…also, railroad tracks hold a special meaning to our little family. My husband read The Little Engine That Could to our son daily until he passed away 5 years ago…
Here’s their story in their mom’s words:
Our story began when we found out we were expecting twins in June 2006. Our world was rocked when my water broke after only 26 weeks of pregnancy.
For almost three weeks Bennett David sustained himself in utero with trace amounts of amniotic fluid. His active twin sister, Ellie Grace, was thriving. This was just the beginning of the many sacrifices Bennett would make not only for his sister, but for all of us that love him.
At 28 weeks and 6 days pregnant they delivered our two precious miracles by emergency e-section. It was clear from the beginning that Bennett was struggling to survive and that Ellie Grace was going to survive. At 7 days old Ellie Grace was breathing completely on her own and at two weeks old they were just beginning to wean our little hero from Nitric Oxide, blood pressure meds and finally the ventilator.
After six months and 1 day of fighting for his life, we sent Bennett David back to his creator. There is a deep void in our hearts for all of the hopes and dreams we had for Bennett and Ellie Grace together. However, we are eternally grateful for every single minute we spent with Bennett and for the strength he gave to all of us.
As for Ellie Grace…she was discharged from the hospital less than 6 weeks after she was born. Today, Ellie Grace is a healthy, happy 4 year old. She IS a miracle baby and we are thankful for every single minute we spend with her!
In December 2009, after Ellie and I were both diagnosed with cystic fibrosis the March of Dimes was successful in it’s efforts to add CF testing to the newborn screening done in the state of Texas. Another huge accomplishment!
In September 2009 we chose to do IVF again which included PGD ~ preimplantation genetic diagnosis. This was done in order to prevent having another child with CF. After 28 weeks on bed rest, Cullen Spencer Kahl arrived at 36.4 weeks gestation. A true miracle and blessing to our family. Unfortunately, despite our extreme measures, Cullen is in fact living with cystic fibrosis.
And here is that beautiful, rock solid family that I was so privileged to work with:
She has soulful eyes dosen’t she?
Mom reported Bennett had those same eyes.
And finally, The Little Engine That Could, read to Bennett’s little brother.
And somewhere, somehow, I bet little Bennett was listening in too.
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