August 31 found me back at MFM, wondering whether our baby would be among the 73.7% of babies whose temporary renal blockages spontaneously resolve OR the 26.3% of babies whose enlarged bladders were an indication of greater issues. The moment the tech set the scanning ‘wand’ on my abdomen and the baby’s image appeared on the screen, I instantly knew. His or her bladder was many times bigger than it had been on the first scan. It was overwhelmingly large, and I had read enough to know that at this size and gestational age, it was officially considered a ‘megacystitis’ and would not (apart from a miracle) resolve on its own.
I had prayed for very clear results at the second U/S, and God did answer that prayer. I hadn’t asked for an amazing ultrasound tech, but the tech I had that day was beyond amazing. She talked me through all she was seeing as she proceeded to study the rest of baby. There was a significant problem with every other area she scanned: baby’s heart was displaced in the chest, appeared to have only one ventricle, had calcifications, and appeared to be surrounded by fluid. Baby’s growth was lagging in all areas, but this was especially notable in the femur and the brain. Baby’s brain had ‘cysts,’ or abnormal fluid-filled areas. His lungs also appeared to be surrounded by fluid. The longer she scanned, the more obvious and overwhelming our baby’s issues became, but I felt brave and was holding it together nicely until I remembered that I would have tell our other children that we were probably not going to be able to bring this newest little sibling home from the hospital in February as we had expected. Then the tears came quietly, and that amazing ultrasound tech cried with me. Though she sees difficult U/S findings on a daily basis, she still had a genuine empathy for our baby, and me. Her compassion was so remarkable and such a gift from God on that dark day.
A different perinatologist, Dr. ‘A,’ came in to review the ultrasound, and she asked matter-of-factly if I ‘would like to continue to pregnancy.’ She was especially concerned about the baby having multiple organs surrounded by fluid (multiple hydrops), and explained that I could develop ‘mirror syndrome,’ in which I might experience symptoms similar to baby’s, especially retention of fluids leading to pre-ecclampsia. I briefly explained that our world-view includes understanding God as the author of life and that we therefore believe that He should also be the one to determine its end. The tech scanned a bit more so the Dr. could view baby’s heart, and at this time she also discovered baby’s gender. I was carrying the little brother the kids have been wanting for so very long.
I cried the whole way down 116, thankful to finally be alone. Pouring out my heart to God, I surrendered anew our baby boy and this pregnancy to Him. Jeff met me in a parking lot along the way, in between jobs, where I cried some more and we prayed together. Then I went on to pick up our kids at my parents’ house and share the sad news with them. The rest of the day was a blur, and I didn’t have much energy left to accomplish school or much of anything else, for that matter. I just spent the day adjusting mentally to the news about our baby’s condition and answering 101 questions from the kids, helping them process it too.
A few days later, we updated friends and family on Facebook with this post:
An ultrasound on Monday revealed much to our family about the tiny life we’ve been anticipating, and we’ve been adjusting to a new understanding that God’s plan for this baby are different than we expected. Our precious baby boy has a yet-unnamed genetic/chromosomal syndrome resulting in serious anomalies affecting every major organ/system. The prognosis is ‘very poor,’ but the doctor cannot predict how long he might live… a few more weeks or possibly to full term. We are now at 16+ weeks, with our original due date of 2/14/16 re-instated. We’ve been overwhelmed by a deep and amazing peace from God that truly passes all understanding. We’ve seen His hand at work in the smallest details of this journey and give Him great praise because we know that it will all be ‘for our good and for His glory.’ Your prayers are obviously appreciated as we seek the grace we need to carry our sweet yet struggling little guy as long as God allows.