Our Precious Darling
Dakota Reeann Willis was born on October 9th, 2006 at Tift Regional Medical Center. She weighed 5lbs 13 ozs and was 20 inches long. She was born at 9:10 PM and at 9:11 PM she had everyone in our family wrapped around her tiny little finger. When she was born she was a perfect little gorgeous baby with the biggest brightest blue eyes I've ever seen. It was love at first sight. Dakota came home and blessed our home and family with her own little unique personality and that gorgeous smile that would melt your heart the instant you saw it.
In December she was sick and the doctors told us that she had a respiratory virus. After coming home from the hospital, we noticed that she didn't move much anymore and she was pretty floppy and she hadn't tried to pick up her head yet. When I went to her pediatrician, she just said it was because she was a preemie. Finally, in January her pediatrician sent us to a neurologist in Macon. He admitted Dakota to the Children's Hospital to run some test. There were a few diagnosis' thrown around but nothing definite without tests. They did a series of blood tests(which we weren't told what they were testing for) a Spinal Tap, A MRI and a CT. We went home a week later with no diagnosis. We had a follow up appointment with a neurologist in Atlanta for an EMG and Nerve conductive test, because Dakota still hadn't improved her muscle tone. During the test she turned blue and nearly stopped breathing. I had never been so scared in my life. We were rushed with her to Egleston's Children's Hospital and there they began testing again. They did a swallow test and found out that Dakota wasn't swallowing all of her formula and some was seeping into her lungs. Since that could cause pneumonia,they put a NG tube into her stomach to feed her. We left there a week later with the tube still in, but no diagnosis.
In March she became sick again and when we took her to our local Hospital they had her transferred to Macon because she quit breathing again. At this point we still hadn't heard anything from the tests they had ran the first time we were in Macon. Crazy us, we thought no news was good news. Boy were we WRONG. On March 10th 2007 we recieved the diagnosis of Spinal Muscular Atrophy Type 1! The results had been a while and the STUPID, STUPID neurologist just didn't follow-up with the tests he ran, therefore, her diagnosis had just been sitting there for atleast two weeks. After "trying" to get over the shock of the diagnosis we were told to go home and love our baby and spend as much time as possible with her. We weren't told about all the "other" options that parents have for their children with SMA. When we did find a doctor that knew about SMA and was willing to try the "other" options, Dakota was back in the hospital again. Only this time it was worse. She was already on Oxygen and her condition was getting worse by the day. She had to have surgery to have a G-tube put in and she was put on a ventilator to help her breath and "give her a break". Looking back now, I see that James Logan, once again chose Dakota's destiny for her. He should have never let her have that surgery. He had been telling us for months that she couldn't have that surgery if she was sick. When she was well, he would never schedule the surgery for her. Once she was back in the hospital, SICK, he scheduled it. He knew what would happen. I should have been her voice and I failed. There isn't a day that goes by that I don't think about how I could have prevented her from having surgery. However, when she was put on the ventilator for surgery, I saw how tired Dakota was from breathing on her own. Maybe that was God's way of working it all out HIS WAY. Dakota fought for so long. There were several times at home when she quit breathing and we thought we were losing her. Needless to say, I feel that God's Will was done. When Dakota came back from surgery, I was heartbroken to see her hooked up to all those tubes. We first tried to take her off the vent on May 13th. My first Mother's Day. What a horrible way to spend that day. I was there when they pulled the tube and within a few minutes, I watched in horror as Dakota's heart rate began to drop rapidly. My heart felt like it was going to drop to my feet at any moment. The second attempt was on May 23rd, 2007. Dakota went straight to the bi-pap machine when they pulled the tube. Somewhere around 9pm or so, Dakota was having a hard time dealing with the treatments and her airway was beginning to collapse again. She came off of Bi-pap and was put on a thermal thing. She was wore out and tired. Her daddy and I decided that she and God would choose what her destiny would be. If she was ready to go home, we would let her.
Dakota took her last breath in my arms and was holding her daddy's finger on May 24th, 2007 . She was surrounded with the people that loved her most. We lost her at 4:39 AM to the "thief" SMA. She will always be remembered and we will forever miss and love her! As of today, a month later, I'm struggling with losing her and it does seem to get worse every day. I'm sad and mad at the same time. I know that Dakota is a much better place and she has wings and no tubes attached to her pretty little face. Knowing that I will hold her again one day gives me Hope.
Dakota, Mommy and DaddyA Poem for Dakota
Sometimes when I saw you look up at the sky
It’s as though you were seeing angels, fluttering by.
You smiled and you laughed with your eyes aglow,
Did you have your own secrets that none of us knew?
Did you see the angels sent from above?
Were they here to remind us of God’s true love?
I’ll never forget that horrible day
When they said you would never walk, run or play.
Little hope for a cure existed they said.
But you took our hand, down that path we were led.
Did you see the Angels guiding our way?
Did they know we were thankful for each precious day?
Some people search their whole lives and they ask,
What is my purpose, my reason, my task?
But when you are given an angel on earth
The mission is clear, it defines your self-worth.
Did you see the angels lighting the night?
Did they give you the strength to go on with this fight?
The things you taught us are endless you know.
The love that we feel just continues to grow.
We were lucky and blessed to have every day,
An angel from heaven to show us the way.
Did you see the Angels sent from above?
Did they know that you taught us the meaning of love?
The ache that I feel in my heart every day
Is from knowing that you were so suddenly taken away.
To have known you and love you, is worth all the pain,
And if given the chance, I’d do it all over again.
Did you see the angels leading the way?
To God’s Kingdom, where We’ll hold you again someday.