Reef's Journey
Reef was born June 17, 2016, at Barton Memorial Hospital, after almost two years of trying to conceive. For no other reason than he was ready to make an entrance, Reef came into this world 9 weeks early. He was taken to UCDavis Children's Hospital where we spent the next 62 days. I was able to hold him for a short time when I got to the hospital the next afternoon, but then not again for a full 7 days.
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The first week seemed like years. Every time we left to get something to eat or make a call, we would come back to another handout for another condition or another setback. He of course had jaundice, then severe Respiratory Distress Syndrome (RDS), Pulmonary Hypertension, an emergency chest tube for a hole in his lung, two holes in his heart (both closed!), two blood transfusions, and the list goes on. Reef required one-on-one care, and even the little 1 lb baby in our room was moved so Reef could have the care he so desperately needed. We owe the whole staff in the UCDavis NICU a debt of gratitude for saving Reef's life on multiple occasions.
The day after being weaned off the oscillating ventilator he had a brain ultrasound, which our doctor then told us, "looks worrisome". He had developed an Intraventricular Hemorrhage (IVH), a brain bleed, with a grade 2 on the left and 3 on the right (out of 4 grades). We were completely blind-sighted. I asked all the tough questions and from there Reef had bi-weekly ultrasounds to make sure it wasn't getting any worse and the spinal fluid was still draining... two weeks later he developed hydrocephalus and our son had his first brain surgery on July 13, 2016. I can not put into words how we felt watching our first and only little miracle being wheeled through the hallways toward surgery.
Other than extubating him after surgery, which he never does well with if he's awake, everything went well. He started to make gains with eating, started his famous projectile pooping on the nurses during his morning cares, and we were finally seeing progress. The problem in the NICU is, it's a roller coaster ride. Everyone says you'll have your ups and downs, but they all fail to mention it's a roller coaster in which you are strapped to the back, upside down, by your ankles. He started to have ABDs... apnea, bradycardia, and desaturations. Reef turned blue in my arms 3 times, one of those times needing to be bagged.
For all those ups and downs, we had Reef, our sweet, handsome, love of our lives. We were finally discharged on August 18, 2016, 62 days after we got to UCDavis and our original due date.
We took Reef home with a Nasogastric (NG) feeding tube and he had to be put back on oxygen because of the elevation here in Tahoe. I never thought I would have to learn to insert a tube into my son's nose and down into his stomach. Luckily I was right in wanting to forego the G-tube (surgically placed feeding tube) and we took the NG out on Sept 29, 2016. Our pediatrician became part of our family as we saw her once a week, if not more. We were also lucky enough to receive PT, OT, and Developmental specialist visits at home once a week starting in October, and Reef started to thrive.
Never in a million years could we have been prepared for his first malfunction. Reef was a little fussy, which wasn't normal, and I had a feeling something wasn't right. We scheduled an ultrasound at Barton Memorial Hospital on November 11, 2016, and received a call from our pediatrician that night telling us UCDavis Neurosurgery wanted to see us in the ED. We drove straight there and Reef was in surgery within hours. There was no signing consent forms beforehand, no talking it through with the team, just a woman walking out of the OR and grabbing Reef out of my arms and rushing him into surgery as he looked back at me like, what's going on Mom? Recovery was much different this time. He could only look to the far left for 24 hours after surgery and my husband was my rock because I was beside myself thinking something went terribly wrong. Neurology explained it may have been the extra build-up of spinal fluid that had put so much pressure on his brain and could have made a sudden shift once the pressure was relieved, thus putting pressure on his optical nerves. We also learned that he had a large cyst taking up a large portion of the right side of his brain. By brain surgery number 4, that cyst had become a non-communicating right temporal horn, requiring a second shunt to be placed.
His second shunt lasted 6 weeks and on January 4, 2017, we again rushed Reef to the ED at UCDavis where he had brain surgery number three. The next 6 months went by brilliantly. We weaned Reef off oxygen in early February, came off our year-long quarantine for RDS around his 1st Birthday (his lungs needed time to heal without the threat of becoming sick and being potentially fatal), and even took him to the Monterrey Bay Aquarium, where I had a minor panic attack being around so many people! Of course, his immune system wasn't the strongest so he got his first big cold after all that fun, but we made it through.
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The morning of July 21st was going beautifully. One of my best friends gave birth to her own miracle baby after 6 years of trying to conceive, and we were making plans to play with friends that afternoon. When Reef woke up from his morning nap I noticed there was a pea-sized swelling around where the tube goes into his skull. This had happened before after other surgeries, but this time I had that same, sick to my stomach, feeling I've had with every single malfunction. Call it mother's intuition, or whatever you'd like, but I was right again. I took him to our pediatrician and she measured his OFC (head circumference), and we just looked at each other. By the time we got to the ED, the swelling was the size of an apricot and by later that evening his whole forehead was retaining the extra spinal fluid. The morning of July 22, 2017, marked brain surgery number four, and this time they were not able to move or replace the shunt, only cauterize a hole through the tubing. That shunt lasted 4 weeks.
On August 28, 2017, Reef had his fifth brain surgery which included removing the shunt from the front ventricle, placing a shunt in the back ventricle, and placing a second shunt in the non-communicating right temporal horn. That surgery took 4.5 hours as opposed to 1.5 hours for every other surgery. That's also when our neurosurgeon called Reef one of her "more complicated cases". However, through everything, Reef has always remained his happy smiling self.
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Reef's sixth brain surgery was exactly 3 months later and started with uncontrollable vomiting and a trip to the UCDavis ED where he had a larger valve placed. November 28, 2017, was the last time Reef had to undergo brain surgery! While we have had some scares he is holding strong at over 6 years brain surgery-free, which is more than we could ever have asked for! Through every malfunction and every surgery, Reef has been his happy self. We are blessed that our son is a smart, happy, and thriving 6-year-old, and we thank God he hasn't had any major setbacks or complications. Reef has graduated from all of his therapies! He graduated from PT on May 23, 2018, OT on December 12, 2018, Developmental on June 11, 2019, right before his third birthday, and Speech on September 12, 2019!! He is excited to start third grade and play this summer. He loves playing baseball, and basketball, creating crafts to sell at his stand this summer, and playing with friends. He's our very own poster child for early intervention services and I couldn't thank our team enough!
I thank you for taking the time to get to know our story and my hope is that through this Fun Run we can educate and create a drive for others to want to help find a cure for everyone with hydrocephalus and help families in need along the way.