Having our babies close in age has always been a dream of ours. When we found out about John Haven’s diagnosis, we had to grieve our dreams. We had to grieve the normalcy we expected in life. We’ve had to arrive at the the truth that’s been true all along: we’re not in control and that’s good.
There are so many different possibilities on how all of this could end. But my heart can’t rest there. I won’t let it. I won’t think about stillbirth. I fall apart when I think about walking out of the hospital without John Haven. So, I’ll look to the Healer and away from the diagnosis. Because we’re declaring healing and believing He can and He will, with all our hearts. Our sweet boy’s diagnosis and prognosis bring me to my knees. We’re desperate for God’s intervention. But right now, we won’t grieve John Haven’s life. We’ll celebrate it. Because he is so worthy of all of our love and all of our joy! I pray all the time for John Haven’s healing, but honestly, I spend more time worshipping Jesus for who He is, praising the Lord for his sovereignty and thanking the Lord for John Haven’s life and purpose. It’s what sustains me. Because these weeks can be long. And I often feel weary. I was spending some time with the Lord before an appointment a few weeks ago. And I saw the miracle. I saw myself holding a perfect baby boy, completely healed. I know this vision was a testament that the Lord WILL heal John Haven. I’ve said it many times before, but we understand his healing could be on earth or in heaven, we’re just believing with all our hearts for healing on earth. Continue to pray and believe with us. Some days I feel so weary as I pray for miracles, and my spirit is so encouraged to know that I have a community of believers standing with me in prayer.
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As I walk into my appointments, I am filled with so much hope. Hope that I’ll see healing. Hope that all my prayers will have been answered. Hope that I’ll see the Healer at work. Last week, I got to see John Haven for the first time in a few weeks. And oh, was he beautiful! I was so expectant of the miracle, but his body was still broken. We learned he was measuring 3 weeks behind. And as much as my spirit believes in the Lord’s perfect plan, I was heartbroken. Oh how my heart longs for healing. My spirit is so desperate for the miracle!
But we still have hope. Because a negative report doesn’t change our trust in the Father. John Haven is still in the hands of his Maker. And that’s something I can trust with all my heart. He is still being knit together so perfectly inside of me by his Creator. Praise the Lord! Because of this truth, I requested another ultrasound with the high risk doctor. I want to know every ounce of John Haven’s body. I want to know exactly how to pray. I want to know every single detail about my son. We know the basics: Trisomy 18, omphalocele, heart defects, cysts on his brain, small chest cavity, clubbed foot... and the list goes on. But mama’s ready to know it all. Every detail, every diagnosis, every expectation, everything. I’ve been healthily denying it all, refusing to accept the diagnosis. Putting all hope in the Father. And of course He alone is our hope, but this mama wants to know her child. I want to denounce every defect and claim healing and victory over specific parts of my son’s body! Until the appointment, my greatest prayer is for John Haven to be alive at birth. I want to hold his life-filled body, feel his warmth in my arms, and hear his sweet cry. Join with me in this prayer! Declare LIFE over John Haven, for the glory of the Lord! “I will sing the Lord’s praise, for he has been good to me.” Psalm 13:6 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. I’ve thought a lot about that first appointment. I was 9 weeks pregnant. The enemy had planted a few seeds of fear, but we were mostly so naïve and expectant of a normal pregnancy. We were discussing baby names, dreaming of Mills being a big brother, and hoping my morning sickness would end soon. We prayed diligently for our child, but our minds were still set on earthly things. We weren’t prepared to hear that our child might not live. But is anyone? This journey we are walking is a holy one. The Lord has allowed our hearts to be thankful for this season. It’s an honor to carry John Haven. We are experiencing the Lord in the most intimate way. His presence has permeated our hearts and lives. He’s offered us supernatural peace, and we’ve felt the overwhelming comfort of the Holy Spirit.
In the days following John Haven’s diagnosis, we wondered how we were going to bravely navigate this season. Lately, the Lord has been teaching us that, just as he provided manna for the Israelites in the wilderness, he will provide exactly what we need each day. He is giving us just enough grace, just enough hope, just enough joy, just enough strength, and just enough peace to walk these days. We aren’t worrying about tomorrow. All this hope, yet, it’s still difficult. It’s difficult to see my child on a screen, so broken and beautiful, knowing I can’t fix him. But these realities bring me right back to my Maker. These emotions usher me into a place of worship. While it’s difficult, it’s so freeing to know that I’m not in control. I’m not John Haven’s healer. We know the Lord is going to heal John Haven. We just don’t know if it’s going to be on earth or in heaven. Our prayer continues to be healing on earth. We pray we get to hold John Haven in our arms all of our days, not just in our hearts. Even still, our hope is in eternity. As I sat waiting for my most recent ultrasound, my prayer was to not be shaken. No matter what we saw, no matter what I heard, my hope would remain in Jesus not a diagnosis. I recalled 2 Corinthians 4:18: “So we fix our eyes not on what is seen, but on what is unseen, since what is seen is temporary, but what is unseen is eternal.” As the ultrasound began, I could so clearly see John Haven’s brokenness. The Holy Spirit quickly filled the room, offering the perspective of eternity. He reminded me of the faithfulness of God. The miraculous power of our Father. The Lord’s perfect sovereignty. I would not be shaken by what my eyes were seeing. I would be filled with hope that either way, we still win. We want healing on earth, but if not, friends, He is still good. |