My awesome and brave son, my hemihero! (Part #3)

Here is the “big” finale to Lucas’ harrowing birth story and the beginning of the long journey we embarked on called Hemiplegia.

Where we last left off, Lucas escaped the NICU seemingly fine after the first 8 days of his life, of which 4 were on a ventilator and a miracle drug saved his life. My hubby and I could finally breathe a collective sigh of relief and fall in love with our little boy. I look back and I’m glad that I didn’t know that there was anything wrong with our new baby, it would have been too much to process and the grief, stress, and anxiety that would have hit me like a runaway train, would have been so overwhelming.

Lucas seemed fine, but then he was also very cranky. My other two children were pretty easy going babies and we chalked up Lucas’ orneriness to colic perhaps? He also didn’t sleep much and we found that very odd for a newborn and he had trouble breastfeeding. I soon gave up on that and he would also have a hard time with the bottle. In my new mom brain, I didn’t even imagine that these were all signs that something was wrong. I remember being sleep deprived and frustrated with a baby that was doing the opposite of my other two kids. That should have been a flashing billboard of abnormality, but again denial is a stronger emotion then acceptance.

The early weeks of his life were spent consoling him and of course getting to know our little guy. At 10 weeks old, my hubby and I were attending a convention in Las Vegas and brought the baby along because my mother-in-law was living there at the time.

We left Lucas with her for one day and when we went to pick him up that night, she said she had noticed that his right hand was fisted and didn’t open up like the other hand. I thought she was overreacting and being a worrywart granny because newborns can’t control their hands well and are still learning more coordinated movements. Yet, now we know that Lucas’ “Mim” was absolutely correct that something was wrong and that was the first clear sign of hemiparesis.

At 5 months old, he seemed to be hitting all the milestones like smiling, cooing, rolling over, etc. We had a follow up with the hospital NICU and Lucas was seen by an occupational therapist. She evaluated him and I brought up the hand issue and she replied by saying, “Yes, he definitely has some kind of palsy.”

Wait! What did she just say? Palsy, isn’t that term part of other bigger issues? I had heard that word, but never really cared to learn more because it wasn’t part of my world. As soon as the visit was over, I grabbed the fairly new invention of a smart phone and googled “palsy”. There was Erb’s Palsy, Bell ’s Palsy, and Cerebral Palsy, but what the heck did these conditions have to do with my baby? We found a top neurologist at our local children’s hospital and it was an 8 week wait to just get an initial visit even with super awesome PPO insurance. Those 8 weeks of wondering what was wrong with my baby were disconcerting to say the least.

Finally the day came for Lucas’ first of many visits to a neurologist and she confirmed that he definitely had some paralysis, but we needed an MRI/MRA to confirm. Another month went by to get that done and then it came, the results that would change everything. The MRI showed a massive stroke that basically wiped out his entire mid left brain. Imagine cutting a honeydew melon in half and taking one half and then scooping most of the melon out, only leaving some of the flesh in the front and rear sections, but everything else was scooped out to the rind. Not much left is there? That is what happened to Lucas’ brain and this part controlled movement. We were flabbergasted because he was kicking and moving all his arms and legs and didn’t seem like a child that suffered a massive stroke. We were told lots of things that day like neuroplasticity would help the brain rewire, need to start therapy, blah blah blah. It all became a blur because now I had to go home and research this diagnosis.

He was diagnosed with right-side hemiplegia, but what did that mean and was that the same as hemiparesis and what was an infarct, a CVA, an ischemic stroke, and did he also have cerebral palsy? The doctor basically diagnosed and confirmed one thing, but that was it. We were told to just take note of his progress and keep up with therapy. No further details, no future outlook of possible side effects of paralysis that would severely affect Lucas’ development and life.

Where was the instruction manual to all of this, your baby has hemiplegia, now what?

Luckily for me, there were other parents who already walked the path we were embarking on and they would become and still are the ultimate resource of in-depth experience and knowledge of what to expect with having a little stroke survivor.