Count Your Blessings

When we were on vacation, we received some news that isn’t great.

Don’t worry: Solly is healthy and happy and nothing about that has changed. I’ll write more specifics later, but, in short, we were notified by a specialist that Solly might not be a candidate for SDR, a potentially life-changing surgery that would permanently eliminate his muscle tightness. We have to do some legwork – a sedated MRI and a consultation in St. Louis – before we know the answer.

But, this post isn’t about SDR. It’s about how I deal with potentially bad news.

img_1821When you parent a medically complex child, you quickly learn that this life is an emotional roller coaster. One day your child does something amazing, something that doctors predicted he would never be able to do, and then the next day, his journey takes a step backwards – or, on some days, many steps backwards. As easy as it is to wallow in bad news and feel down about whatever that backwards step is, I’ve found that allowing those negative feelings to stick around is not only not productive, it also tends to rub off on Solly and Bea. If I choose this route, no one is happy and we remain at a standstill until I’m able to dust myself off and move forward. Continue reading

Mama Guilt, Be Gone!

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Flashback to one year ago

All Moms struggle with guilt. Whether its choosing to go back to work a few weeks after her baby is born or wondering if she’s feeding her kids the right foods or any number of other situations, it’s a common feeling among all mothers. In my particular situation, I spent the first 10 months of Sol’s life feeling guilty that something I did (or didn’t do) caused Sol’s stroke. Again, this is a common source of guilt among Moms of stroke babies, and in 99% of the cases, the stroke was the result of a random mutation or a clot that no one saw coming. But, I always wondered if maybe I stopped running a little earlier or if I had passed up that occasional Starbucks Chai Latte, Sol’s situation would have been different.

Thankfully, right before we left DC, my feelings of guilt were put to rest.

After 10 months of choosing not to look at Sol’s MRI out of pure fear for what it looked like, I decided I would feel better knowing what it looked like. I asked Dr. Newport, the director of Georgetown University’s Center for Neuroplasticity, a woman who I greatly admire and trust, to view his MRIs and walk me through them.

Those 10 months of not knowing what those images looked like may have worked in my favor: based on what the NICU doctors had told us, I imagined the absolute worst – a sliver of healthy brain tissue and not much else. Not so much. I assure you, his MRI is still scary to look at. I learned that he had at least three strokes, one in the left MCA (ischemic) and one in left and right ACA (hemorrhagic), and these strokes were massive, completely destroying brain cells in these areas. The MRI also showed a spot in the right MCA, which could have been a fourth stroke or the result of blood in his brain after the brain injury.

Sounds like a lot, right? It is… BUT what’s promising is that, through the areas of research that Dr. Newport and her team are commanding, doctors are finding that if one area of an infant’s brain is injured, other areas on the other side of the brain can take over. For example, since the left MCA was impacted (this houses the speech centers, for example), the right MCA can take over those duties. Because both the right and left ACAs, the areas that control executive functioning (think attention and organization skills) were affected, we are unsure how his brain will rewire to compensate for these areas. In fact, we’re unsure how his brain will rewire altogether. Because the left side of his brain bore the brunt of the damage, we DO know that his right side will always be weaker. Other than that, how well he continues to recover is left up to God, good luck, therapy, and Sol’s will and determination. He could very well be wheelchair-bound or never gain use of his right hand, but watching him work hard on standing in therapy and seeing him concentrate to bring his right hand to a toy tells me that he will make strides in all areas.

And, going back to that talk of guilt, Dr. Newport said that, based on his MRIs, it was obvious that nothing I did during pregnancy and nothing that the doctors did during delivery caused Sol’s stroke. It was most definitely a clot or multiple clots that broke off from the placenta during delivery – nothing more, nothing less.

While this news doesn’t make Solly’s situation any better, it does put my mind at ease and allows me to focus more on creating the best environment for his recovery – and that WILL help him improve.

Update on the Eyes

We’re in between two very important appointments that focus on Solly’s vision. The first, a check in with our pediatric ophthalmologist, was yesterday afternoon, and that appointment brought us both really good news and then news that was, as the French would say, comme ci comme ça.

The good news – the really good news – is that Sol’s eyes are perfect. Healthy and normal, meaning they can see. And, boy, was he a trooper to go through the eye exam to determine this. Eye drops for dilation and then lights shinning into his eyes for more than a comfortable few seconds.

The news that is more eh than anything else is that we don’t know what’s causing him to gaze to the left. Our ophthalmologist has a hunch that it could be Cortical Visual Impairment or CVI. This refers to an impairment in how the brain processes the image that is sent over from the eyes. An impairment might be field cut vision, meaning that he has trouble seeing things on one side, or he could have a preference for certain objects. Our doctor is referring us to a specialist for an assessment to see if CVI could be the culprit. The positive note here is that with early intervention, vision with CVI can drastically improve. (Hey, neuroplasticity!) The other positive note is that the doctor suggested we get in touch with a vision therapist to begin treatment as early as possible. Good thing we already have that on the calendar for next week!

After our appointment, I posted our scenario in the CHASA Facebook Group (a place for Mom’s of pediatric stroke survivors – an awesome resource for Mamas like me!) to see if any other babies had a similar eye gaze to Sol’s. We’re not alone! I found that some causes of the gaze were linked to CVI while another was linked to small optic nerves and others were without cause and babies simply grew out of it. The bottom-line is that all of those babies’ vision improved drastically in the first year.

The progress that we’ve made so far with Sol’s vision in PT and OT along with some of the milestones he’s reached tells me (and my gut) that he can see to some extent and we’ll need to keep working to get those eyes to the midline. More to come. Onward and upward!

The Importance of Manners

And by the subject of this post, I’m referring to bedside manners.

Last night, after a particularly tearful afternoon and dinner, I made Mike take me back to the hospital so we could read some bedtime stories to Solomon. We got to the NICU to find Sol bundled from head to toe in clothes – a first for him! When we spoke with his nurse, Bridget, we found they were trying to wean him off a bed warmer, something he’d been on since day 1. He’d also received a bath earlier that day, so a few extra blankets were needed to keep him nice and toasty. Once he stabilizes his body temperature, he’ll be able to move to a crib.

We pulled Sol out of his bed, and as we were rocking him, the doctor on duty stopped by to let us know they’d just completed rounds and Sol’s numbers looked great. Mike asked her to clarify the news we’d heard earlier in the day – what the heck were the cysts that were forming on his brain?

The doctor very patiently sketched out a cross-section of a brain and explained that the ultrasound suggested that periventricular cysts were forming within one section of his brain. They are in the area that controls motor skills, but it may be months or even years before we know what impact, if any, they will have. Because an infant’s brain is so plastic (neuroplasticity is my new favorite word), starting work with therapists now is so important in helping his brain reassign motor skills.

The way she described the new findings was so clear without being frightening. There is a potential issue, yes, but we have a plan to work around it.

Whew. That news made me feel so much better. We’re already doing the right thing to help Sol’s brain to develop despite these cysts. We’ve just gotta keep on keepin’ on. Onward we go!

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