**This is the third post to a long series. If you would like to read from the beginning, you can find that post here. If you haven't yet grabbed a cup of coffee from reading the previous posts, may I suggest taking a moment to do so now...or at least stretch your legs? Up to you. In my very first post of this series I mentioned, "...the last time I posted seems a lifetime away." It would have been more accurate to say it was a lifetime away. **
David and I woke the next day, Monday, April 29, refreshed, still full of hope. Our son was now a week old! How could a week have passed so quickly? Samuel had changed so much in those seven days. His cheeks and chin filled out, he was sleeping easier, and his hair--oh, his beautiful, thick head of dark brown hair--was lightening to this beautiful amber. Everything about him was amazing to me.
Even though Samuel was making progress, we still didn't have answers to what was causing his condition. The doctors and specialists continued to work hard, researching, hypothesizing, testing. We were still a long way from being able to take Samuel home. David and I decided it would be helpful to make a trip to our house to grab a few of our things, perhaps a few more clothes, take care of a few business-like items. We didn't want to leave Samuel alone, so David offered to make the trip himself. We confirmed with the nurse that there weren't any meetings with specialists scheduled, then David kissed Samuel and me goodbye. Hurry back, David! We don't like being with out you!
I was pretty nervous to be alone with Samuel. Of course the nurses were there, but I relied so much on David. Our combined parenting felt much more secure than doing it alone. If I was being pushed over the edge by the intensity of the NICU and temporarily couldn't be there for Samuel, David would step in, and vise-versa. But, it would be no different if we were at home. When David would go back to work, I would be alone with Samuel. I would have to muster up all the courage, patience, and selflessness I could manage. Today, I would do the same.
Once all 24 electrodes were connected, the technician wrapped his head snugly to keep them in place. As she was doing this, Samuel laid still. I was smiling as his peaceful state when suddenly his alarm went off. I glanced at the monitor and saw his oxygen sat levels had plummeted sharply, suddenly. In the past, I had seen him recover on his own. But I had only ever witnessed these drops when he was fussing, as if the sudden drop in oxygen levels was a result of him not taking in enough air while crying. Here, the drop was random. And he wasn't recovering. The saturation level dropped lower, and lower, and lower. I started to panic. What is going on? Oh no, what's happening to my baby? He's turning so gray! Why isn't anyone coming over to check on him? Aren't there any nurses around? Please, come help! I turned around, wondering where the heck a nurse was to help me with Samuel. There was one nurse in the area, preoccupied with another baby. Fortunately, I had developed a good rapport with her throughout our week in the NICU. I looked at her, desperate for help, "Samuel doesn't look very good, do you have a sec to come help?" She rushed over and concluded that yes, indeed Samuel was hungry for oxygen and his little body couldn't seem to recover on its own. The nurse grabbed the blow-by oxygen and held it over his face. Come on, Samuel, perk up. Come on, baby. Don't die, baby. What the heck?!?! My heart was racing. My eyes darted between Samuel and the oxygen sat numbers on the monitor. Come up. Come up. Come up. Come on, just come up already! It took all the courage in the world to hold myself together, to not freak out, to put my trust in the nurse and God. God had given us the opportunity for superb medical care, and this nurse was a shining example of that medical care. Focus on that. Samuel's numbers began to climb. Slowly, but they were climbing.
Finally, after what seemed like an eternity, though it was probably only one minute, Samuel's sats were back in a "normal" range. What. The heck. Was that?!?!?! Why did my baby's oxygen levels suddenly drop like that, unprovoked? He was breathing, wasn't he? He wasn't fussing. He seemed perfectly normal--well, he was Samuel's normal. Shaking, I thanked the nurse for her assistance. She offered her reassurance. It's okay now. The technician returned to wrapping Samuel's head. We chatted about what had just happened. Gently, she disclosed one of the reasons for the test, "We'd like to see what the brain is doing during these sudden drops, or spells. I bet you don't want this to happen, but I am hoping he has another spell in the next hour." Another deep breath, I comforted myself, remembering our constant prayer:
Lord, thank you so much for the gift of Samuel, for Your love, for our capacity to love. We ask that you bless the doctors and nurses as they continue to work as hard as they can to find answers. And Lord, please help us find the answer.
I stayed to watch the first few minutes of the test. My stress level had seriously increased within the last 15 minutes, I hadn't pumped in nearly four hours (I was pumping every 2-3 hours), and Samuel seemed to be okay again. I decided to take the next hour to pump and get some lunch. I really couldn't wait for David to return.
When I returned to Samuel's bedside, the tech had completed the EEG without experiencing another oxygen spell. Samuel's assigned nurse had finished her lunch and was finishing up changing Samuel's diaper. This was the same nurse who had been working with Samuel since Saturday. She was there when we got his eyesight diagnosis, the mom who saw his eye color. She was there to help us get the gas medicine. She encouraged us to try the football hold/head massage combo. And she was the nurse who suggested to the doctor that we put Samuel on a continuous feed. I trusted her with everything. I explained what I had witnessed, how it had scared me. She was so comforting, reassuring. She never once said, "Samuel could outgrow this," but she did say that the doctors were continuing to work hard an find out why Samuel was experiencing these spells and therefore be able to find a way to help Samuel. She then took the next few minutes to train me in using the blow-by machine. If Samuel had another spell while I was around, now I had the ability to help him.
I spent the next hour rocking Samuel while I waited for David. It was bliss, rocking my son, humming to him. His face was so relaxed. His head had a few remaining marks from the EEG hidden among his thick hair. My love for him continued to grow deeper and more unconditional with every minute I spent with him. I just knew that whatever it was causing Samuel's condition, whatever his high-needs would ultimately be, we would figure out a way to thrive.
While we were rocking, Samuel's nurse came by to see when David would be back so we could meet with the geneticist. I said 4:00 PM should work great, David would be back soon. With just under an hour until our meeting, I laid Samuel in his crib and kissed his forehead before leaving to quickly pump. Sitting quietly in the pumping room, I pondered what we would learn in this meeting. I felt excited and afraid at the same time. Could we possibly have results from the DNA tests this quickly? If so, what would we learn? Will David and I truly be able to handle caring for a high-needs child? As I finished, David texted that he had returned. He brought our nursing pillow, one of Samuel's blankets and a little crucifix from home to use at Samuel's beside in the NICU. I gave my milk to Samuel's nurse, then followed her and David into the meeting room. The geneticist and neonatologist on call were both waiting for us. Looking forward to answers, hand in hand we sat down.
Samuel's nurse closed the door. After quick hello's, the neonatologist informed us that we had some test results come back. The geneticist began:
"Samuel has Trisomy 13."
Shock. Instant tears. Suppressed gasps.
"There is no easy way to say it. The DNA tests showed he has three copies of the 13th chromosome. It is full trisomy. As you may already know, Trisomy 13 is incompatible with life."
We did already know. Trisomy 13 is very similar to Trisomy 18.
"I honestly didn't think this would be Samuel's diagnosis, as I told you last week. He shows very few signs of the syndrome. But it is. It is Trisomy 13."
Silent breaths, silent tears, taking it all in.
"Do you have any questions for me?"
I looked at David, a tear rolling off the tip of his nose. He looked back at me. Our baby boy, our son, our perfect Samuel was not going to survive. We thought learning our son would never see was hard. I gave David space to ask a question. He closed his eyes as if to say no, then I thought of something: "Why didn't he miscarry?"
The geneticist welcomed the question, responding, "Generally, that is the case. But some babies, though rare, do make it to term. Those that are born with Trisomy 13 or 18 don't live past the first few days of life. Of those that do, less than 5% make it a full month. Of those babies who live a month, only 1% will make a year. Past that, it's truly unknown."
More silence. More processing.
"Why doesn't Samuel exhibit many of the typical symptoms?"
"We can't be sure why Samuel's trisomy is so subtle. But as with any baby, each case is unique. Here is some detailed information about Trisomy 13. Feel free to read through it, or not." The geneticist handed us a thick packet, then continued, "We can't say how long Samuel has to live. But we are putting together a palliative care team to help you make decisions regarding his remaining days."
I asked, "What kinds of things will we need to decide?" This was all so foreign to me. Neither David nor I had ever been the party responsible for making decisions at the end of someone's life. We had no idea what to expect, what decisions needed to be made, let alone what would be ethical.
The doctor explained we would need to decide how much medical intervention we would want for Samuel, ranging from doing everything imaginable to extend Samuel's life to doing absolutely nothing at all, which would include removing the feeding tube, oxygen support, everything. He expanded on that by saying most families choose to simply make the last days of their loved one's life as comfortable as possible. We would work with the palliative care team to help us decide what that might look like. As long as we needed it, the medical staff would provide as much support as we wanted, as we needed.
We thanked the doctors. Before we parted ways, we asked if it was okay to have a priest come and baptize Samuel as soon as possible. We had to get him baptized so that he could return to Our Father in Heaven. There was nothing more important right now.
"Of course. Anything you want."
We shook hands and the doctors left.
We shook hands and the doctors left.
Samuel's nurse hugged us. Tears in her own eyes, she said, "You asked such great questions, and you know the first thing I thought of when you asked why Samuel didn't miscarry? I know in my heart it is because God wanted Samuel to meet you, for you to meet Samuel." She then left the room for David and me to be alone. We broke down. Sobbing. Holding each other. Shaking. Completely and utterly heartbroken with the diagnosis. But it was an answer. We got an answer before it was too late. God heard us, he answered our prayers. We now had the answer to the cause of Samuel's condition.
Over the next hour, we focused on communicating the diagnosis to our immediate families. I texted my dad to see when he was going to be home from work. I wanted him and my mom to be together when we broke the news. He replied with too late a time for my liking, so I requested he go home now. We called the hospital priest to request a baptism as soon as possible. We called David's parents. Short, sweet. Not much to say. We called both of my sisters. Both were several states away with full-time jobs and too far to be able to fly home any time soon. We called Samuel's god-father, our future brother-in-law. We called David's brother and sister-in-law. We called David's sister. And finally we called my parents. We worked through the tears, then let them know we were going to have Samuel baptized tonight. My parents lived only 30 minutes from the hospital, and our hope was they would come up for the baptism. It was our plan, three months prior to his birth, to have Samuel baptized on Father's Day. To have all his family and friends around him. Obviously, that plan had to change. If my parents could at least be there with us...at least there would be a representation of the entire community that loved Samuel so much.
We had a plan in place. For this evening at least. We attempted to choke down some food, and as per the usual ritual, pausing before hand to pray, to thank God for finding an answer, asking that we continue to be blessed with the grace, strength, courage, and understanding we would need to live out the path God had laid before us. After dinner, I needed to pump--my ability to produce milk was still vital to Samuel. No one knew how long he would continue to need food. Meanwhile, my parents arrived at the NICU and were waiting in the family room. When I was finished, David and I went to Samuel's bedside. His peaceful face showed no signs that he would die. Death seemed truly unrealistic when you looked at him. But it was a reality. We were not going to let this new reality wasn't change the way we lived our life with our son. Just as we had for the past week, David and I would continue to savor each and every second with Samuel. He was our gift from God, for however long. How could we not treasure each and every moment?
David and I laid our hands on Samuel. We shed tears over him. We kissed him. We blessed him with the Sign of the Cross. It was 8:00 PM, about the time that the priest said he would stop by for the baptism. I went out to the family room to see that the priest had in fact arrived, whom along with my parents I welcomed back to Samuel's beside.
Typically the NICU doesn't allow more than three people at a time, including parents, to visit the babies, but our rules had suddenly changed because of the circumstances. Our night-time nurse had positioned a privacy screen around Samuel's sleeping area. The priest requested some sterile water for the Sacrament of Baptism and permission to use the Holy Chrism, a wonderfully scented oil used in the Sacrament of Confirmation. Father instructed me to hold Samuel with his head in the center of our circle while David held a soft towel under his head. After an opening prayer and scripture reading, Father baptized Samuel in the name of the Father, and of the Son, and of the Holy Spirit. My heart was so heavy, so conflicted. I was disappointed that Samuel had to be baptized like this, in the NICU. I was scared about facing Samuel's demise and ultimate death. But I was also filled with joy that our son was now free from original sin, completely pure in spirit, and would return directly to God's loving embrace as a saint. The priest continued the ceremony with the Sacrament of Confirmation, confirming that he received the Sacrament of Baptism. He anointed Samuel's forehead with the Holy Chrism, "Samuel, be sealed with the gift of the Holy Spirit."
We concluded the ceremony, wiping away our tears. My parents hugged us, my mom cupped her hand around Samuel's sweet little head. My heart swelled with gratitude that my parents could be there. They took pictures of the three of us. We then asked the nurse to take pictures of all of us. Afterward, my mom asked if she could hold Samuel. Typically, this would not be allowed. But again, these were not typical circumstances. I place Samuel in his grandma's arms. I have never felt so much joy, so much pride. To see my mom as a grandma, to give her a grandson. The depth of her tears I will never fully know. My dad stood next to her, gazing at little Samuel. I didn't mourn for myself, that I would be losing my firstborn child. I did feel sorrow, guilt perhaps?, that my parents would be losing their first grandchild.
That night, I learned something about my dad, that his Hebrew name is Shemu'el, or Samuel. In choosing the name "Samuel David" we were very intentional about the connection to family and strong Biblical roots, but from what we knew the name came from David's side. Samuel David is of course my husband's namesake, but that would also make Samuel his great-grandfather's namesake, for David was named after his maternal grandfather. But David's grandfather was nicknamed "Sam," an outcome of his life-time service in the air force. Stories about Sam depict a man who was strong, independent, with a passion for life--an inspiration to David, and through the stories an inspiration to me. We were inspired to consider the name Samuel. It was a name that both David and I loved, why not combine it with David? Both names would have a family tie, and both are reminders of two strong people from the Bible. Samuel's name continued to prove to be perfectly fitting as we discovered his fighting, independent personality, but now even more fitting because his name ties to all of his family roots--his father's and his mother's.
My mom placed Samuel back in his crib. It was time to say goodbye. She leaned down to kiss his head, fighting back tears. My dad lovingly pressed his hand on Samuel's tummy, then turned with my mom to walk out. David and I followed them. We thanked them, hugged again, and said goodnight.
David and I returned to Samuel and just as we had the nights before, we stayed late. Rocking, holding, talking, even laughing. The privacy screen made Samuel's space feel like a real room. We soaked up every minute, both of us present, in the moment, so that we would never forget. It didn't matter how many days we would have left with Samuel. Every day that we would be given we would be sure to live to the fullest, to LOVE to the fullest.