Kristina Rachel

Kristina Rachel

Krissy
Krissy, 13 years old!
Full Trisomy 18

 

Our daughter Kristina was born with the rare condition known as Trisomy 18 or Edward’s Syndrome. In simple terms this means that Krissy has three number 18 chromosomes. Sadly, many babies with this syndrome do not survive to birth. Of those that survive only about 10% of them live to celebrate their first birthday. Krissy is now 13 years old! This is her story…

While there are many memories and milestones in our life with Krissy, I’ll begin with the day we learned that our sweet baby girl might not survive to take her first breath. The day our world shifted…

It was a typical gray day in mid November. After dropping my oldest son off at school I pulled into the elementary school to drop off the middle two, late, as usual. While the boys gathered their backpacks and lunches and scrambled out of the car excited about their day, I absentmindedly looked up and noticed the “Little Bus” pulling up to the curb to drop off a student. You know the bus the bus I mean.

I sat there watching, my hand casually cradling the about to be “slight bump” of my little girl, I wondered with awe and that unnamed fear we experience when witnessing things we don’t understand and are not quite comfortable with, “How on Earth do those parents do it?” That afternoon, I received notice of my lifetime membership in the club…

Over the next few weeks I will fill in the blanks of what I refer to as Limbo. Those months of worrying, and wonder. Those months of tears and anger. The highest of highs and the lowest of lows. All on the journey of bringing our daughter safely into this world. Those months of walking two paths: The path where we plan for our child’s birth. And the path where we plan our child’s funeral. You see, we were given no hope. We were told we would not bring our baby home. We were told she was not a “viable” pregnancy. We were offered genetic counseling. We were offered the opportunity to “interrupt” our pregnancy. The one thing we were not offered, was hope. And Hope was the one thing we desperately needed. Fast forward…

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Krissy
Krissy at 5 days!
Full Trisomy 18

 

 

Krissy was born March 25, 2000 at Tacoma General Hospital in Tacoma, WA. She weighed 3lb 10oz. After spending several hours getting to know her family she was taken to the Intermediate Care nursery for monitoring and evaluation. They weren’t really sure what to do because they were expecting her to die and this tiny child was all about life and living! They placed an NG tube to make certain she was getting enough to eat but aside from that and being very tiny she was not really different from any other newborn. They kept her in the Intermediate Care nursery for a couple days and then she was moved into the room with Mom.

 

 

Krissy just home from the hospital. 7 days old.
Krissy just home from the hospital. 7 days old.

 

At five days old Krissy went home. There was nothing she needed that we couldn’t do at home and we knew that at home she would be surrounded by the love and energy of people who believed in Krissy and in her possibilities!

 

 

Krissy in Kindergarten!
Krissy in Kindergarten!

 

 

 

What can I say?  The girl has always had an attitude and so far it has served her well!!!

 

 

 

 

 

 

 

Krissy_010813-4Clearly this is just an introduction. There is certainly much more to Krissy’s Story and we’ll be sharing some of the many twists and turns and especially the blessings of our Trisomy Journey in our blog! Stay tuned!

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