Samuel’s Eulogy

I want to share the eulogy I wrote for the program at Samuel’s memorial service. What I ended up writing was more like a summary of his time with us. As I looked back at my calendar for the months of my pregnancy, I realized Samuel had done a lot in his brief life! I asked our friend Dayle who works at the church office to let me know if I needed to shorten it to fit in the program. Instead, she redesigned the program, adding an extra page so we wouldn’t have to leave out a single detail! 🙂

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Samuel David Kniley

Samuel David Kniley was born on January 24, 2017 at 2:22 a.m. and passed away on January 25, 2017 at 4:30 p.m. His family was blessed with his sweet presence for nine special months during pregnancy and 38 beautiful hours after birth, before he was peacefully ushered into heaven while in the loving arms of his parents.

Samuel’s life was brief, but rich. Knowing his life might be short made every moment that much more precious for his family.

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Life on the Inside: 9 Months

The news of this pregnancy came as a special Mother’s Day gift for Joanna, and an eagerly-awaited surprise for her and Bob. While safe inside the womb, Samuel got to join his big brother Daniel for lots of fun events: they visited a local farm and The Strong Museum of Play, had numerous playdates with Daniel’s friends and cousins, played at the beach, hiked at Letchworth, and took a safari ride at a wildlife park.

Samuel was there on a Sunday in June when his brother Daniel was dedicated at church, although no one knew his parents were secretly dedicating him too! Samuel had an epic summer: he attended his first baseball game and first wedding, took road trips to Pennsylvania and Baltimore, celebrated CT’s 10th anniversary, and made an international trip to China! He stayed at the Golisano Children’s hospital for four days in August when his brother was diagnosed with diabetes. That hospital became an important place for the Kniley family and their boys within the span of six months.

He celebrated the birthdays of his mom, dad and two-year-old brother. During the fall, Samuel attended his Great Grandpa Kniley’s funeral.  He helped vote in his first presidential election. He experienced his first Rochester winter, and joined extended family to celebrate his first Thanksgiving and Christmas. He even rang in his first New Year!

He spent most of his life going everywhere his mom went ;-): grocery shopping, D-group, church nursery, small group, baby showers, library, dentist, chiropractor, Aunt Gen’s hair studio, sisters brunches, farmers markets and family dinners. Samuel was the main topic at countless prenatal appointments and he made his appearance in multiple ultrasounds!

His favorite times of the day were listening to worship music while his mom cooked dinner, hearing his daddy’s voice when he came home from work, playing and getting “smooshed” by his big brother, and snuggling with his mom and brother in the rocking chair at bedtime.

Samuel joined his daddy at CT training events, sat outside while he worked in the garden, and he got to be there for the launch of his dad’s wedding photography business. He joined his dad for a special trip to Gettysburg with four generations of Kniley men. Samuel liked to tag along with both his parents on their weekly date nights and even a fall weekend getaway in Ithaca!

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Life on the Outside: 38 Hours

Samuel was welcomed into this world with exclamations of joy and relief! For 38 hours he was surrounded by his loving family and given the best of care by the fantastic NICU team at Golisano Children’s Hospital. Against all odds and hospital visitor policies, he lived long enough to meet all of his aunts, uncles, and grandparents! He was loved, held and cherished by his mother, father, and brother.

As his brother Daniel summarized so well, now baby Samuel is “all done breathing” and “all done crying.” Samuel gets to grow up in Heaven now, with no more breathing tubes, no more tears, and no more Trisomy 18. He is finally free and healed! With his new perfect body he can grow up and learn to walk, talk, run and play, in the presence of God for eternity! His family will always remember him and miss him with all of their hearts until the day they are finally reunited again. Samuel was one of the greatest gifts his family has ever been given.

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Checkout Lines and Receiving Lines

It’s hard to believe it’s been nearly two months since two of the most intensely emotional days of my life: the day we met Samuel and the day we said goodbye. Sometimes I feel like this was all just a dream. It’s surreal to look at our family now and from the outside, our life looks almost exactly the same as it did a year ago. It’s just Bob + me + one cute toddler, but now no pregnant belly and no newborn baby.

As I meet new people, or bump into friends I haven’t seen since the summer, it’s strange to know that unless we tell them about Samuel or they happen to read our blog, they will never realize that our lives just changed forever.

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Almost every week of my pregnancy, I went grocery shopping at Wegmans. As I pushed the shopping cart with Daniel, I felt so much joy inside because I loved getting time with my two boys while I still could. It seems like such an ordinary thing, but it was one of the few places I went where no one knew about Samuel, and complete strangers would congratulate me and make the normal pregnancy chit-chat. Each visit to the grocery store marked one more week Samuel was still with us, and I never knew which one would be his last.

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The first time I went back to Wegmans after Samuel died, I was on my own that day. I felt a new depth inside me, and I almost wondered if I looked different. I was so aware of my recent loss and grief, but I doubted anyone looking at me would guess I was a newly-bereaved mother.

I pushed my small cart through the produce section, slowly for a change instead of rushing through my list, and I looked at the faces around me. I felt compassion for the other shoppers and workers, wondering what kind of suffering each person has walked through. I know I’m not alone in the heartache and pain we experience in this world.

I passed a young man who helped load groceries into my car a couple times when I was very pregnant just weeks earlier. Did he recognize me? Would any of the cashiers remember me and ask where my baby was? 

As I joined the checkout line, I spotted a young couple ahead of me holding a newborn baby. I veered my cart at the last minute to switch to another line. Two weeks earlier I’d held Samuel in my arms as he took his last breaths, and my emotions were still too raw. I didn’t know if I could look at another newborn too long without breaking down crying.

I didn’t recognize the cashier who greeted me, so I was able to get through that trip as just another normal shopper. I am acutely aware that we interact with people in seemingly ordinary ways each day, but we have no idea what a person might be going through. I have a feeling the way I look at people around me will never quite be the same.

When we started this journey last September, we didn’t know where it would lead. But Bob and I both felt like we should share Samuel’s story through this blog. This was a big step for me, because I’m normally a very private person who rarely posts on Facebook, and it’s vulnerable to share publicly about something so close to my heart. Bob always reminds me not to compare our situation to anyone else’s, but sometimes it’s hard to tell our story because I know many others have walked through much worse. But this is the story we’ve been given and I feel compelled to tell it, and I trust that God will touch countless hearts through Samuel’s brief life because we chose to share him with you.

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We have been truly touched by the friends, family and even strangers who have prayed and taken time to express love and compassion, for us and a little baby they never even met. So many people attended or watched Samuel’s memorial service online. I never expected to enjoy a memorial service as much as we enjoyed Samuel’s. This might seem strange, but I told Bob later that I liked Samuel’s service more than our wedding day! Partly because our incredible church family came together and did most of the work to put together an amazing service and reception!

But mostly, I think it’s because of our receiving line and all the people who came. I used to think receiving lines were a bit awkward and superficial, because I never know what to say when there’s only a few seconds. We actually skipped doing a receiving line at our wedding to save time, but I later regretted not making time to greet everyone who came to our wedding. I felt a little bad for the long wait everyone had after Samuel’s service, but it was incredibly special for us to hug and greet each person who came to honor his life with us.

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I had worried we might come home after Samuel’s service feeling sad and alone, but I returned with my heart overflowing. I still picture the faces of different people who came, and even if I don’t remember exactly what either of us said to each other, I feel so warm inside just knowing that they cared enough to come. I know many more would have loved to be there, and I was surprised so many could make it on such short notice!

I think from now on I will wait in receiving lines, and stop feeling awkward about it. I’ve discovered that with receiving lines, sympathy cards, and conversations that it doesn’t matter so much what people say or write, it’s just meaningful that they take time to show they care.

Since Samuel’s memorial service, my heart has been overflowing with gratitude for the people in our lives. I wish I had time to personally thank every single person who prayed, gave us medical care, helped with the memorial service, sent a card, gave gifts and flowers, brought a meal, took time to listen or give a hug, and showed us love during this season. Please know your expressions of care and compassion have brought so much warmth to our hearts in the midst of our grief. I can’t imagine going through any of this on our own — without Jesus, or without the love of our family and community who has surrounded us during this time.

We never stop thinking about Samuel, and it’s been very healing for us to get to share him with so many people. Thank you for taking time to care and remember Samuel with us.

Samuel’s Memorial Service [Videos]

Last Saturday we held Samuel’s memorial service. I understand events like these are often tough for families, and rightly so. But I went into Samuel’s service excited – I was happy to share Samuel’s life with so many people.

Because of how short Samuel’s life was, only our immediate family actually got to meet him in-person. That was sad for me, because we loved getting to share him with people. Samuel was my son, and I was proud of him, and happy to introduce visitors to him.

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His service was an opportunity to share about him, and I was not inclined to hold back in sharing stories about his birth and life with us. I ended up speaking for 31 minutes (!), which feels a bit long, but we had so many great things happen during our time with him, I didn’t want to hold anything back.

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In the end, my heart was full that day, as it has been since then. In the future, I’ll share some thoughts on the uniqueness of our grief for Samuel’s loss, but ultimately I was excited to share Samuel’s story with so many friends and people who care. His memorial service was our chance to do that, and we were touched that so many people came or watched it online.

Joanna and I want to share the service with anyone who would like to experience Samuel’s story. This video is the slideshow we shared during the service. For me, it’s powerful, emotional, significant, difficult, beautiful, and painful, all at the same time. I’m so happy we have these pictures and videos to remember him forever.

We also have a great recording of Samuel’s memorial service. It’s 85 minutes long, so I’ve posted some notes about timing below if you want to skip to certain sections. Of course, I think the whole thing is wonderful, so feel free to enjoy it all the way through 🙂

Service timing:

  • 0:04 – Pastor Josh’s opening remarks, announcement, and prayer
  • 2:31 – Song: Great are You Lord (All Sons and Daughters)
  • 7:45 – Scripture reading (Psalm 23) by Joanna’s sister-in-law Bethany
  • 12:05 – Fingerprint tree and special music: Light of the World (Lauren Daigle)
  • 17:43 – Joanna’s sister Genevieve shares
  • 22:00 – Bob’s sister Kristina shares
  • 26:43 – Bob shares
  • 56:48 – Slideshow of Samuel’s life
  • 1:04:16 – Pastor Josh’s message
  • 1:16:16 – Song: I See Heaven (Bryan and Katie Torwalt)
  • 1:21:06 – Pastor Josh’s closing remarks

Joanna and I hope these videos are a blessing to you, as they have been to us.

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Samuel’s amazing NICU nurse came to the service – we love you, Amy!!!

 

 

Saying Goodbye

Update: we’re having a memorial service for Samuel on Saturday, February 4th, 2017. All are welcome. See our invitation for details.

Samuel David Kniley passed away peacefully in our arms today, Wednesday, January 25th at 4:30pm. We didn’t think his health would worsen so quickly, but today worked out much differently than we expected.

Samuel was doing well his first day, and was scheduled for surgery at 11 this morning, but overnight his breathing capacity started to decline. This is a common occurrence in Trisomy 18 babies, but Samuel started down that path sooner than most.

The medical staff started to give him increasing amounts of breathing support as his numbers worsened. In the morning his changes were gradual, and they thought he might make it another 24 hours or so.

img_4371But after lunch he took a turn for the worse and needed increasingly frequent additions to his oxygen support. He rapidly approached the upper limit of what the medical team could provide, and we agreed the best thing we could do was hold him and keep him comfortable.

Joanna sat in a chair next to his bed and we handed Samuel to her for the first time since right after she delivered him. Our wonderful nurse gradually disconnected his wires and tubes as they became unnecessary, and Joanna got to hold our beautiful little boy as his breathing became less frequent.

Eventually we sat together, and Joanna graciously let me hold Samuel for a long time. Joanna carried Samuel for nine months and delivered him into this world, and she allowed me to hold him as he left it. His heartbeat continued for over an hour, and finally stopped at 4:30pm.

Most of our family joined us in our room to hold Samuel for their first time and cry with us. Our nurse helped us make some memories and keepsakes, and Joanna and I got to pray and enjoy Samuel on our own after our family left.

img_4415img_4446img_4503We are so profoundly thankful for the gift that Samuel has been to us. We had 38 hours with him and are heartbroken beyond words to have lost him so soon, and we will grieve his absence for a long time to come. But he will always have an incredibly special place in our family as our second child, and we will cherish his memory forever.

We’re on track to come home from the hospital tomorrow. Our plan is to lay low for a while, and we’ll probably have a service in the next few weeks to remember and celebrate Samuel’s life.

We’re sad that we didn’t have time to share Samuel with so many of our friends and extended family in-person, but we’re so thankful for the many people who read this blog and express so much love and support for us. We might not be able to respond to every message we get, but please know that we receive all of your love with great affection and kindness in this difficult time.

Thank you for standing with us. We are thankful, and devastated, and grateful, and blessed, all at the same time.
– The Knileys

Awaiting Samuel’s Arrival – Week 40

We just arrived at the hospital, eagerly awaiting Samuel’s arrival. We’re starting the induction process this morning, and we hope this will give us the greatest chance of meeting Samuel alive.

This journey with Samuel has forced us to answer some of the most intense and gut-wrenching questions of our lives. Now all of our plans and desires will meet reality, and we’ll finally see how many of them come true – along with everything else that comes our way that we never expected.

We likely won’t post here again until Samuel arrives. Please pray for:

  1. A quick and uncomplicated natural delivery.
  2. Samuel to be born alive!
  3. Peace-filled wisdom for Joanna and me as we make decisions during labor and delivery, and regarding Samuel’s care.
  4. Everyone involved to make powerful memories and appreciate every part of this experience.
  5. A tangible sense of God’s presence and peace throughout labor and during our time with Samuel.

Thank you for your love and care for us. We need your prayers very much right now.

Waiting – Week 39

We’ve been quiet with updates recently, in part because it often seems like something is about to happen – then it doesn’t. It’s tough to write when there might be a major change within days. That’s still possible, but here’s the latest:

Our last blog in December delivered the wonderful news that Samuel was growing, right when the doctors saw signs he might be trailing off. This was one of the best Christmas gifts ever. We actually got to enjoy the holidays!

I was surprised at how little his situation was on my mind over Christmas week. Celebrating with Joanna’s family was great, and my sister’s family came up from Baltimore for five days. We wouldn’t have been part of those events if we were in the hospital over the holidays, and it was the closest I’ve ever felt to a reprieve: a wave of tragedy was approaching, then suddenly receded. It was a happy time.

Two weeks ago we had another ultrasound, and this delivered the news we had initially feared: Samuel’s growth had slowed way down. Babies are supposed to grow significantly in their final weeks, so this is generally a problem.

But this time the doctors had surprisingly little urgency regarding action we should take. Samuel was 37 weeks, which is basically full term, and they didn’t think an induction was necessary if we didn’t want one.

This was a surprise. We were packed and ready to go to the hospital at the first sign of trouble, but we decided to wait for a few days. Those days stretched into a week, and now two.

Yesterday we reached 39 weeks, and the doctors’ message is much the same: “If you want to induce, we’ll make it happen. If you want to wait, no problem.”

We’ve been wrestling with this difficult choice for two weeks now. Do we wait days or weeks more, hoping Joanna goes into labor naturally, risking the possibility of stillbirth along the way? Or do we induce, even though Joanna hasn’t progressed much toward labor? A long induction could be exhausting for Joanna, reducing the energy and attention she can give to Samuel after he’s born.

It’s a terribly difficult question to answer because of its consequences. Waiting on a natural start to labor could take a while, which gives Samuel’s health time to fail in the womb. A long induction could sap Joanna’s energy. And bringing Samuel into the world might mean he’ll die soon afterward – how can we decide to move that date any sooner?

I honestly don’t know how to make this decision, so we talk, and we pray, and we wait, hoping that either Joanna goes into labor naturally before Samuel passes away, or we both feel enough peace or a sense of urgency to start an induction. So far, neither has happened.

In the end, I still very much hope to meet Samuel alive. I have no idea if we’ll get that privilege, but we hope he’ll come soon, and that we’ll have energy to give him when he does.

Please continue to pray for us. We’re less than a week from Samuel’s due date, and it’s hard to believe we’ve made it this long! Please pray for him to arrive soon and grace for all the decisions we’ll need to make.

Hope

Previous to this journey with Samuel I never would have identified “hope” as hard or painful, but I’ve learned it can be when I don’t know what to hope for.

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Joanna outside the doctor’s office

My emotions, and hopes, have been all over the place in the last few months. In an ultrasound a few weeks ago the doctor told us Samuel was very likely to not be born alive. Samuel’s growth seemed to be slowing down, and that’s not a good sign for an already-underweight baby with significant developmental issues.

I left that appointment terribly sad and hurting. I realized I had hope that Samuel would be born alive, that we’d get to hold him and look into his eyes and feel him move and tell him we love him. Hearing that news crushed the faint hope I had, and I hurt at the thought of not holding our living son.

Then we had an appointment yesterday, and the new images told a better story. His physical problems are still there – but he is growing! He’s still small for his gestational age, but he added over 30 grams of weight per day over two weeks, which, in technical terms, means he’s crushing it! If his growth had stopped already we’d likely choose to induce soon, but now we’re almost certainly not going to do so before Christmas, and if he keeps growing we’re happy for him to stay inside for as long as he wants. Yesterday’s visit in many ways saved Christmas for us and our family.

It’s all a huge lift to my spirits. And yet… only to a point. Samuel is still at risk for stillbirth, and yesterday’s news didn’t change his long-term prognosis. He still has Trisomy 18 and a raft of complicating issues. He now has a better chance of surviving birth, but if he does there is almost certainly a hard road ahead of him. He could pass away within hours or days of being born, and that’s not necessarily an easier way for us to say goodbye to him. If he’s stable, then we have difficult choices to make regarding major surgeries he may need. In many ways, a stillbirth would be easier, or at least more straightforward, as terrible as that is to say.

But a stillbirth is not what I want! I want my son!! I want him alive and part of our family. I want a picture with both of our sons alive and sitting with us. I want to speak to him and know he hears me. I don’t want him to suffer (and he won’t, the doctors tell us), and I don’t want us to need to make hard decisions. But I so want to meet our son alive.

In allowing myself to actually hope for a certain outcome, I think I’m opening myself up for a greater sense of disappointment and loss if it doesn’t happen. I guess I just don’t care – I’m willing to risk it. This is already so hard, so painful to walk through, that I’m willing to risk a little bit more if it means I can have a spark of hope in my heart that something beautiful might happen against all the odds.

My mind is aware of the risk, and I feel the pull to lower my expectations. I could simply say: “I hope Joanna comes out of labor ok, and whatever happens with Samuel is what happens.” I want good health for Joanna, absolutely, but surely there’s more I can hope for than that!

It’s not safe to hope for things that are so uncertain. I don’t want to be unrealistic, but I have to say: I hope to meet Samuel alive. I’m not pinning my future happiness on him having a long life, but I do hope to meet him alive for at least a short time. I realize that’s risky, and we could have difficult days ahead with him if I get my wish. But I hope just the same.

Week 33 – Our (Not So) Normal Life

If you could see our family calendar this week, you’d get a glimpse of what this season is like for us. It’s bizarre to be simultaneously planning our baby’s birth and death while carrying on with the ordinary things of life.

One day I have an ultrasound, the next a hair appointment. Tuesday we met a new pediatrician for Samuel, Friday we meet the funeral director. I have a dentist appointment, Daniel has a diabetes appointment. I contact our doula, Bob calls the funeral home. Last week Bob and I spent our date night picking out paint colors, this week we spent it writing our birth plans. We now have a seven-page document spanning every scenario from stillbirth to live birth to Samuel passing away in the hospital sometime after birth, and still I don’t feel prepared. How can we ever really be ready? I never felt prepared to have our first baby, but I sure don’t feel ready to lose our second one.

Thanksgiving Day marked exactly 12 weeks from the day of the ultrasound that changed everything. As I told my family later, I think it was my favorite Thanksgiving yet. Something about this season, with the looming sadness, has made other parts of life feel even sweeter. There’s a lot I don’t take for granted anymore. I feel so thankful to still have my two boys alive and well. I’m amazed Samuel has stayed with us this long. After the initial diagnosis, I expected to lose him any week. I worried anytime I went a couple hours without feeling him move. Three months later, he’s kicking more than ever, and life almost feels normal. Almost.

I smile whenever strangers congratulate my pregnant belly. It used to feel awkward; now it’s kind of nice that at a glance we just look like a happy family with a cute two-year-old and another one on the way. It’s less complicated than trying to explain to strangers in the grocery aisle that, Yes I’m expecting another boy, but No, I’m not so excited for how close our boys will be growing up, because I’m not sure one of them will get to grow up.

At first after Samuel’s diagnosis, we prepared our hearts for loss. A stillbirth seemed likely, and we knew it would be a blessing if we even got to hold Samuel for a few moments alive after his birth. As the weeks carried on, we found stories of the T18 kids who survive longer, and our thoughts shifted from death to life: what if he makes it? Not just a few hours or days, but weeks, months or even years? We started exploring what it looks like to bring home an infant on a ventilator and feeding tube. What surgeries Samuel might need, what medical interventions it might take to prolong his life.

After my ultrasound this week, we are starting to feel like loss is more inevitable. They saw a couple new issues with Samuel: they spotted a mass in his lungs that could make breathing even more of a problem, but potentially make intubation less possible. There is a problem with his umbilical cord that could mean he’s not receiving all the nutrients he needs, and he could stop growing and thriving in the womb. It looks like his growth is starting to plateau when now’s the time he should be growing more than ever.

We’ve been praying God would take the hard decisions away from us, that we won’t have to make life and death decisions for Samuel. Or that if we do have to make decisions, it would be so obvious and clear which way to choose, and we’d feel His peace for every step. In some ways, these new problems could help narrow down our options for what is even possible for Samuel. We know ultimately heaven will be the best place for him, where he can be completely free and healed and whole, and so happy in God’s presence. We just don’t want to have any regrets that we could have done more for Samuel in his time with us. Please keep praying that God would lead us so clearly along the way in each step we should take. Thanks for caring about us and being part of our not quite normal life. 🙂

SPA Appointment – Week 25

This week I had my first SPA appointment, though not the kind you might think! 🙂 After my 20-week ultrasound revealed Samuel’s Trisomy 18 I was transferred to a high-risk pregnancy group, Strong Perinatal Associates, affectionately called by its acronym SPA. Women literally call in and say, “I’d like to set up a SPA appointment…” 🙂

On our way, I felt tense for some reason. As Bob and I talked in the car ride, I realized I was nervous about two things: I didn’t know how the doctor would view our choice to continue this pregnancy, if we would be misunderstood or unsupported. And knowing how I am at doctor’s appointments, I always feel bad if we take too much of a doctor’s limited time, and I knew Bob had a growing list of questions he’d prepared over the past five weeks. I really wanted to be able to leave with a sense of peace and our questions answered, but when I’m feeling rushed I don’t like to ask all our questions. We arrived early and Bob spent a few minutes praying that I would feel peace, that our appointment would go well, that we’d feel respected and supported and leave with our questions answered.

Within minutes I started to relax, from checking in and joking with the friendly receptionist to being whisked right back by the nurse without needing to sit in the waiting room. Then we met with the most wonderful nurse practitioner I could have asked for! She didn’t even look at her computer or run through her standard questions until about 45 minutes in. She first wanted to hear how we are doing personally, and answer any and all questions we had for her. Within the first few minutes she asked if we’d chosen a name and immediately lit up saying, “I don’t know if you’re religious, but Samuel is my favorite name for a boy!” From then on she referred to Samuel by name. She was incredibly supportive of our decision to enjoy whatever time we have left with Samuel, and encouraged us to choose what we feel is best for our family and assured us we will be supported by their staff and the teams at the hospital in whatever decisions we make.

I have no idea how long they typically spend with patients, but we spent over two hours meeting with her, the doctor who originally delivered the news to us at my ultrasound, and the genetic counselor who will be coordinating our appointments with all the other groups (NICU team, neurosurgeon, palliative care, etc.). I knew it was probably an unusually long appointment even for them, but they were so patient with us, genuinely caring to make sure all our questions were thoroughly answered as we move forward. I walked out of there so thankful that God had answered Bob’s prayer and provided exactly what my heart needed!

As we learn more about Trisomy 18, it seems the longer this pregnancy continues there will be many complicated decisions before us. We will probably need to have three birth plans in place to cover the different scenarios: Samuel could be stillborn at any point right up until birth, he could be born prematurely, or he might make it full-term. If he is born alive and closer to full-term, we have many decisions to make about how much to intervene versus simply provide comfort care until he dies. Some Trisomy 18 babies only survive a few minutes or hours, some a matter of days or weeks. A small percentage survives longer. They told us the average life span is about 5 days. Knowing a baby’s life will likely be brief, many couples choose to just hold and love their baby in the time they have, and say goodbye peacefully rather than send them off to risky surgeries that might not prolong their life or significantly increase the quality of it.

From the problems the ultrasounds have shown, unlike many Trisomy 18 babies, thankfully Samuel’s heart is not an issue that would cause immediate problems after birth or require surgery. It seems the two major things for Samuel are 1) Potential feeding and breathing problems that most Trisomy 18 babies have (and we won’t know the extent of those issues until after birth). 2) Spina bifida – there is a hole at the base of his spine that would require fairly immediate surgery. If left untreated, he would eventually contract an infection that would take his life.

Our appointment was a sobering reminder that there are no “good” outcomes, just many hard decisions before us – decisions we don’t want to make for our child regarding life and death. We are asking for God’s wisdom, that He would lead us every step of the way and continue to give us peace. We don’t know the outcome, and no matter how much we plan or prepare, there’s so much that’s simply beyond our control. I’m so thankful He already sees the future and knows the number of Samuel’s days. And He is with us, taking care of our hearts in this process. If we look only at the predicted outcomes, it feels grim. But that’s not the whole story…

At church this morning, this line from a worship song stirred my heart: “Now death, where is your sting? The resurrected King has rendered you defeated!” Tears escaped down my cheeks as I pictured the day coming when I’ll hold my sweet Samuel and say goodbye. But at the same time, hope rushed into my soul knowing that Jesus died and was resurrected to take away the sting of death. Even though I will probably need to say goodbye to Samuel soon and experience the pain of loss, I know that it will only be temporary. Someday our family will be reunited with him for eternity, and that gives me hope.

We are choosing to enjoy as much time as we have, and we are grateful for each day Samuel is with us. Every kick and movement reminds me that, for the time being, he’s still safe and alive inside me. In the meantime, we are going to treasure every moment of his life, no matter how long it lasts!

Samuel’s Heart

We went to the pediatric cardiologist a little over a week ago. They’re the first of many specialists we’ll see regarding Samuel’s condition.

We were referred to the cardiologist because our original ultrasound showed problems with Samuel’s heart. Trisomy 18 kids often have significant and life-threatening heart conditions, so this meeting was an important one. Our appointment would involve a detailed ultrasound of his heart and a consultation with a cardiologist.

Joanna’s mom came along to watch Daniel, which was a blessing because the last couple appointments we brought him along to were pretty interrupted by his squirmy-ness. All the pediatric specialists at Strong have great toys in their waiting room, so Daniel was happy as a clam to have both toys and attention from Grandma.

Our ultrasound tech was new and still in training. She was a little slow taking images, but she didn’t poke and prod Joanna too much, so that seemed like a win. We weren’t in a rush; we wanted the best images she could get.

Eventually an experienced tech came in to check things over, and they took us to a different room to talk with the doctor. She started drawing on a diagram with two hearts sketched side-by-side. First she drew a normal, healthy heart; then, Samuel’s. To my untrained eye, they looked pretty much the same.

“I have good news: your baby’s heart doesn’t have any major problems. There’s a small hole in the wall between the right and left chambers, but many healthy babies have this condition, and it often closes on its own.”

I blinked a bit. I didn’t know what to do with such a positive report. From our reading about Trisomy 18 I’d expected the worst: an improperly-formed heart that couldn’t sustain his life outside the womb. This was far better news.

The doctor told us the small hole in Samuel’s heart will likely not need immediate attention after he’s born. This is a considerable relief for us because it removes one of the big questions we could have faced: do we need to perform heart surgery on our newborn? Intervention questions are even dicier because Trisomy 18 kids’ damaged genes often slow recovery, which is already not trivial for any newborn, regardless of health.

As far as we know, Samuel’s other health concerns are still there. But we’re thankful to have one of our potential difficult decisions taken off the table for now.