I'm not sure where to start with my precious baby girl's story. Most of the time I feel like there are really no words for how special she is, or how special her story is. But I feel the need to find the words. I need to write Harper's story. I need to write my story. They are beautifully intertwined. I'm not sure why, but I think it's part of the healing process for me. As a mommy, there is something so special about getting to share your baby with others who love them; getting to tell their story. I don't want Harper's life to go unheard. She had a short life on this earth, but it was a beautiful one.
One of the most redeeming parts of walking through losing Harper has been sharing her with others who loved her so much... Who pleaded with us for Jesus to heal her. Who were devastated with us when He chose not to. And, who weep with us now. The support we've had completely blows me away. We feel so completely drenched in love. How beautiful our community is; that at 10:00 on a Monday night, Harper's name could all of a sudden be known around the world and so many would start praying. Later, we would hear about friends of friends, complete strangers, storming the heavens on our sweet baby's behalf.
And so, I want to tell her story. Her story and our story. The story of how she came into the world, and also of the 2 precious days that we got to have her on this earth.
There is so much I could say about my pregnancy with Harper. I knew the whole time that I was having a girl. The idea was a little hard for me at first, for some reason I had always pictured our family with more boys than girls... But it quickly grew on me, and in no time I was completely in love with the idea of another girl. I loved the thought of Londyn having a sister. I shopped for her, and wondered what she would look like. I prayed for her, and thanked Jesus for a healthy little girl. I daydreamt about what our life would be like with 2 little girls and 1 little boy. I was SO excited for her to join our family. I was so in love with her. The 25 weeks that she was in my belly were busy, life-filled weeks. We traveled more during this time than we have since we started having kids. For some odd reason, I like knowing that my Harper got to travel and see a bit of the world. I'm glad she got to go to the beach. And, I'm sure her daddy is glad that she got to go to a Husker game! :) It was summertime- we went swimming, we played outside, we soaked up life. We were a family of 5, and we were so excited about it. Harper's brother and sister fell in love with her easily. Londyn was crazy about the idea of having a little baby sister, and she couldn't wait for her to come. She spent 25 weeks loving on her. Harper was a lucky girl- she was SO surrounded by love for her 25 1/2 weeks. We could not have been crazier about her.
The story of how my little Harper came into the world starts on a Thursday. I've always been super conscious of how much my babies are moving around inside of me. I'm no stranger to the "drink some juice and lay on your left side for an hour" type of conversations... For a couple of days, I had noticed that she wasn't moving quite as much. So when she didn't move much at all on Thursday, I wanted to go in and have everything checked out. They said she looked fine, but she didn't quite pass her biophysical assessment. They wanted us to come back the next morning to check again. We were reassured over and over that she probably didn't pass the test because her gestational age was only 25 weeks. Back we went the next morning to make sure everything was better. I keep looking back at these two days... It's just so completely frustrating to know that we were so close. If only something would have been spotted Thursday or Friday. If only we could have taken her out while her sweet little heart was still beating strong... I could ask these so many of these questions, and I often do. People keep telling me not to ask the what-ifs. But I feel like I can't land in a good spot until I've asked all of them, until I've been mad, until I've cried my eyes out and wished with every fiber of my being that things could have gone differently.
Friday morning Harper passed her biophysical assessment. Not only did she pass, but the ultrasound tech told me she looked perfect. She was breach and facing my back, right up against my placenta. The tech said that I probably wouldn't feel her move much. She was all padded in. I remember seeing her sweet little body moving inside of me. She looked so perfect; I thought for sure she was fine. And, I felt so reassured by the technician who said over and over how great she looked.
That weekend was Halloween. We were pretty busy all weekend, but I do remember feeling her move a good amount. Sunday afternoon we were all dancing around the living room. I felt her move, and told Londyn that Harper was dancing with us and that she couldn't wait to come out of mommy's belly and dance with her sister. There will never be enough words to describe how badly I wish this were the case.
Monday, November 1st is Harper's birthday. I didn't feel her move all day. It is SO hard for me to think back about this day. All of the things I would have done differently if only I could have known. That morning my Bible time with the kids was about how God made queen Esther brave. I had no idea at the time, but God was preparing my own heart for the next few days. He was reminding me that He makes me brave no matter how scary the situation. I've heard stories of people who had to hold their little baby while he/she died, and I've thought before that I would never have the strength to do that. My God was preparing me for the hardest, scariest days of my life. Monday morning God wanted to remind me that I am brave.
All afternoon I tried to get her to move. I drank coffee, juice, pop; all the while reminding myself that the tech had told me I wouldn't feel her move much. Finally, around 6:30 in the evening, I had had enough. I wanted to know for sure that my baby was ok. We packed up and left for the hospital. We dropped our kiddos off at my mom's, telling them that we would be right back. We headed to the hospital. I remember we sort of took our time. We talked and laughed. It's so weird to think about- we thought for sure everything was fine. As we got in and they hooked me up to the machine, something seemed "off" from the start. The nurses/doctor all tried to be so reassuring... But as time progressed, we knew that everything was not ok. Harper's heartbeat was a little on the low side. It would drop way down, and then come back up. I could see the panic in their eyes as more nurses came into the room and stared at the machine. The doctor on call came into the room and started an ultrasound. We could see our precious little girl. Her heart rate was still ok, but she wasn't moving. We sat there for what seemed like forever trying to get Harper to move. They had me eat some crackers and drink cold water to see if that would wake her up. I remember thinking- Oh Jesus, please don't let me be watching my baby die... I started to feel so panicky at this point- my whole body was shaking with nerves. I focused on not passing out while a nurse started an IV for a sugar solution.
The doctor on call had to leave the room to deliver a baby. She wanted me to eat some more food, get the IV in, and let it take effect. A few nurses were hanging out in our room monitoring Harper's heartbeat. All of a sudden it disappeared. It had been hard for them to find all along, but I could tell that this was different. Our room filled with people in just a few short seconds. I don't remember much about this moment other than that it felt so long. Later on my doctor told me it was just 2 minutes, but it felt like years. The only thing I do really remember is that they shoved an oxygen mask in my face and kept telling me to breathe. I was sobbing at this point and it was all I could do to sit there and try to keep breathing. One sweet nurse looked at me in the eyes and said, "You need to breathe for your baby". And so, I focused on breathing for Harper.
The doctor came running back into the room, and at the same time one of the nurses handed me a pen and said, "sign this". She didn't have to tell me what it was; I knew I was giving them consent to take my baby. I remember looking at my sweet husband. We had no idea what was going to happen, but we knew that 25 weeks was way too early. There were no words; we locked eyes as they ran me out of the room. I'm not quite sure how to describe the next minute. I would have thought that I would be a complete wreck. The only way I know how to explain it is that the peace of my Jesus completely sustained me. I remember focusing on breathing. I remember thinking- ok, here we go. I remember the sweet, quiet tempered doctor yelling at people in the halls to get everything ready. I remember the panic in her face. I remember them crashing my hospital bed into just about every door we had to fit through. We got into the room at 9:09 that night. I think they had me to sleep within about a minute, which evidently is pretty fast. As I laid on the table watching people scramble, it was probably one of the most surreal moments of my life. Was this really happening to me? How had we gotten here? Things like this don't happen to me, I have had two perfectly healthy by-the-book pregnancies. I watched all of the people getting things ready, and I begged with Jesus for my daughter's life. I laid on the table and listened to the doctor ask for the scalpel. She glanced at me, and for a moment I was terrified that she was starting to cut me open while I was awake. But the anesthesiologist looked at me, said goodnight, and I was out in a matter of seconds. My sweet Harper was born at 9:12. Her daddy was watching from outside the room, so proud of his tiny baby girl. She weighed 1 lb, 15 oz. Teeny tiny. She was born without a heartbeat. They worked for about 10 minutes to resuscitate her, and I will always be so so thankful that they did. They gave me two days with my baby. My sweet, perfect baby girl was not supposed to be born like this. She was supposed to have a seamless entrance into the world. I was supposed to be able to hold her, her daddy was supposed to be able to tell her how beautiful she was. We were supposed to be able to cuddle her and love on her for the rest of her life.
Dana had no idea what has happening as he watched her little isolate surrounded by doctors, and me on the operating table. I can't imagine what that moment was like for him. At least I got to sleep through it. He had to stand there by himself while he watched the world crashing down all around. Thank God for amazing friends who were already on their way to the hospital, and who would be with us for almost 3 days straight. Our friends and family would take over for us- they stood with us when we couldn’t stand by ourselves. They took our precious kids, they cleaned our house, they went grocery shopping, they made meals for weeks. It has been the most beautiful picture of the body of Christ that I’ve ever seen.
Waking up from a c-section with out drugs was the most pain I've ever experienced. It was horrible. An experience I hope to never have again. I slightly remember telling my doctor (who had arrived during the surgery) that I was going to kill her if she touched my stomach again. :). Oddly enough, I wasn't worried that Harper wasn't going to make it. Someone told me right away that she weighed almost 2 lbs, and I've heard stories of babies who weighed less surviving and being fine. I also knew that a baby at 25 weeks was definitely viable, and so I had much hope that she was going to be ok. Reality didn't sink in until later, when I was more awake and I heard more details of how she was doing.
I was pretty out of it for a long time. I hate how the pain meds made me feel. Looking back, I so badly wish that I had felt better so I could have spent more time with Harper. The morphine made me throw up, and post c-section that was not a pleasant experience. I felt generally exhausted, nauseous, light-headed, and so out of it. I think around 2 or 3 that morning I asked my nurse if I could go see Harper. At that point, I remember thinking that it would be the biggest regret of my life if she didn't make it through the night and I never saw her alive. I can't explain how horrible it was to feel so so sick, but so desperate to see my baby. My nurse that night was sent from God. She was amazing. She understood how I felt and helped get me down to see Harper.
Seeing my tiny baby in her isolate was a terrifying experience for me. It felt so wrong. She was supposed to be warm and cozy inside of me. It just seemed to be so opposite of what was right. She looked tiny and cold, lying on a hard little bed. She was hooked up to so many machines and had been so poked and prodded. It was devastating to see. I was light-headed and about to throw up, so after meeting my beautiful, tiny baby we went back upstairs. I was undone. I so badly wanted to feel better so I could get out of my bed and talk to my baby. I wanted to be able to get closer to her so she could hear me and so I could see her face. There were so many things I wanted to tell her.
I was completely unable to sleep that night. Our amazing friends stayed until the early hours of the morning. They brought food, hung out with my husband, and just sat in our room because I didn't want to be alone. My sweet nurse sat next to my bed and talked with me in the middle of the night.
Tuesday morning finally came after a long night. My two goals of the morning were to get down to see Harper in a wheelchair instead of a hospital bed, and to start pumping milk for her. We tried a couple of times to see Harper early that morning. Each time we went downstairs to the NICU, they were working on her and it was a bad time. The second time down, we were cornered by one of her doctors who wanted to talk to us. There are no words for how unnerving it feels to have a neonatologist look in your eyes and say they need to talk to you. I found myself again only able to focus on breathing so I wouldn't pass out. I've never passed out in my life, but so many times during this process I had to focus on breathing and tell myself over and over that God makes me brave.
The news that the doctor had for us was actually nothing what I had expected. All along, I thought that either Harper would live and be totally fine, or not live at all. I never guessed that maybe she would live but not be totally fine. As the doctor told us all that was going on in Harper's little body, I felt like I had been punched in the gut. The air left my body and I was numb. I couldn't cry. I couldn't talk. I could only sit there and wonder again how in the world we had gotten to this place. He told us that he wasn't concerned that Harper wouldn't make it. He said she was in horrible shape, but that they have medicine to treat things like her blood pressure, oxygen, etc. He told us he thought for sure she would live. This was of course the best news we could have ever heard. But then, he went on to the bad news. Harper had a lot of blood on her brain. A lot. The trauma of her resuscitation had caused her brain to bleed. Blood on the brain leads to brain damage, and he said he couldn't predict how much normal function she would have. My heart was beyond broken to think about my little girl not living a normal life. All of the things that we had hoped and dreamt for her were all of a sudden in question, and it was a huge blow to take. So much joy at the thought of her living, and so much sadness at not knowing if she would ever even know that she was living. That morning, we gave our girlie completely to God. He knew what her life would look like. And more importantly, he could heal her in an instant. Immediately we heard stories from friends and nurses about other babies who had bad brain bleeds and turned out completely fine. Our hearts started to fill with hope. We were so in love with this sweet girl, and we would love her no matter what the outcome was. We were just overjoyed knowing that he thought she would live. So overjoyed, and so in love. She was ours.
After a little nap, I finally got my first sweet time with Harper, just the two of us. I was feeling a lot better, and I felt up to being out of bed for a while. There are no words for how special my time with her was. She looked so so beautiful. Her hair was dark, and looked just like Londyn's when she was born. I was so completely in love with her. I got to be alone in the room and just sit by her little bed and talk to her. I looked at her sweet tiny body. I prayed for her. Never having had a NICU baby before, I could not have imagined how empty my arms would feel not being able to hold my newborn. It felt so foreign and so wrong. My baby was lying next to me, but I couldn't touch her or hold her. It was unbelievably hard to look at her and see all of the tubes and wires coming from her body. It looked so painful, and there was nothing I could do to stop the pain. It went against every instinct in my body to look at my baby and be able to do nothing to help her. She was so brave. I felt too weak to walk the road ahead, but I had to. My sweet Harper made me brave too.
The rest of Tuesday is kind of a blur to me. There were constantly people coming to meet Harper and to be with us. My mom and brother brought our kids up to the hospital. It was so good to see them and spend some time with them. Our friends were amazing. They spent a lot of time in the lobby. Sometimes I needed people in the room with me, and sometimes I needed to be alone with Dana. We prayed a lot for Harper that day. We talked to her. We also tried to rest a lot. We thought that the journey was just starting, and not having slept much in the last 24 hours, I tried to catch up on my sleep. If I had known that the journey was going to be so much shorter, I would have spent every waking minute with Harper. I hate that I thought we had so much time. I hate that I slept. I hate it, but at the same time I know why we did. We had no way of knowing. If only I could have known. I was constantly feeling torn between taking care of myself and being with Harper. I tried to balance the two on Tuesday. I wish I hadn't balanced them. I wish that I had spent every moment of that day down by her side. So many things I wish I could change...
Wednesday morning was the morning that changed our lives forever. Dana met my mom early and left to take our kids for a couple hours. Their world had been turned upside down too the last few days, and we wanted to try to do as much as we could to give them a sense of normalcy. My Wednesday morning coffee girls were on their way up to stay with me for the time Dana was gone. Not 10 minutes after he left, the phone in our room rang. My heart stopped beating. I knew it was bad news. I just knew. It was Harper's doctor and he was on his way up to talk to me. As he walked into our room, I knew that I was right. I could tell that he wasn't excited about the news he was about to give me. Breathe. Breathe. Be brave. He asked if I wanted to wait for Dana to come back, but I couldn't wait... I needed to know what he was going to say.
It was bad. Harper's body was failing her. Something had changed in the middle of the night, and they could no longer keep her alive. She wasn't going to make it. My baby was going to die. What do you do? Breathe. Sob. What do you say to someone who tells you that your baby is going to die? I was so thankful that a sweet friend of mine was in the room with me. I turned to her and sobbed. I completely lost it. I called my husband, the man who I love, and told him that our daughter was going to die. Nothing else mattered any more. Not sleep, not pain; I just needed to be by her side. I was so sick. I felt nauseous and light-headed again. I was terrified that I didn’t have the strength to hold my baby while she died. But again, God made me brave. I knew that this would likely be the hardest day of my life, but what I didn’t know is that it would also be the sweetest. It was the last day that I got to be with my Harper here on Earth. It was the only day that I got to hold her sweet body.
Dana and I met down in her room. The information was coming fast and furious. We didn’t know what to think. They kept explaining her condition to us, and wanted to know what we wanted them to do. They were basically telling us that we had to tell them when we wanted them to take her off of life support. They said that given the current treatment she was on, she could live anywhere from a few hours to much longer. But the bottom line was that she was not going to make it. So they said we needed to decide when to stop the treatments. It felt like my insides were being torn out. How in the world could we tell them to stop the treatments that were keeping our baby alive? How could we ever be ready to do this? They explained to us that if we wanted to hold her while she was still alive, we would have to let them know so they could take a couple of the tubes out first. As the minutes wore on, we realized that God was making the decision for us. We didn’t have to tell them to stop the treatments; Harper’s body was failing even with the current treatment. In a weird way, this made it much easier. We never had to tell the staff that we were ready for the end. As they said to us, she made that easy for us. So, as the end drew near, we had all of our friends and family come in to say good-bye. We had a sweet dedication service in the room. We gave our sweet baby girl to the Lord. We’ve done this figuratively with our other babies. Never did I dream that I would literally be giving a baby to the Lord in this life. It’s a pain that I wouldn’t want for anyone I know.
Everyone else said good-bye to Harper and left so Dana and I could hold her and talk to her. We got to spend the next hour with her. We got to hold her. To see her beautiful face. To love on her. To say all of the things to her that we get to spend a lifetime telling her brother and sister. We got to tell her that she was going to see Jesus, and that we would be there soon. We got to tell her that her mommy and her daddy think she's the most beautiful girl in the world, and that there is no end to our love for her. We got to tell her about her brother and her sister, and how much they love her. We got to tell her that she would never know how badly we wanted to have her here, and that we would miss her every day until we see her again. Holding my sweet baby and whispering in her ear as she went to be with Jesus was the sweetest moment of my life. It is by far the hardest thing that God has ever asked of me, but I will always be so thankful that I got to hold her tight while she took her last breath. I got to hold her with no tubes in her body, skin to skin, as she went to be with Jesus. With tears streaming down our faces, we got to whisper into her ear. It was beautiful.
Harper had a short life, but it was a beautiful life. I am amazed that even such a little life can have such a big impact. I am so proud of my baby girl. She was SO loved by SO many. She stole our hearts. She was perfect and beautiful.
Her two days were hard days, filled with lots of ups and downs. I wish I could tell a story that was more perfect, more glorious. But they were real days. They were hard days. We did the best we could; still there are so many things I wish I could change. But, it’s a story. It’s my baby’s story and I want it to be heard. I have to believe that just like God wrote Harper’s story, He is writing our life’s story. And I have to believe that it is good. I have to believe that God knew Harper’s story before time began. My little girl is already accomplishing the purpose of life. She’s worshipping Jesus, and I can’t wait to be with her.
We will always be so thankful for Harper’s story, and the 2 precious days that our baby girl changed the world.