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
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.