Jack's Page

 

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In the wee hours of Christmas morning 2004, when we returned home from celebrating Christmas Eve with our Smith relatives, David felt our sweet baby kick for the first time.

On New Year's Eve 2004, we were very excited to learn that we were having a little boy. Since David had insisted on knowing the gender before picking a name, Marie said, "Now we know. Let the fighting begin."

She was laughing as Dr. Sharp entered the room with a solemn look on his face as he tried to explain that there might be something terribly wrong with our little boy. Thus began a cycle of highs and lows that only God could have pulled us through.

We were referred to the "anomalies clinic" at The Kirklin Clinic at UAB. At our initial visit shortly after the new year, we were told that things really did not look so bad. We were told that our baby's umbilical cord had two vessels instead of three. The doctors told us that that difference made it more likely but not definite that our baby had some chromosomal abnormalities. They told us that his kidneys were larger than expected and a bit dense so they wanted to keep an eye on their development. They referred us to the cardiac clinic to rule out any heart defects since two vessel cords often resulted in kidney and heart defects. The cardiologist told us that there was a possibility that our baby would require surgery after birth but that they would not know until he was born. Marie had an AFP test which was negative and we became less worried. After several more trips to the "anomalies clinic", we were reassured that Jack (as we were now calling him) had caught up with his kidneys so they were no longer a concern and we no longer had to go for check-ups at their clinic.

Jack measured large for his gestational age and Marie got bigger and bigger. As the expected due date of May 20th approached, Marie began telling everyone that she just knew that Jack would come early and would be here in time for Mother's Day 2005. No such luck. Marie just got bigger and bigger and Jack got comfier amd comfier. He was not about to come out! As her due date came and went, Marie began to joke that Jack was so happy where he was that he would fight the doctor trying to get him out.

Dr. Sharp finally decided to try to induce labor. On the evening of May 26, we went to the hospital so that Marie could get a medicine that would begin thinning things out and hopefully set labor in motion. We were excited and thought we were ready to handle labor and delivery. Unfortunately, the medicine did not kick start labor and her water had to be broken and a drip was started the next morning to start the contractions. Marie labored all day but the contractions would not settle into a regular pattern. Like Marie had jokingly predicted, Jack was not coming out.

That evening, Dr. Sharp said that it was time for a c-section. It wasn't what we planned but we were still excited that we would soon meet our little boy. Finally, after a large incision, the use of a vacuum extractor and tugging by Dr. Sharp, Dr. Christine, and a nurse, Jack Devlin Smith entered the world at 5:24 pm to several exclamations of "What a big boy!" He weighed 10 lbs, 4 oz and was 22 1/4 inches long.

Marie was heavily medicated and could not see a thing but her foggy brain was a bit worried that things seemed to be taking too long. David could see over the curtain and did not know how to begin to tell Marie that something was wrong with our little boy. David felt that Kim Coffman, the nurse practitioner, was a huge blessing because she came over and explained to Marie that there seemed to be some problems-Jack's hands and feet were fused together and he was having trouble keeping his oxygen levels up. Marie got to briefly touch Jack's hand before he was wheeled away in an incubator to the NICU.

At some point that evening, someone told us that Jack probably had Apert's syndrome. Marie's nurse printed some scary information for her off the internet. David went home and researched Apert's and located Dr. Jeffrey Fearon's website. Marie spent most of the time in the NICU with Jack until he was discharged at 10 days.

In the meantime, David did a lot of research and phoned Dr. Fearon's office where he was immediately put through to Dr. Fearon's nurse, Cindy, who provided him Dr. Fearon's email address. We sent pictures of Jack and some medical information to Dr. Fearon who sent us back a great email with a proposed treatment plan. We did not like the treatment plan/outcome proposed by the orthopedist we were referred to in Birmingham and decided to travel to Texas and meet Dr. Fearon. The meeting went well and we decided to have the bulk of Jack's treatment (all of his surgeries) coordinated by Dr. Fearon.

Also, through our web research, we found Teeterís page and joined the Apertís listserv which continues to be an invaluable resource and support.

Things were tough when we first got Jack home because we were exhausted and Jack was terribly uncomfortable. We figured out that he had reflux and eventually started him on Prevacid which made a huge difference. Also, since Marie is breastfeeding Jack, she altered her diet until she determined that dairy and beef in her diet seemed to upet Jack's stomach. After those changes, Jack did much better and we have all adapted to each other really well.

Jack is growing and finally putting some weight on. He started solid food and absolutely loves it. We cut up regular soft table food and puree harder things. He eats anything we put in front of him and his doctor, Dr. Aizenman, said that we could give him anything and as much as he wants (except honey and nuts). At 8 months, he weighs 18 pounds and is right on track with his physical and mental development. He is scheduled for his first stage of finger and toe separation on March 14, 2006.

 



 

 

This page was created March 22, 2007

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