Thanks for helping Heal the Bern!
I was born Wednesday, October 3, 2007 at nearly 30 weeks gestation weighing 3 pounds, 9 ounces, 15 and 3/4 inches. I have lots of hair and energy for my age. I have three older sisters and their names are IzzyB (4), Sadie, and Lucy (twins, 3) and a dog named Fergus. I have Trisomy 21 (Down syndrome) and was born with a complete AV canal defect (balanced AVSD).
After 57 days in the NICU and 10 days of hospitalization in February for RSV, I finally got to have my heart surgery in Ann Arbor on April 10. After we thought it was all fixed and I was about to go home, I took a sudden turn for the worse and had to have a second heart surgery on April 25 to repair my mitral valve. We left Ann Arbor on May 24.
I was hospitalized for a couple of days in Traverse City for pneumonia at the very end of May.
By the beginning of July, I showed more signs of respiratory distress and was again taken to the ER at Munson Medical Center where I was treated for sepsis, rapid respirations, and signs of potential heart failure. I spent 2 weeks at Helen DeVos Children's Hospital in Grand Rapids until we decided it would be best if I were in Ann Arbor to be closer to my surgeon at the University of Michigan. I love her, so I didn't really mind the ride even though the survival flight team wasn't so sure I'd make it.
On July 21, I had my 3rd open heart surgery where I received a prosthetic mitral valve. Even though I am doing really well now, there were days just after this last surgery where the nurses told my parents they could not care for me anymore. Every time they tried to perform basic care, I would go into cardiac arrest. All but one doctor said there was nothing else they could do for me to keep me alive. After being placed in a pentobarbital coma, receiving regular doses of ketamine, and getting LOTS of prayers, I left death's door and started recovering from my severe pulmonary hypertensive crises and reactive airway disease.
My heart now has good function, but I continue to battle my chronic lung disease. I can do that. I eat from my bottle, play with toys, and define the word miracle each time I look in the mirror. Now you know why I love my doctor SO much! I just can't wait to grow up and be a little girl!
It has been four helicopter rides and over 200 days in the hospital (most very far from our home) since my mom's water broke on September 17. My parents tell me I have a lot of friends and family who love me and care about me very much. I can't wait to meet you all!
Lots of love,
Bernie
Your donation is helping the Smith family with current and continuing medical costs. Please click the donate link below! Thanks for your generosity!
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Hello, I’m Bernie Carson Smith!
