I want to start by saying thank you for the outpouring of support from my first blog post. It was amazing to read all the comments and messages! Next, I want to introduce my little warrior. He was born on April 15, 2016 at 5lb 9oz and 18”, not the biggest baby but that was soon to change.
In my last post I discussed my pregnancy and how we knew he had already had a perinatal ischemic stroke. We got to see Dean for a bit after he was born. It was amazing to finally hold him and see him but we couldn’t stop wondering about his future, we couldn’t just enjoy the moment. Shortly after Dean was born he was taken away for a 24 hour EEG (a test that would detect seizure activity on his brain). It was hard letting them take him, he had a 1 on 1 nurse and an amazing NICU room that I could walk to at any time.
After 24 hours we finally received good news, Dean did not have any seizure activity. After everything we’d been through that little bit of good news on top of finally being able to hold him made everything finally feel ok. Little did I know he would probably have that EEG glue on his head until he was 30. He moved to the step down unit and things started to get easier. Top 3 things about our NICU stay: 1) The nurses were amazing 2) They pretty much taught us how to be parents and 3) We stocked up on diapers and formula. While in the step down unit Dean had another MRI, we chose to do it without sedation. Believe it or not I think he enjoyed it. He was in a little vacuumed suit, pretty much the ultimate swaddle, and he wore little sticker ear muffs. It was so cute yet heartbreaking at the same time. The damage was still done from the stroke but the brain bleed we saw in the previous MRI was healing. After 5 days we were able to go home.
Dean never really enjoyed tummy time. Not gonna lie, we would put the ipad on the ground and let him watch videos to encourage it. This might be where his “Baby Shark” obsession began. He started sitting un assisted at 7 months. He still has never crawled like a typical child but he has an army crawl down. Dean also has mastered the scoot. He sits on his butt and uses his left arm and legs to push around. It is crazy how fast he is and it sure gets a lot of attention when he does it in public. He is now 15 months and starting to pull himself up. Just recently has he started showing interest in this, so I think we are getting closer to walking. The stroke has cause mild Cerebral Palsy, he is a right hemiplegic. The stroke was on the left side of his brain causing paralysis on his right side. It is definitely more noticeable in his arm/hand than his leg. The muscles in his arm are very tight. His hand is almost always in a fist and his arm is bent. He wears an AFO (ankle-foot orthosis) to compensate for weakness and correct deformities before they form. Dean can walk with a walker and we hope he will walk without it one day soon. He does physical therapy twice a week, occupational therapy once and week, and we are planning to add speech into the mix.
He’s a pretty special little boy, people often comment on how amazing his smile is. He’s almost always smiling and if I could choose one thing for his life it would be that he never stops smiling. We also get told quite often how cute he is. Now at first I was worried people were just saying this because they didn’t know what else to say about a baby who has special needs but then I look at him and totally agree. I’ve decided even if I fail as a parent he’s got great looks to fall back on. Like I mentioned before, the “small baby” didn’t last long. He’s consistently in the 90th percentile at his appointments.
The 3 things Dean loves the most (besides his Dada): 1) Swimming 2) Meatballs, he really likes food in general but meatballs are his thing 3) Wheels! He’s oddly obsessed with wheels. I try to analyze this as he’s going to be an engineer or something but I just can’t figure it out. We don’t know Dean’s future and that is the scariest part of raising him. Will he have seizures? Behavior problems? Learning disorders? Sensory Disorders? Speech delay? These are things we wonder every day. But right now we are just enjoying the moment. We are trying to give him every opportunity to succeed. He is such an amazing little boy and we are doing everything we can to give him the best life possible. People often say, “he’s so lucky to have you as his parents.” I feel we are the lucky ones, having him as our son. I once read this quote, forgive me for not knowing who wrote it. “Parenthood is about raising and celebrating the child you have, not the child you thought you’d have. It’s about understanding your child is exactly the person they are supposed to be. And, if you’re lucky, they might be the teacher who turns you into the person you’re supposed to be.”