Our sweet little angel came into our lives February 9, 2004 and made his entrance into this world a slow one. After almost 4 and 1/2 hours of active pushing he finally arrived and weighted 6 pounds 9 ounces. He was beautiful and looked so healthy on the outside, but because of the long labor he would experience damaging effects to his brain. Our first sign of this came 6 hours after his birth when he started having seizures and stopped breathing. He was immediately taken to the NICU there at the hospital where he was born at. After many tests and ultrasounds they discovered he had a bleed in his ventricles and a possible stroke. They diagnosed this as an Intraventriculiar Hemorrhage (IVH) grade IV bleed. Being the severest bleed you can get from IVH. This would be the cause of his Communicating Hydrocephalus and would mean the placement of a shunt was necessary. He was transferred to Seattle Children's Hospital and Regional Medical Center, where little did we know at the time would become our second home on and off throughout his first year of life. Here we would meet Dr. Jeffrey Ojemann the neurosurgeon that would save Noah's life and give us comfort through the many frightening and difficult times ahead. In March of 2004 Noah received his first VP shunt at three and half weeks of age after his head circumference jumped from 35.5cm to 39cm within two days. This shunt caused many problems and at 7 months he would receive his second shunt, this being a programmable now.
However, it was only the beginning to 12 more shunt revisions, 2 serious shunt infections requiring a total of 11 weeks on 4 different intravenous antibiotics, an MRI discovery of an Arachnoid Cyst, the diagnoses of slit ventricle syndrome, the placement of a second shunt this one being an LP shunt (lumbar peritoneal), the diagnoses of an auto immune deficiency called Auto immune Nuetropenia which could be the onset to Leukemia, and now our new and latest worry, the possibility that his brain has stopped growing because of no change in his head circumference in 6 months. It is almost inevitable that he will have another shunt malfunction sooner then later because of his slit ventricles, and will eventually need to undergo a procedure called a Calverial Expansion to increase his head size by taking off the top part of his skull and putting spacers in between the skull bones, with hopes it will increase his ventricle size and lessen the number of revisions he might need. Amazingly enough through all the difficulties of this last year, Noah has overcome these hurtles and as long as his shunts are working properly and his white blood cell count is maintained at good levels with daily injections of a drug called G-CSF he should do well. Despite all of his medical problems he is the happiest and sweetest baby. He still acts like a normal baby but requires a little more help with the every day baby things that most parents of healthy children take for granted. For instance his ability to eat by mouth was lost after so many surgeries and he has had to get his nourishment through a feeding tube that goes into his nose (NG Tube), hopefully soon he will be transitioning to a feeding tube that goes directly into his stomach(G Tube). His development for a 13 1/2 month old is only at about a 6 month old level, but he receives physical and occupational therapy on a weekly basis and seems to be making progress. He is an incredibly strong and amazing baby and has completely changed my outlook on life. Everyday he is feeling good and doing well we thank God and never take these wonderful times for granted. He was an absolute gift from God and has blessed and touched our lives in so many ways and continues to daily.
The future will more then likely bring more surgeries and hospitalizations and knowing that his current shunts will more then likely fail is very disheartening at times. But when you look into the eyes of this little boy and see his bright, smiling face those worries get pushed aside and you just focus on the moment and not what the future could be.
