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.

img_4416As 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.

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

Introducing Samuel

img_4192-2Joanna 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.

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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!

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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.

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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:

  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.