Expectations are a funny thing. Some we are consciously aware of, others hide deep in our hearts and we don’t even know they are there until they get taken from us. We expected a child with 46 chromosomes. Having a child with 47 was not in our plan. My heart was a beautiful garden, full of plants blooming on the surface and unaware of what had been growing underneath. Obtaining our sons diagnosis was like God coming through that garden and pulling out all the weeds hiding under those beautiful plants. Leaving me to adjust my eyes to a new kind of beauty. Taking away my plans in preparation for His own.
It didn’t take very long to accept Gods will for our son. While my husband grieved his own dreams, he was quick to become the biggest supporter of our son. I would not have escaped that dark place so quickly without him. We knew and trusted that while this wasn’t the baby we had in mind. This baby was handpicked by God and chosen to be ours long ago. On purpose for a purpose.
Our son being diagnosed with Down Syndrome opened our eyes to what an individuals worth is to the Lord. How do you measure ones worth? The measurement of worth to the world is IQ and careers. What a person contributes to society. How does God view our worth as a person? It’s definitely not what we contribute to the world. God doesn’t look at my son and see disappointment. After all, we are all created in God’s imagine. He views my son as someone that He has set apart (called) and not set aside (rejected). He’s taken the weeds of entitlement out of our hearts and made room for new perspectives. All I want is for my children to be happy, passionate, kind, and empathetic towards others. It’s more important that they learn to sprinkle Gods glory everywhere they go. Finding this truth was a crucial turning point for my husband and I during pregnancy. We were given a sense of overwhelming peace about the direction our lives had just shifted towards.
We anxiously awaited our 20 week anatomy scan because we were hoping to find answers regarding his development and particularly his heart anatomy. The ultrasound came back normal and even his soft markers were gone by this point. His development was perfect. The news was great. What my heart wasn’t ready for is how many people I would be explaining that just because his anatomy scan was normal; did not mean that he wouldn’t have Down Syndrome. I saw faces of excitement sink to disappointment. Having people close to you continuing to feel disappointed in who your child might be is extremely hurtful. Dallas and I were determined that our sons birth would be a joyous event. He deserved that, and frankly, we did too.
I had regular ultrasounds throughout pregnancy. Everything was going great until April 1st. Our ultrasound showed that Emmett’s heart was measuring bigger on the right side which led the doctors to believe he had Coarctation of his Aorta. A cardiac condition that would need to be surgically operated on shortly after delivery. It also showed that the intrahepatic part of his umbilical cord was measuring large. The official name is called an umbilical cord varix. His cord was at risk for clotting and this substantially increased his chance for stillbirth.
I remember the two weeks surrounding this date so clearly. We had celebrated my husbands 30th birthday the weekend before. We found out that he would soon be receiving a job offer. This new job would: A.) Be sending him to a 14 week training program out of state B.) It would be starting around the time of Emmett’s due date C.) We would be getting relocated to another city. Whew, okay so the one person I want to be by my side during the birth of our son might not be there? Our son might need open heart surgery right after birth? And he might be delivering early if his cord starts showing signs of turbulence? This overwhelming peace that had been provided to us was still present but it was HARD to fight off how much anxiety Satan threw at us. Once we obtained the final job offer for San Francisco; we knew this was all in our favor. There wasn’t doubt in our minds that this was the wrong move for our family even though our life seemed full of chaos. This opportunity was a huge blessing we couldn’t pass up even though it would leave us separated as a family for six months. We trusted that God would provide everything we needed to make this happen.
“And my God will meet all of your needs according to the riches of His glory in Christ Jesus.” Philippians 4:19
We were referred to Cardiology for a fetal echo. They obtained one picture of his heart out of many at just the “right angle” and said the measurements were normal. I had asked multiple times if there was anyway this could be the findings of an Atrial Septal Defect. The response was always no. Repeated ultrasounds after continued to show the right to left discrepancy. While the doctors continued to reassure me his heart was fine, because cardiology had obtained their one perfect photograph, I remained unconvinced. His cord continuously kept measuring bigger and the plan was to induce at 37 weeks if it got bigger than 10mm.
It was early May, at 35 weeks, when the ultrasound teach measured his cord at 9.9mm. I asked, what happens next week when I come in and it’s greater than 10mm? To which the response was, it wasn’t showing turbulence and they think he will be stable enough to continue to 39 weeks with monitoring. I felt frustrated that I kept getting indecisive answers. I had this intuition that our son would be coming earlier than expected. I was so afraid that the cord would be fine until it wasn’t leaving him oxygen deprived and opening a whole new world of issues.
Dallas accompanied me to the next appointment to which the cord measured 13mm. We had a different doctor at the conference table that day. One we had never met. He explained, this wasn’t the serious type of umbilical cord varix but we had our reason for induction at 37 weeks. The decision was placed in our hands. It was an overwhelming one. I expressed my fears of oxygen deprivation and he reassured my fears were valid in that they know babies do well at 37 weeks. Yes, 39 weeks is better but the benefits of waiting would be minuscule to the risks. My family is comprised of nurses. On top of that, Dallas’s younger brother has Down Syndrome. We knew the risks.. all of them. We prayed so many prayers over our son. That he wouldn’t have to go to the NICU, wouldn’t need any kind of surgery, wouldn’t have any issues with eating, and that Dallas would be there for the delivery. The prayer list was a mile long.
We set the date. Friday, May 17th, at 8pm is when we were to arrive at the hospital for the induction. Dallas would leave for training before and we were able to coordinate him flying in town over the weekend to be there for the expected Saturday delivery. The first of many prayers to be answered.
Stay tuned for the complete birth story and just how many prayers were answered surrounding delivery in my next blog.