Bob – Kniley Family Updates

Introducing David Josiah Kniley

So my wife did something amazing this weekend: she gave birth to a healthy baby boy! David Josiah Kniley was born at 2:02 a.m. Sunday, December 30th, 2018.

The brief story is: Joanna’s water broke Friday afternoon, in the middle of a major house project I’d just started – that’s a whole separate story! Labor didn’t start quickly afterward, so we checked in at the hospital Saturday afternoon to get induced. It took us a while to get admitted, and then they started the induction process that evening.

There were more similarities with Samuel’s birth than we would have liked at this point. We were being induced, which isn’t a picnic. The methods of induction were the same as Samuel’s, and Joanna and I were both pretty emotional for a while as we processed these reminders of our labor and delivery journey so far: Daniel’s emergency C-section, Samuel’s high-risk delivery and not bringing him home, and Baby #3’s miscarriage.

It was here, during this emotional high point, that our amazing nurse midwife, Sarah, stepped in. She happened to be one of the few midwives in the practice who we hadn’t met yet, so we didn’t know what to expect. But God knew exactly who we needed for this birth. Despite being near the end of her 24-hour shift and a busy night literally running between multiple labor rooms, Sarah sat down at the foot of Joanna’s bed, and quietly reassured and cared for her for at least 10 minutes. She listened and then asked if she could pray with us, and was wonderfully caring and compassionate to Joanna.

Things progressed fairly quickly from that point in the night. Active labor started around 9pm, a little after 1am it was time to push, and at 2am we had our little guy! He gave a healthy cry right away, and we had no drama at any point during labor and delivery. No masses of nurses and doctors rushing in for a low heart rate scare like both Daniel and Samuel’s labors. No wisking our baby off to special care or the NICU. He was just ours to keep and hold and love. It was magical.

The hours since have passed by in a blur of feedings and diaper changes and trying to sleep when we can in between! Our midwives and hospital staff have been wonderful. We’re relearning all the newborn stuff, and despite our exhaustion we are loving our time getting to know David. It’s still surreal that we get to take him home tomorrow. Daniel is very excited, and he absolutely loves his new little brother! 🙂 Thank you for cheering us on and praying for us. We’re deeply in love with our little 2018 baby. 🙂 Happy New Year!

Baby #4

The Kniley family has some news: we’re having a baby! And it’s a boy! Joanna is due January 1st, 2019, and we’re thankful to say everything is healthy and normal about this pregnancy. Daniel often talks about his baby brother, and he can’t wait to be a wonderful big brother to him.

For me (Bob), this pregnancy produces a significant number of mixed emotions. But first a little backstory.

You may have noticed the title of this post is Baby #4. Daniel is our first, and Samuel was our second. We haven’t blogged about this before, but Baby #3 was miscarried in the fall of last year. We had hoped that third pregnancy was progressing along fine, but Joanna had some concerning symptoms at 11 weeks, and we did an ultrasound that showed the baby had never grown past five weeks. Joanna miscarried the next day.

To put the timeline in perspective, Samuel’s condition was diagnosed in September 2016. He was born and died in January 2017, and we found out we were pregnant with Baby #3 in September of that same year. He was miscarried in November 2017.

To say that year was difficult would be an understatement. We were looking forward to Baby #3’s arrival, and we were excited to be pregnant again. It had only been eight months after we said goodbye to Samuel, but we felt ready to welcome another baby into our home. Our attitude has never been to move on from Samuel, but rather to honor and recognize his place in our family, and continue growing our family as we’re able.

Then with Baby #3’s loss, we had more heartache. His pregnancy wasn’t nearly so far along, but it was a pain of a different kind. Samuel’s Trisomy 18 diagnosis was a random, 1/2500 occurrence, while this miscarriage was quite typical – probably ⅓ of all pregnancies end in miscarriage (!), and it wasn’t all that different from what women all over the world have experienced.

Yet, coming after Samuel, it was easy for other questions to start creeping in: “Are we able to have another healthy child?” “Is something wrong with us?” and “What if Daniel ends up being our only child at home?” For all our breezy pre-marriage counseling answers about wanting a four-child family, this journey toward having children was shaping up considerably different from anything we expected.

Now, to be clear, our medical team doesn’t have any unique concerns for our ability to have healthy children. Trisomy is a random problem in gene replication, and miscarriage is common. But knowing facts and statistics doesn’t do much to dull the pain of losing two babies in a year, and being in our mid-thirties means our odds for future complications only goes up over time.

Lest you think I’m all doom and gloom about this pregnancy, please know that I’m not. Well, mostly. 🙂 I’m profoundly thankful and relieved for the good reports we’ve gotten about this baby’s progress, and I don’t live in daily fear that something bad is going to happen to him.

But it’s so easy to have moments; moments of fear, doubt, wondering if it’ll be OK. And in general, it makes my attitude toward this pregnancy rather muted and cautious. People ask how I feel about Baby #4’s arrival, and I can’t honestly say “excited.” Isn’t “excited” supposed to be every parent’s feeling about a new baby?!

But that’s not where I’m at. I would instead say I’m “guardedly hopeful.” “Guarded” in the sense that I feel the need to be careful with my hopes, and the pain of our losses last year is still viscerally near and familiar. The joy of the probable arrival of a healthy Baby #4 has not erased the difficulty of our past, and in some ways, it amplifies those memories as we’re reminded of what might have been.

And yet, we hope. Because how can we not? God is at work in the world, and we get to be part of what He is doing. I don’t pin my hopes on a healthy pregnancy and delivery – that would be foolish. But as we enter the 28th week of this pregnancy, we’re inching closer toward what increasingly looks like will be a healthy baby we can take home with us. It’s taken four years and four pregnancies to get to this point, but there’s a growing hope that we may actually have two kids at home just a few months from now.

And so, I write all of this to say, if you offer your congratulations and ask what I think about this baby — which you’re more than welcome to do, by the way 🙂 — please don’t be surprised if my response isn’t quite as eager and excited as some parents express. I might tell you I’m thankful, and also guarded at the same time. I hope it’ll all end well, and I’m grateful for the good reports we’ve gotten about this pregnancy.

In the end, it’s complicated, but I’m thankful. I may be a bit quiet in my anticipation of this baby’s arrival, but inside I have deep wells of love for him and for all our kids. My feelings are a somewhat conflicted combination of love, and hope, and not wanting to get hurt. More than anything, I’d just really like to bring this one home this time around ❤

Bob

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.

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.

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.

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

Memorial Service Announcement

It’s been four days since we came home without Samuel. That’s longer than the three days we were in the hospital, and significantly longer than the 1.5 days of his short, beautiful life.

It’s impossible to put into words how profoundly Samuel’s life has changed us. I think about little else: his soft hair, holding him in his final hours, how we can best honor and remember him in the days and years to come, and so much more. The smell, even the taste, of the hospital are still with me, almost as if our time together physically changed me in some way.

As Joanna and I continue cherishing Samuel’s special place in our life, we want to invite you to a service of remembering him this Saturday, February 4th at 10am. It will be held in the main auditorium of Elim Gospel Church in Lima, NY. The pastors and staff at the church are going all out to celebrate with us the blessing that Samuel was, and continues to be, and it would be incredibly meaningful for us if you’d join us this Saturday to honor his life. There will be a time after the service to visit together, and we hope to see as many of you there as can come.

Service details

Saturday, February 4th, 2017 at 10am

Elim Gospel Church
1679 Dalton Rd
Lima, NY 14485

For our friends in different parts of the country and the world, we’ll be live-streaming the service online for those who can’t make it. The service will be available at http://elimgospelchurch.churchonline.org at 10am EST.

How to Help

An almost continual question we hear is: “How can we help?” It’s tough to answer, because we already feel so blessed and taken care of. We have many meals already provided for us, and both of our families have been wonderfully supportive. If you’d like to help with future meals, a Wegmans gift card is a great idea. (You can mail gift cards to The Knileys c/o Campus Target, PO Box 536, Lima NY 14485.)

One tip we got at the hospital is: ask people to check in with us weeks and months from now. After the immediacy of all this fades, Joanna and I will still carry Samuel in our hearts for years to come. Please bring Samuel up in conversation, don’t be afraid of tears, and ask about him well after most people have moved on. Samuel will forever be our second child, and when people honor and recognize him we receive that as love.

Joanna and I are financially supported by donations in our work with Campus Target. If you’d like to make a donation toward our ministry you can do so through the Elim Fellowship website.

Most of all, Joanna and I simply value your care and concern for us. I have been at times overwhelmed by the love so many people have lavished on us, and there’s been a real sense of healing and hope in my heart as we’ve received so much care. More than gifts or flowers or anything else, we’re thankful for you, and we hope to see you this Saturday morning to honor Samuel’s life together.

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.

But 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.

We 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

Introducing Samuel

Joanna and I are humbled and blessed to introduce you to Samuel David Kniley. He was born at 2:22am this Tuesday morning, January 24th. Joanna was absolutely amazing through labor and delivery, and she kept her cool through two scares that almost led to emergency C-sections. In the end she was able to deliver without surgery and was incredible the whole time.

After Joanna and I got to meet Samuel briefly, he was moved to a side room where he was evaluated. I got to go with him and prop the door open so Joanna could watch. For about 10 minutes the doctors struggled to get Samuel to breathe, and they started to tell me it was time for us to hold him as he passed away.

But he didn’t! He started to breathe with assistance soon afterward, and his color improved dramatically. Minutes later Joanna and I got to hold him, as the neonatologists assisted his breathing, and almost all of the birth team stood around enjoying the moment with us. We were exhausted, but so blessed to actually get to hold our son – alive!

Samuel is now in the NICU, and he is stable. His prenatal diagnoses have largely been confirmed over the last 21 hours, and he’s breathing with assistance. One of his big concerns from prenatal appointments was an abdominal wall problem that would need surgery to correct, but it is basically non-existent now that we look it.

His greatest challenge has to do with his spinal cord. He has an open spinal cord defect, or spina bifida. Without surgical correction this will likely lead to an infection that would take his life within weeks, so we’ve scheduled the surgery for tomorrow. The operation itself is not significantly dangerous, but it’s very possible he’ll fail to regain breathing on his own after being on a ventilator during surgery. It’s not an insurmountable challenge, but it could mean Samuel is ventilator dependent for weeks, months, or the rest of his life.

Also, the spina bifida means he’s likely paralyzed from the waist down. This isn’t totally surprising, and it wasn’t likely he’d walk anyway, due to the underlying weakening effect of Trisomy 18. It is sad to know he may never walk, but we’re more focused on the spina bifida surgery coming up tomorrow.

Overall, we’re thankful for how the last 36 hours have gone. We’re exhausted – we’ve each slept about five hours total in the last two nights. But we’re very blessed by so much: Samuel is alive with us(!), Joanna didn’t need a C-section, Samuel is breathing mostly on his own, Daniel and our immediate family have all gotten to meet him, a free photography service has already taken family pictures for us, the medical staff has been over-the-top phenomenal, our plans have prepared us for every decision we’ve had to face, and so much more.

We’re going to rest for now and save our strength for tomorrow. The surgery and Samuel’s recovery are not trivial. The operation will take about two hours, and we won’t be able to be with him during it. Please pray that it will go well, that he’ll transition off the ventilator as soon as possible, and generally he’ll be healthy and strong.

Thank you so much for your love for us!

Bob, Joanna, Daniel, and Samuel

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:

A quick and uncomplicated natural delivery.
Samuel to be born alive!
Peace-filled wisdom for Joanna and me as we make decisions during labor and delivery, and regarding Samuel’s care.
Everyone involved to make powerful memories and appreciate every part of this experience.
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.

img_20161216_110012210-cropped — 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.

Halfway

We learned about Samuel’s diagnosis when Joanna was 20 weeks pregnant, and today is week 31. We’re just two months away from her due date, and it’s hard to understand how we’ve already gone through half of the time we’ll have to process Samuel’s condition before he arrives.

As I look back over the last 11 weeks, there are a few words that stand out to describe this experience:

Emotional. I can’t say I’m known for my wild emotional swings, but this season has certainly shown me they’re possible. Initially, there were ups and downs every week or so. There was a lot of variation as we learned about Trisomy 18 and Samuel’s other conditions. There was sadness and grief from the initial diagnosis, but that was followed by a surprising period of peace. Then more waves of pain and loss came as I realized just how difficult Samuel’s life could be, and as I wrestled with the unique challenge of anticipating a birth, and likely a death soon after that. I think about what I might say at Samuel’s funeral, what it could be like to say goodbye to him for the last time. To call this journey “emotional” feels like a bit of an understatement some days.

Full. There are many unexpected facets to this journey. One is just how alive I feel. It’s hard to describe, but in some ways this season of life is all I know right now, all I can remember. It feels all-consuming, not in the sense of “I’m being consumed,” but rather that the significance of this time demands greater responsibility and awareness from me. The days feel like they matter, almost like I’m aware that I’m going through a life-changing process as it happens. It sharpens my attention to this season, and I feel especially conscious of the importance of it all.

Deep. Joanna and I are getting to wrestle through incredibly meaningful questions of life and death. We’re sorting through our values, together, about what matters most to us. It might sound strange to say, but, in some ways, this time actually feels like a gift. We would never have had any need to communicate so deeply about such intimate issues if it weren’t for Samuel.

I contemplate the meaning of a life that may exist only in his mother’s womb, or perhaps outside of it for hours or days or weeks. I don’t get to look forward to teaching Samuel how to walk, or run, or hit a ball, or drive a car. Instead, I get to love and cherish and honor the life of my son, not because of anything he’ll accomplish, but because he’s simply my son.

There’s so much more I could write about. The friends and family who care so incredibly deeply for us, and who love, pray, and contend so regularly on our behalf. The deep and abiding compassion God is giving me for people who experience tremendous loss or life-altering disability. And so much more.

It’s remarkable, really, that all of these lessons and thoughts can come from a little two-pound unborn child who just happened to end up with an extra copy of his 18th chromosome. It’s almost enough for me to be thankful for this season. Almost.