JJ finally had his strabismus surgery on October 9, 2018. They loosened his eye muscles to help prevent them from crossing. Surgery was, thankfully, uneventful!
While his eyes are not 100% looking the right direction the change is noticeable!!
Milestones
As a hydrocephalus baby, JJ is behind on hitting milestones. Along with having a massive head, he also has low muscle tone, so things like sitting up, or holding his head up is twice as hard as it would be for a regular baby. Since his last surgery in April 2018, he's been hitting more and more milestones. JJ finally started rolling:
...and then army crawling:
And just today, dada put him in front of the table and he stood, unassisted, for 30 seconds!!
Since JJ's shunt has been working, it has made all of the difference!! More updates to follow as they happen
A friend recently mentioned my blog from when I first found out that JJ was going to be born with hydrocephalus. I'm going to keep it up because it was true to how I felt for the last half of my pregnancy. Once JJ was born I still really struggled to connect to him, and I'm pretty sure I also had postpartum depression. We were very lucky that JJ didn't need surgery right when he was born. He didn't have any problems other than being too cute and we took him home 4 days after he was born.
Because of the hydrocephalus, I had to take baby JJ to so many appointments. It was terrifying to take him out in his carrier because his head was so big that the head holders didn't work:
After buying a few different things we finally fount these owls that would keep his head centered and snuggly without pushing it forward:
We went to our neurosurgeon for JJ's 1 month checkup and his head was so large the instantly admitted him and he had surgery the next day (August 29, 2017):
JJ came home with a scar on the back of his head and a new VP shunt draining the extra fluid in his baby head:
About a week after JJ's surgery he developed a fluid collection around where his shunt was. I freaked out and we went to the ER at 6pm. We were there till 2am, when they shipped us to the main campus ER for observation. After an uneventful morning we were sent home saying that as long as he wasn't acting lethargic or vomiting, everything was ok:
We continued with doctors appointments and snuggles and eventually he started smiling (even if it was gas smiles):
My first day back to work was Sunday September 17. My second day back I was only there for an hour before JJ was having some shunt trouble and I had to leave and take him back to the neurosurgeon for some tests. Nothing was officially wrong, so we went home and spent the rest of the day snuggling:
JJ spent 4 days a week with grandma and grandpa, who snuggled and loved him as much as we do!
The fluid collection on the back of JJ's head kept getting bigger and bigger. It seems like we were at the neurosurgeons office every week to discuss it.
After weeks of worrying, we went in for JJ's first revision (2nd surgery) on October 17, 2018:
JJ recovered quickly and continued his routing of eating, sleeping and being adorable:
We had an uneventful holiday season (from Halloween to New years!)
On January 16, 2018, grandma called while I was at work. She was worried because JJ was more vomity then usual, and the fluid on the back of his head was rock hard. She called the neurosurgeon, who said to bring JJ in. Grandma and grandpa brought him to the Cleveland Clinic main campus, where I met them after running out of work like a bat out of hell.
We had an MRI done, and then went up to the neurosurgeons office. After reviewing the MRI, they told us the bad news. JJ's shunt, which
should run from his head into his tummy, had somehow pulled out of his
tummy and all of the tubing was in his head! The fluid collection at the back of his head was rock hard because it was full of tubing! They did emergency surgery to remove the shunt and put a new one in.
JJ had surgery and we were out in 24 hours (this wasn't our first rodeo and we knew what to look for in case of failure). JJ recovered much quicker at home and was back to his giggles and playfulness after a few days of sleeping :
With the help of his physical and occupational therapists, JJ started eating solid food and reading and holding his head up!
We made it all the way until the early hours of Sunday April 8th before another shunt failure. Around 2 am, we knew something was horribly wrong. JJ woke up and was vomiting uncontrollably. He threw up so much that within 20 minutes he was just
dry heaving bile. Also, the fluid collection on the back of his head
was rock hard. Since this was the second time JJ vomited and had a rock hard spot on his head we knew exactly what was happening
Stefan and I FREAKED out and put him in
the carseat. Stefan drove, while I sat in the back and mopped up vomit
and bile, while talking to the pediatric neurosurgeon on call . We were in the ER for a few hours, and did the regular
X-rays and CT's before they told us the bad news. JJ's shunt had, once again pulled out of his
tummy and all of the tubing was back in his head!
The doctors did an emergency surgery and externalized his shunt. This means they took out the bad shunt and put in a temporary shunt that took fluid from his head and put it right into a bag. This was terrifying. When JJ was I awake, I stayed awake, terrified he'd pull out his shunt and damage his brain:
After 2 horrible days of JJ having an external shunt, they finally internalized it. The new shut wasn't in the back of his head anymore (where the fluid collection was), but now ran from the top of his head down his neck and into his abdomen:
JJ hasn't had any shunt problems since April (4 months). Since then he started teething (he has 6 teeth! 4 up top, 2 down below), has a helmet (to even out his head shape) and had a chocolate filled first birthday.
I can tell this shunt is working because JJ has been growing in leaps and bounds. After this shunt he learned to roll from his back to his tummy and now is aggressively rolling everywhere. JJ is babbling a lot and finally started to raise his arms for pickup and respond to his name. Our next goals are to have JJ eat solid food with texture (he only eats the pureed foods) and to sit up and crawl unassisted.
Even after all of his surgeries, JJ is a sweet tempered baby who is slow to cry (unless you try and take away the toy he is playing with). He flirts with every new person he meets and giggles almost incessantly. We are very lucky to have such a sweet little guy in our lives.
Thank you for keeping up with this blog, even though I don't update it as much as I should. I'll try to update more often. Feel free to follow my youtube channel which gets JJ videos a few times a month: https://www.youtube.com/user/Kkatrinaevening/videos
Here's the most recent video (as of this blog posting):
