Today I am sharing the words of a new friend, Shannon. I met her through MOPS shortly after we moved here last year. We were having a Mom’s Night out, eating at Panera, and doing some shopping when she told me she was pregnant. I knew she already had two little girls and I was very excited to hear there was a third one coming (although at the time it was a secret that it was a going to be a boy).
I will let Shannon tell you the rest of the story in her own words but I will warn you that Baby Kade only lived for a short time on earth. His story, however, is very powerful and very important. Shannon bravely shared her story with us at MOPS and it touched us all, and especially me, very deeply. I asked her to share her story here because of the power of her words and the message behind them….where does your hope lie?
The following is the story of my baby boy, Kade Robert William’s, birth and death. As you read this, maybe you know someone who has experienced the death of an infant or child, or perhaps you’ve gone through this painful experience yourself. Although my story is unique to me, I know that it unfortunately happens to too many families. If you do know someone who has suffered this dreadful loss, please take time today to just reach out to them, even if it’s just a quick text, to let them know their loved one is not forgotten.
I was surprised when I found out last November that I was pregnant. After 15 years of marriage, I thought that my baby-bearing days were over. I’d even just started selling some of our baby items to clear up some much-needed storage space. It took me a couple of days to process the idea, but then I quickly became excited about this third child we would be adding to our family.
Although I was considered high-risk due to my age and history of infertility and pregnancy problems, everything seemed to be going well with this pregnancy. Every ultrasound showed a normal, seemingly healthy baby boy. An ultrasound when I was 29 weeks showed that there was a little extra amniotic fluid than normal, but no one seemed worried about it. We know now that it was because he wasn’t able to swallow properly. Another ultrasound three weeks later showed even more fluid, so my doctor sent me down to Indy for a 4D ultrasound with a specialist. Although the fluid was still high, he too agreed that my baby looked perfect. Everything was growing as it should, including his brain.
I returned to my doctor the next week on Tuesday, June 3, 2014, where he hooked me up to a fetal monitor. The test strip showed a strong heartbeat, but no accelerations and decelerations, indicating possible fetal distress and neurological problems. He immediately sent me to the local hospital for another ultrasound and more monitoring. After more tests showed the same results, he decided that he wanted to deliver my baby boy that day. However, since my doctor suspected he would need to be in the NICU and may need very specialized care, we decided to have us flown down to Indy for delivery so that we’d have access to a Level 4 NICU, if needed, and it certainly did end up being needed.
Since the children’s hospital was full, I was flown by helicopter (sounds a lot more fun than it was!) to another excellent hospital in Indianapolis. The doctors there repeated the same tests as my doctor, but didn’t feel the urgency that he did. Over the next two weeks I was pretty much confined to the hospital bed hooked to monitors. I would talk and sing to my precious boy, grateful to have a couple of weeks with just him before I was going to be taking care of three children at home. Two of my favorite songs to listen to while bed-ridden were Oceans by Hillsong United and 10,000 Reasons by Matt Redman. I remember crying as I listened to the lyrics of Oceans.
Spirit lead me where my trust is without borders
Let me walk upon the waters
Wherever You would call me
Take me deeper than my feet could ever wander
And my faith will be made stronger
In the presence of my Savior
I truly meant these words as I sang them. Little did I know just how deep into the ocean of trust I would be called over the next few weeks. Every step of the way, though, I was never alone.
The Lord blessed me with the most amazing doctors and nurses who genuinely cared for my baby and me. I saw on their faces the struggles as they made decisions, wanting the best for us both. They would do daily ultrasounds looking for practice breaths, but never saw any, another sign something was wrong. We were all worried and knew he’d probably have some health issues, but no one expected what we would discover after he was born. He was very active, almost constantly moving, so much so that one of the nurses and I jokingly and ironically named him “Baby Chyll”. But then on the morning of Tuesday, June 17th, he was very still. I was 35 weeks at that point, and the doctors decided it was time to meet him.
They wheeled me into the operating room. It happened so quickly, that my husband, Brian, didn’t make it in time to see our son’s birth. He was still back at our house with our 2 little girls, almost an hour and a half away. One of the doctors that I’d grown close to over the last couple of weeks asked me if I’d like to hear some music. After I replied “contemporary Christian”, she found a station on her smartphone. The first song to start playing? 10,000 Reasons by Matt Redman.
The sun comes up, it’s a new day dawning
It’s time to sing Your song again
Whatever may pass, and whatever lies before me
Let me be singing when the evening comes
The first melodious notes were like a salve to my fragile nerves. It was as if God Himself was there in the room with me reminding me that I am never alone. At 10:46 a.m., my son was delivered into this world. I remember not hearing him cry at all, but everyone seemed so upbeat that I didn’t think much about it. Despite all the test results, because he’d been so active, I wasn’t concerned. They cleaned and wrapped him up and showed him to me for about two full seconds before whisking him away to the NICU. He looked perfect and even made a soft little whimper.
What I didn’t know at the time was that he’d started having seizures about two minutes after birth, so they game him medication. Brian finally arrived a little while after the nurse had wheeled me to the recovery room. I remember asking the nurse how my boy was doing, if there were any red flags. Although she gave me a quick shake of her head to assure me he was fine, this usually friendly woman who’d spent the last few days taking care of me, couldn’t quite look me in the eyes. A few minutes later, an EMT came in the room to explain to us that our son had been having seizures and to let us know they were moving him to the children’s hospital NICU just a couple miles down the road. At this point, I still wasn’t overly worried. I’d dealt with seizures with my oldest daughter, Aubrey, already, so I thought that maybe I’d just have another child with epilepsy. They brought him into the small room in an incubator. I could barely reach him, but was able to hold his tiny hand for five minutes before they transported him down the road. It was there in the recovery room that we decided to name our son Kade Robert William Dewar (after our grandfathers).
Still unaware of the direness of his health, I chose that evening to rest in my hospital bed while Brian went to see Kade. I knew they’d be running tests on him, so I wouldn’t be able to hold him. I thought I’d have plenty of time to do that later after the meds from my surgery wore off.
The next morning, Brian and I went to the children’s hospital to see our son. It was shocking to see him hooked up to so many machines. He seemed to be sleeping soundly. Kade was big for being 5 weeks early, I thought, 5lb 5oz and 19 inches long. Shortly after we were there, about a half dozen doctors and nurses stepped into our room and closed the door. We knew it wasn’t going to be good, but I never would’ve guessed what they were about to tell us. They proceeded to say that the MRI showed Kade’s brain had stopped growing around 33 weeks. At first I thought that they just meant he’d be behind a little developmentally or mentally for a while until his brain could catch up. Then they explained that it had stopped growing and started dying. The cells were not growing anymore and he was losing more each day. I finally mustered up the courage to ask what his chances of survival were. I’ll never forget the pain and sympathy on the doctor’s face as she replied, “Not very good. I’m so sorry.”
It seemed so surreal, and it took me days to actually accept what they were saying.
My only son was not going to live.
Still the doctors agreed with us to give Kade every chance we could. I knew he was in the hands of a God who could save him if He so chose. The doctors experimented with weaning him from the seizure medicine then adding a different one. I will eternally be so grateful to each nurse and doctor that cared for Kade so lovingly.
Over the weekend it finally hit me that my son was most likely not going to make it, though I still wasn’t ready to give up. We made the most of the short time we had left with our son. I gave him his first and only bath. I dressed him in a soft pair of blue newborn jammies, jammies that I keep near my bed and that still smell like him. We brought Aubrey and Avery in to meet their brother for the first and only time this side of Heaven. We got lots of hand and footprints and even molds. On Monday evening, one of the pastors from our church came down to have a baby dedication for Kade, while his wife took the most beautiful pictures.
On Monday afternoon, we met one last time with his doctors. Another MRI showed that his brain had started bleeding, he was having both the visible and non-visible seizures and he was getting sicker by the day. I could see it. Over the weekend, he had some muscle reflexes when the nurses would pick him up. By Monday morning, he was so limp, his arms just dangling when he was picked up.
On Tuesday morning, June 24th, I woke up knowing it was the day we’d be saying goodbye to our son. We spent every second with him that day, and I spent the afternoon just snuggling him close to me, skin-to-skin. When the nurses needed him back in his bed briefly, they carefully lifted him from my arms. As they did, I noticed two perfect little imprints of his feet on my bare belly. It was as if they’d been engraved into my skin. I had Brian take a picture so I’d never forget.
The whole day I’d been praying, begging God not to make me make this choice, to have to decide when to remove his breathing tubes. How is a mother ever supposed to choose when to give up on her child? It was so unfair! I prayed that God would let me know when His timing was right. I knew God had ordained the days and even seconds of Kade’s life before time even began. Realizing that gave me the strength I needed.
We had chosen to have a Now I Lay Me Down to Sleep photographer come to capture the last hours of Kade’s brief life on earth. It has been such a blessing to have those photos of our cherished son. After Jason finished the photos and quietly left, Brian was snuggling with Kade in a big blue chair. I was sitting next to them in a separate chair. I knew that I’d never really be ready to remove his tubes, but I leaned over anyway and whispered to Brian, asking if he was ready. His response was truly heaven-sent.
“I’m not ready, but he is. Kade is ready.”
His words gave me the peace and knowing I’d been begging God for. At 6:30 p.m. on June 24th, we removed Kade’s breathing tubes. Although they warned us what it would be like, I wasn’t prepared. As he struggled to breathe, I started to scream, “I’m so sorry, Kade! I’m so sorry I couldn’t save you!”
I felt so helpless! I wanted to run and get the nurses and beg them to put the tubes back in, tell them I’d made a huge mistake!
Brian’s gentle words reminding me that Kade needed me helped me calm down so I could sing to my son and whisper words of comfort. At one point, Brian asked me to hold Kade because he needed to get up and walk around the room. As he handed him to me, I immediately felt at peace. For a good part of an hour and a half, as Kade fought to hold on, I rocked and snuggled him. The doctors had turned off all the monitors in his room before removing the tubes so we didn’t have to see or hear his heartbeat slowing. I didn’t need the monitors or the doctors to come back in the room to know when he’d drawn his final breath. I just knew. I looked at the clock and it was exactly 8:00 p.m, the time God had chosen. I kissed my son goodbye and later watched as they placed him in a beautiful little paper casket, placed the lid on top and tied it with a dark green satin ribbon. He was gone… but not really.
The Hands that are holding him right now are holding me, too. Kade and I will always have that connection. And one day, I WILL hold him again and never have to say goodbye! The time I have ahead of me to spend with him in eternity in the presence of our awesome and faithful Creator is far greater than this short amount of time I have to live without him now.
I still struggle with the grief and sorrow every day, but even among that grief, there is Joy! I’m learning surrender, full and absolute surrender. I’m learning that my hope can only be in Christ. Everything else is temporary. If I place my hope in having another healthy baby, as wonderful as that would be, and maybe God will allow me to have that, it cannot be where my hope lies. If it is, I’ll be disappointed. I’d love another baby just as much as Kade, but he could never be replaced. He is unique and as much my child as my others. If my hope is in Christ alone, that can never be taken away, no matter what trials may come.
I challenge you to ask yourself today, honestly, where is your hope? Is it in the temporary: a new baby, a new job, the perfect house, the perfect weight, the perfect husband?
In his book, Turn My Mourning Into Dancing: Finding Hope in Hard Times, Henri Nouwen says,
“Hope born of faith becomes matured and purified through difficulty.”
If your hope is honestly in the Eternal, in Christ alone, you will be able to survive when your own difficulties and trials strike. It won’t be easy, and the tears and sorrow will come, but so will the Joy!
Thank you for allowing me to share Kade’s brief but precious life with you.
A link to the video tribute they made for Kade’s memorial service.
In honor of all the precious lives lost and remembered worldwide on October 15.