There are moments in our lives...

...that we can refer back to as "that moment". It's that instant when everything changed. When we were suddenly completely aware of every detail and yet simultaneously in a strange fog. 

I remember sweating as we waited for the doctor to arrive and explain what the tech had noted on the ultrasound. I was frantically removing whatever clothing was appropriate to cool myself off. I remember that Jack's voice sounded painfully angelic. He was calm and sweet and would smile with a sort of warmth and love that made me crumble. I remember stepping out to use the bathroom and thinking that the office was oddly empty, wondering if this was actually all a dream. But as our small family later rode the quiet elevator downstairs and walked to our car, I was terribly aware of how much this wasn't a dream. 

Five weeks have passed, and I could already fill a small handful of journals with the thoughts that have run through our minds or from our lips. I have written the beginnings of this story in several different formats and abandoned each of them at some time or another. Our story has taken many forms over these last weeks. It seems filled with distinct moments that are surrounded by indistinct thoughts and prayers. I will do my best to be succinct. Know that in comparison to what runs through my mind, my written words are barely the SparkNotes. 

At the end of January, John and I found out we were having another boy. This gender announcement paled in contrast to the myriad of medical issues that were discovered at that ultrasound. Among the more superficial is a clubbed right foot which was later declared to only contain four toes. The greater concerns involve swelling around the skull, lungs and heart. Our doctor was convinced our son had a chromosomal abnormality and was initially concerned it was Trisomy 18, which is fatal. Though the results took 5 days, an amniocentesis ruled out the 3 more common issues, including Trisomy 18. By the end of the following week, we knew the diagnosis involved only his 22nd chromosome pair. The days and hours in between the initial appointment and this "conclusive" diagnosis were filled with so much emotion and rabbit trails of thoughts. We walked out of Dr. Berry's office and dissolved into tears. Jack was wonderfully calm and sweet (despite us being stuck in North Austin at traffic and being so close to dinner time) The first person I got a hold of was my sister. She was waiting anxiously to hear if we were celebrating a boy or a girl, and I actually felt bad that I had to burst her bubble as well. I couldn't make it through the conversation without tears. Every phone call to family after that was the same. I recall having a headache for the next week. John and I took time off work and just huddled together. We spent the night at his parents the next night and my parents came to visit for the weekend. The conversations that took place were well beyond my level of comfort. Yet through all of it, we felt a great deal of peace. It was never far from our minds that God was intimately involved in the details of this story. 

The Monday that we received our first round of inconclusive results, John and I declared our son's name to be Luke Elias Ledbetter. Luke simply means "light". Luke was a Gospel writer and a physician. Our Luke would be a light to us in a time of such potential darkness. And Elias means "our Lord is God". We've uttered a version of that statement almost daily as we've struggled to walk through these weeks. I can truly say that not once have I questioned why God has given us this experience. I have lived enough to know that He is Lord and He is GOOD. His way is always better than my own. And since Luke's life is not beginning as I planned it, I am more intimately aware that it is out of my hands. This is such a comfort to me, because my hands have a tendency to make a mess. 

In these last weeks, we have run tests on Luke's chromosomes and my own. We could test John, though the information is merely academic and wouldn't help us know how to care for Luke. Results determined that Luke has a random rearrangement of one of his 22nd chromosomes. Even the arrangement is unique. Our doctor and genetic counselor could only tell us bits of the arrangement, but not what it means. So this means we can only watch Luke and monitor his visible issues. His lungs look normal, except for the fluid surrounding them. We will simply have to see how they respond outside the womb. His heart has all parts in the right place, but one side is larger than the other. Our meeting with a cardiologist will hopefully shed more light later this month. He has 4 large cysts around the base of his head and swelling around his skull. These are generally accompanied by mental or learning disorders when children are born, so we won't really know how it affects Luke until we meet him. He has yet to straighten his right leg during and ultrasound, and it is difficult to tell if he merely has a clubbed foot or if the entire leg is affected. 

Our current expectation is that we will birth at a hospital with a Level 3 NICU and a team of doctors ready. I was induced with Jack (due to my rising BP) just a couple days before his due date. His speedy delivery (4 hours) predicts that our next one will be the same, if not faster. That said, to ensure all of our team is present and ready, I will be induced likely no later than 39 weeks. Our job in these next weeks is to choose a hospital and team. This is where I draw a complete mind-blank. HOW does one go about choosing the "best" team?? I know I've been praying a LOT about this. But I have no direction yet. (We are certainly open to recommendations.) I know that we would be comforted to be in the hands of physicians who are also Christians. Not because they will be better doctors, but because we may be making some life-altering decisions at a fast pace, and we want to have a medical team that doesn't fight our choices or try to sway them for reasons we don't support. I want someone who understands that despite all that medicine says about our son, God can still perform miracles. I need that person in our corner. Strangely, I was most concerned about labor when pregnant with Jack. I worried about the pain and the uncertainties. But I had no idea I would ever worry about Luke’s labor in this way. I'm not concerned a bit about the pain. As we get closer to that date in June, I have trouble considering what sort of pace our lives will take. John and I have had some bizarre conversations about how to manage the impending chaos. Everything from making sure our wills are signed (though my health is not actually in any more danger) to having our "support" team of family in the room with us. Seriously, sometimes we are mid-discussion and I realize just how ridiculous our conversations seem. Just a few short weeks ago, everything was "normal". 

Still, much of our lives are incredibly normal. Even my body's reaction to pregnancy seems completely unchanged. I am still cleared to run, and I escape when I get the chance. Dr. Berry has encouraged me to keep doing what feels good. Luke has been kicking, punching and rolling with increasing strength. John and I even saw my belly jump the other night as we laid in bed. I have a hard time believing anything is wrong when I feel Luke move that way. 

I have had a few days when I've crumbled in exhaustion from the emotional and intellectual toll this has taken on me. More often though, I've felt like we're in a bizarre waiting period. We have been blessed by time with family and friends, enjoyed watching our older son grow and learn, and cherished moments when we worry about simple things again. Each moment spent away from a doctor's appointment, I forget a little more that something is not right. Maybe ignorance really is bliss right now. 

I know this has been a very scattered piece of thoughts. I'll try not to spend 5 weeks away before sitting down to share. We are convinced that Luke's life is meant for much more than our own enjoyment. I know that sharing about our experience is appropriate. I'm also convicted that being a part of the lives of others and being concerned for their own pains and triumphs is important. To disconnect right now would cut the lines of opportunity to experience joy. 

We have cherished all the support we’ve received. This has certainly been one of the darker periods we’ve experienced in our lives. And yet it is also filled with such peace and trust. I am thankful beyond words that God has been bountiful in this mercy. 

We will do our best to keep our extended community updated through this time. Thanks for sticking through this initial overload of information. Until next time…