Welcome to our blog!

Jessica here! We hope to be able to use this space to process this journey and update family and friends. This is the first time Will or I have blogged so bare with us, it’s a lot of thoughts. We have a lot on our mind and much to summarize about our journey so far.

If all goes as planned, we have about 7 weeks left before our baby boy joins the world. I have some very mixed emotions about this approaching date. To be honest, this pregnancy has been VERY hard. We have known about Lucian’s diagnosis for about 12 weeks now, but it has felt like a lifetime. This period of waiting has been really hard. We are doing our best to prepare for what life will look like as heart parents, and yet, there is still so much we do not know and cannot prepare for. And so while I am excited to meet Lucian, I am also so scared of what we will face. This has been, and will continue to be, a difficult time of unknowns and trusting God. I am not always doing this well. Will and I have experienced moments of grief, anger, fear, worry, dread, hope, gratitude, sadness, feeling overwhelmed (sometimes, not all at once 😬 ! ), and continue to cycle through these.

We are grateful for the providers at Vanderbilt we have met with over the last several weeks. We were thankful that after our 20-week anatomy scan, Vanderbilt was able to “move us up the list” to get us in and confirm the diagnosis. They told us their wait to get into appointments is usually very long, but ours was less than 1 week. We have been given a lot of devastating information about his diagnosis and yet felt comforted and in good hands. Our cardiologist is so great. She is comforting and informative at the same time. The perfect mix for walking this road. We met with one of the surgeons that will perform his first two operations, who was also very kind, confident and reassuring of the plan moving forward. We have also met with Maternal Fetal Medicine, Palliative Care, Neonatology and Lactation. Each team left us with a similar impression; first congratulating us on our baby and assuring us that we are not alone in this fight. After a discussion about maybe not being able to nurse my baby, the Lactation nurse held me while I cried. 

We are thankful that we have not received any more bad news at our monthly cardiology appointments. For most of our appointments till he is born, no news is good news. Our cardiologist has been monitoring Lucian’s patent foraman ovale (PFO) and patent ductus arteriosus (PDA). These are holes or openings in his heart and we want them to stay open. In addition, they are monitoring pressures in his pulmonary veins and they have continued to stay low, which is great news. While these are not necessarily guarantees, it means a less complicated beginning.

So far, our baby boy is growing well. At our last Maternal Fetal Medicine appointment (the high risk OB who will be delivering our baby) he was sitting at 62% for size. We want him to be a good healthy weight when he is born which will help him tolerate his first surgery best. 

His first open heart surgery will be expected within the first week of his life. Based on information from Cardiology and from following other families’ journeys through social, it will likely be day 3-5 after he is born. We are praying that we are able to hold him and spend as much time with him before these surgeries, while he is monitored and stabilized in the NICU. The thought of handing over our days old baby to a team of surgeons and medical professionals and trust that they bring him back to us, is a very scary thought. I am frozen in my tracks thinking of that moment.

For now, we are preparing our home for Lucian. Setting up his nursery, although I’m not sure I’ll ever let him sleep in there alone 😉. We are combing through baby items we kept from the boys. We are talking about “when we bring Lucian home”, all in faith…faith that our boy will come home. That he will thrive. That he will make it through his first surgery and the two that follow (along with any surprise surgeries) and live a long, happy life.

This is a time of preparation. Preparing our hearts for the ups and downs of medical parenting. A role we will never be fully prepared for, but know we will do our best. We are preparing for a long hospital stay, scary moments and unknowns. BUT we are also trying to prepare our hearts for victories (both large and small), hope, joy, beautiful moments with our family of five. 

Thank you for being here with us. 

More thoughts to come.

With love, 

Jessica