Sunday, April 25, 2010

Q&A

Some of you have asked if this is Chrissie's original heart and if there's any possibility of a transplant and about her adoption story  You will find more detailed info if you click on the "Chrissie's Adoption Story" button in the right sidebar of this blog, but I'll throw in a few answers in this post, although it would take days to script all that God has woven together to create the beautiful tapestry that is today known as CHRISTyn Joy Patterson. 

This is Chrissie's original heart.  She had not ever had any surgeries prior to Monday, April 19.  She is an absolute miracle.  Chrissie is 4-years-old and spent the first 10 months of her life in a hospital in Belgrade, Serbia, where she was born as "Barbara" to a birth mom who loved her daughter dearly.   "Barbara's" birth mom made what was most likely the toughest decision of her life after her sick daughter was born.  "Barbara's" mom chose to abandon her at the hospital as the only hope of saving her life.  Serbia didn't have the technology or cardiac skills to perform the necessary heart repairs to save this baby's life.  The only hope was to get this baby to America or let her die in Serbia due to lack of medical technology.

With the congenital heart defects that Chrissie was born with, she should not have lived past the first two days of life.  Chrissie did not have any surgeries or stents or anything, yet God miraculously saved her life, keeping her alive until He chose our family to rescue her at the miraculous age of 4 YEARS.  FOUR YEARS!  God granted her life for FOUR YEARS, when she shouldn't have even lived for 4 DAYS!  That's a miracle in itself.  Seriously.

Even the doctors are stunned that Chrissie is alive.  Her entire pulmonary system is really messed up.  She had NO ulmonary artery, NO pulmonary valves, NO blood flow from her heart to her lungs, a big hole between the lower two chambers of her heart, severe stenosis (narrowing) of the multiple collateral arteries (which are dental floss sized vessels with many kinks and narrowing throughout), pulmonary hypertension, something wrong with her aorta, she was surviving on a resting oxygen saturation level in the 70's (as opposed to ours being around 98), she had minimal blood flow to her lungs (which was being sent there by God-made vessels that were working independently of her heart), weak lungs, and the list goes on and on and on.  I don't comprehend 1/100th of what all is wrong with Chrissie's entire pulmonary system, but I do know that it was so extremely "messed up" that it's a completely obvious MIRACLE that Chrissie survived past birth, much less the 4 years she's been on this earth!

Chrissie has only been in our family for 6 months.  She has an amazing story of how God got her to our family, which goes back to Chrissie capturing the heart of a lady whose husband works at the US Embassy in Belgrade, Serbia.  (The lady visited Chrissie's orphanage, and apparently Chrissie convinced this woman to find her a mommy and daddy, at the ripe age of two!)  This wonderful lady advocated for Chrissie, and found Reece's Rainbow, an American group who advocates for Down Syndrome orphans and other special needs orphans who are not as likely to be adopted due to special needs.  Chrissie was going to be adopted by two different families at two different times, but the outlook wasn't very good and would require extensive intervention and lots of time in the hospital, etc.  (Most cardiac specialists responded very negatively to the Serbian hospital's diagnoses of Chrissie:  Pulmonary Artery Atresia with Tetralogy of Fallot and Stenosis.  One specialist's nurse told me that condition wasn't compatible with life.)  But God said to go get Chrissie regardless.

So we did.

And our lives have never been the same.  We have experienced a joy that we've never experienced before, all from the rescue of our CHRISTyn Joy!   And God has been so good to pull together an entire highly capable medical team of Christians who have been rooting for Chrissie from back before we ever got her!  God was in the background making all kinds of connections with the exact cardiologist, cardiac surgeon, and even nurses and ECMO specialists as we prayed and figured out how to get our daughter home.  We even had a medical escort from Oklahoma who stepped in to volunteer to escort Chrissie home from Serbia (thanks, Debi!).  Debi still sends Chrissie sweet surprise packages in the mail, and just before Chrissie's surgery, Debi mailed Chrissie a hand-made baby doll who has a pacemaker!!!  (She also sent all kinds of medical supplies for Chrissie to play doctor with on her new dolly!!!)  THANKS DEBI!  Dr. Porisch (our God-sent cardiologist) has prayed for Chrissie for way before she ever even met her!!!  It's clearly God who has pulled this entire team of medical professionals together to care for Chrissie, and, of course, the team He was pulling together behind the scenes just "happened" to be in a city that's only 2 hours from our house.  Many families have to travel to other states to get expert specialized medical care, and we're just 2 hours from home.  God is good!

Regarding the questions about a heart transplant, it is my understanding that a heart transplant would not help Chrissie because it's the entire pulmonary system that's messed up.  Simply replacing Chrissie's heart with a new one wouldn't fix the multitude of other pulmonary issues, and it's my understanding that Chrissie's dental floss sized arteries couldn't support a new heart because the pressures would be too high with a new heart's pumping capacity.  Chrissie's lungs have never had this volume of blood flow before (with her mended broken heart), and the lungs are in shock as it is.  It's extremely complicated, but I trust fully the doctors and medical staff who God has hand-picked to surround Chrissie.  They know their stuff, and they want her to live just as badly as we do.  I have no reservations AT ALL with their decisions.  I appreciate (and thrive on!) all of the questions and suggestions and stories of encouragement, but the fact is, Chrissie is completely unique because children just don't live as long as she has with her same multiple pulmonary defects.  It's much easier to fix these issues in a baby or even a toddler, with surgeries begun at a much younger age.  With Chrissie being 4, there just aren't other cases out there for the doctors to "study" or compare to since they just don't live this long without prior interventions.  (Chrissie's body has made compensations to keep her alive using the 3 main God-given vessels that were providing oxygen to her lungs independently of her heart, so there are blood pressure issues, flow issues, capacity issues, etc. that Chrissie's body has believed are "normal", so when things got fixed, the new normal was anything but normal to a child who has lived abnormally for four years.)  I am not sharing this to discourage you from encouraging me with your true stories of life after ECMO and open-heart surgeries, but it's the truth, and that's why it's totally in God's hands.  No one can predict the outcome but God.  We know He's the only one with the ability to heal this, and we know He is capable if He so chooses.  God has a mighty plan and purpose for Chrissie's life, and whenever God chooses to take her to His Home, it will not be a day before her time, which is His perfect timing.  Chrissie's days of life have always been numbered by God and God alone, and He won't allow that to be one day off from His perfect timing.  Chrissie's life will not be cut short.  Chrissie's life will be perfect, no matter how many days on this earth God gifts her.  She's already been given about 1,600 days of "extra" life since she shouldn't have technically lived but for only a couple of days after bith.

Chrissie's an amazing miracle of God and God alone, and we are so grateful that He chose us to be her forever family.  I still can't believe that Matt and I are God's chosen mommy and daddy who Chrissie longed to have hold her and love her and hug her and feed her chocolate.  We are so unworthy of this precious gift of CHRISTyn Joy.  May God receive ALL of the glory for His miracle creation.

7 comments:

Stephanie said...

We have been following & praying for you since Chrissy's heart surgery. I just wanted to comment on the "month to wake up" comment......I am not there, so I can't speak directly to what was meant, but our son was in a similar situation. We were told that because the brain had such a shock, he would wake up in stages that could take awhile. First would be movement, but non-purposeful, then purposeful movement, then following commands (i.e. squeeze my hand,etc.) etc. We were told at one stage it would loook as if he was completely conciouse, but he would technically still be in a "coma". It can get very confusing, and everybody is different. I have faith that Chrissy has fought this long, she will surely fight her way back through this. This will most likely be a marathon, not a sprint (our son was in the hospital for 6 months after his first OHS). PLEASE take care of yourselves too.

Sending you lots of prayers.

Stephanie and CHristopher in IL

Matushka Anna said...

Goodness! I came very late to your blog (last Tuesday) and had no idea of the magnitude of Chrissie's cardiopulmonary issues! You are right, it is a miracle she's here. What you've listed is NOT compatable with life. It's very, very clear that God has brought her to this point. Whatever happens from now on is part of His plan too.

Lynn said...

Thank you so much for sharing more of the details of her health history. In an age when we take so many miracles for granted on a daily basis - and then we also sometimes minimalize the definition of miracle to include God's other means of intervention, it is rare to hear the word used accurately. But in the case of Chrissie's story, I don't think it can be overstated what a miraculous work the Lord has already done in her life and continues to do through her and through your witness. THANK YOU for sharing! Continuing to pray.

Karin said...

I got chills when I read Chrissie's diagnosis of: Pulmonary Artery Atresia with Tetralogy of Fallot and Stenosis. One of our daughter's had this same diagnosis in China and was sent back to the orphanage to be 'kept comfortable' until she died. But GOD! He sent her file to a doctor in Singapore who agreed to operate on her at age 18 months. She, too, had God-given vessels that enabled her heart and lungs to get the correct blood flow to keep her alive. I knew her heart and lungs were in bad shape, but it is hitting home a lot more to hear what Chrissie is going through. Continuing to pray that God will heal her heart and lungs!

Wife of the Pres. said...

Still praying for your family and Chrissie.

Catching up … what a beautiful post about Chrissie responding to her Daddy.

{{{HUGS}}}

Amber said...

Oh momma! I feel like I have a thousand things to say...none of it seems adequate. I've just learned of your miraculous girl...and wanted you to know that I am carrying your family to the throne! Holding you tightly...

P.S. I'm not here for the drama...I get it.

Jess said...

I stumbled across your blog. You are truly an amazing family that God has picked for your dear little one. I rejoice with you in accepting God's plan for her life. I am praying for your entire family as you make your way through this journey and want to thank you for your faithfulness and how it has impacted my life and my families. GOD bless you.

Jess, Aurora CO

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