The neurosurgeon confirmed what we thought and she does have Scaphocephaly. This may not seem like good news but it is to us. Now that it has been confirmed by two doctors, the neurosurgeon and the plastic surgeon (both scrub in for the surgery) we know what we are dealing with. It’s the “what ifs” that have been the scariest part of all of this. The neurosurgeon also reassured us that we do not have to worry about any retardation or developmental delays. Because there is no history of this in either of our families and only the one suture – the sagital suture- is fused we have nothing to worry about. The neurosurgeon also told us that we do not have to worry about brain swelling – at the appointment with our physician she told me to watch for swelling in her brain by keeping an eye on her one soft spot (which I still think is incredibly horrible for a doctor to do. I don’t think that I have ever been so scared, stressed or worried than I have been in the past week while watching for brain swelling in my baby girl.)

The biggest update we have for you though is that after meeting with the doctors we have decoded to go with the other surgery that Tim mentioned earlier, the more invasive open surgery. This will mean that they have  to make a large zig zag cut across her head from ear to ear. This surgery will require a day more in the hospital for recovery but when she is discharged from the hospital her head will look normal, sans the scar. They reassured us that the surgery is far worse for the parents than the child and that she will be back to her normal self in a week to 9 days. Because her skull is still so plyable and soft they will not do the surgery until she is 4 months old. That puts us at a January surgery date. This surgery will be tough but it also means that she will not have to wear a helmet for a year.

We were very impressed with the doctors. The hospital was incredible. All of the staff was so nice and incredibly effiecient. We registered, met with 2 different specialists, Elise had pictures taken of her  head and we scheduled an appointment for a CT Scan for next Tuesday all in an hour and a half.

Tim and I both left the hospital today feeling lighter. I still may break down in tears when I talk about all of this but those tears are manageable now because we know what is going on. We have a plan. We have great doctors taking care of our little girl. It is still scary but we now know that everything will be okay. And that is good. Very good.

We will be going to Mayo Clinic in Rochester, MN this Thursday. We will be meeting with two specialists for a consult and from there they will be able to help us make a plan for Elise.

We will update you all again when we have more news.

Thank you all for your support, kind notes and emails and especially your prayers. Please keep praying for our little girl. She has a tough road ahead of her but she is strong and we are confident that everything is going to be okay. We were blessed to get into the best doctors -not just in our area but they are some of the best in the country. Again, please keep us all in your prayers and if you see Michael and Patrick please give them as much extra love as you can. This will be hard on them too.

I hope they make you smile too.

Our midwife became concerned about the shape of Elise’s head and a ridge that had begun to form at the top of her head, as well as the fact that she didn’t have a soft spot at the back of her head.  We took her into our doctor on Friday, and after feeling Elise’s head our doctor has referred us to a specialist in Craniosynostosis.

Below (along with some new pictures to help us all cope) are some links with information about what the doctor and midwife believe is wrong with Elise.  Nothing has been confirmed yet, but everything we’re seeing seems to be confirming it.

http://en.wikipedia.org/wiki/Craniosynostosis

http://saggitalcraniosynostosis.com/

The usually fibrous connection between two bones in Elise’s skull have fused together which won’t allow for the normal expansion and growth of the brain and skull.

We’ve read of two options for surgeries.  One which requires large zig zagging sutures from ear to ear, with plates and screws to hold the appropriate shape of the skull.  The other is the more likely option, since we were lucky and our midwife caught it when Elise is so young, is a minimally invasive surgery with a small incision which will cut the fused suture to allow the bone to grow the way it’s supposed to.  After the surgery she will need to wear a helmet for 3-4 months with weekly adjustments to make sure her head grows into it’s proper shape.

Everything else is right on track with Elise.  She’s making eye contact and even smiling (as you can see in the video), and while this development is scary we’re very confident that it’ll work out.

Elise’s First Smiles

more pics here

more here

Thank you. We are blessed to have such wonderful family and friends.

more here

Beth and her friend Jade made also made the trek over to MN to meet little Elise. They made a 9 hour detour on their way to CO for a few minutes of cuddling Elise.

Someday Elise if you read this blog you must note how much everyone loves you. Before they even met you, family was driving hours and hours just to snuggle you and love you in person. And Michael and PJ, if you read this – have no fear you were able to steal the spotlight and manipulate everyone into playing trains and puzzles.

Here are the rest of the pics from the last few days.

You can still find all the old pictures from the pictures link at the top of the page.