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.

​

Chromosome 21
By Aysa

Chromosome 21
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
Improper Split
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 -
But still
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!)

​

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... ​

The day following learning our baby was diagnosed with Down Syndrome, Cherise called.  She was following up with me to ensure that I had spoken with Aaron about the news, and letting me know the next step would be to  schedule with a fetal cardiologist for the fetal echocardiogram.  She continued this conversation letting me know we needed to get this appointment within the next week as we need to know the severity in order to make a decision.  I paused as she said “make your decision.” What did she mean by that?
“When you say ‘make your decision’ are meaning whether or not we plan to carry the baby to term?’
“Yes.  Many people opt to not carry to term simply on the diagnosis of Down Syndrome. Given the results of the heart, that could mean you decide not to carry to term also.”
“Oh I see.”
“There are two ways we can terminate if that is your decision. First way is called a D & E. This is where your cervix is dilated and the provider will use suction to evacuate the contents of your uterus. The second is where medication is injected into the baby’s heart to cause the heart to stop; then labor is induced and you deliver a stillborn. This would allow you and Aaron to hold the baby if you desire before you say good bye. Talk with Aaron and I will schedule your cardiology appointment and call you back.”
I hung up that call even more numb than I was prior.  The words “evacuate the contents of your uterus” kept playing through my head, followed by “medication to stop your baby’s heartbeat.”  It shocked me the difference in terminology given the option we chose if we chose to terminate.  I sat at my desk at work, staring at my computer when I realized I have to approach this conversation with Aaron.  I knew my thoughts on the options, I assumed his but didn’t want us to look back and say “Wish we would have had that uncomfortable conversation.”
Within sixty minutes of my morning call with Cherise, she called back.  She notified me that I was scheduled for May 1st in Renton to meet with the fetal cardiologist for the fetal echocardiogram and then to meet with her again following the cardiologist appointment.  5 days - that’s how long we had to wait to know more; in the meantime, I would talk with Aaron about our options and I would research what I could about left sided hearts that are smaller than the right side of the heart.
Later that night as Aaron and I laid in bed, I shared with him details of my call with Cherise.  I explained our options and that we needed to discuss this; that we needed to ensure we were both on the same page for how we move forward.  This conversation was difficult.  It was emotional and a conversation we never expected to have to have.  Candidly, I found it ironic that we were discussing stopping the baby’s heart when it’s the baby’s heart that’s the medical issue.  Thankfully Aaron and I were on the same page - either termination option was not an option for us.  After all, we had just watched our baby on the ultrasound screen, we had just seen baby’s heart, legs, arms, body, and side profile. We had just watched our baby hide behind their hands to keep us from seeing their face. We agreed we would face this journey and let the outcome be what the outcome was going to be, but we would not terminate, we would carry as long as we were able.
The next five days until we could meet with our cardiologist were the LONGEST five days ever! I filled my time with work and research - sometimes google can be helpful, and other times it’s the enemy.  In this situation it was a bit of both.  When I searched “left sided heart smaller than right side of heart” one heart condition appeared. Hypoplastic Left Heart Syndrome (HLHS).  I read all I could about this, I searched to see if maybe I could find another heart condition that wasn’t as difficult as HLHS, but with what little information I had, I could find nothing.  I shared anything I read with Aaron and we both sat in fear of this being the diagnosis.  I am far from well versed in this diagnosis, but what I read was this - HLHS means three surgeries over a course of time to correct the heart; it means  surgery immediately after birth, and many times has a very low survival rate.  Sometimes families are offered the option to not put the baby through any surgery and baby is put on palliative care until they pass. This was hard to read; a hard pill to swallow.
One evening following dinner, I decided to talk with Zion, Aysa and Riah about what I had read and what Aaron and I had been speaking about.  Aaron had put Tucker to bed, and decided to join the conversation to listen to the kids thoughts.  I shared with the kids how we were given options to terminate the pregnancy with the facts we know now, and that when I searched information on what little information I knew about the heart, I came up with HLHS. I further explained what that meant. I inquired how they felt.  All instantly said, no to termination, agreeing we take what time we have regardless of the diagnosis on the heart.  I shared with them that Aaron and I also agreed and had already made that same decision.  It was the next statement made by my daughter that spoke to me, that still resonates in a deep place within me.
“Mom, you fight.  You have always fought for each of us and that doesn’t stop now.  Palliative care and letting baby pass with no surgery is not an option. You say yes to the surgery. You do anything you can.  It’s okay if you have to be at Children’s. We would have Aaron here and he and us can take care of things at home as long as we can come see you and baby on weekends.  I know mom that it could be exhausting on you, especially if you have to drive back and forth for work, but again you fight for us, so please fight for the baby too.  We are a team and we get through it all together.”
Aaron and I didn’t have too many more conversations after that night.  We just let the subject be the elephant in the room.  Aysa’s words sat with me; they spoke right to my heart. She was right I have always fought for my kids; maybe not the same way I would be fighting for this baby, but my kids have always known I am right there, always there, and no matter what comes, I will always be right there; and they expected the same from me now, for their unborn sibling.  While these words by my daughter spoke to my heart I still managed to feel unsettled.  
I didn’t know if I was strong enough for this fight. If I was strong enough to love and lose a child.  I didn’t know if it was fair of me to bring a baby into this world to immediately have to fight for their life but at that same time was it fair of me to bring a baby into this world and not give them the option to fight?  
The next night I laid in bed, Aaron next to me playing on his phone while I searched online some more about HLHS.  This particular night I decided to search Facebook for support pages and it was here that I found exactly what I needed to speak straight to my heart in conjunction with the words my daughter gave me.  On an HLHS page, I came across a post from a mom whose daughter was born with HLHS, it was a song by Matt Hammitt called “All of Me”.  I then googled this song; I not only found the song but the story behind the song. Before I listened to the song I watched the video sharing the story behind the song - Matt Hammitt had a son born six years ago with HLHS; this song was written as part of Matt’s healing with the diagnosis. I then listened to the song… The entire song spoke right to my heart… but the following words resonated deeper than I can say, these words were God telling me “Tiani this baby needs all of you; and you have all of Me to get you through.”
“I can’t give you half my heart and pray He makes you whole..
You’re gonna have all of me
You’re gonna have all of me
‘Cause you’re worth every falling tear
You’re worth facing any fear
You’re gonna know all my love
Even if it’s not enough
Enough to mend our broken hearts
But giving you all of me is where I’ll start”

​

Tears streamed down my cheeks as I listened. I looked over my left shoulder to Aaron laying next to me and said “Aaron listen to this song.”  I replayed the song for him to hear… tears welled in his eyes as well as he listened to the song.  We finished the song, held hands and I began to pray. I prayed for God to lead us, to guide us in how to proceed, to give us strength and courage, to put His arms around us during this time and show us every step to take.
The next morning I awoke with a sense of peace. I didn’t know what was ahead. I didn’t know the heart condition, I didn’t know the severity or lack thereof. I didn’t know much but I knew what I was being called to do as a mom… I was being called to fight. I was being called to give my baby all of me, to face every fear, to allow every tear to fall, to give this baby all my love and walk in faith not by sight… and beautifully Aaron agreed, he too was called to to fight, to give all of him to his baby, to face every fear, to allow every tear to fall and to give this baby all of him. Together, him and I, with the kids, would walk this journey… and that is where we sat as we waited to see the fetal echocardiologist in two days.

​

January 2, 2017…. The beginning.
I found out I was pregnant! Baby 4 would bless the kids and me… baby 5 for our family given I entered the relationship with Aaron with 3 kids and Aaron with 1… that’s a full house for us.  Amidst the fear of the impending change, there was excitement and decision were quickly made.  At 8 weeks, Aaron and I announced the news to kids and other family members.  We shared our plans for him and his son, Tucker, to move in with the kids and me on March 1st.  
While this should have been an exciting time - it was more of a stressful time as I was incredibly sick with “morning sickness” only in my case, it was all day sickness.  I managed to work each day, but arrived home to lay down, and proceed with constant vomiting.  My kids were champions, they made dinner for themselves, laid with me on the couch to either have me help with homework or just to care for me. With being sick, the adjustment to Aaron and Tucker moving in was not as easy for me as I had hoped; I hadn’t been able to clean my house in two months, and now I had two extra bodies, two more people to care for, pick up after and to settle into the house.  Aaron helped - he cleaned, he rallied kids to clean, he made dinners, he took kids to grocery shop - he filled the gaps as best he could as I was continually vomiting. It was hard for me as I have always cared for the kids, I have always been the one to clean, do laundry, grocery shop, make dinner etc. and now I was having to let go, allow someone else to help care for them and at the same time care for me.  Aaron remained graceful during the times when I was less than graceful, when my emotions would take over and the tears and anger would flood that I couldn’t control the situation and care for my family.
During this time, Aaron and I also began discussing if we were going to have any type of genetic testing done during the pregnancy. We were on the fence. Did we want to know if there was any “issues” with our baby prior to delivery? Or would we rather just move the pregnancy ignorant, and adjust post delivery should we need to?  We could argue both sides; so we decided to talk with Zion, Aysa and Riah, seek their opinions; after all, they are old enough to have thoughts about this, to have an opinion that we should consider as it impacts them as well.  After a few conversations with the kids, hearing their thoughts, concerns and desires, we decided to move forward with genetic testing.
14 weeks… Beginning part of March… I had my first blood test and on March 12th I had the ultrasound to measure baby’s nuchal tube.  The following week I received the call from the nurse at the doctor’s office letting me know “Labs all look good. No concerns. Next set of tests will be at 18 weeks.” Deep sigh of relief. I has passed phase one.  
18 weeks … Beginning of April… I had my next set of blood tests.  Days later, while sitting at work, my cell phone rings, I recognize the number as my doctor’s office and immediately answers, eager to hear the same news as four weeks prior “Labs all look good. No concerns.” Only this time, as I answered it wasn’t the voice of my nurse, but of my doctor.  
“Tiani, this is Dr. Hein. How are you?”
“I was good until I heard your voice.  It’s never good when a provider call.” I said under a nervous laugh.
“I understand. It’s not bad, but I wanted to speak to you myself. I got your lab results late last night.  Your numbers are a bit high for Down Syndrome. You are negative for Trisomy 13 and 18.  You are a 1 in 5 for Down Syndrome; that’s a 20% chance. Given this, we need to proceed with further testing to be safe. I will be referring you to a Maternal Fetal Medicine provider for further testing. I will enter your referral as soon as we hang up and they will call you within 24 to 48 hours to schedule.”
I remained composed through the call.  Dr. Hein said all the right words reminding me to not worry, to be calm and to know that it is precautionary and the right step to refer to another specialist.
As I hung up the phone, I took a deep breath, excused myself quickly from my desk before the tears could begin to fall.  I left my desk, finding the closest, vacant provider office, where I entered, shut the door and let the tears fall.  This wasn’t what I wanted to hear. What does this mean? Why?  What next? How do I walk this? I cried for a bit, then composed myself enough to call Aaron and share the news with him.  I knew he would worry to see my name on his phone in the middle of a work day. I asked him if he was outside, as I knew the news would hit him as hard as me.  I shared with him exactly what the doctor told me and that as soon as I have the appointment scheduled I would tell him.  We told each other it would be okay; that we would get through this; that we will hold onto the 80% chance baby was not Down Syndrome.
I don’t recall much about the days in between that phone call and my appointment at Swedish Maternal Fetal Medicine. It’s a blur.  All I know for certain was that I shared the information with the kids, I asked them to pray and not share until we knew more. I reached out to some friends requesting prayer but otherwise, we didn’t tell family.  We didn’t want to worry others for no reason.
20 weeks … April 25th… we awoke early to arrive at our appointment early.  Our day was full. We were scheduled for our anatomy ultrasound, followed by a meeting with a genetic counselor and a possible amniocentisis.  
The ultrasound.. Bittersweet for us.  Our tech was lovely. She was kind, compassionate, thoughtful and fully aware of our situation.  She shared with us everything she was looking at, respected our wishes to not know the gender, and even inquired if we wanted pictures for keepsakes.  Aaron and I sat, watching our baby on the screen, seeing the profile, legs, hands and laughing that baby didn’t want to move their hands from their face.  I kept my tears back… that was my baby, my sweet baby that I was beginning to feel move… I just prayed baby was healthy and that we would get the news every parent wants to hear “your baby is healthy and your test was a false positive.”  Only the moment, the tech returned from having the radiologist review the images needing to scan more on the baby’s heart, I knew.  I knew something wasn’t as it should be; I knew our journey was about to be different than we expected on January 2nd when we learned we were having a baby.
The radiologist then met with Aaron and me in another room.  He sat us down, calmly stated he reviewed the images and there are a few concerns.

1. Possible club foot on the right foot. Hard to tell as baby wasn’t cooperating; could be just the angle of the scan. Not to worry easily correctable post birth
2. Baby is small in size measuring ½ ounces small - 7th percentile for 20 weeks.. NOW THE GUT PUNCH
3. There is a concern with baby’s heart. The left side is looking smaller than the right. In order to know exactly what is going on baby will need another scan on just their heart by a fetal cardiologist.  

Aaron and I left the room stunned. None of that was what we expected nor wanted to hear. What does it all mean?  Is our baby okay? Will our baby be okay?
We walked to our appointment with the genetic counselor talking about what the radiologist said and agreeing that we should move forward with the amniocentisis to obtain a definitive answer.
The meeting with the genetic counselor was the strangest experience of my life… it was surreal.  Cherise, that’s her name, sat us down, reiterated the results of the ultrasound.  Only it didn’t end there… that I could handle. She proceeded to tell us that with my lab numbers and the findings on the ultrasound, we now could not rule out other chromosomal abnomalities; that there is a possibility baby would not make it to term, or if baby did we may have a baby that will only survive days and we would simply put baby on pallative care after birth, love on baby and know it’s only days we have.  She said with small size and the heart, doctors may decide to take baby early if they felt baby could grow better outside of my body.  I don’t recall much more… i remember Aaron sitting next me, his hand on my right knee, him asking questions and remaining calm as he could. I on the other hand, had tears streaming down my face and answered her questions through sobs. I told Cherise we wanted to proceed with the amnio given we had 4 kids at home that we would need to prepare for what was ahead of us and we needed to know to prepare ourselves.  She agreed.  She said more, but truly I heard nothing… I saw her lips moving but heard no sounds.  I was in another world. What mom (or dad) wants to hear this news about their baby?  My heart was being ripped in two as she continued speaking. I wanted to get up and run out of the room,  run away to where this wasn’t real, this wasn’t my story, this wasn’t me on that couch, but instead I was being told my baby was healthy and Aaron and I would have the experience we had dreamed about.  
The amnio… Aaron stayed with me. He conquered his fear of needle enough to be in the room, to not leave me and to be with me every step of the way.  Sounds like a little step, but it brought me comfort and peace. The gesture of not wanting to leave my side, of overcoming his fear to be with me, gave me a sense of calm.  He sat to my left while I laid on the exam table, while the doctor scanned to know where baby was, while the doctor placed the needle in my abdomen into my uterus to extract amniotic fluid.  Aaron stared at the screen watching our baby during the procedure while I stared at the ceiling focusing on my breathing.  During this time, the Casting Crowns’ song “Held” ran through my head. As I laid there calmly, the doctor telling me how much longer was left in the procedure, the following words played over in my head “Just be held. When it feels like your world is falling apart, it’s falling into place. Just be held.”
The procedure was soon completed and now we just waited. We walked to the car in silience. As we approached the car I broke.  I fell into Aaron’s arms in tears.  Through the tears all I could say to him was “I’m sorry. I am so sorry. I am so sorry I couldn’t give you the healthy baby you so desired.” He just held me tight, telling me not to say I was sorry; that it wasn’t my fault and that he was with me every step of the way.  The drive home was silent as we both were processing what we had just heard. I just stared out the window, questioning why my body failed me.  Why was this our journey?  The remainder of the evening is a blur.  I was numb.  I tried to remain calm as I returned home and told the kids about the day. Those kids… what strength they possess and provide.  They shed some tears, they told me they would pray and that we would get through every step of this.  
I crawled into bed that night… numb. Only in the numbness the tears fell. I tried to pray but was at a loss of words. I didn’t even know what to pray, I couldn’t really think or put coherent thoughts together. The day seemed like a dream.  It wasn’t real and I really thought at any point I would wake up from this nightmare.  I laid in bed, tears falling, until my eyes were heavy enough to close and I finally fell asleep. I didn’t sleep long or well, but enough, enough to awake to tackle the next day, realizing it wasn’t a dream and I needed to find strength and move forward with the day ahead of me.
I arrived at work the following morning hoping to lose myself to the routine of work, to ignore the worry and the numbness.  Sadly that wasn’t what occurred; only because I work with amazingly caring and compassionate co-workers; co-workers chose to walk the journey with my because they are genuine, loving people.  (Truly I am blessed by their compassion, their love, their support.)  As soon as I arrived my co-workers inquired about the day prior, hoping for good new.  I shared with them the news, and as I shared, I couldn’t hold back the tears, they streamed down my cheeks, I choked out some of the news as the tears grew more.  They listened, they hugged and offered support.  They were all there in the most beautiful of ways.  
I tried to work through the morning, but all I could focus on was that I wanted my mom while I waited for the news.  I texted my mom then, asking if she was home and if I could stop by.  She responded quickly that she was and yes… so I left work instantly heading straight to her house.  I barely entered her door when I broke.  I sobbed and incoherently shared with her the news from the day before. She just opened her arms and held me.  She let me cry and just held me; just what I needed. I may be 37 but sometimes there is nothing like the arms of your parent and sometimes nothing like the arms of your mom. Another woman, who carried babies, who knows every hope a woman has for their child and every feeling that could occur when hearing what Aaron and I heard the day before.
I sat on my mom’s couch sharing all the information. I told her I was standing in faith. I was holding onto whatever percentage we had that baby was okay; that I just had to hope for a miracle.  While sitting with my mom, my phone rang… it was the number for Swedish. I instantly answered the phone. On other end was Cherise. She started with the good news…

1. They had the results already from the anmio
   
2. Baby was negative for T13 and T18
   
3. Baby is positive for T21 (better known as Down Syndrome)
   

She then proceeded to tell me we know they phyiscal issues from the ultrasound but we won’t know baby’s “mental retardation” until delivery and as baby grows. They will continue testing to determine if the Down Syndrome was random or was genetic.  She advised I speak with Aaron and she will call me the next day.
I couldn’t breath.  I fell into my mom’s arms, sobbing uncontrollably. I know Down Syndrome is not a death sentence, but my heart was heavy. What does it mean with the heart issue, the size issue?  What does it mean for my family as a whole? How will Aaron take the news?  I sat next to my mom, on her couch and called Aaron.  I fought back tears as I told him the news. I asked if he could take the day off and come home. I said he had to work, but would call me later.  I could hear the emotion in his voice, but he had to be strong… I was breaking and he was at work.
I didn’t go back to work that day. I left my mom’s house, drove home, walked through the front door, down the hall, into my bedroom, pulled back the blankets and crawled into bed. This is where Zion found me when he got home from school.  He took one look at me, crawled up next to me, grabbed my hand and inquired if I was okay. Through tears I shared with him the news I had just heard. He listened and then just hugged me, he told me it would be okay. He reminded me God is in control even though it may not feel that way right now; he reminded me we are a family and we get through everything together and that includes this.  He allowed me to cry and listened to my feelings. I shared that I was scared, what if the baby was ugly? How would this impact our family? What does this mean with the heart condition? He just listened and was there.  What a lovely blessing in the midst of such an emotionally hard time.  Zion sitting with me, listening, loving me was such a gift; a gift I will cherish more than he will ever know, more than I have words to express. As a mom, in grief, to experience my gentleness and kindness of my son’s heart, of this boy that has grown into a young man, of a boy that I raised, there are no words; it was the gift given to me on a day when I felt my world crumbling.
As Zion and I sat in my bed, playing on social medial to laugh, Aaron arrived home. He decided to take the afternoon off, to come home and sit with me, to also hold me, console me and to process his own grief about the news.  As kids arrived home from school, we shared the news, and together as a family processed what that means and next steps. Aysa and Riah took the news like champs, much like Zion. The diagnosis didn’t phase them; they were having a sibling and their focus was on baby being healthy and knowing facts about the heart concern. Now we wait for the next appointment - the fetal echocardiogram to know more about baby’s heart.

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“Jesus calm my heart
Come near me please
Lord don't let these worries get the best of me
Oh I believe, that You're still here with me
Cause You meant what You said when You said You'd never leave
“I'm at the end of myself
I know I've got nothing left
Feels like I'm stuck in the valley of the shadow of death
And I've been down here so long
I just can't find my way out
Oh God I don't stand a chance
Unless You carry me now
God carry me now”
I sat with my music playing, pen in hand and journal in front of me, when the song “Carry Me” by Josh Wilson came on my Pandora station.  At first I wasn’t listening much to the lyrics of the song, just writing my heart out, when suddenly I heard the above verse, and tears welled, then fell, hitting the pages of my journal.  This is the cry of my heart right now - the words that I am wanting to shout out, but haven’t been able to form.  Yes Lord, calm my heart, come near me and don’t let my worries get the best of me. Right now my worries are all consuming. Usually I do better; usually I am able to lay my worries at the feet of Jesus, I am able to hand them over. Usually I am able to remove the lies I hear with His truths.  Why is it that during this season I am constantly feeling unsettled? Consistently feeling like I am not enough? As if I cannot keep up? Why is it that I am feeling exhausted? Not physically exhausted, but emotionally exhausted? ​

Some weeks life feels like a hamster wheel... running in circles getting no where other than exhausted, discouraged and frustrated.  This week is my hamster wheel week.  I ended my weekend at the point of emotional exhaustion, finding myself driving in the car with my lovely twelve year old daughter, crying. Okay, more like sobbing and unable to coherently speak, but thankfully could still see through the tears enough to drive, and speak clearly enough to let my daughter know "I'm really sorry. I'm really ok."
Sadly I can't even fully pin point the why behind my emotional exhaustion.  The weekend had been like any other weekend over the last 8 months. Saturday was filled with work and kids' activities such as indoor soccer and basketball.  Saturday night was a lovely night out with my boyfriend for a work event and then home early enough to relax and watch my new favorite show on Netflix, "Parenthood".  My Sunday was filled with pure laziness.  Yes I had a laundry list of items I should have been doing... cleaning bathrooms, laundry, vacuuming, dishes, dusting, organizing my downstairs, organizing my office, meal planning, grocery shopping, cleaning out my car, studying, balancing my check book, paying bills and this is just the beginning of the list.  I was filled with no desire to actually be intentional with my time, with my day and accomplish anything. Instead I started by day in bed, drinking a warm cup of Spark, reading my devotional and writing in my journal, followed by writing on my blog which was only followed by more laziness which consisted of watching more "Parenthood."  When dinner came, I had no desire to cook, and truly nothing in the house to cook since I boycotted meal planning and grocery shopping; this resulted then in dinner from Panda Express (after all no one else makes such delicious orange chicken).  It was here, the end of my day of laziness, after grabbing orange chicken for four, when my emotions sunk, and I was a ball of tears.. all because my daughter asked me if we could do some activity. I don't recall what it was even, but that it cost money... and that's when the tears flowed and all I could keep telling her was that I was sorry; that I am working hard to provide for us, but I just don't have the extra money.
Monday I awoke just as emotional exhausted. I am tired of running on the hamster wheel. The wheel was intended for hamsters to get exercise, not to remain on indefinitely, or until complete exhaustion at which time they are paralyzed.  This is me right now... I am the hamster. I am on the hamster wheel, not on the wheel to exercise, but on the wheel trying to maintain, only I am reaching exhaustion, my margin is full.  In this exhaustion I feel discouraged.  I feel frustrated. I have been working hard in all areas of my life, I have been working to move ahead to provide for my kids, to get debt reduced, to meet the needs of each one of my kids, to be an active, engaged parent for my kids, to take care of myself, to grow my own dreams and passions, to be financially wise and the list goes on.  I keep doing.  
That's the problem... I keep doing.  I live off a list. I check off my items as I accomplish them.  I live my life on the wheel thinking it's moving me forward, getting me ahead, but instead I am spinning in circles. It's time to get off the wheel. Take the frightening jump. Leap off the wheel...I need to live here, now and focus on what is working, what blessings are in front of me... I need to trust in what God has planned and not what I have planned.  
It's time to turn into Him for rest, for reassurance, for strength and listen. It's time to let go of my plan and remember He knows the plans He has for me, plans to give me hope and a future.