4 weeks went slowly and quickly all at once. I remember laying on the couch the night before we were to have another sonogram and appointment. I told Gavin how badly I didn’t want to go. Then telling him, “Well, I actually do want to know, I just don’t want to go through everything tomorrow and wait for results.”
“I know, babe.” Typical guy answer, but really there was nothing he could say to make me feel better.
I prayed for an extra long time that night. I knew God was in control and tomorrow was completely in His hands. I wanted to pray that he would fix everything and there would be no trace of the encephalocele, but instead I prayed that His will be done. If it was His will that our baby died at birth, then I knew that He would see me through it. That sounds high and mighty, I know it does. Really, I couldn’t handle anything without God’s peace. I felt so much ease about the pregnancy at this point, I didn’t want to face any bit of this experience without that peace. That was the truly frightening thought. Going back to that state of uncertainty and dread wasn’t an option. I knew I needed His grace to bring me through.
Jitters permeated my stomach even after a substantial breakfast. I watched my hand shake as we waited in the lobby and were finally called back to the sonogram lab. Gavin squeezed my hand as I climbed onto the table. Any woman that has had one of those things knows what I’m saying. It’s undignifying. You’re looking like a chimpanzee trying to crawl over a paper bed and splaying your body over the table, ready to be poked and prodded, doing whatever it takes to ensure a good scan and images.
Our sweet sonographer talked lightly during the scan and started with heart beats. Every scan started with heart rates for several reasons, but in my case, they wanted to make sure that both babies were alive. The reality is that all of my monitoring start with a little feeling of dread, knowing that they could find nothing. However, the first thing babies did was kick at the sono wand and liven up the party. Thank goodness. She moved the goopy wand towards Baby B, knowing how anxious we were to hear the news. Did his brain matter travel? Did it migrate into the cyst and dim our son’s abilities as we were warned it would? Was the encephalocele filled with the most important portions of the brain that control movement, vision, and basic life function? I don’t remember holding my breath but the sonographer told me to relax and just breathe easy. I blew out a whoosh of air as her wand landed on Baby B. There, on the back of his head was still a bubble. She zoomed in to get a closer look. Yes, most certainly still there. Sliding over to the actual brain she examined what she could see of my tiny baby’s head. Now, I know a bit about what I’m looking at after having so many of these but that baby’s brain was something I couldn’t distinguish. All I could see was gray.
“It looks like the encephalocele has not grown. It is the same if not smaller size than when you were last here.” She took some measurements and froze a couple of images to document this critical stage.
“It also looks like your baby has a perfect brain. His ventricles look normal and no brain matter is visible inside the cyst at this point. There is only fluid and some small amounts of meninges tissue.” She kept scanning and clicking images to save them to her files, unaware that she had given me the greatest news in the world.
I could have leapt off that table and hugged her. She probably would have called security but it would have been worth it. I could have done a backflip in my maternity jeans and not even that stretchy navy panel, meant to keep my pants up, would have stopped me. Any physical accomplishment was possible for me to achieve at that point. But, being the unemotional robot that I am, I looked at Gavin and squeezed his hand with silent tears running down my cheeks. We exchanged a look of relief and reassurance Our precious and prayed for little baby was going to be ok. The chances of long term disability were as small as they could be if his brain stayed in place. Tiny, minuscule, unremarkable, teeny, microscopic and highly unlikely. Those words gave me the hope I desperately wanted. God had given us a miracle unlike any other
She announced that it was in fact, boys in there and I smiled, unable to care about anything else. They checked all the babies’ organs and anything else they could see. We saw teeny little fingers and toes. We saw profiles and one baby even turned his face towards us. By the way, if you see a sono picture of a baby facing you, its creepy. Maybe not to you but they have no eyeballs that show up so you’re basically looking at a moving skeleton head. Always creepy to me. Even though my boys will be so precious in all ways, their creepy little skeleton faces were not the image I wanted to carry around with me. I’ll just focus on the cute toes and profile.
Two hours of scanning revealed an in-depth analysis of what our babies’ bodies looked like. I slid off the table as the nerve pain in my lower back started up, another side effect of pregnancy. I was glad to feel the pain, as it meant these babies were growing and putting pressure on all those joints and bones. The sonographer printed off 20 tiny images and passed them to me with a smile. I waddled along back to the waiting room as Gavin carried my bag and opened the door for me. Still stinging a bit from the nerve pain, I slouched into the couch. We didn’t say much just smiled and squeezed each others hands. The nurse called us back into the clinic room to meet with the doctor. I hoisted myself up and waddled along a different hallway.
I was incredibly grateful they put us in a different room than last time. I had no interest in reliving those terrible moments that happened just a couple doors down. The fancy tablets provided for patient boredom loomed in front of us. Gavin gave in and started playing some sort of loud and annoying game.
After I had enough of the ping ping noise I asked him to shut it off and he told me I was a kill joy with that lopsided grin of his. Eh, thats my job, honey. The doctor walked in and told us what we already knew. There was no brain tissue in the encephalocele. The only thing in there was the meninges and that simply protected and covered the brain, and had no effect on brain function. We breathed another sigh of relief. Baby B had a good brain and a fully functioning heart from what they could see and a healthy heart rate. Baby A was identical in the sense that he had a perfect brain and heart too. Everybody had their fingers, everybody had their toes. WE WERE BLESSED WITH TWO HEALTHY LITTLE BOYS.
However, that meant a long road ahead. At 23 weeks, when the babies reached the age they could live outside the womb, I would be hospitalized. I would have lots of tests and monitoring run daily and my sole job was to grow these babies and keep them in there as long as I could. 32 weeks to be exact. That meant 9 weeks away from home consecutively. No breaks or days to sneak out for a couple hours. My life was the hospital. At 32 weeks, they babies would be born via caesarean section. This had to be a c-section because if I tried to deliver vaginally, one baby would come out and pull on the other baby’s cord and cut off their supply killing the baby left in the womb. After delivery, they would be taken to the NICU immediately and stabilized. Dr. G, a pediatric neurosurgeon (the only one in Wichita), would go and examine Foster, telling us specifically what would happen and how soon he would need surgery. Most of the time it is as soon as possible following birth.
So my precious baby who would be around 4 pounds and 17 inches long with a head the size of your palm, would have neurosurgery as soon as possible after he was born. It blew my mind.
I knew it was a possibility and most likely what would happen, but still. Neurosurgery on a preemie? It sounded as risky as could be. However, it was necessary. Dr. G would cut the cyst, drain the excess fluid out of it and put back as much meningeal tissue as he could into the skull, then graft something over the pinky sized hole in his head and remove the excess skin from the cyst. Foster would wear a helmut to protect the vulnerable portion of his skull.
The babies would stay in the NICU for an extended period of time. Most likely at least a month or possibly until their due date in mid December. That meant from mid August until mid December, I would be in Wichita for a hospital stay for me and then a hospital stay for the boys. Gavin would be left at home to continue working including corn and milo harvest, switching cattle from pasture to corn stalks, building fence, winter tax preparation and watching a toddler.
Gavin and I sat back, bombarded with information. We could do this…right?