I was unnecessarily induced at 38 weeks 1 day and after 12 hours of labor, I had only progressed to 4cm so my OB decided to do a Caesarian section. During the C-section, they had a difficult time delivering Noah because he had yet to even decend into the birth canal. When Noah was finally delivered, he wasn't breathing well, so he was immediately
put on oxygen and transferred to Huntsville Hospital to the Neonatal Intensive Care Unit. I literally got
to see him for 2 seconds before they took him to the nursery for oxygen. The
ambulance got there a few hours after he was born (during this time, I didn't
get to see him) and they brought him in the room for me to say goodbye and off
they went with my brand new baby who I had yet to even touch. Jamie, my dad, and
Jamie's parents went to Huntsville while my mom and sister stayed behind with
me. The following morning, Noah had a seizure that had to be stopped with
phenobarbital. On day 3 in the NICU, the doctors decided it was best to intabate
Noah and give him surfactant. Shortly after that, he was taken off the
ventilator and breathing fine.
I was released from the hospital and was
able to go to Huntsville 4 days after Noah was born. Once I got there, we were told that he had low
muscle tone, couldn't maintain his body temperature (which runs risk for
infections), and up until this point, he had been on an IV for nutrition. On Friday (the day I
got there) they let us attempt to bottle feed him (he was too weak to nurse). He
would barely take 1/4 oz., they would pour the rest of the milk that he couldn't
drink down a feeding tube that was in his mouth. Visitation was only a few hours
at a time and they would let us hold him, change his diaper, and feed him... we
didn't miss a single visitation because I was afraid Noah would feel lonely or
abandoned. It was EXHAUSTING, physically and emotionally and I was also trying to recover from having a major surgery. During his stay, they
did a CT Scan and EEG to try to determine the cause of the seizure... everything
came back normal. The neonatologists couldn't really give us any real answer as the cause with all of Noah's problems but he received excellent care while he was there. Noah was released on May 14, after 15 days in the NICU,
although he still had body temperature issues and still wasn't taking in much
milk.
It was scary those first few weeks home b/c Noah wasn't gaining weight, and on some days he was losing weight.
We had to take him to see our pediatrician every day for weight checks... they told us
he would be re-admitted if he didn't gain a few ounces overnight. We also had to check his
temperature constantly and if it was too low, wrap him in warm towels straight
out the dryer. Our a/c was set on 88 degrees in the middle of May, in an attempt
to keep Noah's temp up! By the time he was 8 weeks old, he had overcome the temp
issues and he was eating much better, however, he still had low muscle tone and
lacked the reflexes that babies are born with.
We were sent to a Genetics Doctor who told us
Noah didn't have a genetic disorder but he was pretty sure Noah had
craniosynostosis of the sagittal suture and he referred us to a Craniofacial
Surgeon at Children's in B'ham. Turns out, he was right. Synostosis is the
premature closing of one or more of the sutures in the skull. Craniosynostosis can be the result of a genetic disorder (which our doctor ruled out), pressure during delivery or just something that happens randomly. Having craniosynostosis can put
pressure on the brain, cause headaches, developmental delays, etc. The only
solution is surgery. We decided to go through with surgery and it was scheduled
for Oct. 1, 2007 (Noah was 5 months and 1 day) It was a major surgery where they make
an incision from one ear, across the top of his head, to the other ear and make
incisions in his skull to re-shape it. The surgery was a success... however it
was really hard on Noah. It knocked him back developmentally to a newborn and it
took several months for him to fully recover. Since birth, Noah has been delayed
in most areas. After he recovered from his surgery, he began physical, occupation, and
speech therapies at the CP Center (the center treats all special needs kids;
they are not limited to those with CP). Once he was a little over a year old, I began taking Noah to
Huntsville on a weekly basis, where he received physical, occupational,
and speech therapies (in addition to what he got at the CP Center). Once Collier was born, we continued Noah's private therapies locally in the Shoals area and he began going to preschool where he would get therapy during the day.
Noah is seen by several different specialists within Children's Hospital. Initially, Noah's neurologist diagnosed him with "developmental delay" and ran every test under the sun to try and eliminate things that could be the cause behind the delays. In Noah's first few years of life, he had numerous blood tests, urine test, EEG's, a CT scan, a complete genetic workup, a muscle biopsy (which is a day surgery where they make an incision and remove a portion of the muscle from the thigh to be tested), and numerous MRI's. Finally in September of 2011, our neurologist did another MRI than finally showed a small amount of scarring in the basil ganglia portion of Noah's brain. It was his opinion that Noah had oxygen loss during his delivery and this is the cause behind Noah's delays. After 4 1/2 years, we finally had our answer.
Noah was
almost a year old when he began rolling from tummy to back. He sat up at 15
months old, began crawling at 27 months old and began walking with the assistance of a walker at 33 months old. Every year for the past 3 years, Noah has participated in an intense physical therapy program at Children's Hospital that is for 3 weeks, 3 days each week, for 4 hours a day. Each year after he completes the program, he has made huge strides. In May 2012, at 5 years old, Noah began walking consistently on his own without needing assistance from anyone or anything. He also learned how to go from sitting to standing. He still needs help in going down stairs but knows how to go upstairs pretty well. Noah still isn't talking but has learned to use picture cards at school and understands alot of what we say.
Currently, Noah is in Kindergarten at Harlan Elementary in their special needs class. He is doing wonderfully and has come a long way since he started almost 5 months ago. He has begun recognizing his name, identifying the weather and several different colors with the use of picture cards. We love his teacher and the aides in his classroom and are so pleased with his progress. All of his classmates love him and he's one of the most popular guys at school and always has kids speaking to him whenever he's walking through the halls. We've been so blessed that our experience in Kindergarten has been a great one so far.
Whitney
January 2013
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