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The hardest week of my life

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Wide White: The hardest week of my life

Saturday, March 12, 2011

The hardest week of my life

I haven't posted much about the events of this week. It's been the most difficult and emotional week of my life. Considering how much has happened, this isn't a short post, but for those who have been asking about what the last few days have looked like for us, here's a recap.

Monday: We scheduled a 3D ultrasound through Sustaining Grace, an organization whose mission is "To help provide non-medical 3D and 4D ultrasounds for the parents of babies that have received a fatal diagnosis." While the ultrasound is non-medical, we were unable to find a heartbeat and Kaylee Hope wasn't moving. Her lack of movement wasn't unusual from other ultrasounds, where she didn't move much, but the inability to find a heartbeat was concerning. Jamie thought she'd felt her moving on the way up and we thought we caught a glimmer of a heartbeat at one point. Jamie has wondered if we saw her heart beat for the last time. There's no way to know, but we think we lost Kaylee Hope on Monday. Regardless, we left with some great 3D ultrasound shots of our little girl.

Tuesday: We scheduled an ultrasound that morning to check to see if our little girl was still alive. The ultrasound confirmed that there was no heartbeat and she had passed. We cried with one another at the finality of her life and moved ahead with plans to deliver her.

Wednesday: We awoke at 6:00 to call St. Joseph's Hospital in St. Paul and see when they wanted us to come in. We arrived just after 8:00 and spent the entire day in the hospital. At 11:10 PM, Kaylee Hope was born. She was 1 pound, 9 ounces, and was 12 3/4 inches long.

Kaylee Hope was a sick little girl, so swollen from the fluid that had attacked her tiny body. We asked our nurse and midwife how bad the swelling was and they both said it was the worst they had ever seen. Most babies with her condition simply don't live as long as she did. She was a little fighter. Kaylee Hope was beautiful, but she had been battered and bruised and it was so, so sad for her parents to see.

When we first met her, Jamie wept. I simply entered into a place of emotion I've never been. I held my baby girl and just looked at her. I kissed her where I kiss Carson and Keira - on her forehead, cheeks, lips, nose, hands, stomach. After what seemed like forever but was probably just a few minutes, I gave her to Jamie. And then I sat there, aimless, not knowing what to do or where to go. I felt purposeless. Jamie said later that she'd never seen that look on my face before. She said, "You looked...," and her voice trailed off. She had difficulty describing that look. Words she found included "devastated," "stunned," "shocked," and "sad." All of those words fit.

That may seem odd given that I knew ahead of time that my little girl was gone. Yet there is finality that is brought about by birth that carries everything you already know to fruition. It is wonderful to meet your child when they come into this world. It is awful, gut-wrenching, painful, and even evil to have to meet your child after their soul has departed from their body.

Thursday: The first non-medical person to meet Kaylee Hope was Wendy Maybury. Her distinction as the first person to meet Kaylee Hope puts her in a special place in our hearts. We were introduced to Wendy at church through Molly Piper. Wendy is a photographer and comedian. We couldn't have asked for a better person in that moment. Simply put, she breathed life into that room. We found ourselves actually able to laugh. Wendy works with Now I Lay Me Down to Sleep, an organization that provides professional photographers at no charge who take photos of babies who are stillborn or born with little time to live. She said that in most cases, hardly any words are spoken as she's taking photos. In our case, we actually talked and were able to laugh. We needed that so much.

We finally fell asleep at almost 3:00 with both Jamie and I curled up together in Jamie's hospital bed. Kaylee Hope lay nearby in her bassinet.

The next morning our pastor showed up and we were able to talk for a long time. I think it was about an hour, but the concept of time wasn't very present that day. Through the events of the last few weeks with Kaylee Hope we learned that some friends (who also happen to have boy/girl twins a year or so older than ours) lost their own baby at 28 weeks just 4 years ago. I think I'll need a separate post to even attempt to communicate how much they've meant to us. They showed up at the hospital just before Pastor Steve left. Pastor Steve dedicated Kaylee Hope to God with only us and the Tuttles present. So many tears were shed in that moment. That moment was probably the most special moment of that day.

Two of our closest friends and their little girl came to visit in the afternoon. They're also expecting a baby just 5 days before we were due with Kaylee Hope. We were so excited about the prospect of having our next children come into the world around the same time (their oldest is just 4 months older than our twins). Instead, we grieve the loss of our daughter as we pray hard for the little Steward baby.

We had a break in the afternoon that allowed us to do some things with Kaylee Hope that we really wanted to do. We read books to her. A few were bought specifically for her while others were simply Carson and Keira's favorites. We took her blanket and her outfit and held them against her. Jamie gave her a gift to keep, a pin she had received as a little girl from her great-grandmother. We talked to her and sang to her. We cried for her and loved her.

Late in the afternoon Jamie's parents came with our kids. I've never held my children so tightly or smothered them in as many kisses. I imagine an unsuspecting passerby thought it was an odd scene. I was simply elated to see them. I don't think I even hugged my in-laws to say hello.

We took family pictures together with Kaylee Hope and then Jamie's parents took the kids back to the car while we said goodbye to Kaylee Hope. We were actually surprised by how much easier that goodbye was than we thought it would be. We thought we would be sobbing and would have difficulty tearing ourselves away from her. To be sure, we did cry, but they were more like tears rolling down our cheeks than anything. We realized that the lifeless body we were leaving behind was not our little girl. It had been occupied by our little girl, but that was not Kaylee Hope. Kaylee Hope is in heaven. Kaylee Hope is missing from our family, but she's missing from that body as well.

On the way home we stopped at Jamba Juice, just as we did with the twins after they were born. The Tuttles had given us a lavender-scented stuffed animal as a gift to remember Kaylee Hope earlier in the day. We took that stuffed animal into Jamba Juice with us.

As we left Jamba Juice, we were overcome with an overwhelming sense that a piece of our family was missing. As Jamie put it the night before as we were falling asleep, "Now we have matching holes in our hearts."

We took the kids home and Jamie's sister Jessica watched them while we left to show up at our church small group (an hour late). They gathered around us and prayed for us and I think Kleenex's stock went up a penny or two during that time. Everyone stuck around for a while as we told Kaylee Hope's story and answered questions about her. The more we stayed and talked, the more the conversation turned to other things and we eventually decided to get pizza and a movie. We watched The Little Rascals and didn't get home until 12:30.

Friday: We had to go to the funeral home to sign off on a paper Friday afternoon. A friend who we just met at Hope CC came to watch the kids so we could get out of the house. At the funeral home we asked to see Kaylee Hope. We were so glad we did! Her face looked better than it had before and we were able to get photos of each of us giving her one last kiss. Again, we had tears as we said goodbye to her, but we were keenly aware that we weren't leaving her behind. We returned home and some good friends brought us dinner and gifts. They helped us feel normal for a few hours.

Each day is just another step to take in many ways. Each step will get easier, but we're in the early stage and the steps are still hard. Thankfully, your love and support is making each step just a little bit easier.



Blogger Priscilla declared,

Thank you so much for posting all the events of this past week. I have loved sharing in the family life in this way. I love you both so much and can't wait to wrap you all up in my arms. You have both been such an encouragement to me in your words and actions. Thank you!

3/12/2011 7:46 AM  
Blogger Pat Stream declared,

Thanks for posting this Joey. I read it and imagine your sorrow and yet there is so much strength. This may be strange but I am proud of you, for the way you are leading and loving your family through this. I know your strength comes from the Lord. Remain there brother. Continuing to pray for you!

3/12/2011 8:28 AM  
Blogger Bryan and Rachel declared,

Thank you for posting this. I am heartbroken and encouraged at the same time. Praise be to God for his sustaining grace to you and Jamie.

3/12/2011 12:23 PM  
Blogger Meg. declared,

Oh Joey and Jamie,
Thank you for posting this so we know how to continuing praying more specifically for your family. We are so glad to hear you spent so much time with Kaylee. And that you took pictures with your other kids. (we didn't do that and I wish we had) You'll always treasure that, even though I'm sure it was hard.
Jesus come quickly.

3/12/2011 5:04 PM  
Blogger Carla declared,

Beautiful, heart breaking post, Daddy. Your love for Kaylee Hope is precious.

The Lord is close to the broken hearted and saves those who are crushed in spirit. Psalm 34:18

3/13/2011 3:04 PM  
Anonymous Brent and Lisa declared,

Hi Joey. I just read this update to Lisa and we both cried. We know that there is still much healing ahead. We thank the Lord that He has sustained you and given you courage to share all these stories with us. Bless you. Brent & Lisa

3/14/2011 8:11 PM  
Blogger Ashley declared,

Thank you for posting this. Even as a bystander, the pain and grief of losing Kaylee is overwhelming. But your faith and trust in the Lord during this time is beautiful and humbling and so glorifying to Him. We are praying for you and your family.

3/15/2011 3:40 PM  

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