She was born, blue. She needed to be bagged to breath. Quickly, things were not as we expected.
She went on to spend almost two months in the NICU of our local children's hospital.
On December 6th we were given devastating details of her health complications and a bismal life expectancy.
She got a trach just a few days later, Open heart surgery 10 days after that and she remained on a vent unitl just days before she was discharged from the hospital and also received a gtube for feeding a couple days before coming home.
That first year...wow...I felt like I'd never had a child before. This was a whole new ball game. Our home was filled with multiple medical machines and equipment just to keep our daughter alive. It doesn't seem real to me at times when I look back.
We had nursing care in our home at about the four month mark. That did not end well. We had multiple disciplines coming in to perform OT/PT/and DT several times a week.
She only had one return visit to the hospital and it was September of that year. She spent roughly 7-10 days in our local hospital after an emergency room visit to our town hospital. I thought she was dying that night before we went to the ER.
That was her first return home on oxygen which she needed for months thereafter.
We never took her out of the house that first year except to dr appointments and once to church ( which was so stressful I never did it again)
She slept A LOT. I think she barely weighed more than 13lbs when she was a year old and she's still a tiny tiny girl. I did take her to Sears for one year pictures and cried while the girl tried to show them all to me on the computer.
I could give you more medical details and such, but this is just a snapshot. One of the most difficult years of my life.
Our lives changed forever that day. We were told her life would end by the age of one or two but here she is today..( i took this picture just before writing this) fragile, complicated, sweet, and loving...bring it on 10! We're ready and waiting!!
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