I have spent the last 18 months of Arrow’s life questioning my faith. I stood strong during my pregnancy. I trusted God for His faithfulness, even if that meant Arrow didn’t make it to term, or if it meant Arrow had to have have heart surgery following birth. I trusted Him even more when she was delivered healthy and alive; I trusted Him even more as we walked the NICU journey and she grew stronger every day; and I believed Him for miracles as I continued to pray for her heart to be healed, as I prayed with our church pastor who visited us at Swedish regarding her heart. I believed in miracles when we left the NICU with no heart surgery and being told her heart had healed itself. It’s amazing to me how I can see the miracles He provided in her life immediately, but I still spent the 18 months questioning Him and my faith. I spent 18 months wondering why she was born with Down Syndrome? Why does she have to live a life where she has to work harder to achieve the same milestones as others? Why does she have to live a life where others will judge her, dislike her and mistreat her because of her 47th chromosome? Why did she get healed and avoid heart surgery but other babies don’t? Why do other babies with Down Syndrome, or even other birth anomalies, suffer, have multiple surgeries and some don’t even survive? I questioned why Aaron and I couldn’t have a neuro-typical baby; why I couldn’t give him one? Why my body failed me? And as these questions filled my days, my guilt and shame increased. How could I have all these questions? If I shared them people would think I don’t love my daughter. If I shared them people would doubt my faith, and while I may be doubting mine I don’t want to others to. I often thought of reaching out to someone, of asking my questions, of having a person strong in faith guide me, point me in the direction of some truth. Instead, I sat in fear. Fear of what others would think of me if the knew all they questions of why I constantly had running through my head.
One evening while I was cooking dinner and talking with my oldest son Zion, an unexpected answer to my whys was provided to me. Our conversation was about simple, benign topics that moms and sons usually speak of, but for some reason, our conversation took a more serious turn as I told him with tears streaming down my face, that I am struggling. I decided to open up, to share with him that I am questioning my faith, that I don’t understand why God gave me Arrow, why she was born with Down Syndrome, why she has been healthy but others suffer. As I listed off my why’s, with tears streaming down my face, Zion stood and listened. He didn’t tell me to stop being stupid, he didn’t tell me I was being irrational; he simply listened. As I finished sharing my feelings that I had been keeping hidden for 18 months, he smiled at me and responded with love, compassion and wisdom by telling me,
“At Ekklesia just recently our pastor spoke about this very thing. How we often ask why? How we seek to know why situations are happening, but instead we should be asking God a different question. We should be asking God What? What am I supposed to learn from this? What do you want me to do through this? The question should never be why but instead what?”
I have spent much time since this conversation with Zion marinating on the statement of asking God what instead of why. The healing has been great as I have begun to change my mindset and begin asking God what. I struggled with why because there would never be answers, I would never know nor understand but with what I can grow, I can change, and I can find purpose through the journey. As I have asked Him what I am to be learning, what is the purpose of this journey for me I have begun to see the questioning of my faith lessen and the strength of my faith begin to grow again. Asking what has helped me to look at the last 18 months differently and come to positive conclusions. I am learning that I can sit silently and simply raise my daughter, speaking up for her when necessary through school and other situations or I can be bold. I can allow my great love for her, my questions of why she has to live a life where people with judge, dislike and ridicule her because of her 47th chromosome, partnered with my faith to help be speak up, to advocate and to educate. My life isn’t about why anymore, instead it’s about what. What am I going to do to make a difference? What am I going to do to make the world better for kids like Arrow? What am I going to do to educate people about Down Syndrome? What am I going to do to educate medical professional on how to deliver Down Syndrome diagnosis with compassion rather than dread? What am I going to do to love on other moms who walk similar paths? What am I going to do to make a change, to be bold, to act in love and in faith?
Those what’s are big questions, but I know there are big answers! I know I will be stepping so far out of my comfort zone as I move forward because my faith in God and love for Arrow is greater than Fear. I know I will never be the same person I was before I had her; for the person I am becoming will be a world changer. I have prayed daily for my kids to be world changers, and now it’s my turn to be one, my time to show them what being bold in your faith means. I know I will be putting one foot in front of the other to where I am being lead; I know I may not always know how advocating for my daughter, how being bold and educating others, or loving other moms through their journeys will look like, but I know this: I will follow where I am called, I will continue to ask what and no longer ask why.
As I begin to be authentic and honest about this journey, I feel I need to share the journey from where I left off. I wrote often during my pregnancy. I shared frequently about the medical appointments, the diagnosis, the possible heart issues and how our family was processing it all. I shared her delivery and even wrote that I would share our NICU journey, only to not actually share. Initially I thought I would share our NICU journey through a slideshow of pictures; thinking that would tell our story. It’s only now, as I have decided to be honest, to share our story and all the feelings that are part of it, I realize I cannot start from the present, but I have to start from the beginning, and have to write it. A slideshow of pictures doesn’t clearly articulate the emotions, good and bad, of the journey. I also realized in order for me to fully heal, to accept my feelings, I have to start from the beginning; picking up where I had left off... I have to share our NICU journey. Sharing our NICU journey won’t be in one post chronologically sharing the events. It also won’t be in several post chronologically sharing the events. Instead, it will be several posts, randomly ordered, but sharing our journey, the beauty in the midst of the hardship.
Ten hours following Arrow’s birth, Aaron put me in a wheelchair, pushed me down the hospital hallway to the elevator and up two floors to the NICU. He helped me lean from my wheelchair over the sink to wash my hands and then wheeled me down the hall to Arrow’s room, pushing my wheelchair next to Arrow’s bed. I sat in my wheelchair, in awe, as I stared at my beautiful, little daughter, with tubes attached to her, thankful she made it safely through delivery and wondering what the next few days would hold. I stared at her questioning if her heart would need surgery; would I have to hand her over to a doctor for them to fix her heart? As I sat staring at Arrow, the nurse walked over to Aaron and me, asking if I would like to hold her. The nurse prepared the recliner for me, Aaron helped me from my wheelchair to the recliner and as I sat back, the nurse picked Arrow up from her bed, helping place her on my chest, inside my hospital gown. It was in the moment my whole world was right. After ten hours of giving birth to my daughter and seeing her swaddled in a blanket with a pink hat on, I finally was able to hold her, to touch her, to feel her against my skin, to touch her soft brown hair, and stare at her beautiful face and little hands. This moment is forever etched into my heart for it was in this moment as I held Arrow that I knew without a doubt my life was never going to be the same; that I was never going to be the same mom, woman and person as I was before.
I could have held her forever inside my shirt against my skin. Unfortunately, I was only allowed to hold Arrow for a short period of time, as the nurse needed to place her back in her bed, making certain all her monitors were hooked up correctly and allowing her to rest. Handing Arrow back to the nurse, seeing her placed into her bed and having to be wheeled back to my postpartum recovery room was the beginning of many of the hardest moments I had ever experienced. I returned to my hospital room, surrounded by moms with their babies, to sit in my empty room with my baby two floors away from me. While I was filled with joy over the birth of my daughter, my heart was beginning to feel the first of many moments of grief I would experience along this journey. I wanted to be sitting in my hospital room with Aaron and by baby, staring out at the city, talking about how beautiful our baby girl was. I wanted to be holding my daughter, trying to nurse her rather than sitting in my room, talking with Aaron about our beautiful daughter while I tried to pump instead.
I spent 26 days holding my daughter every three hours at feeding times. I lived my days in three hours increments. Every three hours during the day, I could change her diaper, I could touch her, hold her and help the nurses place breast milk in her NG tube. Following her feedings, I was allowed to hold her for a few extra moments, then I would have to place her back in her bed. Once I placed her in her bed, I would walk to the mother’s room, get situated and pump. As much as I hated pumping because I would rather be holding my baby, having her nurse, rather than having a machine attached to me, I would pump with great joy because for me it was one area I could feel in control of what I could provide my daughter, as I felt out of control in every other way regarding my daughter.
I had no control over when I could hold her, feed her, change her and even take her home. I had no control over what her health would be like; if she would need heart surgery; if she would have any typical health issues associated with Down Syndrome. I had never felt more inferior as a mom and yet I needed to be strong. I needed to show strength for my kids, for Aaron, for family members and I needed to be strong for Arrow. Arrow needed me to continue to show up, not just physically but emotionally. She needed me to stay strong in order to advocate for her, to ensure she was getting the best care, to ensure the nurses knew she didn’t cry, to ensure they didn’t force incorrectly sized NG tubes down her nose. She needed me to be her voice and her strength while she fought to get physically stronger, while she fought to eat in order to get home to her family. It was here, through the NICU journey where I began to feel grief but learned that in order to keep moving forward, I needed to just keep putting one foot in front of the other. I learned that in order to show up for Arrow and the rest of my family in the way they needed me during this journey, I needed to continue being strong. I couldn’t sit in my grief. I couldn’t feel the hurt, the pain, the what if’s, the whys.
Looking back I can see no one asked me to be silent with my grief, my hurt, my pain, my what if’s or my whys. No one told me that in order to be strong I had to hide my grief. No one told me that if I shared the tears that I wasn’t being strong; or that showing my hurt and questions would make me less of an advocate for my daughter and my family. Truth is, I told myself that. I told myself that in order to be strong I had to hide the emotions that could potentially cause me to look weak; that could cause me to be judged; that could possibly cause people to question the love I have my for daughter. Looking back at the NICU journey I realize the moments Arrow was the strongest, the moments Arrow grew the most with her feeding pathways, were the days that I let go, the days I allowed the tears to fall as I held her and allowed myself to just be with her, feeling all the feelings… feeling the fear, the worries, the concerns, the pain and most of all the LOVE.
The truth is, as much as I have grief, worries, doubts and questions, I have more LOVE than any of that. It’s my LOVE for her that causes me to speak out, to share our journey, to advocate and have a voice… it’s because of my LOVE for her that I will SHOUT HER WORTH by sharing in authenticity; by sharing so others will know the feelings are natural, but the journey is worth every moment, worth every tear, every heartache, every delayed milestone and just worth every single moment. It’s because I LOVE her I am learning strength doesn’t mean not being real with emotions, but instead true strength comes from laying it all down at His feet; sitting in full surrender and complete gratitude for the gift of this journey, for the gift of my beautiful Arrow. I am learning that LOVE is a strength all of its own; with the power to accomplish more than I could ever imagine.
Twelve months. One year. 365 days. It's been that long since my last post. One year ago I wrote about struggling with comparison, with my faith, with my whys and being ready to embrace my journey, embrace where God has me and to claim back my joy. It’s been a long twelve months. It’s not been twelve months of letting go of comparison, of strengthening my faith, of letting go of the whys, of embracing my journey and where God has me or claiming back my joy. Instead, it’s been quite the opposite. I have gone deeper into my struggle of comparison, my faith has been shattered and my whys have only grown with no answers. Instead of joy I have found myself filled with sadness, bitterness and anger. I looked in the mirror a few months ago only to not recognize who I saw looking back at me… the reflection was a stranger.
As I stood staring in the mirror at the stranger in front of me, I broke. Where had I gone? Why I had allowed the last year or more crush me? To break me? Why have I stuffed every negative emotion down? Why have I not spoken with friends about my feelings? Why have I not been honest with my friends, Aaron or myself about how much my heart hurts, about how hard this has been? Why have I not spoken to my friends about my shattered faith? Sought help to repair my faith so I could return to trusting and knowing God has a plan, rather than wondering why I feel forsaken and left behind. Why have I not sat at my computer and written, been transparent, authentic and real about my feelings, my emotions, my journey?
It was here, in this moment, I realized I was afraid; filled with fear. Afraid of being real, authentic and transparent. I was afraid that if people knew what was truly going on inside me they would judge. I had spent the last two years being brave and being strong; what would people thing to know how much this journey hurts? How much it has made me question my faith? What would people think if they knew how weak I truly was during this journey? What if my authenticity offended someone? What if my being real, honest and transparent caused someone to be mad, or judge or feel attacked? I realized in this moment of staring at a stranger in the mirror, that I had become a woman of fear rather than a woman of faith. I allowed fear and to take everything from me over the last almost two years.
The reality is people who know me, who know my heart, know my intent. They know my intent in sharing my journey is not to offend, not to make others questions their actions, but instead to be real about mine; to share mine in hopes that maybe, just maybe, my story, my words can minister to another. Maybe my story ministers to another woman being told similar facts about her pregnancy; or to the mom who was just told her baby has Down Syndrome; or to the woman who is feeling grief from learning her child will be differently abled; or maybe to the family member of a woman in a situation like mine who needs to know how to love and minister to her during this time. My intent is not to offend, but to be real, to heal and to share my journey to honor God and how faithful He has been despite all my questions and anger.
I sit here now, at my computer due to the encouragement of a few people dear to me (thank you Aaron and Marilu). They spoke truth to me. They reminded me my writing is me. My writing is my home, my healing and where I am called. They reminded me to share my journey with you; with those who choose to read; with those who choose to come along and share the journey. So here I am here to be real, authentic and transparent. I am hear to share the good, the bad, the ugly with you. My writing will not be perfect. I will have grammar errors, run on sentences and improper punctuation; but I will also have truth, honesty and my writing will be me. It will be from my heart. It will be real. Some days it will be raw and other days it will be filled with laughter.
It’s as I sit here now, writing I see I was beautifully broken so He can piece me back together… it’s time to surrender my hurt, my whys, my anger, my bitterness and my questions. It’s time to be honest, to be real and not stop worrying what people with think about me if I am honest about this journey. It’s time for me to not live for the approval of those around me, but for His. In the midst of the storm, He has not forgotten me. He has been with me all along. It’s me who ran away and He is waiting with His arms open wide to embrace me; to hold me and tell me I am His, Arrow is His and He is enough for us both.
With that… I will be writing again. I will be open, sharing my journey of healing… because I am in the midst of being put back together; not as I was before, but in a better version of myself. I will never be who I was prior to this journey, but that’s the beauty of it all… this journey, has changed me, and will continue to change me, but if I allow it, this journey will change me for the better. This journey, will open doors I never imagined, bring people to my life I wouldn’t have known otherwise… this journey will refine me, grow me and mature me. This journey will open my eyes and take me on a path I never imagined. This journey will be my life… and a beautiful life it will be.
Comparison is defined as the act or instance of comparing. This definition makes this word seem benign and harmless. For many comparison may be harmless, even motivating. However, for me, this word is a silent killer, a thief to be exact. I have spent much of my life living in the land of comparison. I made it through high school comparing myself to other girls, my grades to those around me, my after high school goals to my peers. I spent my twenties comparing my life to those around me because I had my son at 19 while all my friends were in college; my daughter at 23 when my friends were beginning their careers; married at 24 and my second son at 26 only to be divorced at 28. I saw this piece of my life as less than others- compared to my friends who went to college, got married and started having babies, or compared to my friends who married shortly after high school and had babies but were able to homeschool and be stay at home moms while I had to work full time. While my life has always been full, full of love, laughter, hope and perseverance, it has also been full of comparison which lead to discontentment.
I have always known I struggle with comparison. I have always tried to turn this over to God and have even done bible studies on contentment. Comparison appears to be the thorn in my side. Some seasons it’s not as bothersome. Some seasons I am able to rationalize life and where I am. I am able to sit in my faith and remind myself that I don’t need to compare my life to those around me, I don’t need to compare my finances, my house, my car, my career, my education, my dreams, my writing, my children, my anything to anyone else. Some seasons I am able to be content. I am able to remember that life is not about living in the world; it’s not about keeping up with those around me, but instead about living the life God has called me to live.
Sadly, I am not in the season of contentment. Instead I am in a storm of comparison. I have been in this storm for roughly the last ten months. My pregnancy didn’t go as planned - it wasn’t like the women around me who were pregnant at the same time. My pregnancy was filled with fear, worry and anxiety. Their pregnancies were filled with excitement, joy and peace. My pregnancy was filled with many questions of why. Their pregnancies were filled with statements of thanks. My delivery didn’t go as planned. I was induced. I had a c-section. I didn’t get to hold my daughter until several hours after she was born. I didn’t get to have my daughter in my hospital room with me. I didn’t get to take her home when I left the hospital. I had to leave her, in the NICU, alone, without me. I had to go home, sleep in a house with my daughter a 20 minute drive from me. I spent 26 days this way while my daughter was in the NICU. I didn’t get to put my daughter to my breast to nurse till she was 5.5 weeks old. I spent 5.5 weeks pumping every three hours 24 hours a day. The other women around me - delivered as they planned, held their baby right away, had their baby in their hospital room with them, fed their baby as they planned, took their baby home with them and rejoiced in delivering the baby they had dreamt of. Don’t get me wrong - I rejoiced in the birth of my daughter; after all, she arrived healthy, strong and most importantly alive. It was with her delivery, with the miracles of her healed heart that I began to realize it was time to process her diagnosis of Down Syndrome.
I spent my whole pregnancy worrying if she was going to make it here alive. If I was going to get to hold her, to love her, to nurse her, to snuggle her, to feel her against me, to listen to her breathe, to hear her coo and laugh and if I would get to see her grow. Given all this, I didn’t process her diagnosis. I didn’t take the time to grieve the loss of they baby I had dreamt of having and in turn accepting the baby I was having. I know this sounds terrible. I don’t mean it that way. It’s simple though. One dreams of a healthy baby upon hearing they are pregnant. One plans for a neurotypical baby and dreams of all this baby will accomplish as they grow. I just spent my pregnancy praying she would survive, so when Arrow arrived, it has been five months of processing her diagnosis, of grieving what she won’t have. It’s been five months of comparing her to babies around me and seeing where she is “behind”. I find myself worrying about how behind she is; wondering what others will think; what family members will think when she is developmentally behind her cousin whose twelve days older. I see how much harder she has to work to reach her milestones and my heart breaks. I feel guilty for grieving. I feel guilty for comparing her to others. I feel guilty for having trouble accepting her diagnosis.
I love her. I couldn’t love her more. I see her face and my heart melts. I hear her laugh and and see her smile and my heart swells. I watch my children with her and I know she was meant for us. I know God makes no mistakes. I know He has His hand on her and on us. I know He blessed me with her for a reason and is using this season to refine me, to bring me closer to Him. He is using my weakness of comparison to show me His truth and He is using my daughter to teach me the deeper meaning of love.
I wouldn’t trade Arrow for a thousand neurotypical babies. I wouldn’t trade my journey for a thousand typical ones. I love Arrow. I love all of her. Every inch. Every 47 chromosomes. I just need to find peace in this journey. I need to find contentment in this journey. My head knows life will be fuller and richer, my heart grieves. When will this end? When will I simply be at peace? When will I stop comparing and start embracing? When will I find more joy in the journey rather than more why me? When will I stop having theological questions about this filling my head? When will my faith be more solid again? When will I stop questioning God about why?
In the midst of all my questions, I keep reflecting on a quote Arrow’s occupational therapist shared with me upon first meeting her. It’s simple, yet profound. She said “comparison is the thief of joy.” How there is such truth in this statement. I am ready for the thief to be captured and joy to be returned. I am ready to find peace and to embrace this journey. I am ready to be bold for my daughter. I am ready to stop asking why me and instead start saying thank you. I am ready to stop crying tears of grief and instead cry tears of joy and thanks. I am ready to claim back joy, to fully turn over my lifelong issues of comparison to the Lord and enjoy where He has me. I am ready to embrace the journey God has given me, using it to refine myself, to share His goodness and faithfulness and see what amazing places it takes me. I am ready to wrap my arms around my daughter and only feel love, joy and peace with no ounce of grief or comparison. I am ready to just live in thanks; thanks that beautiful Arrow has been added to my family, that I get the honor to be her mom, to raise her and love her and watch her be a world changer.
Currently, I am working on documenting our time in the NICU in a way that reflects the journey and emotions without using tons of words. In a way that shares my feelings and emotions while also sharing Aaron’s. While I work on documenting our NICU journey to share, I am going to jump ahead to the now, to where we are currently, how Arrow is doing and the emotions that have come along. I apologize in advance for jumping ahead to current without sharing the inbetween, without going in chronological order, but there is much to share currently, that if I don’t share this way, I may never get to sharing. I ask you bear with me and understand the jump in time, the lack of chronological order that is occurring and continue to share this journey. With that said, it’s time to share what’s been heavy on my heart.
Arrow. How I love this precious angel. She is four and a half months now and in that time she has begun to grow my heart in ways I didn’t realize I needed to have it grown. The emotional rollercoaster I experienced during pregnancy hasn’t ended, but rather is different, and filled with more moments of joy than of worry or sadness. I will be honest though, there are still many moments of tears and of grief. I love Arrow. I love everything about her, from the way she smells to her smile, her laughter, her snuggles and her bright eyes. I hold her and my heart swells in a love I didn’t know I could have. I love each of my kids; I love them with more love than I ever knew i could carry, but the love for Arrow is different given the fight to get her here. The love for Arrow is different because it is mixed with grief and sadness.
One night, not too long ago, I was holding Arrow as she slept in my arms. I looked down at her sweet chubby face as I carried her to her cradle and my heart swelled with love for her. As I looked at her feeling such love, tears suddenly streamed down my face. As I stood in front of her cradle to lay her down, my heart ached. I kissed her head telling her I was sorry she will never get to experience this kind of love, that she will never get to know what it feels like to hold her baby in her arms, to know how much love can flow from her heart to that of her child. As i held her I continued to sob. As I sobbed I cried out to God asking “WHY?!” As I continued to cry out asking why, I laid Arrow in her cradle, covered in with her blankets, kissed her forehead and told her I loved her. I then sat next to her cradle, feeling the grief and the sense of loss, allowing the tears to continue to flow, and prayed. It wasn’t until this moment that I realized how much my heart would hurt to think I will never hold a grandbaby from Arrow, that my daughter will never get to experience being a mom, to experience how much she is capable of loving.
Even now, I feel angry and grief that she will never get to know these feelings. I feel angry and sad that Arrow may instead know a feeling of an unfulfilled desire; that her heart may hurt over a desire to be a mom. Given this, I pray that she grows up to not have the desire to have kids, but instead to travel the world, to be a world changer and to be the best auntie. Should she grow up to have a desire to be a mom, to hold her own baby in her arms, to experience the joy of motherhood and the love of being a mom, I don’t know how I’ll help her process the fact this isn’t an option for her. I do know that I will help her proces it though, I do know I will walk every part of this journey with her; I will cry when she cries, I will laugh when she laughs, I will love when she loves, I will be angry when she is angry. She will not walk her journey alone. She will walk her journey with me every step of the way. Granted, that may not always be with me right by her side, as I will raise her to have wings, to spread her wings and soar, but I will always be right behind her. I will alway be her home, her safe place to land - just like I am for my other kids.
I don’t know how long my heart will hurt for her right now.I don’t know how long I will feel grief about the loss of the opportunity for her to have children, for her and for myself. Even though I have had three children, I never knew that I would feel such love for a child; love filled with joy and yet sadness at the same time. I look at Arrow, I see her smile, her blue eyes, I hear her laughter and my heart beams and my heart aches. My heart beams for all the miracles in her life; for how much I love her; for how she just lights up a room and completes our family. My heart aches for so much that I have trouble putting into words. It aches over the fact she can’t have kids when she grows; for the fact she has to work twice as hard as other kids to hold her head up, to roll over, to sit up… to do anything. My heart aches that people will judge her before they know her; that there are people who feel her life doesn’t have value and worth.
Over the four and a half months since Arrow has joined us not only have I been grieving the realization of Arrow not being able to have kids, but I have found myself struggling when I see others with healthy typical babies. Babies that are meeting their milestones on time. Babies who will get the option to have babies when they are grown. Babies that don’t have to be screened yearly for high risk health conditions. Healthy, neurotypical babies. Don’t get me wrong, I love Arrow. I wouldn’t trade her for the world, but I would be lying if i didn’t say that I don’t struggle; that I get angry with others with typical babies take them for granted; when they compare their babies’ development to that of Arrow’s. Sometimes I just get angry that they got the baby they planned on when they found out they were pregnant and yet I didn’t. I instead took a detour. It may be a beautiful detour, filled with people I would never have meant otherwise, filled with joy, and love and growth that I never would have experienced on the other path. Regardless, there is still a season of mourning, of grief, of sorrow. It’s season that no one talks about because what would others think? I sound like a horrible mom. I sound like I don’t love her, but that couldn’t be farther from the truth. I have found a love I didn’t know existed. I have found pieces of me I didn’t know I had. As I process the various forms of grief, I keep finding peace in knowing that God blessed me with her for a reason; that God doesn’t make mistakes even when I don’t understand the path. I find peace in knowing that He is using Arrow for His plan and He is using me with her for His plan. He has gifted me with the desire to write, and He is telling me to be bold, to step out and share; to share my heart, the good, the bad, the real, authentic journey. He is calling me to be my daughter’s advocate, to stand strong with a silent strength, to share her journey, our journey and in the midst to point to His glories in our lives.
I am to feel the grief, the sorrow and the sadness. I am to feel the emotions, to process them not remain in them, and I am to use to speak out and to reach out. I am not alone in this. I am not the only mom to process these emotions. If you’re reading this and you are on a similar journey, feeling similar emotions - know you’re not alone; know those feelings are natural and they mean you’re human, you’re normal. I’m learning the emotions will heal, and they will change. The sense of loss I feel with slowly leave me and it will be replaced with thankfulness; after all, God entrusted me with Arrow. He entrusted me with a child who needs more… and He believed in me to be her mom, to meet her needs… and if you are on this journey with us, He entrusted you to be part of her journey, of her life and He believed in you as well. Together, we can walk the journey before us of Jesus Praising and Arrow raising.
It’s been three months since Arrow blessed us with her early arrival. Six weeks since I have written, sharing our NICU journey. Two months since she came came home and five weeks since I have returned to work. In those six weeks that I have written, I keep thinking of writing. I keep wanting to sit down and share our 26 days at the NICU, wanting to write it so I will never forget those days, never forget the joy of being with her mixed with grief, worry, concern and exhaustion. I haven’t written because when I think of writing about it all, I realize I will never forget those 26 days, that I am still processing the emotions of those days, the emotions of her diagnosis of Down Syndrome and processing the miracles God keeps blessing our family with. I tell myself to sit down and write, to share the NICU journey, to write about the days in Swedish, the feelings of leaving her each night, the joys of her meeting goals, the hardships of taking steps backward with goals, the amazing nurses who walked the emotions with me, the time away from my other family and how my incredible daughter Aysa walked the journey with me, spending every available moment with me at Swedish. I keep telling myself to share the journey, to share the miracle of her heart…. But then I am stopped. I am stopped because to share this journey is to relive every heart wrenching moment again, is to be raw and real about how much it hurt, how much fear was mixed with the joy and to fully remove the mask of strength that I try to carry and thus allow people to see the other side of me.
This is a huge fight with God and me. I know my blog is to share Arrow’s story - to be truthful and authentic about our journey and what God is doing in us, thru us and more importantly thru Arrow. I fight with God about writing and sharing because some of my feelings may not gain a good response from others, because I am worried what people will think if they really knew how this journey feels; or people will feel sorry for me and that isn’t what I want because there is no reason to feel sorry for me or for us or even Arrow. The feelings are all part of the journey, part of the growth, part of His plan for me. I remind myself that when I feel broken and lost right now, that God is doing a great work in me and He isn’t done yet; that God is working on me and in me because He has a plan with my story and will use my story, use Arrow’s story to reach others, to minister to others… and all the while minister to my very own heart. God is using my story, my beautifully broken self to speak to others… how He will use this all is unseen, but I know I must first stop fighting, step out in faith, daily, and continue to share. I must stop my excuses of no time, bad lay out on my blog site, being an amatuer writer and the millions of other reasons I come up with to not write, to not share, but to instead hide and stay in my safe bubble. No more… I am teaching my daughter Aysa to be bold, to shine a light, to persevere, to honor God even in the mundane; I am pushing Arrow in her exercises to develop and be strong. I too need to be bold, to shine a light, to persevere, to honor God in the mundane, to push myself to develop and be strong… I must be an example for my daughters to emulate …. And that starts here… with sharing the details of our journey consistently, with being honest and raw about my feelings, the good, the bad and the inbetween.
As I sit here writing, I think of Arrow’s sweet face, her presence in my life and know I am not meant to keep her to myself. I know she is here to have her story shared; to share how her presence is changing and shaping me; to share how God is using her to refine me, to strengthen me and feel deeply into emotions I have buried and now face them and heal them. I am to share how her presence has grown my family and has shown me where I need to grow in areas of contentment, comparison, trust and in my faith.
With that said, I will be pushing myself to write consistently, to share our 26 days in the NICU, to share the good, the bad, the ups, the downs and the mundane of our journey. I will be real, authentic and raw with our journey and my feelings. I will not write to please others, to gain compliments or to tickle the ears of those who read what I share, but instead I will write to be real, to honor what God calls me to share, the reality of my feelings and journey and to share my daughter with those who wish to join me in this journey.
As I laid in the hospital bed, contractions coming at regular and frequent intervals, waiting for my parents to first arrive, I just kept singing “Just Be Held” by Casting Crowns in my head. This song ran through my head during my amniocentesis months prior and again now, when I felt alone, my faith wanting to waiver. It was my reminder that while physically it may appear I was alone, I truly wasn’t as my Heavenly Father was right there with me, holding me, comforting me and telling me everything was going to fall into place. While I laid there, finding a peace in this process amidst the chaos and unknown, my parents entered my room. There has never been a time when I had felt happier to see the faces of my mom and dad. My heart lept from my chest with joy - they had finally arrived, I was no longer physically alone. I had people to breathe through contractions with me, I have people to laugh with, cry with and just share this unknown delivery with.
My parents immediately sat down next to my hospital bed, mom taking my hand in hers. I immediately relaxed. I shared with them I had started the induction, the painfulness of the procedure and that contractions had been constant since they completed the induction, and were about ten minutes apart. I laid in bed, continuing with contractions and talking with my parents. They shared with me my brother Jared happened to be in Seattle that day and would be finishing his meeting and coming to be with me for the delivery. It began to feel as if despite the chaos and quickness in getting induced and reaching out to family, everything was beginning to fall into place. Aaron, Zion and Aysa just needed to arrive now. In between contractions, while I waited for the final three people I needed to be by my side, I texted Riah in Oklahoma to notify him his sister would be arriving and asking for him to cover us in prayer.
Two hours after my parents arrived Aaron, Zion and Aysa walked through the doors. Complete calmness finally came over me as the people I needed most to get through this delivery had arrived. Aaron stood back while he allowed the kids to come next to me, hug me and for me to tell them I love them. After I had hugged the kids, Aaron came over to me, hugged me, kissed me and inquired how I was doing. I shared with him about the induction and that contractions were about 8 minutes apart and getting stronger. Shortly after his arrival, Aaron walked the hallway with me to assist in getting labor moving more; he held my hand, he told me about his morning, he breathed with me when contractions came; this was the beginning of him not leaving my side as the worry and concern was easily seen when looking at his eyes.
About 6:00 p.m. , not long after my brother Jared arrived, Dr. Harding came on shift. He arrived in my room to touch base with me, see how I was doing, introduce the resident who was working with him and share with me the plan for the evening. At this point, we would allow the contractions to continue to increase, waiting for the dilator to fall out, which would tell us we were at 3 cm. Baby would continued to be monitored. At this point it appeared Arrow was handling labor well, although she’d had a couple drops in her heart rate.
Hours had passed, nurses came into check on me, when suddenly I felt a strange feeling.
“Um, I think maybe my water broke, dilator is coming out or something. I don’t know.”
The two nurses who were in the room, Alix and Hazel, and my mom came to my bed. They pulled back the blankets, pulled back the lovely hospital underwear they had me in, and saw a large amount of blood on the maxi pad they had placed in the underwear. Calmy Hazel told me not to worry, that was my mucus plug coming out and this meant labor was progressing well. I looked at my mom, this didn’t seem correct, after all, when I lost my mucus plug with my prior kids, it was light pink and not bright red like period blood nor in such a large of an amount. I decided that if the nurses weren’t worried, I was not going to worry; that I would trust them.
Not long after losing my mucus plug, I had to use the restroom. Hazel informed me that while I was in the restroom, I could try tugging on the dilator that was attached to my leg; if it was ready to fall out a slight tug would just assist it in coming out. I did as I was told. The dilator came out instantly, along with large amounts of blood. I immediately called for my mom. I needed her to help me, as I couldn’t clean all the blood off my legs while, holding the fetal monitors on me and keeping my gown up and having contractions. While the sight of all the blood frightened me, I was thankful the dilator came out as this meant I was 3 cm dilated.
Labor continued on for hours. Arrow’s heart would only allow me to lay on my left or right sides. I could not lay on my back or be out of bed on the round ball laboring as if I was Arrow’s heart rate would drop. My contractions were getting stronger and closer together. Aaron remained by my side the whole time, holding my hand and breathing with me through each contraction. I would look at him while breathing and see how tired he was, but he wouldn’t take a break from coaching me when my mom would offer. He took me to the bathroom the two more times I had to go, each time helping in cleaning up large amounts of blood that would run down my legs as we walked to the bathroom and was all over me and the toilet. We inquired with Hazel about the amount of blood and clots when I used the restroom. She told us we shouldn’t be concerned unless there was a lot of clots and what appears to be an excessive amount of blood. We agreed we would show her the next time I used the restroom. Each time I used the restroom I tried not to panic. I never bled like this when in labor with my other kids. The amount of blood and size of the clots, didn’t seem to be normal; didn’t seem it could be due to nicking the placenta when inserting the dilator to induce labor, but again I would trust my nurse.
The contractions were about a minute and a half apart and a minute long and had been this way for some time. Hazel agreed they could give me a shot of fentanyl to ease the contractions and provide me a break to allow me to have energy when the time came for delivery and pushing. This break in the intensity of contractions felt amazing. I held Aaron’s hand, while he laid his head on the edge of my bed and was able to rest. My contractions eased enough Aaron could take a very slight nap as I could breath through the contractions on my own.
About an hour after my pain medication was given, Dr. Harding entered my room, with the resident. They placed oxygen on me immediately explaining Arrow had stopped moving as much as they liked, although still doing well. They further explained they were going to check me again, see how I was dilated, effaced and how far baby had moved down. If we were at a good point, they were going to break my water and insert a heart monitor into Arrow’s head as they would be able to monitor her heart more accurately. They kept the oxygen on me while checking me having me take deep breaths to ensure Arrow was getting enough oxygen. The resident completed the check letting me know I was 5 cm dilated, 70 % effaced but still minus 3 which meant Arrow had not dropped any further down the birth canal. This was strange given I had been in labor since 1:00 p.m. and it was now about 4:00 a.m.
The resident left the room with me feeling defeated. The contractions were hard, long and close together and Arrow hadn’t dropped any further than she was when we started. I tried to focus on the fact I was halfway dilated and effaced almost all the way, but something didn’t seem right about her not dropping further. As I laid in the bed, on my side, trying to just remain calm, breathing through the contractions the resident returned to my room.
“Tiani, was the baby’s head down earlier?”
“Yes, she was head down at my ultrasound about noon and had been head down for the prior three weeks.”
“Okay. We are going to do another ultrasound to confirm if she is still head down.”
The resident left the room after informing me of the ultrasound, and returned moments later with the machine. My parents moved from my right side to the foot of my bed, and Aaron stood there with them. Hazel was on my left with the ultrasound monitor while the resident was on my right, running the ultrasound probe across my stomach. As the probe was placed on my stomach, it instantly became apparent Arrow’s head was no longer down. They ran the probe across my entire stomach and we instantly saw her head on my right side by my rib and her butt was down now - she had turned breech during labor. When the resident left the room to confer with Dr. Harding, we all looked at one another in silence. The unspoken concern hung in the air between us all.
Dr. Harding returned moments later explaining he wanted to perform the ultrasound himself as well to see the change in position. Again the probe was ran across my stomach, and again Arrow was found to be breech.
“Tiani, your baby has turned breech. This makes sense to me why she wasn’t dropping. I was concerned because your body was knowing what to do and the contractions were progressing in a way you should be farther along. At this point in labor, it’s unsafe for us to try to turn her. You will need to have a c-section.”
From here everything moved quickly. Hazel got Aaron his OR outfit to put on and began prepping me. I laid in my bed, watching Aaron get dressed, dad helping him cut holes to reach his pockets for the phones in order to obtain pictures. I watched Hazel get my hair cover, clean my stomach and all the while tried to remain calm as having a c-section scared me, having a spinal to numb me for the procedure frightened me.
While Aaron and I were getting prepped for the procedure, Zion and Aysa awoke. We explained to them what was going on, why and that I would be taken shortly for the procedure. Zion sat in the chair next to my bed and allowed me to hold his hand. This was how I sat until the OR nurse came to wheel me to the OR for the c-section.
Aaron and I entered the OR, where I was taken off the hospital bed, sat on the edge of the OR table to get prepped for my spinal. Aaron was seated in a chair by the door, where he watched the staff prepare for the procedure and me getting prepped and then getting the spinal. It took three tries to get the spinal in; I sat on the edge of the table, curved forward, hands on my knees, head to head with Hazel as she breathed with me and the anesthesiologist worked on getting the spinal in. Once the spinal was in they laid me on the table and began the other final preparations for the procedure. While getting me completely ready, Aaron was moved to sit by my head, and Dr. Harding entered the room to inform me that he was called in to deliver 32 week twins and Dr. Eggers would be performing my c-section.
The anesthesiologist was incredible. She talked me through what to expect as they pulled up the blue drape below my chin allowing Aaron and I not to see the procedure. As the procedure began I lay on the table, my arms stretched out, shaking, teeth chattering, which is a common response to the spinal, looking at Aaron to my left. The anesthesiologist shared with me that when they pull the baby out, I would full a lot of pressure right before, then the baby would be out and she would notify right before this occurred. Not long after she finished educating me, she let me know it was time for the pressure, then she told me the baby’s foot was out and now the baby. I panicked as she told me the baby was out for the room was silent, not filled with cries of a baby, no cries of my baby. I looked passed Aaron to where the pediatric team stood, with the isolate and saw Arrow lying on the isolate, silent while they rubbed her vigorously. Repeatedly I said to Aaron “She’s not crying. She’s not crying. Go over there. She’s not crying.” He stayed next to me, looking at where Arrow was, obviously torn on what to do - stay with me or go over to Arrow. Suddenly, amidst all the silence, I heard the sweetest sound, the small cry of my baby girl. She cried enough to let me know she was alright, she was alive and here, that she was still fighting and determined to be here. It was with this cry, Aaron moved from my side to the side of his daughter, where he was able to begin photographing her journey.
I laid on the OR table, Dr. Eggers and Resident completing the procedure, watching Aaron take pictures and thanking God Arrow was here safely. The pediatric team got Arrow cleaned up, swaddled in a blanket and a pink ‘I was born at Swedish’ hat placed on her head. As they prepared to place her in the incubator and take her to the NICU, a nurse brought her to me, placing her next to my head where I got to see her face to face for the first time. I couldn’t hold her, but I could touch her, I could look at her bright eyes, her tongue sticking out of her mouth and say hello, telling her I love her.
Aaron left with the pediatric team to take Arrow to the NICU, although this was not easy for him. As he left the OR, he continued to look back at me, laying on the table, now alone again, getting stitched back up. He told me he loved me and I told him I loved him and I was okay so to go with Arrow and that I would be alright. It was not long after he left, that I could feel the pressure of the provider stitching me back up; a feeling that lead me to feel light headed and nauseous. I informed the anesthesiologist of this, who then provided me anti-nausea medication in my iv and held the blue vomit bag for me while I laid there, head turned to my left vomiting.
The anti-nausea medication kicked in quickly, the surgeon completed the procedure, I was cleaned up and wheeled back to my room where I saw my parents and my brother.
When I arrived back to my room, my parents told me Aaron had taken Zion and Aysa up to NICU to meet Arrow. My mom held my hand while we waited for Aaron and kids to return. When they arrived back to the room, their faces were beaming. Aaron instantly came to my side, asked how I was and then began sharing pictures with me of our beautiful daughter, Arrow Jaye Matai, who weighed 4 pounds 2.7 ounces and was 16.75 inches long.
We all talked and celebrated while we remained in the room I labored in, waiting to be moved to the postpartum room. While waiting we laughed at how after 14 hours of labor a c-section occurred because Miss. Arrow decided she wanted to arrive on her terms; we celebrated she arrived safe and healthy.
When the time finally arrived for me to be moved to the postpartum room, my family left to go get some rest, letting me know they would return later. I hugged them all good-bye sad to see them leave, but eager to get wheeled to my new room as on the way I would be detoured to NICU to see Arrow… not to hold her, as I couldn’t until my spinal wore off, which I was told would be about 4:30 that afternoon.
I entered the NICU, room 4, and my bed was wheeled next to Arrow’s bed, where she lay under lights, cords attached to her chest. I turned my head to my left, reached out my left arm and placed my left hand on the top of her tiny head, rubbing it. I gazed at her. She was here. She made it through labor and delivery; she now had another journey before her, as we had to learn about her heart, find out if she needed surgery, but for now, she rested peacefully. I stared at her in adoration; in awe; my heart flowing with such love, joy and thankfulness. While my heart was filled with joy it also ached… looking at her, only being able to touch her, not being able to hold her, hurt. I longed to hold her in my arms; to feel her against my chest, against my heart. I longed to feel her breathe, to kiss her head and to whisper in her ear “I love you.”
It’s 5:30 a.m. on Tuesday August 8, 2017. I’d showered, dressed, done my hair, make-up and was in a car, drinking my morning protein shake while I drove to my weekly appointment in Seattle at Swedish Maternal Fetal Medicine. Today was different though, I was scheduled to see Dr. Krabill prior to my slew of appointments at Swedish; I was to have the much needed echocardiogram on Arrow’s heart. As I drove to Seattle I worked hard to settle my nerves. I was afraid that after being admitted just a few days prior due to Arrow’s NST test being less than ideal, that today’s appointment may also not be positive. I blasted worship music and sang along, praising God for the works He has done and is doing; choosing to instead focus my heart on Him rather than on my fears.
I arrived to Seattle with time to take a small walk down the block to Starbucks, treating myself to a Vanilla Soy Chai Latte (my favorite) and a slice of warm pumpkin bread. I sat in the lobby of the medical building for Dr. Krabill, savoring the amazing flavors of my drink and treat while I read my book, with no knowledge of what my day would hold. Soon it was time to check in for my appointment, and I took my relaxing moment to the waiting room of Dr. Krabill’s office. Upon arrival to check-in, I was informed the clinic still had not received my referral from my health insurance. I contacted my health insurance to inquire on the status, explaining to them the urgency and requesting a stat approval. The insurance company said they would place an urgent request to my authorization that was in nurse review for medical necessity, and would call me back. 45 long minutes later insurance contacted me, notifying me the authorization had been approved for one echocardiogram. Unfortunately, it was already too late for me to have my appointment at my originally scheduled time; thankfully the office was lovely and rescheduled my appointment to occur after my tests down at Maternal Fetal Medicine.
I took a deep breath as I walked down to the elevators. I felt frustrated by the delay of my insurance company; I felt frustrated that today was already going to be a long, stressful day and now it was going to be longer. The benefit of the echocardiogram prior to my appointments was the providers I was to be seeing would have been able to also review the results to aid in their decision making with next steps if necessary. Now I would simply have my usual slew of appointments and then find out how the echocardiogram results may change their course of care either via phone call or at my Friday appointment.
I laid on the exam bed, listening to Arrow’s heartbeat - the twice a week NST. The sound of her heart was so lovely to me; it’s amazing how a sound so beautiful was also the major piece of concern for her health. I laid there, listening, praying. Thankfully the NST Tech was able to tell me the NST looked good; Arrow was moving much more how they like to see. The Tech then unhooked me, walked me down the hall to the ultrasound room for the ultrasound to check Arrow’s dopplers (blood flow). I took a deep breath as I crawled up on the exam table in the ultrasound room and said another prayer. The Ultrasound Tech began checking all the dopplers, checking Arrow’s heart and taking her measurements. As usual the Tech left the room to review the images with the provider to ensure they had all the images they needed, only this time she said to me “There is an increased restriction so I need to ensure the doctor doesn’t want additional images.” My heart sank - another restriction. I laid in the dark room, hand on my belly, numb.
The Tech returned letting me know no additional images were needed and she could walk me to the next exam room where I would meet with the provider. I entered the exam room, sat in my seat under the window and stared blankly at the door waiting for the provider. I didn’t have to wait long when Carolyn Ward, ARNP entered my room.
“Tiani, I know you weren’t scheduled to see me, but the other provider is behind schedule so I said I could see you.”
She pulled up a stool, sitting it directly in front of me, looked me in the eyes, and said “there have been some changes with the baby.”
“I know. The tech told me there was an additional restriction.”
“That’s kind of correct. The restriction is actually a reversal of her blood flow. She also hasn’t grown like we like. She is now in the one percentile with only a growth of four ounces in two weeks.”
“Okay.” I didn’t know what else to say. My eyes were welling with tears as much as I was trying to remain strong.
“Tiani, we need to deliver her. Let me step out and see if we are going to have you stay tonight on antepartum with an induction tomorrow, or if we are going to take you to labor and delivery with an induction today.”
I sat in the exam room, phone in my hand, ready to text Aaron when Carolyn returned to my room. She had left and returned in such a quick manner I didn’t even have time to unlock my phone to message Aaron.
“Tiani a nurse will walk you over to labor and delivery now and we will begin your induction and you will be having your baby.”
Carolyn hugged me as she handed me over to the nurse who would walk me to labor and delivery. I was numb as we walked the five minute walk through the building from Maternal Fetal Medicine to Labor and Delivery. My mind was racing… I needed to get a hold of Aaron to get kids and get down here. I needed to contact mom and dad to have them come now since they are in Seattle so I am not alone. I needed to get ahold of work to notify them I will be out on maternity leave effective now. The list of what I needed to do kept me from fully feeling my fear of delivering my daughter at 35 weeks.
As I entered the Labor and Delivery wing of Swedish Medical Center, a nurse, Alix, poked her head out of a room and said “You must be the one I’m getting the room ready for. Come on in.” I entered the room, noticing the gown on the bed as the nurse told me to to change my clothes, get the gown on and she will then begin my vitals while we wait for the doctors to come speak with me about how they will begin the induction. I changed my clothes, got into my gown, laid in the hospital bed and then inquired if I would be able to take a few moments to message my family to get them en route to the hospital. I messaged Aaron, my parents, work and my brothers between Alix taking my vitals, starting my iv and the providers coming into the room to speak with me about the course of the induction. It was chaotic and everything was moving so fast; I had no time to fully process what was happening and within 45 minutes of being told I would be delivering my baby, I was in the hospital room, changed and beginning the induction while Aaron was still two hours north and my parents 45 minutes from being with me. I was going to begin the induction alone, contractions could start and I would be alone… in this moment I chose to not be afraid, I chose to trust, after all what other choice did I have? Being afraid would change the situation or make any of it better. Trusting was about hope, and the whole journey with Arrow had been about trust and hope. There was a reason the providers were moving quickly on starting the induction. They wanted the best outcome for my baby; this meant me being alone for the start of the induction. I needed to find peace with this, for waiting to have my family with me but risk a less than desired outcome would not be worth it. I had to be strong, stand in faith and know my family would be there as soon as they could join.
Strength and standing in faith sounded great in my head while I listened to the provider tell me how they decided to induce my labor - a cervical balloon dilator. She explained a catheter would be inserted up to my cervix where it would be placed and the balloon filled to keep it in place. The pressure of the catheter balloon against the cervix would cause contractions to begin, and the catheter would fall out once the cervix was dilated to 3 cm. If no progress of dilating after 12 hours, pitocin would then be given to assist in contractions.
This all sounded reasonable, until the provider asked me if I needed pain medication prior to them inserting the cervical dilator. The provider asked me how my exam upstairs went to determine if I needed pain medication. I explained it was like every other time I had to be checked to see if I was dialated or effaced (for the record I was not dilated or effaced and baby was -3 at this point). We agreed then I should be alright with no pain medication would begin the insertion. The provider reclined the bed so I was slighting my head slightly upside down; the nurse took my head saying “I will be your nurse and your mom right now.”
I tried to be strong. I tried to breath deep and relax while they inserted the cervical dilator, but I have never felt such intense pain. Tears streamed down my cheeks, I told them it was hurting. They agreed to stop, apologized but said they have to ensure it’s right up against the cervix, so maybe pain medication would be beneficial after all. I agreed. They gave me a pain medication in my iv and then resumed the insertion. This time, I still had to breath deep, focus on a spot on the ceiling and tears still fell, as the pain medication alleviated the intensity of the pain, but didn’t remove the pain.
Once completed, the bed was raised back up, I was covered up with blankets, informed I could feel crampy, and contractions could take a bit of time to start. The provider said she would monitor contractions from the nurses station and will check in on me later. The nurse completed hooking up the fetal monitors while I laid in bed, wiping my tears and feeling the contractions begin all while waiting for my family.
Strength and standing in faith… the induction hurt, my strength felt weak but I continued to hold on to my faith. I kept reminding myself “faith over fear” even in this moment. I chose not to fear the upcoming process, fear if Aaron would make it, fear if Arrow would be able to handle the stress of labor and delivery or any other fear that could surface. Instead, I would have faith… Aaron would arrive with the kids in time, my parents would be there soon, Arrow would arrive safely into my arms, healthy and strong.
Nothing in this pregnancy has gone as planned and that includes what was to be my final echocardiogram to check Arrow’s heart. I arrived Friday, August 4th to Dr. Krabill’s office to check in for my appointment. Unfortunately due to my health insurance, Kaiser Permanente, which is a managed care plan, there was not a referral received and I was unable to be seen. We decided to reschedule the appointment for the following Tuesday when I was scheduled to be back down at Swedish for my weekly appointment, and hope the referral had come through at this time.
I tried not to feel frustrated that I wasn’t going to get more answers on Arrow’s heart that day, that instead I had to wait another four days. I tried to focus on the fact that in a few short minutes I would be downstairs at Maternal Fetal Medicine for my NST and would get to hear Arrow’s heart.
I laid on the exam table bed, hooked up to monitors listening to Arrow’s heart beat. I tried to find peace and joy in this moment, only I could tell by how my NST tech was watching the monitor Arrow was not moving as much as they desired. The tech had me drink cold apple juice, still Arrow’s heart rate would not increase the 15 beats they desired for the 15 seconds they desired. It would increase close to 15 beats but never the 15 seconds. The tech then tried using sounds to get Arrow’s heart to increase; again her heart rate would not increase the desired beats and duration they wanted/needed. After a 40 minute NST (they are to be 20 minutes) the tech decided to end the NST, have the provider review the results and decide next steps.
I walked the office hallway to the exam room for my appointment with Dr. Tran trying not to panic, trying not to worry and trying to just trust God in this process. I sat in the exam room waiting for Dr. Tran, hand on my stomach just praying; praying Arrow was okay, that she would be strong and continue to fight. Dr. Tran entered to the room, sat in front of me and said “Your NST is not giving us the results we desire. We don’t see baby moving at the rate and duration that would tell us she is ok. Given this, I tend to err to the side of caution so we have two options. Option one, we admit you to antepartum and monitor her for 24 hours, if she performs well you go home tomorrow. If she doesn’t perform well, we keep you admitted to antepartum, or as we then call it, baby jail, until she can be delivered or performs well. Option two, you drive home, have an NST at your local hospital and if the results are not favorable we transport you to Swedish and place you on baby jail.”
After discussing the two options in more depth with Dr. Tran, we mutually agreed the best decision was for me to be admitted from there to Swedish. I fought back tears as I texted Aaron telling him I was being admitted to be monitored. Everything moved quickly in terms of speaking with the doctor, being walked over to Swedish antepartum and then admitted to my room that I didn’t have time to call Aaron until I was settled in my room. Once I was settled in I was able to call him, explain in more detail why I was being monitored, what we needed to do with kids and to coordinate him coming down to stay with me.
It was hours until Aaron was able to make it down as we agreed he didn’t need to leave work early. I laid in my hospital bed, hooked up to fetal heart monitors, trying to read my book to distract myself and trying to fight back the tears. I was trying to keep the fear at a distance; but there were moments I couldn’t see the words on the page as my eyes watered and tears fell. As much I held to my faith and trusted God was in control, I was scared if I would lose my baby girl; if Arrow was going to be alright. I allowed myself to acknowledge these fears and worries as they were real, they were mine and denying them didn’t make them go away. As I felt them, as I cried tears, I prayed and gave my worries to God; I allowed myself to allow Him to bring me comfort and peace in the midst of the unknown.
Aaron arrived that evening about 7:00, at the same time the nurses were changing shifts. Our night time nurse would be Lynda. The moment she introduced herself to me I knew there was a reason she was our nurse, a reason beyond the fact that her schedule forced her to be our nurse. At that time I had no idea what it was, but there was a connection with her that couldn’t be explained; as she spoke to me, as she checked my vitals, I found myself finally being able to relax and just know that God was in control just like He was at Tuesday’s appointment when all results were good.
Later that evening I learned why she was our nurse and saw again how God works. Many would call it coincidence, and I won’t argue that, but for me, I know this was God working. Lynda entered the room to check my vitals and remove the heart monitor for the evening to allow me to sleep comfortably given Arrow’s heart rate and movements were looking good since I had arrived to antepartum. While Lynda was doing her job she was speaking with Aaron and me about how she was to run a 5k the following morning when she gets off work. We inquired what the 5k was for, to which is explained the race was to raise money for ultrasound machines for pregnancy clinics. She explained further there are studies that show if a woman sees her baby in ultrasound the rate of termination decreases and this is a passion of hers. Hearing this caused me to share with her a piece of our journey; I shared with Lynda that Arrow has Down Syndrome; that just today an article was released stating that Iceland is boasting they have “eradicated” Down Syndrome 100%. I continued to share of our journey and the counseling to terminate the pregnancy once we learned of the diagnosis. Lynda had a lovely talk with us about how all people have “something”, we just know what Arrow’s something is prior to birth. She shared of her son being a healthy baby, healthy kid, but as a young adult is fighting depression so badly he still has to live at home, is on medication and finds life hard; she shared of her daughter, healthy baby and as teen was diagnosed with diabetes. She then asked if she could hug me; and then reached over, placed her arms around me, hugged me and she stood back up, looked at me then at Aaron, and said “I am really proud of your decision. I know it may be scary, but I am really proud. Again, we all have something and I am so proud of you two. I will keep you in my prayers.”
Peace fell upon me as she spoke those words. God knew what I needed to hear. I am not a saint because I chose life for my baby with Down Syndrome. I am not a superhero, or anyone special. I didn’t know that hearing someone was proud of our choice, rather than questioning us, would give me the peace that everything was going to be alright. I didn’t know this simple affirmation would remind me that God has plans, not my plans, but His plans. I may not understand them, but I needed to continue to trust, even if the outcome was not what my heart desired, because He will always make good from all situations, and He would continue to walk with me, carry me and help me to find joy in the midst of fear, heartache and worry.
I fell asleep that night feeling calm, knowing God was with me in this journey. Lynda may think she was just a nurse at Swedish that evening, doing her job, but what she will never know is she was the speaker of words this mama needed to hear, at the time I needed to hear them; that her words helped me to relax, to remember God was in control and that my beautiful baby girl was in good hands.
I left the hospital the next morning for home as Arrow was “performing” well and providers felt she was healthy. As we drove home, Lynda’s words continuously echoed in my head, and the peace of those words continued to fall on my heart. It was like God was telling me “Tiani I am proud of you for your choice. I am proud you listened to me and not to the naysayers. I am proud you are choosing to love her even though you don’t know what the future holds, but even now you have given her all your heart; I am proud you didn’t listen to the fears that were being spoken to you but instead stood in faith.”
Two weeks have passed since we found out the blood flow to Arrow was decreasing. Two weeks and amazingly Arrow is still in utero and growing, meaning we’ve made it to 34 weeks, almost 35 weeks. Two additional weeks is incredible and makes a huge difference. During these last two weeks we have been living Tuesdays in Seattle at Swedish Maternal Fetal Medicine and Friday’s in town having our Non-Stress Tests (NST). These two weeks have allowed me to get more organized and to feel more settled. Her cradle has clean sheets on it, her clothes are organized in her bins, the house has been deep cleaned and all we need is her changing table, but she can come home without that. The two weeks have allowed me to attend my friend’s beautiful wedding, to get to celebrate this amazing step in her journey of life. I also was able to attend my lovely baby shower where people loved on Arrow and me, and celebrated her. It was a beautiful distraction from the worry; it felt lovely to be able to celebrate her, to laugh, and plan on her arrival rather than worry about her heart, her blood flow and when she will arrive and what her journey will be post delivery. The baby shower helped show Aaron and me how many people are surrounding us in this journey, how many people are loving us, caring for us and walking this with us even if they aren’t physically next to us. It showed us how blessed we truly are even in the midst of an intimidating journey.
Last week, July 25th, at our appointment at Swedish MFM, we had our ultrasound, NST and appointment with the provider. As always, I had my hospital bag in the car all packed along with Arrow’s diaper bag, in preparation for being told I needed to be admitted. I now enter these appointments braced for negative news; I was surprised when I was told during my appointment with the provider that everything is looking good. Truly with how things have gone, I wasn’t expecting that. I was told Arrow had gained 13 ounces! That put her at 3 pounds 13 ounces! Little peanut, but we know little can still mean fierce, and well she’s been a fighter through it all, so yes she is a force to be reckoned with. Like her middle name means, she will be "VICTORIOUS". Her ultrasound looked good, good tone, movement and amniotic fluid levels and her NST looked good! This was glorious! News I was not expected to hear, but news I couldn’t have been more thankful to hear! She was growing and gaining… music to my ears!
The day only got better because I got to pick up my oldest son, Zion, from the airport that night as he was arriving home from Germany! It was one of the best days I’d had in a few weeks - I got good news on Arrow and I got to squeeze Zion, have him back state side and know I will have at least 2 of my 3 kids with me when Arrow arrives. The importance of the kids home may seem strange to some, but the kids and I have always been a team; we have always tackled the good and bad, the ups and downs of life, together as a team. As a team we have a strength that gets us through anything; and while I am their mom, they give me a strength at times that I can’t explain. During this pregnancy journey they have spoken God’s truths to me many times and just been a strength by me simply watching their strength and excitement. While I know I could deliver and be okay with whatever occurred following without them, I know it’s a journey we all want to walk together, we want to support and love one another every step of the way; and they have showed Aaron a love and strength through this as well, they have showed him how we are a team, and just had him join our team. The kids text me prior to appointments they are praying for me and they love me; they check in on Aaron and how he is doing as we learn different news. So yes - having Zion arrive home from Germany on the day we learned Arrow was growing and gaining was just an added blessing! It was exactly what this mama’s heart needed to continue on this path.
Tuesday August 1 - my weekly appointment at Swedish MFM. Arrow performed lovely on her NST, good movement and good heart accelerations. Then I met with the provider, Carolyn Ward ARNP. She informed me that Arrow’s NST looked great, Arrow scored a perfect 8 out of 8 on her ultrasound regarding movement and tone; and amniotic fluid levels look good. Then came the bad news - the blood flow from the placenta to Arrow has restricted more. Good news- the blood flow is not absent nor has it reversed; it has simply continued to restrict. Also a positive, Arrow’s belly measurements are good and apparently they watch her belly growth as that could be sign of something negative occurring, and those measurements are remaining good even with the restricted blood flow. What does the increased restriction mean? Increased monitoring - meaning Friday I have to been seen in Seattle, and not just for an NST, but for an ultrasound to check blood flow and another appointment with the doctor. They have to monitor more closely because this change increases my risk of a stillbirth, and we are working hard to avoid that; we are working hard with monitoring to get Arrow as far along as we can, ideally not premature. It’s a delicate balance. It’s nerve wracking on the days I am not being monitored because I am to track her kick counts; and I worry if I miss something at the next appointment we won’t find her heartbeat.
Today - today I travel to Seattle. Today I have my additional ultrasound, my appointment with Dr. Krabill for another echocardiogram on Arrow’s heart, an appointment with a provider at Swedish and another NST. Could today be the day I am told they are admitting us? Could today be the day they decide not to admit but instead to set a date to deliver? Could today be like every other appointment, stating looks good see you Tuesday? I guess within hours we will find out. The beauty is I get to see her again, I get to look at beautiful Arrow on the ultrasound screen, I get to listen to her heartbeat… the silver lining in the unknown journey. Today is another day for God to how his miracles. I know to many it may not look like God is showing Himself, but He is. The weight gain, the additional two weeks, the strength and growth in my family, the surrounding of friends and family to walk along beside us… all blessings from Him. I don’t know the answers to why this is our journey, and truly I can’t say I need to know; what brings me peace is just knowing He is with me regardless, He is carrying my burden with me, He is loving me, my kids, and Aaron. What brings me peace is knowing no matter the outcome He is in control and faithful and He will use our story to for good. I will continue to remember to praise Him in the midst of the storm. I will remember… “In all these things we are more than conquerors through him who loved us” Romans 8:37.
I'm a single mom of four radiant kids who believes in relationship with Jesus over religion. I'm trying not to battle with fear anymore - instead I am choosing to follow what God has called me to do. With that you'll find me here, trying to be brave, with the goal of being authentic and honest about God, single parenting and the beauty in the mess of my joyful chaos. It's sure to be a journey... and I am blessed to share it with you!