Monday, February 18, 2013

Day 18 - Elisyn

Six years ago a woman in China gave birth to a beautiful baby girl . .

Today, we are blessed to celebrate this beautiful girls life, our daughter Elisyn.

In February 2011, I was looking at advocacy blogs and sites.  We had absolutely no intention to adopt.  But there she was, her photo staring back at me, and I just felt in my heart the pull to learn more about this little girl.

I contacted those advocating and asked for more information about her and her heart condition.  Then I texted my husband this photo with this text.  

"Isn't she beautiful!"

His response was a simple "yes".

I responded with "Can we talk about this later?".

His response was again simply "yes".

We do not know why the Lord placed her on our hearts that day.  But He had a plan.  We would go on to request her file and send it to one of the top pediatric cardiac surgeons in the country.  She was diagnosed from a top hospital in China after having a cardiac catheterization as having dextrocardia, VSD, aortic overriding 60%, double outlet of right ventricle, ASD, patent ductus arteriosus, PH, interruption of aortic arch.  The surgeon reviewed the file and his assessment was one of honesty and apprehension that she would be able to have corrective surgery.  Many other families also reviewed her file and were told statistics of "immediate death upon correction for a child her age", "10% chance of corrective surgery", "her chance of survival might be 50/50" . . but in our eyes it was better then "inoperable" and "terminal".  Regardless, we didn't care.  She was our daughter.

The following months were a blur.  If you know the adoption process well . . it was like that . . long and tedious paperwork but everything was being expedited to bring her home as soon as possible.  The days and nights were painful and long not knowing what condition she was in.

Half way around the world she waited.  Thankfully, we had met friends adopting from the same orphanage and they would see her and give us their own assessments of her condition.  Most photos were of her sweating profusely but pink.  Their assessments were that she had a rapid heart beat and labored breathing.

Finally, we were on a plane to China and not even a Typhoon could keep us from making it to her for Gotcha Day.  It was such a relief to have her in our arms.  But we soon realized how serious her health was.  She had a very persistent cough with moist rale, her heart rate was high, she was sweating profusely and she was extremely tired.  

Just two days after coming home she had a cardiac episode where her heart was literally beating out of her chest, quick labored breaths and groaning.  Immediately, we called the hospital and decided it was best not to wait till her appointment scheduled for the 30th of August and took her to the ER.  Our worst fears were confirmed that day.  Everything that China diagnosed her with was in fact true, and there were actually a few other issues that had not even been diagnosed yet.  She was immediately scheduled for a sedated MRI and from there they would schedule another heart catheterization to even see if her pulmonary pressures could be lowered to try and do a corrective repair.  Thankfully, they lowered to the high end of acceptable, but they lowered.  In the same breath we were told she was operable, we were told that the mortality rate was over 50% for the massive surgery that she would need.

We left feeling hopeless . .

But there has to be more then this . . we clung to the Lords word and we prayed.  Then we met with her surgeon.  What he would then talk to us about would leave us at peace knowing what we needed to do for Elisyn.
She underwent her open heart surgery on October 24th.

That would be the longest 6 hours and 20 minutes of my life.

Finally, we were told we could go and see her in the PCTU.  I walked in and crib after crib, I walked.  I hadn't even gotten to Elisyn before I felt the tears well up in my eyes.  For each baby I saw reminded me of what Elisyn was never given, a chance as a baby to heal her broken heart.  What I wouldn't give for every baby with CHD to be given that chance.  Elisyn rocked that PCTU though.  She astounded her surgeon and his team . . they came into rounds just shaking their heads.  Dr. Bove's exact words "simply amazing" . . and yes, oh yes she is!

But there was only one problem . . the surgery while successful left her body trying desperately to adjust to its new anatomy.  Elisyn would be hospitalized for a total of 70 days with painful chest tubes to drain the chylous fluid from her pleural cavity.  She has one zipper and two matching angel wings on her back now from the multiple surgeries during her stay.  Her lungs would collapse several times.  She would have to go NPO for 21 days.  We were on the roller coaster of our lives . . stable . . not stable . .  PCTU . . moderate care . . what would be next . . the waiting . . and more waiting for her fragile body to adjust . . , and then she stopped eating.  Eventually, a NG tube would be placed to help her with her nutrition.  Thankfully, they found a diuretic cocktail that allowed her body to stop the chylous fluid.  

Each and every day, Elisyn would get up and out of that bed with her chest tube and her "oasis" and we would walk those halls . . or she would run . . yes, I said RUN those halls, laughing and smiling and knowing that with each step it was bringing her closer to home.  Though some days were tough, really tough on Elisyn her spirit never broke.  She is such a funny, loving and spicy girl.  They said that her "spicy" attitude was exactly what got her through all of this.  But I know it was much, much more than that.

Like most mothers, I never imagined having a child with CHD.  Our daughter should have never lived outside of her mothers womb.  The PDA that should have closed shortly after birth should have ended her life . . but that one thing, that miraculously stayed open kept our daughter alive for 4 years and 8 months.  

I know some people do not believe in miracles . .

but I certainly do.

Happy 6th Birthday

While Elisyn's heart has been repaired it is not cured, she will have to undergo future open heart surgeries.  She will never be a candidate for a heart or a heart/lung transplant and she continues to fight the battle against her pulmonary hypertension.


Danielle said...

She is a beautiful miracle, that is for sure.

Danielle said...

She is a beautiful miracle, that is for sure.

Brenda said...

Happy birthday to your AMAZING and beautiful little blessing!

Drea said...

I remember so vividly seeing your Elisyn on the BAAS photolisting and praying over her, as our Tristan had just been diagnosed with PH. Who would have thought that several months later, we'd be in Hangzhou adopting Bryce and visiting with Elisyn? The journey is amazing, and I've loved following Elisyn's story as she has thrived within the love of your family.

Pam and Jeff said...

Happy Sixth birthday sweet Elisyn!!! We still have our beanie that you gave Julia. God has big plans for you.

LisaE. said...

Happy birthday sweet girl! What a beautiful story!

LaKasha Strickland said...

Happy Birthday sweet girl. May God bless your heart, life and family.

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