Finally it was time for our second fetal echocardiogram with Dr. Krabill. Eight weeks from from our initial look at Arrow’s heart and now time to recheck… with hopes that the asymmetry on the left was still within a range that was not concerning. June 21st… I laid in the dark ultrasound room again, staring at the monitor on the wall while the ultrasound tech looked at Arrow’s heart, taking measurement after measurement. After 45 minutes, the required measurements were completed, the pictures of blood flow were finished and it was time to wait in an exam room to meet with Dr. Krabill to hear the results.
Dr. Krabill entered the room, with a smile, a warm welcome and sat down, looking at me with compassion. She began explaining she saw what she thinks may be a small hole in Arrow’s heart between the left and right sides. She elaborated that in the ultrasound it’s difficult to tell the size and if it is in fact a hole; this will need to be checked following delivery. She shared that if there is a hole and it’s small they can usually heal on their own; while if it is medium to large it will require surgery which is usually at 3-6 months of age. She continued to inform us that the asymmetry of the left and right sides is of concern due to measurements of certain left valves being small. This could be caused by a narrowing in the aorta, but is it hard to tell at this point looking at the heart given shadowing since she is in utero. Dr. Krabill explained given this, Arrow will need to have an echocardiogram on her own heart following birth to obtain definite information on if there is or is not a hole and on the asymmetry to determine if surgery is required, what kind and how soon. This means the decision was made that I was going to need to deliver Arrow at Swedish Hospital and would need to establish my care at Swedish Maternal Fetal Medicine.
Friday June 30th, I met with my provider in town to discuss the results of my appointment with Dr. Krabill, the decision to transfer care to Swedish MFM and just what everything meant. At this appointment, Dr. Hein explained that being at Swedish for delivery allows Arrow and I to remain in the same location, her to receive the proper care and attention she needs given her heart situation, until I can be released and she transfers her care to Children’s Hospital. In essence, it’s all about ensuring mom and baby have their needs met and if at all possible do not have to be separated after birth.
Tuesday July 11th, Aaron and I went to our first appointment at Swedish MFM. At this appointment an ultrasound was performed to check on Arrow’s growth rate given at her 20 week scan was in the 7th percentile followed by a meeting with provider, Dr. Harding. It was lovely to watch Arrow on the monitor, to see her heart beating, her cute little feet, her hands, her profile.
Following the ultrasound, which doesn’t provide us any information as the tech cannot tell us anything, we waited in the exam room for Dr. Harding. I felt nervous. I was nervous about the results, nervous to be meeting a new provider who would be part of my new care team, nervous about all the change that was happening to what I had planned for this pregnancy.
When Dr. Harding entered the room, I found myself slowly relax. He was kind and he was caring as he introduced himself to me, Aaron and Aysa, he was personable as he went over the current status of our pregnancy to ensure we were all on the same page. His bedside manner of compassion made it easier to hear the news that I was not prepared to hear: Arrow is now in the 3rd percentile for growth. This could be due to her Down Syndrome Diagnosis, her heart issue or it could be that my placenta is beginning to not work correctly and isn’t feeding her appropriately. He explained that when a baby is diagnosed with Down Syndrome, the placenta also has Down Syndrome therefore it can decide to not work correctly. Given this, the goal is to get Arrow to 37 weeks and then induce. Dr. Harding further explained that I would need to be monitored twice a week for ultrasounds, dopplers and non-stress tests to ensure her growth is continuing as desired, blood flow to Arrow from the placenta is good and that her heart is handling movements in utero well. He agreed to work with Dr. Hein to have me be seen Tuesdays in Seattle and Friday’s in town for the non-stress tests. He did explain if there is a change in her growth the choice may be made to delivery her sooner than 37 weeks.
Tuesday, July 18th I attended my second appointment at Swedish MFM. My appointment began with my non-stress test which I was told looked good - her movements were good and her heart handled the movements well. Hooray for a piece of good news - at this point any good news helped give me hope. Following the NST, I had an ultrasound, not to measure growth, but rather to watch her movements and check her tone. The tech was able to obtain an adorable profile picture of Ms. Arrow with her fists in front of her face - this was my treasure of the day.
Finally, it was time to meet with another provider, the ARNP / Certified Nurse Midwife who is part of the Swedish MFM team. I can’t recall her name. I just know she was real, she was kind and compassionate as she went over the results. I remember that while she was a provider giving me medical information about my baby, she also saw me as a person and connected with me as a mom. She made receiving the information she had to share more bearable. She shared with me the following: The NST looked good; the ultrasound movements looked good, Arrow’s tone looked good and the amniotic fluid levels looked good. The area of concern is the blood flow on the doppler, from the placenta to Arrow has begun to decrease and become restricted. This can continue until the blood flow is absent or reversed - both of which are not good for Arrow. Given this, she strongly recommended that I have a steroid injection to begin to help mature Arrow’s lungs as I am 32 weeks pregnant and lungs don’t begin to mature until 34 weeks. She further explained that there is a high risk I will delivery very soon; that with the restriction of blood flow I need to have my bags packed and with me at every appointment in case they decide to admit me for delivery. She continued to let me know that I am at a high risk for c-section as growth restricted babies often have trouble handling labor. I was also informed that my local hospital where my NST will be performed on Friday is advised to contact Swedish immediately should they see anything of concern.
I tried hard to keep the tears in, to remain composed and just absorb the facts as she spoke. Remaining composed worked until she asked me how I was, how I was handling all the news. It was then the tears fell. This wasn’t what I had planned; my kids were to be at my delivery and I currently have one son in Germany till Tuesday and another in Oklahoma until August 17th; I hoped for a vaginal delivery; I had hoped to make it to 37 weeks. Now I live my life in 3-4 day increments; paying attention in between appointments to Arrow’s movements in case they change and I need to contact the on-call provider. I had so many thoughts of what needed to be done still running through my head - between home items and work items. I made it to the car somewhat collected; but once I shut the door to my car and had Aaron on the phone, by composure fully fell and I sobbed as I talked with him. My emotions were and are all over the place. This is not how the pregnancy was suppose to go for us. I thought I still had at least 5 weeks to prepare a house, her room, my work for her arrival. I thought I still had a chance of a vaginal delivery, with my kids home and present. I thought our only concern was her heart. Now it’s all upside down. I could meet Arrow anytime, I have little time to prepare a house, her room or my work for her arrival. I have a very low chance of a vaginal birth and possibly only one kid home for delivery, if lucky two. I try not to sit in wallow, or have a pity party. I know others have it worse than me; I know I have a great care team. I know I have great support around Aaron and I and our family. I know I have a faith that I will stand in to remain strong and I know God is close the broken hearted. I cannot question why my body is choosing to not feed my baby; I cannot question why I have to worry if she will survive; I cannot question why about any of this because the why gives no answers, no peace but only more uncertainty.
Tomorrow is Friday. We have had both our steroid injections for Arrow’s lungs and tomorrow we have our next NST. Our bags are packed and will be in the car should we have to go to Seattle tomorrow to deliver. Baby clothes have gotten washed (thanks to help of Aaron’s mom), cradle in our room ready, and premie clothes are in a bag for Arrow (thanks to my amazing co-workers). I pray tomorrow Arrow is great and we just have one more day, two more days, three more days, four more days and many more days of her in utero growing and gaining. Each day is a win for her and a chance for me to walk in FAITH OVER FEAR.
While I continued to work through my emotions about Arrow’s diagnosis and her heart prognosis, my family was also working through their emotions. Only their emotions were incredibly different than mine. As they would speak with me as they processed I would come to see that they didn’t hold onto fear or worry; instead they sat in a place of extreme love for her, anxiously awaiting getting to meet her, hold her and planning how they will miss school to be there for her should she need surgery. While their peace about the situation, their unconditional love already for their sister, spoke to me, I still had trouble removing my fear and worries.
At the end of May first part of June, Aysa’s school was working on an assignment called Poetry Slam. The students were to write a poem to present to their peers about something personal/close to them. It was through this assignment that I saw the heart of my daughter and God used her words, her heart, to begin to heal mine.
1.5% of our total DNA
2 per person, that’s what they say
That’s the norm. The supposed to be
One with Down Syndrome,
They have 3.
A genetic anomaly
92% think their lives will go to shit
But you Ms. Arrow Jaye,
Had a chance at being “normal”
And now I’m left to wonder, will you go to the spring formal?
There was a 1 in 700 chance of mom having you
We will all be there, no matter what you go through
Plenty of people will feel bad, make fun, and call you names
Those people may cause all your pains
I want you to know you’re not a disgrace, you’re not a burden we say
Tears rushing down your face
Don’t listen to any of these people for they will never know
How gorgeous you are and how far you will go
You are gifted with beauty inside and out
You have even been born yet, but I have no doubt
Your laugh is the silliest, will have little girl's trembling
Your smile will have all the world disassembling
Their twisted ideas of how a lady is supposed to act
And your eyes, they are gorgeous, simple as that.
Your are more than what your body chose to do
You aren’t a mistake, a defect, and are not someone who
Deserves to be ridiculed for whatever they do
I cannot wait to see what you get into.
Will you have your own restaurant? Or work at a zoo?
You can do anything, and I love you for that
Although I really hope you’re not a brat.
You’re life hasn’t started,
It hasn’t begun -
I would like to thank Chromosome 21.
It’s in her words I see her heart, her deep compassion for love, I see what I have poured into her about where true beauty lives and I see her already pouring that truth into her sister, Arrow. I feel truly blessed by Aysa, by her heart and the amazing love she already has for her sister and within that, her overall love and positivity that she embraces each day and each situation with. When I need strength, when I need to remove some fear and worry that creeps in, I read this poem and replace the fear and worry with confidence that we as a family have this; no matter what is ahead, we as a family will get through, that we have each other, and we each carry a strength when another may not, and in that time we carry one another.
(Thank you Aysa for allowing me to share your poem for all to read! Thank you for your heart and who you are growing up to be. I am beyond blessed to be your mom and share this journey of life with you. While I may be your mom, the one who is suppose to teach you, each day you teach me so much! I love you moonbeam more than you will ever know!)
As we left Swedish that afternoon, feeling elated and blessed, we decided we needed to celebrate the incredible news. We decided as we drove home, to stop at Carter’s at one of the outlet malls to purchase an outfit; an outfit what we would save, and remind us of the day we learned we were having a little girl, and that her heart condition was not fatal. We stopped at Carter’s, and Aaron just beamed as we walked through the store looking at baby girl outfits; his face lit up when he told the store clerk we just learned we were having a girl. We left the store unable to purchase only one outfit to commemorate this day, instead we left with four!
Over the course of the next few weeks our house and hearts were filled with joy and thankfulness. The kids were excited to know they were getting a sister, and we all were thankful to know Arrow’s heart condition was not terminal. In fact, at first, learning that the journey of her heart condition was not as severe as what we had thought possible entering into the fetal echocardiogram, we no longer felt such a hard emotional response to her Down Syndrome diagnosis. Instead we felt more confident and for a while no fear, no worry, no negative thoughts. We were excited, we were thankful and focused on the gift we had been given.
Unfortunately, the confidence only lasted for a while for me and then the hard emotional response soon crept back up on me. While I had much to be thankful for, while I had teams of people praying for Arrow, for my family and for me, I begun to feel extremely alone and full of fear. Rather than continuing to reach out to my close friends, I isolated myself to process my emotions. Rather than spending time in prayer, I shut off, after all, in some ways I felt angry at God for this journey. I began to worry how Arrow having Down Syndrome would affect my other kids, what it meant for her life, for me, for Aaron, for Aaron and me together and for Tucker. I felt fear of raising two “special needs” kids, as Tucker has a diagnosis of Autism.
Usually in seasons of my life of uncertainty, or hardship, I sought God. I would sit in prayer, I would journal, I would pour into my bible study and remember who God is and who He says I am. I couldn’t do that this time. Instead, when I felt the moments that I “wanted” to journal, or listen to worship music I would instead feel angry and just say “why? Why is this what I get?” I knew I should be thankful for answered prayers about Arrow’s heart; I knew I should just sit back and allow Him to carry my burdens, my hurt, my worries, my fears but instead I felt like He forsaken me… rather than my faith increasing, I could feel my faith wavering.
Wavering faith… not a good place to be when my goal has been to lead my kids with strong faith. Not a good place to be when I have kids looking to me for how to walk through this, looking to me for strength, courage and positivity. Instead of hiding my questioning, I became candid with them. I was honest - that’s how my relationship with my kids has always been; it had always been just the four of us, and we have walked every journey with authenticity and honesty no matter how difficult that was. I opened my heart to the kids, I shared I was scared, I shared the ugly truth that I worried that Arrow would be ugly, that I worried if I would / could love her, I worried what it meant for their lives, I worried what this meant for a future with Aaron and I, I worried if I was strong enough for this journey ahead, if maybe the horrible items a woman I worked with who was strong in her faith said were true.
It was in one conversation in particular, with my son Zion, that I shared the words a co-worker had spoken to me a year ago that kept running through my head now. I was sharing with my co-worker, Sue (name changed to be respectful), about Tucker, about his Autism and what the journey had been like this far. In the conversation she turned to me and said “He can be healed from his Autism. God didn’t make him that way. He is that way due to the sins of his parents; God doesn’t create people less than perfect.” I didn’t like the statement when she said it to me, I don’t like it now, it didn’t and doesn’t line up with my faith or the God I have learned of. It was as I said this outloud to Zion, that I realized for some strange reason, this was the core of my fear though. What if I am wrong? What if she is correct? What if Arrow has Down Syndrome because of me? Because of all my mistakes in life? After all, Arrow is my third baby outside of marriage. Aaron and I are not leading a good example for the kids as we are unmarried, having a baby and now living together - opposite of what I have spoken to my kids about. I already felt my body failed me, but now what if that statement was true, that it wasn’t simply my body, but it was me in entirety.
As I spoke this outloud to Zion, he just looked at me and told me “Stop. Be quiet. Shut up actually. We both know that is not true. Yes you’ve not walked the perfect walk, who has, and you are a great mom. You know truth and this isn’t it. Arrow will be beautiful and who she is will be because of you… just like who we are is because of you… in all the best of ways mom.”
I am not well versed in theology, my faith has grown through my journey; through the love and forgiveness I have experienced through the years. My faith is from watching Him work in the heart of my kids, in my heart, the miracles He has provided in my family and friends. My faith is from experiencing the fact that even when I have felt I had been forsaken and forgotten, that I hadn’t, that He has made beauty from ashes, that He has made good with what was intended for bad. He has walked alongside me as I have raised three kids, three kids who LOVE the Lord, who are strong in their faith, who have had their own journeys and have learned who He is. He has made good from poor choices I made in my past and He is making good in Arrow.
As I fell asleep that evening, the scripture Jeremiah 1:5 ran through my head "Before I formed you in the womb I knew you, before you were born I set you apart;” This is God’s truth for Arrow...
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!