Sam's arrival in the world has been anything but boring. Every single day has brought new blessings, challenges, scares, and worries. Yet, as I reflect over the first three months of his life (he is three months old today), I'm struck that three specific dates seem to be sticking out for me. Three dates that will be meaningful anniversaries in the future. Of all of the days, three have been most impactful.
The first one is easy. While 9/11 will always be about the trials of a terrorist attack on American soil, I'll be blowing up balloons and Elisa will be baking a cake. Sam's birthday is such a gift for us - the fact that he made it into the world to give us this journey can and will be celebrated with a little extra gusto each year. We'll be thankful for every year we can celebrate...every milestone that we reach. One day soon, as I continue to flesh out the "prologue" of Sam's journey (I only have you up through Mr. Lukas coming to the world), you'll hear the interesting and intense story of Sam's journey (through natural childbirth).
September 30th is the second day that has stuck into my brain and will mean something in the years to come. For those of you who have been a part of Sam's journey, I think you'll know why. For those new to the experience (I think I talked about it in Chapter 2...it's been awhile!), let me explain. This was two days after we left the St. Mark's NICU. We had a scheduled appointment with Dr. Day, who would transform into Dr. Doom once we started truly understanding what was wrong with Sam. Yes, it was the day we found the abnormality in his brain. It was the day that we got admitted to PCMC. But it will be memorable for Dr. Doom's diagnosis, based on an assumption of what we'd find on the next day's MRI. Dr. Day told us that Sam would die. I remember crying. I remember the nurse crying with us. I remember laying in the sleep bed at the hospital with Elisa, not able to close my eyes without holding her hand. Horrible thoughts went through my head as I tried to understand what losing a child would be like. Clearly, the conversation changed and Sam would come home but 4 days later. But I'll never forget 9/30. It changed me.
Yesterday, I added another impactful day to the pile. I'll never forget 12/10/13. If 9/30 was the scariest day, 12/10 will be remembered as the hardest one so far. In spite of the tweets and Facebook posts, it's hard to conceptualize just what yesterday was like. I'll try below. But your emotions are so raw, your body clearly affected under the strain of constant worry. I'm surprised and relieved that Elisa and I got through it. If you followed my twitter feed, some of this will be old news. You were with me, every moment, listening to my neurosis spill out all over the twitter universe. Facebook users got a smattering of updates as well. But the blog, as always, is meant to be my mental health for the day - it's good to step away and evaluate what a day it was. So here's the third memorable day in Sam's journey thus far. The hardest one yet.
The night before, I had slept quite silently due to being awake for over 24 hours. Monday night/Tuesday morning, sleep came more restlessly. I couldn't help it, but my mind kept replaying all of the horrible things that could go wrong during his procedure. It was difficult to see hope. It was easier to see challenge and catastrophe. Where I was roused out of bed the previous morning with tidings of a low flow nasal cannula, this morning we were both quiet. It broke my heart to see Elisa silently crying through the morning. I showered and shaved, thinking that I probably should not be a woolly mammoth on today of all days. I got dressed, trying to pick out clothes that I perceived as meaningful or lucky. Elisa was nice enough to make me a piece of toast with peanut butter and jelly. As we drove into the hospital, it took great effort to swallow it down. Our drive is about 20 minutes. It took 18 of them to get through a single piece of toast. We arrived at the hospital, hopeful but nervous. Cautious but scared. I kept wondering where we would be in 6 hours...12 hours...18 hours.
We were delighted to see that Sam had a good, calm night. He had flirted and snuggled into the nurse, in the absence of Elisa . She loved it. She talked about how fun it was to have little, active, and cute babies like Sam that could interact with them. We walked into the room and Elisa took 3 seconds to pick him up. She knew that we would only be able to feed Sam up to 6:00am before he had to start fasting for his procedure. He was latched and eating by 5:30. Again, the emotions welled up inside as I watched tears roll down her face while she nursed him. Minutes later, he was done and snuggled into his mom's chest. We were forewarned that Sam would get fussy - he was last eating at 5:30am and wouldn't be taken for his procedure until 11:30. 6 hours for a little baby is just a recipe for fussiness and crying. Yet, the morning was more about us coping with the coming storm than of Sam being cranky. We took turns holding and loving him. We got him to smile, talk, and coo at us. My brother, Kelly, was the first supporter to arrive, and he got to hold Sam for a couple minutes. Soon after, my Dad arrived to offer his support and to give Sam love. There were a lot of tears in that room. Yet, none of them came from Sam.
He was a dream. Silently happy. Smiling. Cooing when we encouraged him. But, he never cried or fussed. The nurses were quite surprised. I was quite sure I knew what was happening. I'm convinced that Sam and his body had forced this action on purpose. It was ready. He was ready. He had a calmness to him that said it was time to do more than sit and. I asked Elisa over and over again about how she felt...was there a sense of dread? While she was worried and nervous, she didn't feel dread. Her instincts told her everything would be okay. I clung to that like a life raft in the middle of the ocean. It was all I had - I wasn't sure it would save me, but it was the best thing available. So I grabbed it. Elisa tried to find encouragement from the nurses and doctors, but there was an overwhelming sense of nervousness. I believe many doctors weren't sure that Sam would come back, and if he did, that he'd be in any such state to have hope. We got a lot of "well, let's see what happens" or "let's hope for the best". In conversations with a nurse, on the day of his surgery, we even got a "well, Primary Children's mortality rate is quite high!" It's times like these that I sit back in wonder that people aren't born with a filter. Where in your little brain did you think saying THAT on THIS day would be a good idea?
Just after 11:00am - earlier than we expected, Dr. Liu, the Anesthesiologist walked into the room. He was calm and collected. He was very kind. But he wasn't the person I was staring at. I was quite surprised to see the Resident that came with him. Sometimes, at your worst, you feel quite alone. Today, I was staring at one of my junior high/high school friends. I knew, from Facebook, that he was a doctor. I didn't know he was THIS kind of doctor. He would be supporting Dr. Liu and would be caring for Sam. Derric Maxfield, clad in a University of Utah head cover thing, greeted me warmly. I suddenly felt a bit better. Someone that knew me would be watching Sam. Maybe you would think that wouldn't matter. I think it does. I think,when you know the person or the person's parents, you're a little more aware. I was glad to see him. We got Sam ready for transport and then started the walk over to University Hospital.
Peoples' heads turned as we walked . A crib, holding a little baby. I wonder what they were thinking. We snaked through the halls of PCMC, and then snaked through unfamiliar halls at University Hospital. With each step, I was afraid they would stop and tell us that we had to leave Sam. I was constantly relieved to find that we had one more elevator, hall, or door to walk through. But I also knew we would eventually arrive and we did, in a cold hall in front of two seemingly inpenetrable doors. It was time to say goodbye. I refused to say goodbye. This was a "see you soon". Elisa held him first, whispering things I never heard but didn't need to. It was my turn. I took him in my arms, put my lips to his ear, and told him three things. 1) I loved him. 2) I would see him soon. 3) Fight. And beat this thing. For he was the only one that could.
I was openly crying, as was Elisa. She hugged him again and caressed his face. I reached back down and told him those same three things again. I kissed his forehead and finished with "see you soon". There would be no goodbyes. Not today. Not for a long time. But then we had to walk away, and Sam went through those double doors. We walked, almost like zombies, to the surgical waiting room. We found a seat. I started to cry harder. Elisa was weeping. My brother and Dad embraced me on the spot. I couldn't catch my breath. In a weird moment, I felt like my emotions were so raw, so untamed that I could have laughed out loud. I've never had such a lack of control over my emotions. There was nothing to laugh about, but it was like I was going emotionally crazy and my body didn't know how to manifest the tremendous fear and sadness permeating through my mind.
For awhile, Elisa and I sat together in silence. My brother escaped, and my Dad sauntered around the waiting room. Soon enough, the tears started to fade. I think we were running out. One of Elisa's sister's friends (who works at the hospital) appeared in the waiting room to see how we were doing. She hugged Elisa as fresh tears started to flow, and tried to console us. She knew that Sam was asleep and that they were getting ready to start. She also knew a bit about the doctors. Dr. Tosky was, apparently, another super star. He had studied for 3-4 additional years to become an expert in this trade. He was a highly prized recruit that the University had won, and had a strong partnership with PCMC. Dr. Liu was known as the "Yoda" of Pediatric Anesthesiology at the U. So much for Dr. Day's worries about not having a good enough doctor watching over Sam. We had Yoda. Who you got, Darth Vader?
As we continued to collect ourselves, Elisa saw that a little collection of chairs were available right next to the hallway where we said goodbye. She suggested we move over so that we could all sit together. Soon enough, Elisa, my dad, Kelly, and I were sitting and waiting together. It was horrible and wonderful, as I could watch down the hall. Wonderful that I would know when the doctors were coming. Horrible because my heart sank every time I saw a person clad in blue scrubs. A nurse came by to tell us that they had a big TV where you could see the status of every surgery happening in every room...except for Sam's room. Of course our luck dictated that this would be a blind experience. She told us she would call back 90 minutes in. It was the best we could get. We sat back and waited.
In my mind, over those first 90 minutes, I had pictures of them already starting to fix Sam. 90 minutes was a lot of time. We made small talk about nothing while we waited, and when 90 minutes passed and we had no update, we all started to get a bit antsy. Dr. Day's wonderful nurse coordinator stopped by to check on us, and Elisa's parents and my Aunt arrived to join our rag tag crew. As we waited, I felt a special twinge of sadness for my Mom (yet appreciation for what she was doing). My Mom, while we waited, was busy shuttling the kids two and from school. She did it without compliant, but was at the mercy of my texts to know what was going on. Imagine, for a moment, sitting in a room like we were, awaiting results. Tough, right? Now imagine trying to (and being forced to) go on with your day and act, with two kids, like everything was fine. The woman deserves a toast at our next party. She deserves a lot more than that...she was a lifesaver that saved my kids on Tuesday.
We finally got an update about 1 hour and 45 minutes in. And I was disappointed. Apparently, they got him intubated, asleep, and access through his groin. And they were ready to start. Thoughts of them already fixing him evaporated in my head. They were just going to start taking pictures . We still didn't even know if they could do anything to help him. As that news hit me, my nerves skyrocketed. I failed to mention that the first 30 minutes were so rough, because I was afraid that they would come out and say they couldn't do anything. Past thirty minutes, I started getting hopeful. Now, we were back to wondering if they could even do anything. The next thirty minutes were painful. Would they fail early on? And then we got a blessed visit. Two of Elisa's friends from work showed up with coffees.
One of them, Wendy, had tears in her eyes. A good friend, but someone that didn't have to show up and didn't have to care about Sam, was crying with worry. She made me lose control again. I silently wept while I saw her cry. Sam's impact, it seemed, was far beyond the Pierce clan. He was impacting a great many people. After we (meaning I) got over the cry fest, their visit was really a welcome distraction. We talked a lot - Elisa especially, and the next hour and a half flew by. Their presence seemed to relax me. Before I knew it, Elisa and I were having a spirited argument about whether writing a post on Twitter was called a "Tweet" or "Twittering". I explained to my brother, in too much depth, about my hate of all beans (and all varieties). Elisa tried to enjoy a Fuze drink...until she determined that it "tasted like ass". There were periods of normalcy as we waited. When things would get quiet, I'd start to stare back down the hall. I'd check my phone to see how long it had been. And then a new conversation would start and I'd get a bit lost in it.
As the two friends wrapped up their visit, Elisa's parents brought us a sandwich. Elisa did better than I did...I ended up force feeding myself about 2/3 of it, painfully swallowing every bite. I was amped up on coffee, but the liquid diet was all I could handle. I didn't want to eat. I was worried that my nerves would force me to lose my lunch. Literally. But I did my best and we said goodbye to Elisa's friends. Again, I can't explain how grateful I am to Wendy and Gail for their visit. As the silence started up again, Elisa decided that she needed to pump. We hadn't heard an update and we weren't expecting to for a few minutes, so I bid her adieu and she walked all the way back to PCMC. I would get random texts from her, asking if we had heard anything. When we were waiting for our first update, I was dying to go to the restroom but I crossed my legs until we got the official word. This time, I figured I was safe. So I ran to the bathroom and "took care of things" as quickly as I could. When I got back to our little cove, my brother informed me that my bad timing continued. The nurse had just come by with an update. She'd return in 15 minutes. You know that you're worried about things when you start grilling those that saw the nurse about her temperament. Was she serious? Smiling? Happy? Jovial? I convinced myself (when my brother said upbeat) that she would skip down the hall to me.
15 minutes turned into 30, and I made the mistake of mentioning the pending update on Twitter. Elisa saw it and started texting me. You see, she told me if we got bad news that I was to not tell her or text her until she got back. Now, she was convinced I knew something but was withholding information. While I waited for the nurse, Elisa's wonderful cousin, Anna arrived. Later, I'd find out that she would be our comedy release when we needed it the most. Finally, before Elisa had come back, the nurse returned sans skipping. She was smiling, though. Her update was simple. They had placed a couple coils and were waiting to see if it was taking care of enough of the flow to make a difference. They would then finish the procedure, try to extubate, and then we would see the doctor before trekking back to PCMC. We were told that Sam was "doing just fine". It was enough to give us hope. Sam was fighting.
Elisa returned, and everyone (my Mom, Twitter, Facebook) were all informed of the potential good news. Now, we had to wait for Sam and for the doctor to come out. In the meantime, Elisa took her "assy" Fuze drink and offered it to Anna. She actually said "do you want this drink? It tastes like ass." After that rousing endorsement, Anna took it. She had a swig, and I inquired as to the true assiness of taste. Anna turned the conversation around, telling us that she would describe the taste as "sour". I then asked Elisa what kind of ass she had been tasting? We started to laugh. The conversation started to fall apart. It ended with me asking Elisa if I should start referring to Sour Patch Kids as Ass Patch Kids. Needless to say, Anna's involvement in some laughter at a very stressful moment was appreciated. We needed to laugh...we were simply out of tears.
And then, I glanced down the hall. For 4+ hours, I had done so to see strangers in blue scrubs. This time, I looked up to see Dr. Tosky and his team walking toward us. My initial thought (and I'm convinced it is the right one) is that he was walking with a swagger. His walk and face clearly said "yes, I'm that good." He offered to have the group go to a nearby consultation room and we braced ourselves for Dr. Tosky's assessment.
It should be noted that I was right - he clearly was pleased. He bookended the conversation with the statement that "things went as well as we could have hoped/expected them to". But then he described what he had found and what he had done. Clearly, this flow on Sam's heart has been significant. His fistula is fed by four artery feeders. As they took pictures and watched flow, they attacked the largest artery feeder, using two coils and glue. As a result, the largest feeder to Sam's fistula was occluded. Tosky estimated that they had reduced flow through the fistula by 40-50%. Whoa. They were unable to attack more, as they had to restrict the dye used, but they also had a plan for next time. When we inquired about the next procedure, Tosky said that his preference would be 2 months, and if he could get 6, it would be ideal. The better news is that every ounce, gram, and pound that Sam can gain will make it easier during the next procedure. We had gotten through the most dangerous one of all.
He stressed that Sam still had a long road to go...if they could take care of one feeder per embolization, I figured that he had at least three more embolizations in his future. But they were encouraged by the 40-50% and we now would wait to see the impact on his heart. He left us relieved and with something we longed for...hope. Now, our attention would turn to how Sam responded. Would his heart respond? More importantly out of the gate, would his brain? We collected our things and waited for Sam to appear in the hallway. Soon enough, the crib was back and they whisked him away to PCMC. We followed at a brisk pace behind them, and then split, being told to go to the PICU waiting room until they could get Sam stablized and settled. They had extubated him because the tube was blocked, but they were unsure if he could sustain it.
We sat down, relieved. Sam had a fighting chance and the words "it went as well as we could have expected it to" kept playing in my ears. But when 15 minutes turned into 30, I started to feel a bit panicked. Was something going wrong in there? Was he struggling? Linda, the Cardiac Nurse Coordinator showed up and offered to go see what was happening. 15 more minutes passed by. I was now starting to feel sick again, regretting every bite of that damned sandwich. And then, out came Linda and Derric. Derric explained that they had to intubate Sam again, and thought it better to make him comfortable as they had to watch his leg, blood pressure, and stats. We were fine with it - let him rest. Things had gone well in the procedure. Sam had a moment where he woke up slightly, but they got him quickly back to sleep. Otherwise, things went as well as they could have hoped. It would take a few minutes to get him settled and then we could go see him.
Linda stayed with us after I thanked Derric. I know he's already a resident but it must be stated that I believed he is/will be a tremendous doctor. He explained things with humanity, and with the details that us crazy parents need to hear. As we talked to Linda about next steps, the PDA, and what we could expect, more time passed. After 45 minutes since sitting down, Linda went back to see what was up. She returned, stating that they had put the tube too far in the first time and had to readjust. She left and then we sat. Another 30 minutes passed. I was starting to lose my mind. I decided to go back and ask. When I walked in, they said they thought he was ready. A nurse went off and returned 5 minutes later, saying we could go back and that they had "just finished". Either I have excellent timing (we know this isn't true...), or they forgot to come tell us. But it didn't matter. We were able to see Sam. I hugged my Aunt and brother (the last two remaining people from our waiting crew) and grabbed Elisa. When we went back, we were told to be encouraged. He was doing well.
But that's not how I felt when I saw him. He looked a bit like a cute alien. Foreign to me. I know that he had been through hell, but is face was swollen and I could tell that his eyes were unfocused (and barely open). I was so happy to see him, but I don't think I was ready to see recovering Sam. It was a bit much to take. On the medical side, we did have good news. The intubation would help, and Sam (every once in awhile) would try to breath with the machine. Their goal was to extubate the next morning. Even better was his leg. It looked great and they had a pulse in his foot. Two good things that Dr. Day said to look for - color and pulse. His stats were already starting to improve, and they expected him to be stable. Sure, they scared us by saying that he had a significant risk of stroke. But they also said he came through well. I would take it, after that long day.
As we sat and chatted, Dr. Day called for an update. He asked to talk to one of us...the nurse gave him the option. She handed the phone to Elisa, which didn't surprise me (uh oh...does he know I call him Doom?), but then I took the phone. Dr. Day was delighted to hear about the 40-50% reduction in flow. He seemed excited to find out what that meant to his heart. He asked about next steps, and when I told him that Tosky wanted 2-6 months, instead of acting deflated, he said "well, if we need more time and help to his heart, we can always fix the PDA!" Dr. Daylight? Sunshine? I'll take it, today of all days.
It took about 3 nurses and the attending physician to convince us to go home and sleep. Sam wouldn't be eating tonight, and they would keep him well sedated (on the edge of sleep) to keep his leg still and his blood pressure low. We still felt like we should stay, but were pushed to take care of ourselves. We finally relented. We walked out of the hospital after many looks at Sam (we couldn't kiss him because they didn't want him agitated) and headed home. On the way, I asked my Dad to order us a pizza. It arrived about 10 minutes after we got home.
We were so tired and exhausted from the hardest day that we literally laid on the couch and ate pizza out of the box. After, we headed upstairs, got ready for bed, and were crashing by 9:30pm. Before I drifted off, I replayed Dr. Tosky's "it went as well as we could have expected" a few more times. I was encouraged that Sam was still here, and that we had actually fixed something in his head today. And then I realized that I had just lived through the third memorable day of Sam's journey.
I'm not sure when the 4th will come. I'm hopeful that it isn't a bad day...but that it is a good one that tells us that Sam's recovery is well underway, if not assured. But that doesn't matter now. What matters is that on 9/11/13, Sam joined this world and our family. That on 9/30/13, we understood the gravity of Sam's prognosis and what was truly at stake. And that on 12/10/13, Sam took his first steps to healing himself, and us in the process. On 12/10/13, we actually started saving Sam.
On the hardest day so far.
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