Let’s Start From the Beginning…
Our 18 week anatomy scan was scheduled for Tuesday, May 22nd. I had eagerly anticipated this day for weeks. My last appointment had been at exactly 13 weeks, and I was beginning to feel impatient. I couldn't wait to see our baby. Of course, I wanted to know the baby's gender, too, but anxiety and fear were uninvited friends during my pregnancies and I was ready for some reassurance.
The Monday before my appointment I received a phone call from my OBGYN office. The ultrasound machine wasn't working, and they needed to reschedule my appointment. I was frustrated to say the least. I tried to find any loophole I could to get in earlier, but Friday was the soonest they could see me. We had a gender reveal party planned, and I was eager to tell my students the baby's gender before summer break. All of those plans fell apart. We postponed the gender reveal, and I said goodbye to my students with a promise that I would email their parents the baby's gender. Matt gently reminded me, "The Lord is just testing our patience". So we patiently waited for our appointment on Friday.
My appointment was at 10:30 AM on Friday, May 25th. Mills was exactly 13 months old, and I had been carrying our baby for 18 weeks and 3 days. We had never felt more blessed. We were so eager for our appointment, and we couldn't wait to find out if Mills was going to be a big brother to a baby girl or a baby boy. These visits felt so familiar. So safe. They had always been a place of reassurance. A place where I got to see my babies, listen to their heart beats, and be reminded of how normal my pregnancies were.
When I arrived at the doctor's office, Matt was still on his way. The nurse called me back only moments after I arrived. Since my appointment had been rescheduled, Matt had to shuffle around his morning patients in order to make it to the appointment on time. I had almost told him not to go to the trouble. Looking back, I had no idea how imperative it was for him to be there. The ultrasound technician began looking at our precious baby before Matt arrived. The viewing screen was turned off at the time, and she said she was just taking pictures and measurements. I remember her saying, "Sweet, little lips" several times. Looking back, I wonder how much she already knew about our baby. Were his lips all she could find that appeared normal? Once Matt arrived, she began to give us a few details on what she was seeing on ultrasound. She said our doctor would give us more insight when we met with her. Just the thought that anything was wrong with our child terrified us in those moments.
I remember so clearly thinking, "Well, the ultrasound machine was broken the other day. This is just a big mistake." I was so sure. There was no way there could be anything wrong with my baby. Denial was settling in quickly. We walked the hallways to the nurse's station. She took my blood pressure which was low as usual. We had nothing to worry about, right? We boldly walked the halls to our room, holding on to our naivety that there couldn't possibly be anything wrong with our child.
Matt and I sat in the room together, but we were completely silent. The doctor entered the room and we talked about Mills briefly. She then began to explain to us in detail what the ultrasound technician had been hinting at. An omphalocele or gastroschisis. Those are the only words we remember. And it's probably because we had her repeat them several times. What is wrong with my child? In these moments, anything other than normal terrified us. We were blindsided. I had managed to keep my composure, hearing everything as facts. Striving to separate these facts with the life of my child. But as we wrapped up our conversation, our doctor said, "I know this isn't what you expected to hear". And the tears, not so gently, began to fall. I collapsed. The barrier I had been building between a diagnosis and my child was torn down. This was my child. And my child was sick. And I couldn't run from it, I couldn't fix it.
We were told we needed to schedule an appointment with a doctor of maternal fetal medicine. The ultrasound technicians at this practice would have more experience and insight into our situation. It was the Friday before Memorial Day weekend which meant the earliest I would be contacted to set up an appointment was the following Tuesday. The four days of waiting were long yet full of so much hope. We weren't asking God, "Why?" or "Why us?". We were full of faith that our baby would be healed. Over those four days, we tried to stay away from the internet as much as possible. But, what we did learn was valuable. We learned that half of the time an omphalocele is present with no other complications. Please Lord, if you don't heal our child, please let this be all that is wrong. The other half of the time, the omphalocele is a sign of genetic disorder. Lord, there's no way this is our story. We are both healthy, normal people. Our families are healthy and our firstborn child is healthy. How could this be true?
My appointment was scheduled for Wednesday, May 30. And those were our thoughts and prayers as we entered this appointment. We were full of belief that our child would be healed or the omphalocele would be the only obstacle our child faced. Honestly, an omphalocele still terrified me. It would mean my child would be taken immediately to surgery to relocate his organs to the inside of his body. I couldn't fathom it.
We arrived overly early to fill out pages of paperwork. Then, we were quickly called back to meet with the ultrasound technician. She was so kind. I can't wrap up my emotions into a quick sentence. We were hopeful, terrified, at peace, anxious, quiet, bold. Every emotion all at once. She began the ultrasound and let us know that she wasn't able to tell us exactly what she was seeing, but that she would share what anatomy she was looking at. We immediately noticed the large omphalocele. As she took measurements, she pointed out which organs were located in the omphalocele. She was telling us that many of his major organs were growing outside of his body. Deep breath. She proceeded to take measurements of the brain, heart, and other extremities. In our naivety and inexperience, we thought everything looked great! We could see blood flow, hear a heart beat, and see the presence of his organs and limbs. Please, Lord. Let it just be an omphalocele.
Our doctor entered the room, introduced himself and began to quickly look through the images the technician had saved. It seemed like it only took him a few moments, which I quickly interpreted as a good thing. Everything must look normal, right? He proceeded to ask us what we knew. We responded, "We've been told our baby has an omphalocele". To which he responded, "Yes, there is an omphalocele. But, there are many things wrong with your baby". As he flipped through the images, he explained in detail every defect shown: the brain, the facial bones, the omphalocele, the heart, the wrist, the feet, the genitals. So many pieces of his body, so broken. After discussing the anatomy and the ultrasound photos, he let us know that in his opinion, our baby had Trisomy 18. However, he said in order to confirm, we would need an amniocentesis. My initial reaction was, "I don't care what's wrong with my baby. I don't care what his diagnosis is. That doesn't define him. I'll love him and carry him regardless. Get me out of here". We told the doctor we would need some time to process everything and discuss our next steps. Once he and the ultrasound technician left he room, we just sat there and cried for what felt like a long time. In those moments, I hated his words. But as we left the office that day, his ability to be blunt with us left us with no questions. We knew exactly what he said about our child. Once we finally stepped out of the room, we were ushered out the back door to avoid the waiting room of patients. I never want to use a back door to a doctor's office every again.
The next 24 hours were filled with lots of tears and prayers. We held Mills so closely, Matt and I took long walks to talk, and we worshipped. We spent time with our Maker, asking him the most honest and raw questions our hearts could create. We felt like we were on the fast track of grief. The fast track of figuring out how to die to the emotions of our flesh and let the Holy Spirit guide us through this unimaginable journey. We had a 13 month old who needed his mama and daddy. We didn't have time for depression. We didn't have time for the enemy to win. We needed God to get his glory.
I really struggled with the decision to have the amniocentesis. It's just something I never imagined doing. There were a few main reasons we scheduled the appointment. The main one, we wanted to be sure of gender. A week prior, we had been told our baby was a boy. However, at the ultrasound with maternal fetal medicine, the technician wasn't so sure. She actually asked us if we were having a girl. Because of the way baby's anatomy was forming, they had trouble drawing firm conclusions. The amnio would tell us gender. The other reason we went through with it was because we wanted to know what we were facing. If God chose not to completely heal our child, we wanted to know what to expect.
Friday, June 1, we walked in the doctor's office for the amniocentesis. I strived to be brave, but my heart was collapsing. As the doctor explained the risks, the tears started to form. I wasn't ready to lose my baby. The entire procedure, I just cried. Honestly, in the natural, it was painless. They kept asking me if I was okay. I reassured them, it didn't hurt me at all physically. But my heart was aching at the thought I could lose my child because of the procedure. Quickly, it was over and the ultrasound technician checked for a heart beat. And there it was. My strong boy. Praise the Lord!
We waited a few days for the initial lab results to come back. When that phone call came, we learned that it showed Trisomy 18 and a baby boy. We were dismissed from the maternal fetal medicine office. There's nothing doctors can do for our baby. I am now being seen at my normal OBGYN office every 2-3 weeks to check in on precious John Haven. His growth measurements, his heartbeat, and any signs that he's not okay.
Our prayers are bold. With each ultrasound, I have full faith that I will see miracles. Yet, I'm also learning to live by faith and not by sight. We refuse to be shaken. We refuse to be discouraged by what we see. We are continuing to declare miracles over our child, speaking words of life over him. We are drawing closer to the Healer, trusting his plan for John Haven's life. The Lord is so near, teaching and guiding us each day. He is all we need. Also, how amazing is it, the impact John Haven has already had for eternity? His life has such purpose, hallelujah!! I'll declare it forever, it is such an honor to be his mama.