Grieving our sweet Karalyn

I have wanted to blog, but I have just not had the emotional strength to do so. The last ten days have been the hardest of our lives. But, our journey has been an open book from the start of this blog, and I wanted to share the rest of the story regardless of how hard it is to sit down and actually type it out.

We got back home from the fetal intervention on a Wednesday night. I stayed up pretty late that night and posted a blog entry. We came home with such renewed hope and excitement for our little Karalyn. We felt we had done everything we could on our end, and we were so ready to just relax and enjoy the next 7 or 8 weeks with our kiddos and each other until our precious little girl was scheduled to arrive. When I went to bed that night, my legs were quite swollen, and I could literally feel the swollenness up my legs. I have never felt that swollen before, but it was better in the morning.

I went ahead and called my nurse at my OB’s office at Children’s Mercy on Thursday just to check in and ask about the swollenness. We decided it was probably due to the traveling the day before, but I was told to watch it. My concerned and loving hubby banned me to the couch Thursday night and told me to relax, prop up my feet and stay put!

My nurse called me the next morning (Friday) to check in on me again and see how the swelling was doing. I had a little more swelling at one point in the day I told her. I also told her how my belly felt really hard the night before. There was no pain with it, and the hardness went away. She told me she could get me into the office that day if I wanted to have them take a look. I told her no, it had only happened once, and I wasn’t even sure if it was a contraction. She told me that if I felt any change in my belly or felt any pain whatsoever, that she wanted me to come in right away. With just having a fetal intervention and the severity of Karalyn’s heart defects, she didn’t want me to take any chances of going into pre-term labor. I don’t remember feeling anything on Friday. Then, Saturday came.

At about 3:00 p.m. Saturday, July 20, my hubby and I started noticing that my belly was feeling very hard, but then it would relax. I felt no pain with this whatsoever. I have never experienced contractions early in any of my other pregnancies-the only time I felt contractions is when I woke up in active labor with my other two daughters. We were a bit worried, so I was banned to the couch… again.

Mark’s brother and sister-in-law were coming for dinner and to hang out that night. When they came, we told them what was going on and how we were debating on whether or not to go into Children’s Mercy to be monitored. We figured maybe I was having some Braxton Hicks or something, and they’d probably just tell me to go home, drink water and relax.

We decided to go in. We didn’t want to take any chances. My hubby’s brother and sister-in-law stayed at our house with our two kiddos and their two kiddos. We drove the 30 minutes to Children’s Mercy. I continued feeling contractions this whole time, but they were never painful. We had called CMH in advance to let them know we were coming in, and we had our “patient passport” to get into the hospital since normally this is a hospital for only children, not pregnant mommas. We got to the hospital, showed our little “patient passport” card to security, received our security stickers to wear and headed up to Fetal Health on the third floor. It was about 6:45 p.m. Saturday, July 20.

I put on the hospital gown and got into the hospital bed. They hooked me up to monitor my contractions. I was definitely having contractions. They were about two minutes apart. They checked to see if I was dilated at all. I was a 1 and about 50-60% effaced. I felt hopeful since I was only at a 1 so far. Once I was in the hospital, I started to actually feel a bit of pain from the contractions. CMH is connected to an adult’s hospital called Truman Medical Center. They decided to transfer me there (they have a connecting hallway between the hospitals) to be monitored and start medications. There were several reasons for the transfer. 1. Children’s normally doesn’t deliver babies-only ones where they would need immediate intervention for their heart (we knew if I ended up delivering this day, then CMH would not be able to do any immediate intervention for her heart due to her being so early and too small). They have only delivered about 200 babies in the last two years. I would have had a scheduled c-section at CMH had we made it full term because Karalyn would have still most likely needed immediate intervention. 2. Children’s Mercy does not do VBAC’s (vaginal birth after cesarean). I had a c-section (not scheduled) with my first daughter and then a VBAC with my second daughter. We knew that if I actually ended up having to deliver her now, that I would go ahead and do a VBAC instead of a c-section. There was no benefit at this point to do a c-section delivery. And, unfortunately, we knew her odds of doing well if she were born this early were not good-we didn’t want me to go through a c-section if not beneficial to our baby. If we ended up delivering at Truman, they would stabilize the baby and then transfer her right back over to CMH. CMH explained everything that would probably happen once we got over to Truman. They were hoping to get my contractions stopped.

They wheeled me over to Truman. Once there, it took them awhile to get my saline IV going and get me hooked up to the contractions monitor. Then they also gave me a steroid shot for the baby’s lungs (thanks Katie for the advice of icing to numb my bum first-it really helped it not hurt nearly as much as it was supposed to!). Finally, we were settled in for the night. They said they would be keeping me until at least Monday afternoon. Mark’s parents headed to our house from Topeka to relieve my hubby’s brother and sister-in-law so they could get their kiddos home. A couple of my girlfriends came in and visited us that first night as well and brought me food since I had missed dinner. They kept us company, shared scripture with us and prayed with us.

That night was not very restful. My contractions became more painful, and they still seemed to be coming every 2-5 minutes. Finally at around 3 a.m., our nurse and my hubby decided that I should really probably be checked again to see if I had dilated more. We were trying not to check me too often because we didn’t want to encourage any more contractions. They could tell my demeanor had changed, and I was having to breathe through contractions and feeling much pain. I always hate having to rate my pain. One reason is because I have been told I have a high pain tolerance. The other reason is because I hate to over rate my pain incase it does get more painful, or I don’t want to under rate my pain and then have my nurse not think my contractions are serious.

When the OB came in to check me, I was at a 5 and 75% effaced. When we heard these numbers come out of the OB’s mouth, my hubby and I just started crying. We knew. We knew that at this rate (I usually go pretty quickly once in labor), we were going to have this baby. They were not going to be able to stop my contractions. I was too far gone at this point.

Once they saw how far along I had progressed, they started me on magnesium (this was to protect Karalyn’s brain, and it also has a side effect of relaxing your uterus). They pumped me with a ton of it when they first started the IV, and then it tapered off about 30 minutes later. Magnesium though makes you really hot. They brought a fan into my room to have blow directly on me. I was so hot! Then, the medication burns in your arm for that first 30 minutes. And, you just feel downright weird/disoriented. They had to put a catheter in because I wasn’t allowed out of bed once I had the magnesium because you are kind of loopy on it and your body is not super stable. I also had blurred/double vision while I was on it. My vision stayed messed up until they started weaning me off of it right before delivery.

Then they also gave me three shots in my hips of some type of medication that was supposed to help relax my uterus in hopes of slowing/stopping contractions. This did slow them down to about 7 minutes apart for the next few hours, and I was able to get a little bit of sleep on and off over the next few hours. But, it didn’t stop them by any means. I am not sure why they waited so long to give me this medication. I remember getting some other medications, too, but I can’t quite remember what they were or when I received them. It really is such a blur.

So, we waited. Once the morning came (Sunday, July 21), my contractions started picking back up. I didn’t really eat much that day because I didn’t want to be on a full stomach knowing I could be possibly delivering that day.

My mom and sister had already pre-planned a trip to fly out to our house this same weekend. They were to fly in on Sunday and fly home on Wednesday. So, when they landed in Kansas City Sunday morning, they just came straight to the hospital (after getting completely lost, of course). They stayed with us most of the day I believe and were there helping me through contractions. God’s timing is amazing, and I know He had His hand in the fact that this just so happened to be the weekend my mom and sis came to visit. He knew I needed them there during this time.

About 3 p.m. the OB checked me again. I was now at an 8 and 80-90% effaced. They told me I was definitely having this baby today. They brought the baby warmer in and some other things from the NICU. I think it was then that they started introducing different members of their medical team to me that would be in there during delivery.

I am not sure exactly when, but they eventually checked me again, and I was at a 9+ and basically 100% effaced. I was already feeling a small urge to push but was waiting to get completely dilated and for my water to break. I was in so much pain with my contractions and feeling the need to push (I did not have an epidural), that I just asked them if they could go ahead and break my water. I knew as soon as they did, I would probably need to push, and this baby was coming regardless. They agreed. I had my mom and sis leave the room, as Mark and I wanted to deliver her with just us two there and the doctors because we knew her future was so uncertain (my mom and sis were in the room during delivery of my first two daughters). So, they broke my water, and I of course had to push immediately. But, of course, it seemed like it took them a century to get ready for me to actually start pushing. They had to take the lower half of my bed off, get the stirrups in place, get my legs up in them, etc., all while I am in excruciating pain trying to hold little Karalyn in and not push.

Finally, I was able to start pushing. I assumed this would be a pretty easy job given she was going to be small due to only being 31 weeks and 2 days along. But, no, of course it wasn’t. I ended up having to have an episiotomy because her head would just not come out. Once I had the episiotomy, she literally shot across the delivery room. The OB literally caught her in mid-air. My uterus decided to not start contracting after delivery, so I ended up losing a lot of blood. It took over an hour for them to get me stable with stitching the episiotomy and stopping my body from losing blood and getting my uterus to start contracting. It was actually pretty traumatic for me and my worst delivery experience to date.

Our little Karalyn Elise was born Sunday, July 21, 2013, at 6:35 p.m. She weighed 4 lbs 6.6 oz. She was 16.5 inches long and had a head circumference of 12 inches. Her oxygen levels were only at 19%... not good at all. Karalyn means strong; joy; song of happiness. Elise means pledged to God. She was a good-sized baby for how early she was. She never cried. She never opened her eyes, she never really even moved except a few times where she gasped trying to get her lungs to open up. She never took a breath. They performed CPR on her, they tried to get her on the ventilator several times, and they sprayed surfactant into her lungs hoping that would get them to open up. Nothing worked. Her lungs would just not respond. Eventually, they told us we needed to just hold her. There was nothing more they could do for our sweet Karalyn. As I understand, there was too much fluid in her lungs, and they had just not developed well enough due to the heart defects. Mark held her most of the time because I was still being worked on (they were working on me the entire time she was alive). I held her briefly while she was still alive and while I was being worked on. I did get to feel her heart beat against my chest. I shared some skin-to-skin time with her. I saw her gasp for air once. I was in so much pain due to the OB trying to get my uterus to start contracting and then stitching me back together, that I did not get to hold Karalyn for very long. I remember hearing the doctor go over to Mark to check her heart beat again (they did this periodically). At 7:41 p.m., they no longer heard her heart beating. She passed away in her daddy’s arms while her momma was still being worked on in the delivery room. We were devastated and in complete and utter shock.

They eventually got me back together, and the room full of doctors cleared out. They did her footprints for us and gave us a keepsake box that had a shirt, hat and booties in it. They wrote her stats out on the little hospital card, and they put a special sticker on our door to let everyone know that we had just lost our child. We spent the rest of the night holding our sweet Karalyn, memorizing her little face, hands and feet. Crying together. In shock of what had just transpired. Was this a bad dream? Were we going to wake up from it soon? Oh how I wish I could just wake up from this.

Once we were ready, we had my mom, sis and my hubby’s parents and our two young daughters come in to see us and Karalyn. Mackenzie (nearly 4 years old) was so sweet. She said Karalyn was just perfect. We told her that Karalyn had to go to heaven with Jesus. We had talked about this a lot with her prior to going into labor because she understood and was so excited for her new baby sister, and we wanted to prepare her that Jesus may take her to heaven when she’s born if the doctors couldn’t fix her heart. Raegan (nearly 2 years old) cuddled her as well. Stroking her head and of course trying to poke her in the eye. We also had a photographer come in who I had been talking with prior to going into labor. She is a professional photographer and volunteers her services for an organization called Now I Lay Me Down To Sleep. She came in and took pictures of us with Karalyn. It was so special, and I am so thankful that we have beautiful pictures of our daughter to treasure forever.

We had several other visitors that night that came to show their love and support and also to pray over us. We were not alone. Finally the room cleared out for the night. We were staring at reality straight in the face, and it hurt so badly. The nurse said we could keep Karalyn as long as we wanted, so we did. She slept in our room, actually, she slept cuddled in her momma’s arms in the hospital bed all night long. I feel so blessed to have been able to sleep with her in my arms. I am so glad we kept her as long as we did. Mark and I shared many tears together that day. The next morning, we snuggled together in my hospital bed with baby Karalyn nestled between us and just wept.

We had several visitors the couple days we were in the hospital from friends and family to our whole fetal health team at Children’s Mercy, which meant so much. I shared sweet, tearful moments with some of my closest friends who have stuck by our side through this entire journey, and they were able to meet our sweet Karalyn who they had prayed so hard for over our entire pregnancy. At around 3:30 p.m. on Monday, the neonatal nurse came in and said we needed to start saying our goodbyes to Karalyn. They wanted to take her in the next 30-45 minutes. They had originally told me I could keep her as long as I wanted-I guess they didn’t realize this momma would literally keep her until forced to let her go. It was time though. I don’t want to be too graphic, but little Karalyn was continuing to worsen in color and other things, and we needed to let her go. To not engrave in our brains the way she looked when we gave her to the hospital, but to remember her when she was first born. The nurse gave us our privacy, and we just held our sweet daughter and bawled. My mom was there and thankfully captured some beautiful pictures of us with our baby as we said goodbye. They are heart-wrenching pictures, but they capture the emotions of the moment so beautifully.

I remember just holding her, trying to memorize how she felt in my arms. Trying to memorize every feature of her so I could engrave it in my memory forever. We didn’t get to build a huge memory bank with Karalyn, we had a short 24 hours. We tried to build our memories as much as we could. While we had her, we rocked her, slept with her, swaddled her in a blanket that Children’s Mercy had given us, took pictures, stroked her, kissed her, sang twinkle twinkle little star to her, read her a book and just stared at this beautiful little girl who was now in the arms of Jesus.

We buzzed the nurse to let her know we were ready (as if you could ever be ready for something like this). We put Karalyn in a hospital blanket so we could keep the baby blanket with us. They swaddled her, and then they took her away. That was it. I broke down of course. Here I was, stuck in this hospital where I had just delivered, but I had no baby to care for. I was released the next morning. They got us discharged first thing in the morning so we could get out asap. It was so hard walking out of that room, the room where all of our memories were made with our little Karalyn. Saying goodbye. Knowing she was still in the hospital somewhere. Knowing we were headed to the funeral home to pick out her urn (which is a beautiful pewter-colored heart that fits in the palm of your hand and engraved with her name, date of birth and Psalm 139:13-16). Not what you envision when you deliver your child. I still cannot believe this is how it all went. It’s heartbreaking. We are heartbroken.

But, we are not without hope. We know she is with Jesus. She has a perfect heart and lungs. We know we will see her again someday. Oh, how I can’t wait for that day! To scoop her up in my arms will be one of my greatest joys. I miss her every single moment of every single day. I know that Christ will bring healing. He is close to the brokenhearted. He will bring good out of this, and I believe He already has. I don’t think the pain will ever go away, and I don’t think God necessarily expects us to just toss the pain aside and be just as great as we were before our loss. A huge chunk of my heart is now in Heaven. We will be forever scarred. I will think about my sweet Karalyn every single day for the rest of my life. I know time will help heal our hearts, but our hearts will never be the same.

The following week was very hard. I had all the normal things that happen after you deliver-healing, bleeding, my milk came in, etc. My hubby and I celebrated our 9-year wedding anniversary three days after she passed away. We had to plan a celebration service for our daughter and get everything ready for that. The service was beautiful. The music we chose was beautiful, the sermon was beautiful, the letters people read along with the individual letters me and my hubby wrote for Karalyn were all beautiful. We spent time worshiping our Lord and Savior. We had a balloon release and blew bubbles for Karalyn. It was sweet and beautiful. I held it together during the service much better than I had thought I would. I had been begging God for strength to get through it, and He heard my cry.

My mom and sis basically took care of my kids for me that whole first week we were home. One of my best friends went grocery shopping for us and had our house stocked by the time we even got home from the hospital. Our church family started a meal train, and we had dinner delivered that Tuesday night, and they are continuing to deliver us meals Mon-Wed-Fri through the end of August! The generosity of our church family has blown us away. They have definitely helped share the weight of all of this. The flowers and cards started flooding in. Such comfort was found in the words and encouragement of so many people.

Now, Mark is back at work. The house is not filled full of family. We are back to “normal” or at least for me, trying to figure out what “normal” is when you have suffered such a tremendous loss. But, I wake up each day. Pray to God for strength, hope and just to survive another day at this point. I take a shower. I make our bed, and I go downstairs to start the day with the two beautiful daughters I do have with me on this earth. It’s so hard balancing grief yet trying to make the lives of your children still just as normal as before. I won’t lie, I am a little distracted by grieving the loss of Karalyn. I would love to just crawl in my bed and stay there all day long. But, I can’t. Life must go on, and my girls need me today and every day. I have let the girls watch more tv lately than I normally do. But, I think with each day I get up and do our “normal” things, life will get better. I will never be “over” my grief and sadness of the loss of Karalyn. But, I know God will bring me to a place of peace and rest. I pick up my Bible, I do my quiet time, I read the promises of God, and I know He will make those real in my life in time. It’s hard though because I feel like because we had such a short time with her, that my emotions are what keep me so closely connected to her now. If I give up allowing my emotions to overwhelm me, then I feel like I will lose some of the closeness I feel to Karalyn. Feeling so emotionally overwhelmed makes Karalyn feel so close and so real. Already the memories of delivering her and spending the 24 hours with her feel so far away. My emotions are the most real memories I have left I feel like. I was so ready to be a heart mama, and then all of a sudden that privilege was taken away. I had spent so much time preparing for it, learning, researching, asking questions-doing everything I could to become as knowledgeable as possible so I could be the best advocate for Karalyn. I compare it to basketball. I spent all this time perfecting skills, practicing, then I didn’t even get to play in the game. I am grieving in lots of different ways-mainly for Karalyn, but there are other things I am grieving in her loss like the fact that I do not even get the chance to be her heart mama; saying goodbye to our medical team at Children’s Mercy who have become like family to me; the fact that I still wish I could finish out the last 7 weeks or so of our pregnancy, to feel her roll around in my belly and to still have hope that this may all be OK in the end. I don’t know if that makes sense or not, but it’s my truth.

So, that basically brings me to today. Trying to find a new normal while having a completely broken heart. It will come. One day at a time. Whether I want it to or not, it will come. Normal with a shot of a forever broken heart. We love you sweet Karalyn.