This is a photo we sent to Dr. Jimenez. With all of Harpers hair her forehead does not look that bad but I  thought this photo might help you see what has to be corrected.

Bald headed babies. I have always thought bald headed babies are the prettiest babies of all. When Mark and I were first married our best friends had a baby girl and she was mostly bald until she was close to 18 months old. I thought she was, by far, the prettiest of all the baby girls at our church, and at that time there were several. That’s what I wanted:  bald headed babies.

Chandler had just a little bit of dark hair; he had a dark complexion and dark brown eyes. Very close to bald and absolutely beautiful. Kara had very little hair—blonde. She looked bald. She had big blue eyes, light complexion, and attitude. She was also beautiful.

Then I discovered I was sick with two beautiful babies to take care of. Chemo, radiation, and sleeping with a baby who had night terrors made for a few hard years. We started Chandler and Kara in a private Christian school about 4 years later. Full time jobs, Part time jobs, side jobs, baseball, basketball, softball. We stayed busy and the years flew by.  I would talk to Mark about maybe having another baby, but there never seemed to be a good time or any extra money. Nor did we know if it was even a possibility after my chemo. We found out I was pregnant with Harper when Chandler was 15 and Kara was 12; it was possible.

Harper was born August 22, 2011. She had LOTS of dark hair. Before she had even completely made her entrance into the world, the doctor exclaimed, “Look at the hair!” Upon first glance at her I noticed she had a different look. She had slightly slanted eyes and a ridge down the center of her forehead. The pediatrician wanted to check for Downs. Her forehead, he said, would probably round out on its own, after some time.

Harper does have Down’s syndrome. Her first few weeks of life, I spent hours in my room rocking her. Some of the time her head was soaked with my tears.  She was perfect. Long hair, slanted eyes, and peculiar shaped head, she is possibly the prettiest of my 3 babies (don’t tell Chandler or Kara). Even after 2-3 months when her hair grew longer and stuck straight out about 3 inches, she was still beautiful. Now at 5 months, her eyes cross much of the time when she looks at us—still beautiful. Somehow all of the things that used to make a baby beautiful to me have changed.

Sometimes when I see pictures of her my heart hurts, because I know everyone can’t see her the way I do. She is perfect to me. I felt the Lord whisper in my heart one day that He sees me that way, too. He knows all my imperfections, my oddities, and failures, yet because I’m His, He thinks I’m perfect, too. No matter what anyone else sees or thinks about me, His blood makes me perfect. Hard to fathom, but somehow having Harper has helped me begin to comprehend this.

At Harper’s 2 month check-up I asked the doctor about her head again. I asked if it were possible for her bones in her head to be fused. He thought it was still ok, but ordered an MRI to check. The MRI was scheduled several weeks out for Jan. 6. On Jan. 4, Mark & I attended Pat Shourd’s funeral, and I ran into Mary Golden. We visited for just a moment and she began telling me about what her daughter, Carmen, had been through with her baby, Josie. (If I was ever on facebook  I would have been aware of this—but for those who have requested me as a friend and not gotten a response, it’s because I am never on there.) The bones in Josie’s skull had fused too early, and she had surgery this last July  in San Antonio, TX to correct it. Dumbfounded, I told her we were going on Friday for Harper to have an MRI to check for this very thing. She gave Mark and I a printed copy of Carmen’s blog about Josie’s journey through her Craniosynostosis surgery.

Wednesday evening and all day Thursday I felt ill. I had the sick feeling that I had not had a chance meeting of catching up with old friends. I was terribly afraid that God had ordained our meeting to give Mark and I information that we would need—information that we did not want to need.

 Surgery for this condition in Arkansas is done in the traditional way.  From what Mark and I have read we have learned that babies are cut across the top of their head from ear to ear and all or a portion of their skull is removed, reshaped, and put back. This can be up to an 8 hour surgery. Blood transfusions and several days in ICU are expected. Carmen, who is a physician, said she administered anesthesia in these surgeries when she was at Children’s Hospital here. Her word to describe these surgeries was “brutal”.  Through online research she found Dr. Jimenez in San Antonio who developed this surgery endoscopically several years ago. It is about an hour long surgery with a small incision behind the hair line. Babies lose very little blood and may go home (or motel) the next day. To correct the head shape, the babies then have “helmet therapy”. He has an extremely high success rate.

 Thursday afternoon, the day before Harper’s MRI, using Carmen’s blog information, Mark contacted Dr. Jimenez’s office. He talked to the head RN (I consider this a miracle in itself). He told her our situation—Harper was 4 ½ months old and was getting an MRI the next morning . (This doctor operates on babies 6 months old or less) He asked her if it would even be possible for her to get into Dr. Jimenez if surgery was needed in this amount of time. She said it was and told him what steps to take--Email photos of Harper and next day air a copy of her MRI to their office.

I know this has been lengthy, but this is a brief version of what has brought us to this place.

In case you are wondering, Children’s Pastors are generally not wealthy people. When the doctor’s office confirmed that Harper needed surgery and could get her in 6 days before her 6 month birthday, Mark scheduled. We felt we simply had no other reasonable option. God had led us to this doctor; surely He would provide.

Many of you have been so generous with gifts to help send Harper to San Antonio. The surgery in Little Rock was far too dangerous an option for us to seriously consider. We humbly thank you. We would do whatever we had to, to not put her through the traditional approach.  Thank you for making our way for treatment in San Antonio so much easier.  

Someone asked if Mark would post updates on this blog. (Someone who knows me.) Yes, he will; I also will put updates on here. Facebook may not be my thing, but I am a Momma. I will tell you about my baby as long as you will listen.

We appreciate your prayers for Harper, Chandler, Kara, and Mark & me.

Much love, Brook

Wow! I didn't know setting up a blog could take so long, but I think I got it. I guess I should of had Chandler or Kara to do it. Hopefully through this blog we can share with you updates and stories as we take this journey together. Words cannot express our gratitude for all the prayers and acts of kindness during this time. We are blessed with a wonderful family, great friends, amazing church (Searcy First Assembly) and a wonderful school (Harding Academy).  We will do our best to keep you updated and please keep us in your prayers.

Baby Harper