What if God takes her from me?

I WILL POST UPDATES AT THE BOTTOM OF THIS POSTING

The most painful thing i have ever done, more painful than childbirth, is watch my kids go through pain. Right now we don't know what is wrong with Karly. We do know that her head is growing abnormaly.
It started last wednesday May 27th at a well baby checkup. I mentioned to the dr that her head was lopsided. She examined and got quiet. She then said.. "i'm going to go get a second opionion..." While she was gone i thought the worst... They're gonna come back with a helmet and tell me she has to wear it! I was so wrong. She came back with a sad look on her face... "we think she may have something call craniosynotosis, which is where the plates in her head that are supposed to be seperate (soft spots) harden prematurely" My heart sunk. I knew what she meant. I knew it meant surgery... I cried all the way home. She called with an STAT appointment to get an xray the very next day. When i got home i looked in my medical books and i googled it... Basically it has to be corrected, or her brain will get smashed and she will loose her eyesight and/or become mentally retarded and/or die! My first thoughts are... My good friend lost her baby after a way less invasive surgery at 5 months of age... He died in her arms!

The surgery it self goes something like this... they pull back the skin on your forehead and face, saw out the part of the skull that is fused, break it into little pieces, and put it back! This is a picture of the typical jagged incision. This is not a picture of karly!!!! This is alittle boy who went through the same surgery.

So you can imagine my fear... Terror actually. I told my husband i couldn't do... She is two months old... I can't... i won't.... What if God takes her from me? He sent His son to die on a cross for us... but HE KNEW THE HE WOULD RISE>... i get no guarantees... I can't do this!

After the Xray appointment she asked us to come back in to see her husband (also a dr) for an additional opinion. He said basically the same thing but we have to wait out the XRay. Friday the 29th the doctor called me bright and early with a sad sound in her voice... the xrays were back. They Radiologist said they couldn't confirm or rule out the presence of suture closer but that at bare minimum the sutures are too close together and the xray is not looking good... The Dr wants an emergency CT scan. We rush to a radiologist friend of my Dad's in Beverly hills that same day. We are there by 1pm... I cried the whole way there.... This is a picture of me holding Karly's chin still in her CT Scan... I was crying and hadn't showered in over 24hrs....

The radiologist read the report right then. He said he could RULE OUT closure of the sutures, although he is not use to looking at baby heads so has no way to know what the size of the sutures should be. He did confirm some pretty bad asymmetry of her head. Which leaves us with a whole lot of questions. Its possible she still has craniosynostosis and we just caught it early. In this picture the left side of her head is more round and more swollen.

In this top view of her head the right side of the picture is more round and fuller.

In this picture the side of her head on daddy's chest is bigger.

So basically we know not much, other than her head is abnormal in a bad way... Please pray for her... We have our 5th and 6th opinions tomorrow as well as a check with her primary Dr... We have fedexing of xrays to the Beverly hills radiologist and fedexing of CT scans to a Pediatric neuro surgeon... a word i would love to never have to say again...

UPDATE: June 1st- Dr called this morning said she is not going to continue getting 4th and 5th opinions and is going to just transfer her where she needs to be and that is Loma Linda Children's Hospital. I feel like that is great that we aren't having to push things but it also scares me that she is moving things along so quickly... maybe because its THAT serious...

Update: June 3rd- Karly's Dr called and said she is being referred to a pediatric neuro-surgeon. I guess i though she was just going to be transferred to a pediatrician at Loma Linda not a neuro surgeon... This is kinda scary! I asked if she thought that it would be best to see a surgeon because she still feels she MAY need some sort of a procedure and she said yes. So i guess we are still far from being done like i had hoped!