Wednesday, December 26, 2012

My grandbaby has Apert Syndrome.

My daughter had her baby girl on Christmas Eve.
She has Apert Syndrome.
Trying to cope.

I had no idea how difficult it was to watch my kiddo go through labor but I managed to be there the whole time and help her as much as I could. My younger daughter turned out to be a steady rock, a labor coach and she was awesome. My older daughter was strong, focused, and it was a great day...when the 'lil one finally started to make her appearance, the cord wrapped around her neck slowed it down a bit but then they got her breathing. We noticed immediately something was off. Hearing words like cleft pallet and webbed fingers as we're trying to peer into the little isolette as they clean her off made it even more scary. Her large forehead and big eyes were the biggest sign that she was not what we expected. The neonatologist confirmed that she had Apert Syndrome. So many other differences...

Apert Syndrome is a genetic disorder that causes abnormal development of the skull. Babies with Apert syndrome are born with a distorted shape of the head and face. Many children with Apert syndrome also have other birth defects. Apert syndrome has no cure, but surgery can help correct some of the problems that result.

It's difficult to adjust to a new mindset. I have yet to see her closely or hold her as she is in NICU (should go home next week.) I took a picture but when I see it, I often turn away. Mourning the loss of hopes/dreams for her and her future is...unknown. While she cleft pallet is not too deep and the fingers/toes may be fixed, it's clear her brain is quite different than the average one. I know I'll have new dreams and hopes for her and will love her very much no matter what.

My daughter is sinking...I don't know how to help her or what to say. I am trying to be there for her. She's pumping now and sending her milk to the nursery. I find myself crying a lot (not around her, of course.) I keep looking online for support groups or anything to help us with how we're feeling or what to expect in the future...not very successful.

My daughter says that she hears my younger daughter say that her baby is beautiful and perfect and loves the way she kicks her legs (as we try to peer through the window blinds into the nursery.) My daugher said she wants to see her baby the way my younger daughter sees her but knows it'll take some time to get there.

7 comments:

Floortime Lite Mama said...

I am so sorry to hear that
My heart is sinking .
Sending you much love and prayer at this difficult time (((((Robin)))))
Knowing u - u will be a rock to her in this time

Þorgerður said...

I am so sorry to hear this...sending you my love. One step at a time to build the rock that this little baby needs to grow up. So many hugs to you all. My best wishes to you all..stay strong...

Hot Mama said...

What beautiful, honest words. Sending you love, support, and hugs from up here. It will be a journey for all of you, albeit not an easy one. One moment at a time, one day at a time.
{{HUGS}}

Lauren Greene said...

Hugs for your daughter. I'm sorry to hear this. I know your older daughter will come to a place of acceptance, but you're right, it will take time. Stay strong. You are amazing!

Taryn said...

Hugs to you. So glad you reached out and we were able to "chat". Don't lose hope. You might be mourning the loss of certain expectations, but you will most certainly be blessed with new ones that you could never have imagined before now. I'm here to help in any way I can. Take care!

Julie said...

((hugs)) I wish I knew what to say. <3 <3 <3

Rachel said...

Oh goodness... I don't know what to say. What a heartache to suddenly experience something when you expected anything but that.

But children (especially babies) are such good teachers. Love really is the best treatment.

Thankful that your beautiful granddaughter is born into a family with this love.

Praying you get answers soon!