When I sit back and reflect on Sam's journey thus far, there's a lot of places my mind could wander. I could think of the multitude of nights spent at PCMC. Or the 3 weeks at St. Mark's. I could pinpoint the day Sam came home from the hospital (well, or 1 of the 3 to choose from). And we've been to Dr. Day's office so much, we pretty much have residency there. Yet, in an ironic twist (5 is my lucky number, I'm on Chapter 5 of his story), Sam's story thus far consists of 5 days. 5 moments. 5 experiences that have changed me, my wife, my family, and especially my outlook on life. 5 days to share with you, before we talk about the next important date in our lives.
Day One: September 12, 2013
I know what you're thinking. Why not Sam's birthday? That was a special day to be sure (I'll never look at 9/11 the same way), but that was not a day that I attribute to Sam's story and our journey. You see, for a brief 18 hours, we thought Sam was fine. Another normal baby to join Lukas and Miles. We were adjusting to the realities of 3 boys (we hadn't found out the sex until Sam graced us with his presence. In many ways, we were clueless to what was about to happen. No, that was a happy day. One filled with tremendous pride every time I looked at my wife. Natural childbirth is nothing to sneeze at, and Elisa was absolute perfection that day.
No, the first day and moment that really reminds me of Sam's journey is the next one. I won't get into all of the details of each of these days...after all, I've probably written hundreds of pages of blogs since September 12th, but we'll cover the basics and why the day matters to this story, and this bit of reflection. The world changed the morning of September 12th. At about 4 in the morning, Elisa commented that Sam was lethargic and she was worried about his hands and feet looking blue. Upon telling a nurse, Sam was whisked out of our room for observation. Before we knew it, we were down in the NICU, staring at our child as they put in IVs, cords, and oxygen. Early on, our pediatrician threw around theories like "aortic stenosis". Little did we know that Sam's issue was much bigger than that...nothing that could simply be fixed with a little surgery. Sam's journey began that day. We knew Sam was sick, although we had no idea just how sick he was. But the day after his birth will always be meaningful to me. It was the day we realized that Sam needed us. Needed you. We all did.
On this day, Sam taught me that needing some help, some support....wasn't a bad thing. It was a necessity to get through the day. On this day, Sam taught me reliance.
Day Two: September 30, 2013
I often wonder, after this experience, what stories people would share if I asked "what was your scariest day?" Before September 30th, I might have struggled if I was asked that question. I would have probably had a pathetically shallow response, like the day I rode my first roller coaster. Until this day took place. After 21 days (and over 100 vists to St. Mark's NICU), Sam had been released on a Saturday. He had only been released because I had stretched the truth about having consulted with Dr. Day. So we spent 2+ days at home, thinking that a quick trip to the Cardiologist would just mean some Viagra for Sam, followed by a return trip home. This day was anything but simple. It was scary.
It started by finding out that Sam's heart pressures were now higher than they had been at St. Mark's. Next, Dr. Day ushered us into the CICU. That was followed by an ultrasound. And then our world ended, so we thought. This was the moment that Dr. Day became Dr. Doom. He believed that he knew where the AVM was, before the MRI had been completed. He told us that it was likely that Sam would not survive. Up to that point, I knew Sam was sick but I didn't ever think Sam could be lost. I remember the nurse crying while she watched us cry. Dr. Doom saying how sorry he was. And then I remember laying with Elisa in the Ronald McDonald room, not able to sleep. We talked about trying to take care of Sam while he was here. You could tell we were grappling with thoughts that no parent should ever have to grapple with. It was the longest night. By the time we headed into the MRI, I had lost hope that there was hope. I'll never forget that day.
Because on this day, Sam taught me what loss might feel like, as a parent. He opened my eyes to the connection we had forged in just 3 short weeks. On this day, Sam taught me to hold on.
Day Three: December 10, 2013
For those of you that have been with us through it all, you know that the AVM ended up being a fistula, and that it wasn't where Dr. Doom expected it to be. We spent the rest of the week getting Sam's pressures down (thanks to the Viagra/Sildenafil), and then were able to take him home. We went into a routine after that...2.5 months of a very cranky Sam, and very tired parents. We watched every ounce that he gained (or didn't). We watched his pulse oximeter for any signs of trouble. And I adjusted to a life that involved medicines, oxygen, and fear. Every day, I was afraid that Sam would relapse, struggle, or worse. Every day it felt as though I couldn't breathe.
December 8th, Elisa took Sam (at 1am) to PCMC, and we found out that he was in heart failure. But that's not necessarily the day I remember as being monumental in his journey. It was more troubling to me that Sam went into PCMC on the anniversary of my dear brother's death, to be frank. No, the third quintessential day in Sam's journey was two days later. That was the hardest day of the journey. The day before, we had listened as the doctors stated an emergency embolization would take place. We heard about the dangers - stroke, loss of limb, brain damage, death. And the next day, we had to wheel little Sam through PCMC, across a connecting bridge, and through University Hospital. The hardest moment of the hardest day was saying so long to our little man as he went back for his procedure. I cried harder than I remember crying in adulthood. I remember the sense of exhaustion, of helplessness. I remember watching every clock slowly crawl by. I had sat with a perfect view of the hallway leading to where Sam was, anxious to see Dr. Tosky.
If it was the hardest day, it was also the turning point. Tosky completed a medical miracle. Sam was okay, and they had occluded 40-50% of the flow. They hoped that Sam would come out of heart failure, or at least survive for a couple months until another procedure could be completed.
On this day, Sam taught me to believe that even in the darkest moment, there was still a belief that things were going to be okay. And that we should lean on his instinctual strength when we don't feel out hearts and minds can handle was was put onto us. On this day, Sam taught me hope.
Day Four: January 28, 2014
Again, Sam showed that he was the strongest member of the family. Just three days after his embolization, he was released (directly from the NICU). We were home for Christmas and started to see a very different Sam. He was happy. He started growing. He wasn't in heart failure. We had more hope than we could have ever had, just 2 months before. Things were looking up...so much more optimism was flowing through out household - what could a simple and worthless trip to the Geneticist do to that?
Plenty...at least, personally. We walked into that office thinking that we'd strike one more thing off the list of "what could have caused Sam's fistula" and take one more step closer to "it was a one in a million kind of thing". We left, realizing that Sam was one in a million, but the cause wasn't a fluke. The cause was due to me. My blood. My genes. I had passed this onto Sam.
We learned that Sam (and I) had a rare genetic condition called CM-AVM. In it's most mild form, it caused you to have small red birth marks on your body. In it's most severe...Sam's case...it could bring with it a fistula in the brain. And Sam's was big enough to cause heart failure. It was (and still is) a weird sensation, standing in the examination room with my shirt off, as the reality of our joined condition washed over me. Harmless birth marks that I had always thought were just unique pieces of me ended up putting Sam into heart failure. I had to go through such a process in the days and weeks to follow. First, there was my MRI and finding out that I didn't have a fistula or AVM in my brain. Next came the guilt, avoidance, denial, anger, sadness, and, at last, acceptance that this unseen connection between us was here to stay, and at least something that we could manage.
On this day, Sam taught me about unseen connections and unknown results. Up to this point, I thought the world had just thrown us a curveball. Suddenly, I looked in the mirror and saw a condition that had caused Sam's whole story to be written. And I finally became okay with it. On this day, Sam taught me acceptance.
Day Five: May 8, 2014
The first five days that really stand out to me in Sam's story were wrought with pain, fear, worry, and sadness. Yes, there were moments of happiness. Seeing Sam and knowing that he'd made it through his embolization was wonderful. But the days were jarring in the overall story - moments that rocked us to the core and didn't let go. Moments that have given me nightmares...in equal part to sleepless nights.
But Day Five (my lucky number, remember?) started to change that...with a twist. After wrapping our heads around Sam's genetic condition (and hope for a normal life if we could get past the fistula), we got through cold season, got Sam his MRI, and found out from his Neurology team that Sam was holding well enough that no intervention was required for the near future. In fact, if Sam continued to hold his own, another intervention might not be needed. We also found that Sam's echo results were more positive, he came out of the MRI like a champ, and we were to start treating this little angel like "the normal baby that he is". Yes, I'll remember this day for all of those reasons. But it's one of the biggies for another one...
When Dr. Brockmeyer explained just how remarkable the result of Sam's embolization was, my core was rocked again. Back in December, I thought they were giving us a list of "worst case scenarios" just in case. I found out that they weren't worst case scenarios. One of those was an expected scenario...they just weren't sure which one it would be. Dr. Tosky, who does these embolizations almost solely on adults, had navigated Sam's arteries and vessels that were small...millimeter small. All the way from his groin into his brain, occluding a major feeder that was forcing 50% of the bloodflow that was overloading Sam's heart. Sam's result from Dr. Tosky was a medical miracle. The fact that we were talking about a lack of intervention was unexpected. By everyone. Especially the doctors.
On this day, Sam taught me that this entire journey could be best illustrated by our entire family walking on a millimeter wide tightrope...one that we were really unaware of. We balanced our marriage, children, self confidence, health, and sanity every single day, and Sam's story could have been decidedly different just months before. I finally started to realize just how serious this journey had been, and how lucky we were to be still in it. On this day, Sam taught me acceptance
Day Six?
5 days. 9 months. And a roller coaster that I never expected as Sam graced us with his presence on September 11, 2013. I've learned so much...about the strength of my children, my parents, my family, my wife, and myself. I have realized that the human spirit can handle so much more than you really think, yet only because you have no other choice but to handle it. And I understood that this journey is not yet done, but is definitely on the upward slope.
But, outside of all of that, I realized something else. Elisa did too. We couldn't have walked that figurative tightrope without all of you. You're probably thinking "well, I didn't do anything, right?" You're wrong. If you're reading this blog, you already did something. So many of you cared, sent "Likes", comments, words of encouragement, and love. When I tweeted during Sam's embolization, 50 people went onto Twitter (some of them, for the first time) to follow the story. Some of you came to St. Mark's to see Sam or to see us. Some visited us at home. Many visited at PCMC. Some of you left food on our porch. We received coffees on multiple days, and visits when we needed it the most (even on embolization day). We got muffins, food, drinks, and hugs. We felt your love and concern in every step of Sam's journey, and we really couldn't have survived it without that support. It's quite amazing that when you're in some of your weakest moments, small things can keep you going. And "acquaintances" become friends.
In every day of these last 9+ months, we've all had something that you haven't. We've had Sam. Sure, you've had stories, blogs, and pictures, but you haven't had him. We've been the fortunate ones. We've gotten the lessons. We've been taught by an infant. It's your turn.
On July 19, 2014, it's our turn, as a family, to give back to you and to thank you for everything you did (from liking a post to making us dinner to sitting with us during Sam's surgery) and how you helped us survive the hardest time in our lives thus far. And Sam has some lessons to teach you, too.
We will send a formal invitation out soon, but please "save the date" for July 19th. We will open our home and want you to come to something we've dubbed a "Samuelabration". We're going to celebrate Sam, his progress, and the love that he's received from all of you. This isn't one of those "oh yeah, come if you can" kind of invitations. We want you to come. We truly hope that you will make one more ounce of time to come together and let us say thank you for the support. More details are to come, but we're so excited that this day is fast approaching.
Because on this day, Sam will teach you to believe in the power and strength of the smallest among us. He'll let you see how much you saved our lives as we have been attempting to Save Sam's. On this day, Sam will teach you that you're appreciated. Loved. And that we would have been lost without all of you.
You'll see...
Day Six: Saturday, July 19, 2014
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