Hello!

For those who are only following by blog, we are so sorry. We give more in real time updates on our social media accounts, but the blog we worked so hard on is in need of some update love as well. When I (Jess) was in school, I wrote papers the night prior to their due dates. I remember even as early as middle school, completing a GIANT semester project on the Saturday/Sunday before it was due. I stayed up till 3/4am just trying to get it finished. So, in true procatinator fashion….here is a quick Lucian breakdown to catch you up to speed… the weekend before his second surgery. 

Since we last updated, we were discharged home, readmitted, celebrated 2 months, 3 months and 4 months with our little heart warrior! I cannot believe he is now almost 5 MONTHS OLD, and simultaneously feel as though we have lived a few lifetimes. We had a joke while we were deep in our hospital lives and would say to each other, “What day is it?” Anyone who has been through a life altering event can relate to this question. The days started to run together, I couldn’t remember what we ate the meal before (it was probably Taco Bell), thank goodness for automated payments because likely none of our bills would have been paid. The twins were probably the only thing that really grounded us to “time” because they have school and crave some semblance of a schedule even at home. 

Home

September 10, 2021 we were discharged home for the first time. After 4 weeks in the hospital, open heart surgery and ups and downs, we got to bring our little boy home! We surprised Galen and Grey at home and it was a beautiful reunion. They had waited so long to meet the little brother we had spent so much time preparing for. Those first few moments of our family of five together will forever be etched into my brain.

Readmitted

Unfortunately, that time at home was short lived and at our first outpatient cardiology appointment on September 13th, we were readmitted and Lucian was diagnosed with a severe intestinal infection called NEC (Necrotising Entercolitis), which is common with HLHS babies. Because Lucian has one single ventricle working in his heart, each time his heart pumps, it gets to choose where to send the blood…the body or the lungs. So in this case, too much blood was being pumped to the lungs and not enough to his body/intestines. We were hospitalized for 3.5 weeks. It had a lot of ups and downs, which we are learning is par for the course with HLHS. We learned a lot about balance and gratitude. Will and I settled into a pretty good routine of balancing hospital and home life. Medical parents with other children will understand how challenging this was. We did our best to be with Lucian as much as possible, but also spend time with the big boys at home. 

Of course, I wanted to be home with my family. And seeing Lucian hooked up to monitors and IVs will never feel good. BUT, I had so much time to really focus on gratitude and I was constantly crying to God, “thank you!”. Our baby with half of a heart was ALIVE. Each day with him, whether home or in the hospital was the sweetest gift. So much time in pregnancy was spent paralyzed with fear that he would die, and yet there he was. Sick, yes. But alive. And there was nothing to do in the hospital except hold him and kiss him and tell him how loved he was (…and watch a lot of Real Housewives. Yeah, you read that right. RONY. Not ashamed). So during that hospital stay, we watched our baby boy get sick, turn one month old, get better, get sick again, heal and grow and finally be discharged back home on October 6th.

And thankfully, since then, we have been able to stay out of the hospital and remain at home. I underestimated the challenge it would be to raise and care for three kids 😕 in the middle of a pandemic, but we are hanging in there (read as: surviving). All kidding aside, we are so grateful. 

Preparing our hearts for a second surgery

A little more current update is Lucian was supposed to have his second surgery (the Glenn) on December 15th, but at our pre-operative appointment, Lucian tested positive for the Rhinovirus (common cold…thanks Preschool!!). It is too risky to place a child with a respiratory virus on a ventilator and so our surgery was delayed. This was a blow! We were so looking forward to being out of the “interstage” (time between first and second surgery), because it’s less risky and would hopefully bring more stability to Lucian’s heart. By no means we were looking forward to seeing our baby endure another heart surgery (and still are not), but we were hopeful about the future after the Glenn surgery. And yet, in our fear and grief and disappointment, there was joy! We were able to spend Lucian’s first Christmas at home with our little family. We chose to quarantine ourselves (2020 style …but no tp shortage!) for the remainder of the year and prepare for his surgery, which was rescheduled for January 10th. I have a lot more gray hair, the kids have watched way too much TV, and we’ve never been more frustrated with COVID and germs and craving our adult interactions, but we made it!

We have always known that with Lucian’s diagnosis, we would have AT LEAST three planned surgeries. But facing these realities head-on is not easy. And while I said before, the Glenn surgery SHOULD bring us more stability for a few years, we are still very much afraid. We have grown to truly know this sweet son of ours and it is heartbreaking to imagine handing him back over for such a serious surgery. While it is less risky than his first surgery (the Norwood), listening to our surgeon outline the risks this surgery entails is gut wrenching. We are praying for our surgeon, Dr. Do. We are praying that his scar tissue will not be severe and cause complications during the surgery. The surgeon reports getting through the breast bone and scar tissue from his first surgery is the most risky part. They will not know until they get in there. In addition, we are praying that the surgeon is able to successfully avoid damage to Lucian’s phrenetic nerves, as they are essential to his breathing post surgery. We are praying that Lucian will be able to successfully come off the ventilator as soon as he is able. Our specific prayer is within 24hours post surgery. We are praying for a short ICU stay and continued recovery on the step-down unit and Lucian back home where he belongs. However, we know that with this diagnosis, anything could happen. So we are also praying for peace, strength, rest, hope, and trust in the Lord. 

We will be forever grateful for the love and support our family, friends and strangers have shown us over these last several months. Your generosity, prayers and words are something we talk about daily. 

We will try to keep updates coming but for now, please pray for our sweet Lucian Theodore on January 10th as he goes into his second open heart surgery. 

Naming your kid is hard. Will and I poured over boy names looking for the perfect one. It is such an overwhelming responsibility to find the name he will bear for the rest of his life. We thought about so many names but nothing seemed to fit..till we came upon Lucian. It felt right. It felt meaningful to us. After such a crazy year, he felt like a light in a time of a lot of darkness. And after his diagnosis, we now fully understand why his name was put on our heart.

Lucian: from the latin word lux, which means “light”

There have been a lot of uncertain and dark moments throughout this pregnancy. Without going into too much detail, an IVF cycle is a rollercoaster of emotions; needles, medications, testing, numbers, risks and percentages. And we did not walk into Lucian’s cycle with the most confidence from a medical perspective. But we felt God’s reminder that although we were using the miracle of modern medicine to grow our family, that He was still in control. If He wanted this embryo to be our living child, I would be pregnant whether my “lining” was the ideal number or not. And so we made the choice to move forward with his transfer, trusting God to grow our family. I felt so much anxiety in the early days of being pregnant. Maybe it was intuition or simply a reminder to continue trusting the Lord at every uncertain step. At 12 weeks, I woke up bleeding and certain we had lost our little boy. We were again reminded that He had our best in mind when we saw our baby’s heartbeat in the emergency room that day. As a result, I was placed on bed rest for a few weeks due to a hemorrhage that caused the bleed. I was hopeful to stop the bleeding and we continued to trust and envision our life with our boy. And yet the darkest time came at our 20-week scan when we received the news of his heart defect.

“The light shines in the darkness, and the darkness has not overcome it”

John 1:5

“When Jesus spoke again to the people, he said ‘I am the light of the world. Whoever follows me will never walk in darkness, but will have the light of life”

John 8:12

As sad, scared and uncertain as our future feels, we know we do not walk in darkness. We are not walking alone.

Theodore; from the greek word theodoros, which means “gift of God”

His middle name, Theodore, is one we chose after his diagnosis. On the phone with Will’s parents the night we found out about L’s heart, his mom, Chris, said something that stayed with me. “Lucian is our gift, whether he lives for a short amount of time, or he outlives us all”, she said. Her words were so powerful and I thought about them that whole week. At the time, I felt as though I had already lost Lucian. That the joy of his life and this pregnancy had been ripped from me. I was mourning. I really needed to hear Chris’ sweet reminder of truth; he is our gift. No matter the outcome.

We look forward to finally being able to hold the boy whose name was much more than we ever dreamed it could be.

Love, Jessica