Annie’s Story

As told by her mother Rosalind.

 

It’s not about us anymore, we knew that as soon as we had our first child. Annie has taken that to new levels; this is all about her.

 

We used to live in Guam. I remember the day clearly, sunny as always, anticipating the gender scan of our third child. April 23, 2012 was my appointment. We had the boys with us, and we were all excited to find out the gender. The appointment was quite long. The tech mentioned it looked like a girl but did not spend much time on the topic, and then he invited the doctor in. He sat down and showed us on the screen the omphalecele, which is a hernia in the abdomen. My heart dropped and my eyes filled with tears. He mentioned it looked like there was no heart defect. That was good. A heart defect would make things worse, much worse.

 

The dates and times are a blur from that moment on. This ultrasound was followed by tests and meeting new doctors. Everyone had their own opinion of what we should do and the type of life this baby would have. The conclusion of the tests were in fact this baby does have some sort of heart defect, and the outcome of our baby’s life was very bleak. The combination of the two is usually fatal.

 

I could not believe the news we were getting. Travis and I knew I would be leaving the island to get a second opinion but all the same, we were encouraged to have genetic testing as our window of opportunity was getting smaller. We decided it would just give us a few more facts. After going through what was one of the worst weeks of my life having, some of the most wonderful women held my hand and carried me through, and we made it to the results day.

 

The results were negative, and so we decided we had a really good chance to help this little girl fight for her life. After learning and reading about the long term care of children like Annie, we knew we could no longer live on Guam. The boys and I left as soon as possible and went to live in Alaska with my parents until Travis could pack us all up and transfer his job to Seattle. I had an appointment down in Seattle right away to confirm suspicions of a heart defect. Many appointments followed as they tried to decide what exactly was wrong with her heart. The best guess they had was something called Double Outlet Right Ventricle (DORV). They could modify her heart for a short time, but she only had half a heart, and at some point they believed a transplant will be necessary. We had a couple month to let this all sink in, and I remained optimistic, hoping and praying for a miracle.

 

After Annie was born, she had surgery and was put on the lung bypass machine. She couldn’t make it on her own, and while she showed little signs of improvement, but on February 4, 2013, when she was just shy of a six-months-old, she went home to our Heavenly Father.

 

Annie taught so many medical personnel with her complicated issues and trialing of medicines. I just wish she would have gotten better and had not been so eager to help, but that’s my girl and who she is. We knew from the beginning that she was on borrowed time. No one thought she could be born much less, live. I think we all knew she was very sick, but she roped everyone in, and we fell in love. We were so used to her in our lives, and now she is gone. I’m not sure there was a day in her life where she did not feel pain, but she still had a lovely personality. She just wanted her binky and to hold hands, and in the end that is what we gave her as she went home to our Heavenly Father. She was so little and touched so many lives, living her whole life in the hospital.

 

My sister and I rewrote these lyrics to a new Zac Brown band song called Sweet Annie. Maybe it may resonate with other families living their lives with a child in the hospital.

I’ve been strong

For so long I will remember

Crazy days and late night stays seem to be my line of work

Believe me when I say, I will be with you forever

This baby’s had all she can stand, time to lay this body down

Sweet Annie Can I stay with you a while

Cause this roads been putting miles on my heart,

Sweetheart I’ve been livin in a fantasy

But one day Lightning will strike

And the dark will turn to light

Don’t’ give up on me Sweet Annie.

Sweet Annie I know I promised you a life

But an empty bed and the words I said don’t carry any weight

If I could take back yesterday,

Find a way to start it over

But the Faith I have found, is gonna turn this life around and

I pray it’s not too late Sweet Annie

Can I stay with you a while

Cause this roads been putting miles on my heart,

Sweetheart I’ve been livin in a fantasy

But one day Lightning will strike

And the dark will turn to light

Don’t’ give up on me

What will be will be Sweet Annie.

Turn out the light

These hands alone to hold you

Fall all over you

All over again

Wish you were closer so I could hold you

My heart still beats fast for you All over, and over again

Sweet Annie Can I stay with you a while

Cause this roads been putting miles on my heart,

Sweetheart I’ve been livin in a fantasy

But one day Lightning will strike

And the dark will turn to light

Don’t’ give up on me Sweet Annie.

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