Since our last blog post, we had a meeting with Carolina Donor Services about what Layla qualified to donate. We found out she qualified to donate her heart, kidneys, pancreas and lungs. All of these organs would have gone to groundbreaking research to understand how medicines are metabolized, help researchers predict cardiac disease, help researchers understand abnormal development of lungs that leads to premature delivery and understand how the pancreas develops and produces insulin and use this to prevent or cure Type 1 Diabetes, amongst other things. There were many meetings about Layla’s delivery with Labor and Delivery nurses, doctors, NICU doctors, organ donation teams, etc. so that everything would go smoothly and everyone would know their job in the process. If Layla could have donated, she would have been one of the first infants to do so at Duke Hospital. Honestly, knowing this and having this hope was what helped me throughout many dark times in this pregnancy. We were always aware they could say she doesn’t qualify, even up to the very last second. I still had high hopes she would donate, it felt like her legacy depended on it.
One week ago on Monday, everything was normal. She was kicking more than she did that weekend and I felt assured she was ok. When Tuesday came, I went the whole day without feeling one kick. Because I am a sonographer and have access to a machine, I was able to scan myself every hour to check her heartrate. I had a panic attack that morning when I first put the probe down, knowing I hadn’t felt her since Monday afternoon. I was immediately transported to that Monday five years ago when I scanned myself and found Cora passed. To my relief, she had a strong heartbeat all day. However, something about the blood in her umbilical cord caught my eye and I realized it wasn’t normal. I had a very strong instinct things might be taking a turn for the worse. I was taking a week off of work the next day, and would not have a way to check the heartbeat and started feeling anxious. I felt we had to move up the induction date a week, because I was worried she wouldn’t make it to the 28th. I decided at an appointment with my midwife to come into work that next morning to check her heartrate and move the induction. I went into an open ultrasound room and scanned myself and knew immediately she was gone. It was Cora all over again.
We made arrangements to have an induction that Wednesday night at 8 pm and I let everyone know what was going on. I was so upset and angry that it happened this way, one week before we were scheduled to go in. This meant the dream of holding her alive and donating were impossible and that was difficult to accept. We finished making arrangements at the cemetery that afternoon, left the kids with my sister, and headed into the hospital.
We started the induction process at about 10 pm that night with the first of three doses of misoprosti, one every 4 hours. The following morning, the doctor who delivered Cora came in to tell me she would be there all day (on her day off) until 3 pm and was hoping to deliver Layla. She was the reason we picked the 28th. I had all the plans perfectly laid out, until they weren’t. She didn’t arrive at 3. I was still only about 5 cm dilated at that point and the doctor I wanted to do the delivery left the hospital. They started me on pitocin and I received my epidural. Contractions were just getting to the desired frequency. I desperately wanted Layla to come before the kids went to bed and before our photographer would be unavailable. I had just finished texting my sister to go ahead and feed the kids and the photographer to go ahead and go to her meeting at about 5 pm, because she likely wouldn’t come until later that night when…my water broke. Josh’s parents, who were waiting with us and keeping us company most of the day, were ushered out of the room. Josh had to text everyone to let them know and they all headed to the hopsital. I pushed for about 30 minutes and she was here.
We opted to have the nurse clean her, put on her hat and onesie and swaddle her before we saw her. We did the same with Cora. I had scanned them and seen their defects via ultrasound so many times that I just didn’t want my memories of them to be tainted. It was probably only 15 minutes, but it felt like eternity. I wanted to see her and take her in by myself before the kids came in with questions. I was also really nervous how I would react to her. The kids, our family, and Sara (the photographer) came in about the same time. Aben immediately started asking questions about her. Both kids wanted to hold her and touch her hands and cheek. Because of her low muscle tone, her eyes were open and unable to close. We were worried how this would affect the kids. To see her body but her to not really be there. We have talked to them for months about how she would not be coming home with us because she would go straight to Jesus. It’s so hard to explain to kids their age why her body was still here. Their innocent questions about her both break me and comfort me.
Sara did a phenomenal job capturing the moment. I truly could not have asked for anything more. I was very worried the timing wouldn’t work out and we would have to wait to take pictures, but we were able to get them 30 minutes after I delivered her. I am forever grateful that Sara was available at the last minute and get these pictures that we will treasure all our lives. I won’t be sharing up close pictures of her, I’m not ready to be that vulnerable, but here are some of my favorites:
We stayed in the hospital until Friday afternoon and she stayed with us. We really wanted to have a Cuddle Cot in the room with us, but Duke’s clinical engineering wouldn’t pass the machine through their protocols. The L&D department was able to rig up a makeshift one from equipment from the NICU. The purpose is to keep the bassinet cold (45 degrees) to slow the process of deterioration for families to have more time to grieve. Until this year, I didn’t know they existed. I would have loved to have one with Cora, because we felt our time with her was rushed. The staff will now be offering this makeshift one to families who have stillbirths or neonatal deaths. Because I was an employee, I was able to contact the right people to make this part of the optional protocol for future families. This will help grieving families by giving them more time with their babies. A few families I know were able to spend up to 4-5 days with their babies after they passed because of the Cuddle Cot. We plan to donate 2 or 3 Cuddle Cots (one in each of our girls names) to Vidant Hospital in Greenville, NC and we will be fundraising to make this happen. Vidant, where I worked, my mom and dad worked, where Josh and my siblings were born. The units cost approximately $3000 each, so we will be looking to raise at least $6000 and will try for 3 units, since Vidant has said they’d find use for 3. This is a great way to honor Layla’s (and Cora’s) legacy. You can, if you feel inclined, donate to our PayPal (firstname.lastname@example.org) and Venmo (RebeccaShrader) accounts for now until we get a fund set up. For example, this is the makeshift one Duke set up for me, and a Cuddle Cot is similar but smaller:
“How are you?” That’s the question I have no idea how to answer. I’m a lot of things. I’m angry I didn’t get to have her for a lifetime or even hold her alive. I’m sad her siblings will never get to know their two sisters. I’m relieved that she didn’t die in my arms. I’m exhausted from fighting for so long for her. I’m empowered by her strength and I feel powerful to tell her legacy. A few people were worried because I didn’t cry at the hospital. Josh showed “appropriate” emotions, but I didn’t cry in the moment. I did the same thing with Cora. I had almost 9 months to prepare myself emotionally for this, to grieve for them, and there were PLENTY of tears and tantrums in those months. I cried angry tears last Wednesday when she died. I cried when decedent care came to get her body. I’ve been nonstop crying this weekend. Every time I look back at the pictures, I cry and I’ve cried throughout writing this blog. Grief is a weird thing. We have been through two losses of children five years apart and I’m still grieving Cora. I know we will be grieving both girls for the rest of our lives. We could be doing well and then Lydia says: “I found Layla’s bracelet…can we go back to the hospital and give it to her?”
We yearn for Layla like we do for Cora. I feel like pieces of our family are missing and it’s not just another baby, it’s THEM specifically. Aben and Lydia have seen me cry here at home and saw Josh cry at the hospital, and they’ve asked us why. Josh just answers, “because I’m sad”. No one goes through this well. No parent buries their child “well” and we shouldn’t expect ourselves to do so. We are going to be weak…and angry…and sob uncontrollably. God doesn’t need us to be strong in this moment, because that’s not our nature. This is the time we point to Him and show everyone that He is the Shepard and we are the sheep. God is the forefront of this story, not just hanging out in the wings when we need Him. We need to be led through this as we help lead our children through it. It was much different losing Cora because we didn’t have constant questions from the kids about her. We could grieve quietly or think about her quietly whenever we wanted. Now Lydia and Aben have questions that need answering and they come with no notice. Aben constantly asks if I am still pregnant or if I will be pregnant again. There are just some questions they ask that will go unanswered. However, we will talk about her and it will get easier to do so. I want her memory to always be with them. My biggest fear is that she will be forgotten. I beg you to please help the world remember her with us.
We appreciate all the love, support, prayers, and hugs that we’ve received so far and we’ll likely need much more of all of that as we grieve our loss and move sadly forward. If we could ask for one last thing from you, it’s that you’d talk to Jesus. As heartbroken and distraught as we are at the loss of both our daughters, we would be much more so without the knowledge that Jesus is holding them both. Embracing them in all the love and safety we couldn’t hope to provide in this life. What loss we are feeling pales in comparison to the loss He must feel when we reject Him, when we chose separation from Him. He’s our ultimate father and He longs to embrace us. We want that for you as well. To find peace and rest in Jesus during the most uncertain and painful times. It doesn’t remove the pain we feel during this time, but the deep rooted belief that God is working to make all things new sustains us. We love you all.
Bec, Josh, Aben, Lydia, Cora, & Layla
We adore you and miss you so much this side of Heaven.
“How very quietly you tiptoed into our world, silently, only a moment you stayed. But what an imprint your footprints have left upon our hearts.”