I remember driving home on that perfect evening in May, we had just finished our maternity photo shoot. I was 36 weeks pregnant and had never felt so vibrant, beautiful, and peacefully happy. I think bliss is the best word to describe what I felt. B and I were talking about the sweet baby girl in my belly- how things had finally come full circle and how excited we were to meet her. I had a strong feeling she was going to come early, so we talked about all the things we needed to quickly finish before her arrival. We had been waiting for this experience for 5 years.
I remember thinking several times that week about how perfect life seemed, and recognizing that I hadn’t felt sorrow or heartbreak for quite some time. “We are finally here. This is what I have been waiting for- and it really is just as good as I dreamed it would be”, I thought. Then quickly my mind turned, and I had this feeling of, “Things are too good. We are too comfortable. Life is too easy right now- Something is coming.” I don’t know why my mind went there, maybe I had just gotten used to the heartbreak we experienced so often on this journey. I shared my thoughts with B on our drive home that night. “Things just seem too good to be true B. Don’t ya think?” He agreed, but calmed my “something is coming” thought with recounting how far we had come and how much we had been through so far. Maybe we still couldn’t quite believe we were finally having a baby.
My mother intuition was right- Indy was coming early. My water broke at 5am just 5 days after we had our maternity pictures taken. I was 36 weeks and 5 days. For years I had planned and prepared for a natural childbirth. With that preparation I learned that having your water break before you are in active labor is not favorable at all. So naturally, I broke down crying when I realized this was more than me wetting the bed. This was indeed that start of the experience that changed our lives forever.
Labor progressed slowly. Nothing was going as I had hoped, and I was stressed. My natural childbirth plan wasn’t looking very hopeful because my water broke first, and Indy was early. B left for a bit to do some things at home per my request. Thirty minutes later the biggest, most beautiful bouquet of flowers were delivered to my room on labor & delivery. There was a card that read-
I’m so excited to see you soon and can’t wait for you to hold me. I talked God into letting me send you these pretty flowers. The next couple hours is going to be a bit tough, but hang in there, you can do it! Thank you for your sacrifice. I love you!
Truly yours, Indy.
It was just what I needed to get me through the hours that followed. It was the best reminder that B Jones is the fullness of my heart, my rock, and absolutely the perfect man for me. Because things really were going to be real tough for the next little bit.
At hour 35 of labor, feeling like my body was giving up, I got an epidural. And I finally slept. When I woke up it was time to push. It was happening. We were about to meet our baby girl. I was elated. We listened to music- mostly Mumford and Sons, however there was that one Dr. Dre song that got me really amped 😉 I danced a little as my epidural had worn off, sang a little, and laughed a lot. It was a party in our delivery room. I pushed for 4 hours, but time passed quickly because we were so excited.
Then, she arrived. Our Indy Llew was here. Birthing a child was the most incredible experience of my life, without a doubt. I looked at her laying on the delivery bed. I cried happy tears. I looked at B, He looked at me. Then we both looked back to her. I was getting situated so I could hold her skin to skin. I picked her up. I looked at every part of her. “Her ears look different” I thought to myself. Then out-loud, during this out of body experience I was having, I said, “She doesn’t look like me”. I scanned the room to see if anyone heard me and agreed, but no one was paying attention. I easily talked myself out of any concern, she did just spend hours in the birth canal after all. I held her for 5 minutes then Bri cut the umbilical cord. I tried to have her latch on to nurse- I can’t even remember if she did latch or not.
The room was hectic and the pediatric team was in the corner waiting to assess her because she was “pre-term”. I told B not to leave her side. They took her to the baby warmer and started their assessment. Then, suddenly, the power went out. The power in the entire hospital went out. Everything was dark, everyone was franticly moving about trying to get things hooked up to the backup outlets. I don’t remember what I even felt at that moment. It was so atypical for something like this to happen. “This has never happened in all the years I have worked here”, everyone kept saying. But this event proved meaningful for B, as I will explain later. The back-up lights came on but things were still very dim. I tried not to be too alarmed when after a few minutes the pediatric team came to tell me Indy’s oxygen saturation was dropping. They needed to place her on oxygen and take her to the nursery for testing. I was still in a state of euphoria for what my body had just accomplished, so being calm in this situation came naturally. I told B to stay with her and be her advocate, and off they went. I think it was about 40 minutes later- I was freshened up and snacking on some crackers, wondering how things were going in the nursery with my baby girl. I longed to hold her and have B next to me. My mom and doula were at my bedside.
This is where it gets difficult to write. Revisiting this moment, this experience, those initial thoughts and feelings, is very painful. My hands shake, my eyes fill with tears, and a lump finds a place in my throat every time I recount what happened next. This is the reason I need to write it though. I need to let it out and put into words the pain that lingers in my heart from this night. I need to bury the darkest emotions I have ever experienced and give myself closure, because this night still haunts me.
The pediatric doctor walked through the door with Brian following her. No Indy. “Where is my baby?” I thought. The doctor, whom I have never met, did not look at me as she asked everyone to leave the room. I looked at Brian. I will never forget the look on his face, he seemed surprised and concerned. My eyes quickly met my mothers, panic and terror was all I could see in them. “My baby died. She is going to tell me my baby died.” I thought. Everyone left the room. B came and stood next to me and grabbed my hand tightly. B never acts scared or worried, but I could feel his concern for our baby girl. The doctor sat at the end of the bed. I do not remember how she started the conversation, I do not remember if I asked if my baby was ok, all I remember is her fact-of-the-matter tone that lacked compassion as she said, “We think that Indy has Down Syndrome.” Shock. Horror. Disbelief. “WHAT??” I yelled it through the sobs that started faster than I could process the words she had just spoken. “No…. No” as my head fell into my hands. I think I was too scared to look at B. I just remember him squeezing my hand tight. “Are you sure?” I cried. “Well we will do some genetic testing to be sure, but she is showing signs, we are pretty sure”. I asked what signs, hoping I would know better than her and could convince myself this doctor was wrong in her findings. “The crease in her hand, the gap between her first and second toe, and her ears and eyes look suspecting.” Her ears. Something told me they were different. I asked if she was ok, Is my baby going to be ok. “We are concerned about her heart and lungs, we are going to do an echocardiogram immediately if that is ok with you. We will transfer her to the NICU.” More shock and disbelief. Anger, heartbreak, anguish. The doctor left and my mom came back into the room, looking frantic. Me, through stunned tears, “They think she has down syndrome.” Then sobs. From me and my mom. “I don’t care, I don’t care honey.” She hugged me. I suddenly felt numb from all emotion. No more tears, no words. I sat there unable to speak. My mom tried to make me feel better by saying that maybe they were mistaken, maybe the test would prove them wrong. Bri was now sitting next to me on the bed. In a very solemn voice, with a very serious tone, he shrugged his shoulders and shook his head while saying, “She has down syndrome. That’s it. She has it.” Silence. “I think Terah and I need to be alone now.” It was after midnight, and the power was still out in the hospital. My mom cried as she left us there. We laid on that bed, neither of us spoke for several minutes. I felt so many things, but nothing was stronger than the numbness that had taken over. I didn’t just have a baby. This is not my baby. The baby I had inside of me for the past nine months was my Indy baby, not a “down syndrome baby”. The sobs started again. I wanted to go back. I wanted to put her back inside of me and do this all over. Please take me back to yesterday. Please let this be a nightmare, please let me wake up. My soul was begging and pleading to not let this be real. Please…… no. “Our life is over B. Our life is over. What are we going to do” I finally looked at him. He was staring off into nothing and quietly said- “I never imagined that what I thought would be the best day of my life, would turn in to the worst.” I felt like I had failed him.
The midwife came in the room. She could barely look at me. “Indy’s blood sugar is at a 25. They need your permission to give her glucose.” I immediately feared the worse, as an ER nurse I know what a blood sugar level that low can do to someone if prolonged. I asked if she was going to have brain damage now, on top of Down syndrome. I was distraught when all she said was, “I don’t know. Sometimes babies who are in the birth canal for a long time come out with low blood sugar, but I can’t say for sure. I am so sorry” as she looked at us with pity in her eyes. At this point I had convinced myself of the worst possible outcome in every aspect. My heart was throbbing so bad I wanted to rip it out of my chest. I wanted to run away and never come back to this moment and to these feelings. I wanted to die. I said it several times as I sobbed. “I just want to die. I am so devastated, I’m so hurt, I am so angry, I’m so scared. Why would God do this to us. Why…why.”
They transferred us to the post-partum unit. It was 1 am. I wondered what was happening to my baby all the while feeling like she wasn’t my baby. I felt like I didn’t know her. This life that had grown inside of me for the last nine months was not the life I thought I was holding. There was such a disconnect present- it is hard to explain. B and I got settled on the bed. He held me in his arms and we cried, and we waited. The NICU doctor came in 3 times, bringing with her bad news each time. A hole in her heart, and pulmonary hypertension. Then possible pneumonia, but they couldn’t verify through blood- they had already poked her 3 times for blood work with no success. They started antibiotics to be safe, which was very upsetting to me. I started sobbing again. Feeding tube, oxygen, IV’s. Finally, at the third visit from the NICU doctor, I said in a very upset tone “When am I going to be able to see my baby??” She acted like she had been waiting for me to ask. I wish I would have asked (or demanded) to see her at the very beginning. Because to this day, the thing that haunts me the most is that my baby was alone in the NICU, being poked and prodded incessantly, without her mama and probably scared to death, for 5 hours. My heart throbs with the deepest anguish every time I think of it. If things had gone “as planned”- she would have never left my side in that hospital. But I have learned that making concrete plans in life is oft times a worthless endeavor. There is always a bigger plan that will ultimately prevail.
At 4 am we were taken to the NICU to see our baby girl, after the longest and hardest 5 hours of my life. I was terrified to meet her. I had met her once, but now I was going to meet a new her. The real her, the one I didn’t think I knew. We walked through the doors to the NICU room. I don’t even recall if there were other babies in that big room. My eyes found her first, and she was all that I could see. I stared at her face as I walked up to her bed. Tears were streaming from my eyes and I was trembling. She had tubes, wires, and monitors everywhere, and I realized in that moment that I had dreamed of this a couple months prior. I had dreamed of a baby with all these monitors and tubes. However I never once thought that the scene would come to life for me and be my baby lying there; hooked up to monitors with IV’s in her head, oxygen in her nose, and a feeding tube in her mouth. Yet there she was, and here was I. Awake my soul.
Her hair was done and she had a little yellow bow glued to her head. She was sleeping peacefully, and she was absolutely beautiful. I still felt disconnected though, I still wondered if she was really mine. B and I just sat around the edge of her bed warmer and stared through tear soaked eyes. I will never forget her nurse, the one that had done her hair so cute. She stared me straight in the eyes as I cried and said with such confidence, “She’s awesome you guys. (pause) She is. She’s awesome”. Like she was trying to convince us of something we didn’t know yet. I finally got the courage to ask if I could hold her.
The nurse helped arrange her wires, and picked her up. She placed Indy Llew in my arms as my heart pounded in my chest. I was so scared of what I was going to feel, or not feel. I held her timidly… but in that moment I knew, nothing doubting, that she was mine. She was mine and I FELT. I felt her incredible spirit, I felt her love for me, her longing for me, her comfort with me. I felt the most amazing and scary love- a love I couldn’t deny. This beautiful, tiny, precious soul was indeed my Indy baby. The one I carried for 9 months, the one I knew, the one I adored more and more with every kick and hiccup in my belly. This was her, and she needed me to love her just like I did before that doctor delivered the news. Awake my soul.
We stayed by her side for 4 hours. I held her skin to skin, inspected every inch of her perfect little body, adored her, and cried. The tears didn’t stop for me for several weeks. But B, he only needed a few hours. They say one parent always grieves harder… that parent was me. I could have never gotten through this without B. He was the rock and the foundation to our new life, the propeller that pushed us onward, for months.
We left Indy at shift change so we could get a couple hours of sleep. At this point I had hardly eaten or slept for over 48 hours. B helped me to sleep as I cried. When I woke up, he was sitting on the couch next to me and appeared very calm. He came to my side and said, “I sent a message to all our family and friends and explained everything, so you don’t have to.” The tears came again. I was so scared of telling people. I didn’t want anyone to know. I didn’t want everyone talking, a chain of phone calls and texts- “Did you hear about Brian and Terah’s baby? So sad. So awful.” I didn’t want people feeling bad for us or pitying us. I wanted people to be happy for us. We waited 5 years for our baby girl. I wanted this to be a celebration, even though I wasn’t celebrating yet. We quickly had over 200 text messages on our phones. All messages of love, support, and congratulations- “She is beautiful.” “What can we do to help while you are in the NICU”. The love was overwhelming. By the end of our hospital stay we had over a dozen bouquets of flowers delivered to our room. Gifts left on our porch. Acts of service being done at our house. More support than I ever could have dreamed. The people in our life are just so good- and we will forever be grateful for those that carried our burden beside us.
The hurt didn’t go away, it waxed and waned for weeks. Sometimes it was completely absent and sometimes it was overwhelming. Our NICU days were long and very difficult. So many unknowns and what if’s, so many doubts and fear. But they were all met with the many triumphs we experienced, the moments of overwhelming love and acceptance, the pure faith we enlisted in God- who’s presence was felt stronger than at any other time in my life so far. The morning after Indy was born my mother-in-law came to the hospital and said to me with tears in her eyes, “I was praying this morning and got the most overwhelming feeling that she is meant to be in our family. She is meant for us, and I was given such a feeling of peace.” Her words comforted me so deeply because it confirmed what I knew- she was meant for me. Awake my soul.
There is so much more to this story. So much more to our new beginning. I will share it eventually. For now I will end by sharing a small glimpse of this story through B’s eyes. Two days after Indy was born B said to me, “Remember how the power went out right after Indy was born?” Me, having actually forgotten that until then, “Oh, yeah. That was crazy huh?” B- “I knew when that happened something big was coming. It was like God was telling me “Ok B Jones, this is your reset. This is where your new life begins.” I knew things were going to be different but they were going to be ok. We are right where God wants us to be. Life is going to be good Turtle B.”
I clung to every word. Life is going to be good, I know it is.
“In these bodies we will live, in these bodies we will die. And where you invest your love, you invest your life. Awake my soul!” –Mumford & Sons