May 1, 2017. The day we had anxiously been waiting for had finally arrived. Today was the day we got to have the fetal echocardiogram performed on our baby’s heart, followed by an appointment with Dr. Krabill to know the findings immediately. We had a long day ahead of us given we had to meet with Cherise, our genetic counselor, in the afternoon following the cardiology appointment and our day began with a two hour drive to Renton.
It was a rather silent car ride, which is unusual for Aaron and me as we both usually love to turn up our music, sing along and have fun on our car rides together. Today though - our hearts were heavy, our spirits were nervous and our minds in a million different directions. Oddly enough, we drove two hours with NO music - we certainly were somewhere else mentally on this drive.
While our drive was fairly silent, allowing one another to prepare for what lay ahead for our day, we did manage one meaningful conversation.
“Aaron, I know we had decided to not find out our baby’s gender until delivery. I still would want to do that as I love the excitement of learning upon delivery, but given all we are going through, all the unknown, the uncertainty, would you want to find out? I mean, find out so that we have something positive? Something concrete that we can focus on and ideally celebrate? Or if we have negative news, prepare for with a name and planning?”
“I think that’s a great idea.”
“Perfect. When we meet with Cherise, we will let her know we would like the results from the amnio of the baby’s gender.”
We finished that conversation, feeling good we had made a decision, and in the midst of a very unknown day, we knew we would receive some positive news - the gender of our baby.
We arrived at Dr. Krabill’s office both a ball of nerves. We checked in, and then sat on the comfortable black sofa in the waiting room. Aaron and I had asked my dad to meet us at this appointment. We felt that we needed an extra set of ears in case we heard bad news; we needed someone who could remain slightly neutral and be able to ask questions if or when our minds shut off due to what we heard. Dad and Aaron sat on the couch talking; I think this was dad’s way of helping Aaron to relax not worry. I on the other hand, couldn’t relax while I waited to be called back. My palms were sweaty, my stomach in knots. I was excited to see my baby on the ultrasound screen, but scared of what I would hear today. How would I respond if I heard my baby had a heart condition that could end up fatal? How would I support Aaron through that diagnosis when I don’t even know how I would support myself? And then, the kids. How would I support them? Would I be able to be their strength when I don’t even know how I would manage? I took deep breaths. I reminded myself, one step at a time, and to remember who is ultimately in control; I reminded myself this is where my faith comes in. This is where I have to trust, no matter what the outcome, no matter how hard it is to see or understand the why, but I have to trust. I continued sitting in the waiting room praying - praying for God to just guide Aaron and me through this, to provide a miracle in the life of my baby and to bring comfort no matter what we hear.
“Tiani. You can come back now.”
Finally the waiting had come to an end. I followed the ultrasound tech to the ultrasound room. I climbed up on the exam table, laid back and lifted my shirt for the tech to place the ultrasound goo on my stomach and begin the scan. I watched the entire fetal echocardiogram on the screen. I knew nothing of what I was looking at given it was all close up images of the heart, blood flow etc. But none the less, I watched as if I understood each image. I watched thinking - that’s my baby’s heart; please Lord allow this heart to be okay; but if this baby isn’t okay give me strength and courage to move forward, to support my family and heal my hurt.
The fetal echocardiogram was completed in about forty five minutes. I cleaned the ultrasound goo off my stomach, pulled my shirt back down, sat up and took a deep breath. Next was our meeting with Dr. Krabill to learn about the results. The tech helped me off the exam table, then lead the three of us to the exam room. We didn’t wait long, although it did feel like a lifetime. Dad kept Aaron and I entertained by playing various songs on his iPad for us; but even that distraction didn’t make the fifteen minutes that we waited seem like less than an eternity.
Dr. Krabill entered the room. We all became quiet while we anxiously awaited her news. She sat down, introduced herself to each one of us, went over why I was there and then calmly began providing us the results. She let us know, structurally the heart looked good. It is true the left side of the heart is smaller than the right. She continued to explain that if one was to look at the size of each side of the heart on a growth chart, one would see the right and left side are growing in proportion to one another, although the left side is smaller; she further explained this needs to be watched because the heart should continue to grow in the same proportion ratio and if we don’t see that then we have reason for concern. Dr. Krabill went on to explain that given what we can see on the images at this point, the issue is more than likely related to the aorta (she provided a name for this, but there was so much information, the name didn’t stick with me). She explained the aorta could have a narrowing it in that would need to be repaired following birth. Depending on where and exactly what aorta surgery would be needed would determine how the surgery was performed - either access through the side in which case baby would not need to be on heart/lung bypass and would only be 3-5 days in the hospital. If the access had to be through the chest, then baby would have to be on heart/lung bypass and possible 7-10 days in the hospital. She suggested we scan baby’s heart again in eight weeks to measure the growth of both the right and left sides.
We all took deep breaths as so far this news was sounding better than we anticipated. While the news wasn’t great as we may still be facing surgery, it was better than expected. Dr. Krabill finished the appointment by telling us “The baby does not have HLHS. If baby did there would not have been any surgery options as healthy babies have difficulty surviving and many doctors will not perform the required surgeries on a baby with Down Syndrome due to additional health factors they usually have.”
We left the appointment feeling relieved. Our baby did NOT have HLHS! Yes our baby has a heart issue. Yes our baby may still require surgery, but our baby would survive! I walked to our car thanking God for answered prayers; feeling so thankful that we were given relatively good news, and that I had the flame of hope reignited. Now I was eager to meet with Cherise, notify her Aaron and I will be moving forward with carrying baby to term and yes, raising our child who has Down Syndrome. I was more eager though to meet with Cherise to find out the gender of our baby - to be able to give baby a name since we already had names for a boy or girl picked out.
Our meeting with Cherise was quick. While we left our first meeting with Cherise feeling as if she was for us terminating our pregnancy, that feeling quickly changed as we watched her face fill with joy upon telling her we were carrying baby to term and raising our child. She proceeded to tell us how happy she was with our echocardiogram results today, that they had been worried with what was said after the first ultrasound and she is happy to hear the prognosis. Cherise’s face filled with excitement as we asked her to please share with us the gender of our baby.
“Are you ready?”
“Yes we are” Aaron and I replied in unison.
“You are having a baby girl!”
I looked over at Aaron after the sentence was finished. I saw him with tears in his eyes with an ear to ear smile. I was elated. I couldn’t wait to tell the kids as they all were wanting a sister. I sat on the couch in Cherise’s office, looking at Aaron to my left with a smile and tears, then looking at my dad to my right, with a huge smile, and all I felt in that moment was hope and thankfulness. I was being given another daughter; a daughter I would have the chance to hold and time to love. As I sat there with my mind swimming with the good news of the day, Aaron was eager to share our daughter’s name with Cherise…
“Our daughter’s name is Arrow Jaye Matai.”
(**Jaye was selected by her sister Aysa - it means Victorious. Matai is Hebrew for God’s gift**)
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!