How our story began…

It’s Xmas Break 2016, and we have just received one heck of a gift. You guessed it…someone’s having a baby! Based upon some ungodly morning sickness, and an abnormally quick-growing belly, Jess suspects it may be a girl (we already have 2 boys). Fast forward to February 2017 for our 9wk check-up. Using a new hand-held ultrasound (about the size of an iPhone), our doctor says “I’m getting multiple heartbeats. There’s 2 babies.” Whereupon Matt the Soon to Be Daddy reflexively grabbed the machine from the Doctor and said “Where?!!”. Yep, when Fate dealt our hand, we got an extra card. Twins! The rest of the pregnancy was normal, and on 8/11/2017 Owen Jeffery entered the world at 6:59pm…followed by Lincoln Matthew at 7:22pm. Full term of 37 wks 3 days. Jess’s biggest fear was needing a C-Section, but nope, thankfully we avoided that as well.

Being in the middle of a twin birth was a bit like those people on the Discovery Channel who drive through tornadoes for a living. Owen came out, was shown to us, and then was whisked to a side table where he was cleaned/weighed/measured. But remember, we still had 50% more babies to birth! 22 minutes later Lincoln was delivered, and the bundles of joy were given to Jess to hold. At this point, were were informed that Owen would need to go to the NICU, as he was having trouble breathing regularly. Naturally, we were a tad bummed, but NICU stays are common with “multiples”. Lincoln must’ve really missed his brother, because he also had an apnea episode and had to stay in the NICU as well. The boys spent a total of 10 days in the NICU. They were released, and we took them home. Yay…?

Jess was determined to nurse the twins. The boys were growing quickly, but we had noticed that when nursing, Owen seemed to have trouble turning his head to the left. This was mentioned at his 1 month check-up, and the pediatrician suggested that he had developed Torticollis (a fancy word for tightening of neck muscles on one side). This is common in twins, and as “Baby A”, he had been a tad squished by Lincoln during the pregnancy. Physical Therapy was recommended. We began attending weekly therapy sessions to correct the condition.

Something didn’t seem right

Skipping ahead to early 2018, the twins were about 4 months old. We had begun to notice that Owen did not use his right hand. Not for grabbing toys, grasping items, and usually let his arm “dangle” when we would pick him up. Both of us had backgrounds working with special needs students, and at this point, Jess had over a decade in the classroom. What we were seeing with Owen almost identically paralleled the story of a student that Jess had worked 1:1 with for 8 years. He had been a twin, and around 5-6 months of age his mother noticed weakness in his limbs. It was as if a lightbulb had switched on in our brains. Jess was the one who immediately raised this to the therapist: “I’ve heard this story before? Could he have Cerebral Palsy?”

We brought these concerns directly to Owen’s pediatrician, who then referred us to a Pediatric Neurologist for an MRI. We had to wait a solid month for his appointment, and this felt like an eternity. After all, this was not part of the plan. Get Pregnant. Have baby(ies). Enjoy baby(ies). That’s the plan. Not “Go have my baby’s brain scanned to see what’s wrong with him”. On March 7th 2018, we arrived at Riley Children’s Hospital, where upon Owen was sedated for his MRI. His scan took about 90 minutes, and then it was another hour before Owen was fully awake. However, his neurologist was not on-site to read his scan until the following day. So the three of us had to stay overnight. Suffice it to say that the swirling of the “what ifs” in our heads matched our restless tossing and turning. Neither of us slept well.

We met his neurologist for an 8am appointment. It was official. Our son had experienced a brain-bleed around 6 months of gestation. The resulting damage had been classified as “Right-Sided Hemiparesis”, our son had Cerebral Palsy”. The right side of Owen’s body was effected. Particularly his right upper-body. Initially there was a the tiniest sliver of relief, in the sense that, at least we now knew what was going on. Then the crushing realizations started to pour in. We had so many questions. “Will he walk?” “Talk?” “Will he have cognitive delays?” Unfortunately, and possibly the most frustrating part for us as parents, was that at only 4 1/2 months old, Owen simply hadn’t reached the threshold for any major milestones yet. In other words, over the next 3 years, it would simply be a matter of “Lets wait and see”.