Friday, August 30, 2013

My birthday wish!

My birthday isn't until late November, but Lila and I already had a serious talk and I only asked for one thing for my birthday.
When Lila was born, she came out with a big open wound on her wrist. It looked like a very deep cut and her little right hand and fingers were really swollen.
No one knew what happened, and my Dr said in all the 20+ years he had been delivering babies, he had never seen anything like it.
She was protecting that little hand by pulling it away and always cradling it up by her face.
The night was born, and before I had even seen her while I was recovering, they had called in her pediatrician, a hand specialist, and a plastic surgeon to look at her sore and see what was wrong.
No one knew what had happened or what was wrong. They wrapped it up in a little cast-like bandage set up a few Dr appointments for us to go to.
The next couple of days while we were still in the hospital they taken her for blood work and Xrays and still no answers.
By the time we left, the swelling had gone down and we noticed that she didn't have any movement in her right hand.
The first couple of days home were extremely difficult for me.
When I would pick her up I wouldn't notice anything, but anytime anyone else would pick her up I would just start bawling uncontrollably and not be able to stop. When someone else would pick her up, I would see her poor little hand just dangle and not move. You have to pick it up and put it on her chest or it just hangs. This was devastating to me and all I could think about was all the things she wouldn't be able to do. I know that sounds really negative, but that's the truth and where my thoughts would go.
She wouldn't be able to crawl.
She wont be able to pull her self up.
What if kids make fun of her?- This one really got me.
We live in such a cruel world.
I lost lots and lots and lots of tears over this hand. The hardest part was having no answers.
Also as time went on and swelling went down we noticed a big mass in the same arm on the forearm.
Her first week home we had an appointment at Primary Childrens for an ultra sound. They looked at her entire arm, especially the mass, and her little hand.
I had cried the entire way there scared to death what they were going to say, but I wanted an answer.
They turned the lights back on in the room and the Dr looked at us and said, "I don't know what this is. I can tell you what it isn't, it isn't cancer".
He explained to us that there was blood flow to her hand and through her arm and that the muscles and tendons were all connected correctly.
He guessed the mass to be a "fatty necrosis" and that it could take years, but the body should naturally absorb it over time.
We went back to my parents house after the appointment and laid on their guest bed and I cried and cried while Russ took care of us.
That night on the drive back to our house I think I cried harder and longer than I have ever cried before. And then I saw Russ cry for the 4th time ever. Weirdly, it comforted me to see him cry too.
We had a few more Dr Appointments and few more feet pricks.
The only pictures I have of her going to the Dr are in the car seat. But she just looks so cute and tiny all buckled up!

Dang foot pricks! But she is growing and gaining weight!
FINALLY our appointment back at Primary Childrens with the hand specialist came.
We had to wait 2 weeks which was killing me, but everyone said we were lucky, that some people wait months to get in!
We really liked the Dr and he diagnosed her with Radial Nerve Palsy- HOPEFULLY a temporary paralysis of her right wrist.
He started off telling us this was a result of an Amniotic Band and in most cases results in amputation.
But then he said we were lucky and her hand was still alive. Why wouldn't you start out with that info!?! Instead we were thinking we were going to have to amputate her hand :(
Amniotic bands are fibrous string like bands in the womb that can wrap around the baby restricting blood flow. Fortunately, her band wasn't wrapped long enough or tight enough to kill the hand.
Limbs can either be amputated while still in the womb and the mothers body absorbs the limb, or the baby will come out with a dead limb that will need to be amputated.
The Dr told us to give it 3 months and see if she will get movement back. If nothing happens in 3 months, they will do some kind of therapy or splint and hopefully in time she will be able to use her hand.
Finally an answer. Although sad, I was happy to have an answer and hopeful she would get movement.
After her appointment, we had an hour before I had to go to the Dr for my check up. So we grabbed my favorite fast food- Chick Fil A, and went to the park for her first picnic.
This is kind of an awkward picture because I am midway through adjusting her, but we don't have a ton of pictures together so Im still posting it!

She seriously means the world to us.
Her sore is completely heeled and no more bandage!
Her skin is a little dry from being in a bandage for awhile, but we are crossing our fingers every single day that she will get movement in her hand.
I was working with her hand the other day while having our talk about my birthday wish and I realized that even if she doesn't get movement, I know she will easily adapt. She will figure out a way to crawl and pull herself up, and if people make fun of her, I know she will have a great attitude to only make her stronger.


  1. Chels, my heart just broke as I read this. What a scary thing and it makes it so much harder that they don't know what it is! Having a baby is amazing and scary at the same time. You just want so bad for everything to be perfect! I love what you said at the end. Everything will work out! I'll be praying for you and your sweet baby girl!

  2. That picture of her on the blanket is my favorite!
    Love that little baby girl!

  3. That is seriously crazy. I have never even heard of this happening before. She is a very beautiful baby, and she is so blessed to have such a great family. She will learn to grow and adjust as she gets older. Babies are amazing! Keep your head up....she is a beautiful baby girl!

  4. With your beautiful, wonderful, and optimistic attitude, you'll teach your daughter to handle life the same way. :)

  5. She is gorgeous! And you already look fabulous...what's up with that? I'm still trying to get back to pre-baby weight and Bucky is 9!

  6. I was bawling as I was reading this. Remember how Owen was born with two holes in his heart? And how we didn't know if he would be able to be active or play sports or grow at a normal rate? It really is the hardest thing in the world watching your child have to deal with an illness or an abnormality. It's heartbreaking BUT Lila will be a strong, confident, beautiful little lady regardless of what happens with her hand. Love you Chels. Wish I could give you a giant hug right now!