Kaine, 9 months

On Jan. 22, 2017 at 3 AM my water broke with my second child. The problem: He wasn’t due until March 10, 2017.

Off to the hospital, I went where I would be transferred an hour & a half away to deliver in a hospital that had a NICU. After two days of labor our son arrived on Jan. 24, 2017, at 7:33 AM. He weighed in at 5lbs 4oz and was 17 inches long! He was perfect, beautiful!

Right after delivery, they whisked him away to the NICU where they would evaluate him since he was born 7 weeks early. To our great relief, he was doing excellent! He was in the NICU in Dubois, PA for 6 days!!!! The only trouble we ran into was he had to come home with a phototherapy blanket due to Jaundice. We were two thankful this was the only “problem” he had. So on Jan. 30, 2017 we set off to bring our baby boy home to meet his family!

Two days later, Feb. 01, 2017 we had his first appointment with his pediatrician. He had lost some weight, his bilirubin was still up, & he wasn’t nursing very well. We chalked this all up to his jaundice which we had home health coming in to check every other day.

As the days past it seemed like nothing was growing but his tiny head. We just chalked it up to him being so small at birth that now he was starting to finally grow.

For the next two weeks we were back and forth to his pediatrician’s office checking his weight & bilirubin levels. Finally at his two-week checkup (post NICU)  on Feb. 08, 2017, we got good news. His weight had finally came up and levels went down.

While waiting to see the Doctor, I snapped a picture of him laying on the table to send to my husband & family with his stats of how much he had grown! I was so relieved he was finally gaining weight & growing! But with that snap of a picture my heart sank, something was wrong. His head looked huge, it was oddly snapped & his forehead was protruding. I noticed by looking at the picture, my family noticed when I sent it to them. I began coming up with excuses, he was just a growing boy, he was starting to catch up from being so small at birth. But, when they checked his head they noticed it had grown significantly in a weeks time. His fontanel was very “tense” feeling and starting to bulge a little. Also, his sutures of his skull where widely spread apart. This concerned his pediatrician, this concerned me. They had two different nurses & his pediatrician measure his head to make sure what they were getting was correct. It was. His Doctor decided to call his neonatologist to talk about her findings. He, unfortunately, said this was a normal head size for a baby his age and not to worry. Recheck his measurements in a week. So that is what we did. I left the office uneasy, scared, worried for my baby boy.

The rest of the week and weekend went by and his head had grown more. Was looking bigger, I knew in my heart then that something wasn’t right, something was wrong with my precious boy. That following Monday our daughter had a routine visit with the same doctor. She took it upon herself at that visit to weight Kaine and check his head. His weight has come up to just above his birth weight! But, his head had grown another 1/2 in. That was it, she set up for us to be seen at Neurosurgery on Feb. 15, 2017 at Children’s hospital of Pittsburgh.

On Feb. 14, 2017 my husband and I drove to Pittsburgh (4 hrs away) to spend the night before his 8 AM appointment the next day. That evening in the hotel as we laid down, I sat and stared at our tiny, newborn son in his pack n play. Worried what the next day would bring, scared. As I watched him, I noticed him twitching (not the normal newborn twitches) his right arm. His eyes would pop open and start twitching and moving all around. I immediately woke my husband and told him we are going to Children’s ER right now, I thought he was having seizures.

We got to the ER by 12 AM. We got taken back and had a head ultrasound. After that we waited for a Doctor to come in with the results, preparing for the worst. I knew when I seen a team of doctors at the door it wasn’t going to be good news. They came in with a  neurosurgery doctor and a team from the NICU. Kaine had been diagnosed with “severe hydrocephalus”. I broke down. We asked what was to come and they said he would be admitted, go through more tests and wait to be scheduled for surgery. MRI came back that sometime after birth he had suffered a brain bleed that causes blockage in his ventricle.

On Feb. 17, 2017 our 3 week old son was taken back for his first shunt surgery. We were anxiously waiting to see him after surgery. The neurosurgeon came in and said the surgery was successful and all went smoothly! Being so small and young it took him quite a while to come off the breathing tube and come out of anesthesia. Once he did, he was a different baby. His eyes were bright and full of life, he started responding to us, he started nursing better. It was like there was so much relief in him.

On Feb. 20, 2017 we were discharged to come home! It was amazing the changes in him. We only had to be scheduled for a follow-up in two weeks and another in 4 weeks after that. Things were great, he had been doing good, he was gaining and growing, we had started early intervention to help with his development. All checks ups were going great. That was until May 18, 2017.

I had noticed Kaine’s head growing again. Fluid was building up around his valve. He was waking from naps screaming for no reason. The mom instincts kicked in and I knew something wasn’t right again. I called his pediatrician and she had me bring him in. He head was definitely “swollen” looking again. She suggested we take him to Children’s ER. So we packed up and headed back to Pittsburgh making it there by 11:30 pm. He underwent an MRI which revealed his ventricles were enlarged again. The shunt had stoped working. He would have to undergo surgery to figure out why. So on May 19, 2017 Kaine had a revision to replace his valve that quite working. 24 hrs later we were released and sent home.

Something was never quite right after that revision. Fluid kept building up between his skin & skull. They said it was his CSF pushing out from the hole where the catheter was. They kept assuring me it would drain. I just felt uncomfortable with it. On May 27, 2017 my husband and I ran him down to Children’s ER to have him looked st. They did a shunt series X-rays and said all looked good. Neurosurgery decided to turn his valve down to increase the flow and wrap his head to put pressure on it to help push the fluid back through the hole and sent us on our way. The next day it had swollen so much, and so much fluid was between his skin and skull it popped a stitch on his new incision and began leaking spinal fluid. I immediate called neurosurgery and they told me to keep it covered I keep pressure on it.

By early May 30, 2017, at 2 AM, Kaine began running a fever of 102.2. I knew he had developed an infection. He was inconsolable, screamed when you would lay him down, screamed constantly. My heart was breaking, I was scared. We rushed him to our ER where he was flown down to Children’s for emergency surgery to remove his shunt and put an external drain in. His spinal fluid had tested positive for infection. I have never seen him in so much pain. From May 30, 2017 to June 7th, 2017 we were in the hospital, externalized with picc line meds. Finally on June 8th, they put a new shunt in on his opposite side of his head & 24 hrs later we were released to come home.

Kaine has been a fighter, a trooper, a true inspiration to us! He has been though 4 brain surgeries in his first 4 months of life. Every day is a blessing. I am happy to report since coming him on June 9th, 2017 we have had a healthy, happy, growing little boy! We thank God for the doctors and medical teams at Children’s hospital of Pittsburgh and for these medical interventions that allow our little guy to live a normal life!

God bless all though going through struggles, especially the Hydro Warriors!




















Tell us about your journey with hydrocephalus!

Share your story of hope and perseverance with us! We will feature the amazing individuals in our community who are living life to the fullest regardless of their condition! Stories are posted on our website and through social media. Submit your story today!

Let’s SHARE. Let’s CONNECT. Let’s raise AWARENESS! Let’s INSPIRE!

For questions, email: communications@hydroassoc.org with the subject line “Share Your Story”.

Become a Grassroots Advocate for Hydrocephalus today! Click here to join the Hydrocephalus Action Network.