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Claire'sMom
03-22-2008, 02:27 PM
Claire had her surgery almost 6 months ago, but I was recently introduced to this site, so I thought I would share our journey.

The day after Claire was born our pediatrician came into my room at the hospital and said that she had just seen Claire. Our pediatrician said that she was concerned about a ridge on Claire's forehead, and that we will want to watch it. I thought to myself, I'm sure that it will go away, it is because I had to push for 2 hours, that is why their is a ridge. At Claire's 2 week check up the doctor said the same thing. I had taken Claire to the appointment by myself, so when my husband had come home from work and asked how the appointment was, I told him what the pediatrician had said about her head. He said to me, Claire is fine. As Claire continued to grow it seemed to me that the ridge was getting a little bit worse. I told my husband that he needed to go with me to Claire's 2 month check up as I wanted him there to discuss Claire's head.

At her 2 month check-up we discussed Claire's head with the pediatrician. She told us that she was pretty sure that Claire's metopic suture was closed. She sent us for a CT scan. When we went for the CT scan and they had brought Claire back out to us, the nurse said to us, "Your road is just beginning." I remember hearing that and thinking surely he does not know what he is talking about. But somewhere down inside of me, I thought he was right and that my baby was going to have to have surgery. That nurse told us the names of craniofacial doctors here in Dallas, he said you have the best right at your fingetips, which I was thankful to hear. We came home from that appointment and I instantly got on our insurance website to see if the doctors he was referring to were covered by our insurance, and they were. The results of the CT scan went back to our pediatrician, and she gave us some options. We chose to take Claire to see Dr. Genecov at Medical City-Dallas. I remeber calling and making the appointment for Claire and thinking oh he will just look at her and tell us that we do not have anything to worry about. But that was not the case. After Dr. Genecov had reviewed the CT scan he came in and told us from the beginning that he would be doing surgery to correct Claire's head. I remember him throwing out all of these large words, and I was trying to absorb everything. After we saw Dr. Genecov Claire had to have some pictures taken and head measurements. While waiting for her pictures to be taken, their was another family in the waiting room with a daughter about the same age as Claire (3 months at this point) and the dad said to me, do you mind if I ask, "Does your daughter have metopic synostosis?" And I thought, wow those were the words that I just heard from the doctor, I said yes, they were here for the same thing, except they had traveled from Missouri. I then was very thankful that we were here.

Claire was scheduled for surgery September 24, 2007. We had arrived at the hospital, the nurses had done all of the paperwork and we were in the operating room waiting room. Dr. Genecov came to see us and said that he had some bad news. Our neurosurgeon had an emergency and could not make it. I remember thinking, you have to be kidding. Dr. Genecov said his office would call us and reschedule for later that week. We rescheduled surgery for Thursday of that same week. By this time Claire had come down with a little cough. We arrived at the hospital on Thursday morning and Claire was wheezing. The anestheologist ordered a breathing treatment, but he was not satisfied with the outcome of it, so he said he was calling off the surgery. I could not believe that we were going to have to do this all over again. So, the third time is a charm right, we were rescheduled for surgery on October 8th, 2007, Claire's seven month birthday. Finally, we were able to go through with the surgery. By this time, I was just ready to have the procedure over with. Claire came through the surgery with flying colors. We are now almost 6 months past the surgery and you cannot even see her scar.

I will post some pictures after I resize them. :wink

If their is anyone that is coming to Dallas for surgery, I am available to help in any way that I can.

mrs j
03-22-2008, 03:03 PM
Oh wow thanks for sharing your story, cant wait to see her pics, she is beautiful and looks fantastic.xx

EmmaLacey
03-22-2008, 03:30 PM
Thank you for sharing your daughter's amazing story. Wow, I can't imagine having to reschedule TWICE!!! Happy to hear that all went well and she is doing great. Can't wait to see more pics. Claire is adorable!! Welcome to this wonderful site.

Springy
03-22-2008, 08:37 PM
That is a really good story! I cant wait to see the pictures!

Janet
03-22-2008, 10:14 PM
Great story....I would of had a breakdown if Fi's surgery was cancelled twice. Can't wait to see the pictures. Thanks for sharing.

HaydensMommy830
03-23-2008, 01:12 AM
Hi! Glad to hear the 'full story'. I've been busy but I'll email you sometime this week...I hope Claire has a great Easter!

Candice
03-23-2008, 09:28 AM
Thanks for sharing your story, it sounds so much like mine!!! (Kendall's was only rescheduled once...but it was because the NS had a family emergency!!) I also had the same feelings....nothing is wrong, they'll tell us she is fine. The NS & PS didn't even have to look at her CT scan before they told us. "Oh yes, she is a sagittal baby". Like you, everything was a blur, and I was numb while all of those big words were being thrown at me. I'm so happy you found us, and thanks for sharing your story!!!! :hugg

Claire'sMom
03-25-2008, 12:24 AM
Here are some before and after surgery pictures of Claire. We never really realized how close her eyes seemed to be until after her surgery.

Jen

mckennasmum
03-25-2008, 05:43 AM
beautiful photos, she looks great!