Nicki's Page

Update:
Look at Me Now!

My first cranial surgery was scheduled, canceled and rescheduled four times in 1998.  Every time I went in for my pre-admission labs, my white cell count was elevated to the point that my doctors did not feel comfortable to do the surgery.  On one of the cancellations I had tubes put in my ears because I was always with fluid in my ears and the doctors felt that this was causing the elevated white cell counts.

On July 16, 1998, I finally had my first cranial surgery.  My doctors, S. Anthony Wolfe, MD (plastic surgeon) and John Ragheb, MD (neurosurgeon) reshaped my head.  I lost 2 inches from the top of my head and the back of my head was rounded as well as my forehead advanced.  I spent one week in the hospital to recover and then I went home.  Two months after the cranial advancement, I was fitted for a helmet to help shape my head even further.  The helmet therapy is approximately a six month treatment (although my mom would like to have it on until I am completely mobile / walking on my own).

Later this year, November 5, 1998, I had a combination surgery.  I had my pinkies and index fingers released on both hands as well as eye muscle surgery and a deep ear cleaning.  In a few months I am scheduled for yet another surgery to separate my middle fingers and ring fingers on both hands.  If all goes well, I will have my thumbs straightened later in 1999 after they get a little bigger.  It has been a long road but I am getting there one step at a time.

Here are a few pictures of me after my cranial surgery, after my hand surgery, me with my helmet, my sister and I taking a bath and some of my birthday portraits.  I hope that you enjoy them.

 



My wife and I decided to have a child (our fourth and last). Our children range from 14 years old (Michelle), 10 years old (Steven), 3 years old (Erica) and soon to be Nicole.

After experiencing the births of our other children, we expected to have an uneventful fourth. The pregnancy went well. We had the same OB as we did with our previous daughter. All appointments went well. The doctor took measurements, listened for the heart beat, etc. We even elected to have an amniocentesis done because Raquel was over 35 (don't tell her I told you her age). The amnio came back normal female karyotype so we anticipated a routine scheduled C-Section and waited.

On October 3, 1997, we scheduled the birth of Nicole. The day came and we expected to be in and out like the pro's we were (after having so many children). We set up the camcorder and camera to get everything on film. The doctor proceded to perform the Cesarian and I could hardly wait to see what our daughter looked like. As the doctor was lifting Nicole, I immediately started snapping photos. I noticed that her hands and feet were purple and they appeared to be deformed. I realized that something was different about her but did not want to alarm Raquel because she was going under general anesthesia to have her tubes tied. I did not want her to go under worrying about Nicole.

Soon after her birth, Nicole was sent to the NICU (Neonatal Intensive Care Unit) at Jackson Memorial Hospital in Miami, Florida. When Raquel was still in the recovery room, the doctors came in and told her that our daughter was not normal. This sounds rude and harsh but how else can you be told that something was wrong? The NICU pediatrician diagnosed Nicole with Apert Syndrome within what seemed like minutes.

Nicole was beinig treated on IV therapy for a condition called "wet lung." This is from being born by Cesarian and is when the child inhales fluids during the birth (per our doctor, this is common in Cesarian births). As we sat and watched Nicole in the NICU, we were told that she was in the unit because of her wet lung and not because of her Apert Syndrome. This was difficult because we saw her physical differences and felt like she was in the NICU because of them.

October 3, 1997 was on a Friday. So that weekend Raquel and I comforted each other and reassured each other that things were O.K. We decided early that Nicole was sent to us with this condition for a reason and that we should not question it or even try to understand it. This is not to say that we did not have periods of crying and questioning. We each took our turn in breaking down and in comforting. However, we found our strength and are striving forward for the good of Nicole.

The week that followed was an overwhelming rush of information from doctors. We were introduced to a Genetisis, and Neurosurgeon, a Plastic Surgeon, a Therapists, etc. We were being educated (crash course) on caring for a child with Apert Syndrome. We were discharged from the hospital on October 8, 1997 and sent home.

Nicole's first surgery will be the cranial expansion when she is 6-7 months old. This surgery is to advance her forehead forward approximately 3/4 inch in order to have her brain grow into the front of her head instead of up and out through her soft-spot. This surgery helps the head grow into a more normal shape instead of the typical Aperts shape. Once the cranial expansion is done, Nicki will then have her index fingers and her pinkies released at approximately 9 months of age. Depending on the length of the surgery, she may possibly have her thumbs straightened as well. Her middle fingers and ring fingers will be separated later due to bone fusion. Then if all goes well, the next surgery will be a midface advancement when she is 5-6 years old. This surgery will be done prior to her going to school.

We will be constantly updating this page as Nicole has her surgeries. Any questions or comments are welcome.

Jack & Raquel Miller Weston, FL 33326 jacnrac@mediaone.net 954/ 384-8041


This page last updated April 1, 1999
 

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