I do not need to explain it.
At 4 months of age I took my daughter to see a man that will always be a hero to us.  This man was a pediatric GI...a fancy title for such a caring man.  His name was Dr. Leon Reinstein.  He was the man who looked at us in the eyes and told us our baby was sick...very sick.  "It can be a long list of things" he proceeded with his explanation, Robert chimes in and asks, "What is the worst case scenario?"...Dr. Reinstein says, "she could have Biliary Atresia".  The rollercoaster began...this same day we were off to get labs drawn and to try to soak in the information we were given...our 4 month old baby could be dying.  We got in the car and drove and at some point between the tears we decided to take her to the beach for the first time...this day would not be all about the tears.  Here is my Warrior Princess with her Super Papi on this April day with the first of what is to be many bandaids on her little arm from lab draws.
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We soon learned that our baby needed a liver biopsy to confirm that she had Biliary Atresia...the first of many hospital visits. On this day we walked in expecting a needle biopsy (scary words for a new mami) and found out her organs had too much fluid around them and this would not be an option.  Dr. Reinstein worked his magic and had a surgeon perform the biopsy within hours.
When the surgeon came out he looked at Robert and myself and said, "my heart skipped a beat when I felt your daughters liver" and placed the photos of her liver on the table.  She will need a liver transplant to live.  At this moment my heart stopped.  I could no longer feel my heart beating.
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Savannah grew an infection after the biopsy.  She had to go back into the tiny, perfect little girl had to fight for her life.  We sat in a room with 4 other babies and a curtain seperating us...the machines beeping all day long.  We had all kinds of doctors coming to visit but the memory we have is of a man with a big smile shaking our legs with a soft whisper in the early hours.  It was Dr. Reinstein, he always told us the truth no matter how hard it was to hear but it would tell you with such a caring and comforting way that it gave you hope...hope that she had good people surrounding her and good people wanting to save her.
After 2 weeks in the hospital sleeping in a chair we learned that we had to leave this hospital and find see....this hospital did not do liver transplants...this hospital did not do any transplants. There are special hospitals that specialize in transplants and we had to find one..and a pediatric hospital at that.  We had not slept.  We have barely eaten.  We can barely breathe.  Now we have to find a hospital to transplant our child.  I got an email from my cousin, Janid.  She wanted to know if we had considered The Children's Hospital of Philadelphia (CHOP)...I am forever grateful to her for sending this email.  We chose CHOP.
We flew to Philadelphia with Savannah.  I remember security putting me in a machine that blows air, they tested all of our formula.  They wanted to know why my baby had an IV sticking out of her arm.  I remember angry people behind me making statements that you should learn how to speak English if you are going to travel in the U.S.  ... they could not see that just a few months prior I was in a doctorate program.  I was living my dream of being a Mami.  I could not speak English..they were right...I could not speak.  I held my baby and just followed the security officers and did what was instructed because I was holding my dying baby.  I will never forget those words of hate and anger because I know those words that were spoken were forgotten already by those who spoke them.  It reminds me how much we need to care for one another and not be so ready to judge....I know in my heart if they knew...if they only knew...
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It was official....our daughter was taken to CHOP and after all types of testing she was diagnosed with Biliary Atresia.  She was placed on the waitlist for a liver...she had a PELD score.  Then it hit me...all of this medical terminology that is thrown around means...she is losing her fight.  PELD stands for Pediatric End Stage Liver can you be at your endstage of life when you are 4 months old?
Robert and I argued over who was going to give up their liver to save Savvy.  He told me he would not allow me for I was still healing from my C-Section...I told him I couldn't let him because I could not live if anything happened to them on the surgery tables.  The choice was taken away from us for neither of us was a match.
The rollercoaster of emotions we went through while waiting to learn if Savannah had a match is too intense to type up right now.  I have documented our journey in this blog.  I had a very sick little girl at home...there was not a lot that the doctors could do...she needed a transplant.  I stayed home with her trying to keep her away from germs.  We did our best to keep life happy between vomitting, diuretics that would bathe her in urine, feces stories that I am trying desperately to forget, many hours of tears and medicines...we celebrated...this is a picture of her  6 month birthday.  We did not know if this would be the only birthday she was to have.
We had many hospital visits.  We had little sleep. We spent countless hours on the internet trying to learn ways to help our child.  We spent countless hours trying to fundraise for our COTA fund, trying to fight the insurance companies, trying to survive.
After Savannah's last hospitalization in St. Petersburg we made the choice to seperate our family.  I decided to move to the Ronald McDonald House in New Jersey which is 20 minutes from CHOP.  We feared receiving "The Call" and the clock ticking...not being able to get our precious child to Philadelphia in time.
So much happend during these 8 months.  I prayed...I begged GOD to take my last breath as to give it to Savannah.  I held my child and tried to will that liver disease into my body...I wanted to fight this for her...but this was not to be.
On December 29, 2007 we received "The Call".  Robert was due to leave back home as he was staying with us at the Ronald McDonald House for the holidays.  We had driven to Maryland to visit family and friends.  We were invited to stay the night and I wanted to for I was starting to lose hope that we would ever get "The Call".  I knew that so many simply die on the waitlist...they do not get the chance to fight.  Robert insisted we head back to be closer to the hospital...noting every hospital on the GPS down to Philly in case we got the call...he was ready to race to the nearest ER and have her flewn to CHOP.
We arrived at the Ronald McDonald House and got "The Call".  It was time to get Savannah to the hospital.  There was an immediate joy and then simultaneous tears.  I knew my baby was getting a chance...only because another had lost their fight.
We got in the car and drove...Robert actually drove down the wrong side of the exit ramp we were so overwhelmed...luckily it was 2 am with no one on the road and he corrected it quickly.
I wrapped her prayer blanket around her and held my girl.  I did not know if she would live through the surgery.  How would I be able to hand her off...but if I didn't then she would not live much longer.
On December 29, 2007 the transplant surgeon came out and told us that the transplant was a success. She then said, "This is not a cure.  She will have a rollercoaster ride in her life"...and I remember being so grateful and saying, "Thank you for letting us get on the rollercoaster"...Thank You!
On December 29, 2007...our donor angel's family said, YES.  YES to saving the life of a stranger.  YES to allowing my daughter to live.  YES to the Gift of Organ Donation.  On this day, my heart began to beat again.

Why are you Better Than Ever?  Join me and share your can go to:
Dove® gofresh™ Facebook Contest Page ( and enter your photos.

Disclosure: I wrote this blog post while participating in the TwitterMoms and Dove® gofresh™ blogging program, making me eligible to get a $25 gift card and some product. For more information on how you can participate, click here.

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