Noah

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 briefly stopped breathing. He was immediately taken to the NICU there at Overlake Hospital. After many tests and ultrasounds they discovered he had a bleed in his ventricles and a possible stroke. They diagnosed this as an Intraventricular Hemorrhage ( IVH) grade III and IV bleed. 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 and half year of life. Here we would meet Dr. Jeffrey Ojemann the neurosurgeon that would save Noah’s life over and over and give us comfort through the many frightening and difficult times ahead. On March 3rd 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 15 more shunt revisions, 2 serious shunt infections requiring a total of 11 weeks on 4 different intravenous antibiotics, 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, and then the possibility that his brain did not have enough room to grow because of no change in head circumference. Noah ended up undergoing a Calvarial Expansion (cranial expansion) on April 28th, 2005. The procedure involved having almost all of his skull taken off and spacers put in between the skull bones to increase the overall size of his head. Giving his brain room to grow.

It is almost inevitable that he will have another shunt malfunction sooner then later because of his slit ventricle problem. 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 weekly 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 directly into his stomach(G Tube). His development for a 26 month old is behind, but he receives physical and speech therapy on a weekly basis and seems to be making progress.
He is an incredibly strong and amazing child 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.

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  1. Becky Ripchinski

    I just wanted to thank you for sharing Noah’s story. I have a six month old son, Owen, who was diagnosed with a grade III and grade IV IVH a week after birth. He is a twin and they were born at 29 weeks, his twin brother Evan is healthy. I was just wondering if you had any advice, things that you would do differently and or any things that really helped Noah. Owen has two shunts and has had 16 surgeries so far for shunt complications and related issues.

    Thank you for your time,
    Becky

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