Author: lightforlucian

‘Twas The Night Before The Glenn…

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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. 

Lucian is here!

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Lucian’s birthday

Welcome to a long overdue update on Lucian! We were able to enjoy and nest the rest of the pregnancy. We even finished organizing our pantry and fridge the day I went into labor! We are thankful for the time we got to enjoy as a family of four, and summer fun with our oldest boys (time to get used to that!). I was scheduled to be induced on August 15 at 39 weeks and 4 days, with a planned birthday of August 16. However, the days leading up to his birthday, I wasn’t sure we would make it. Friday, August 13 I started having regular and painful contractions and ultimately ended up bleeding, so off to the hospital we went! Of course we went to the wrong floor and got super lost in a large hospital with lots of construction and detours…we needed a little more excitement! I was admitted that night and officially in labor. It was a long labor, over 24 hours, but our sweet boy, our miracle baby, was born Saturday, August 14 at 8:50pm. We did NOT need a c-section which was an answer to many prayers (Thank you, God!!). We did not get as much time with Lucian in the delivery room but I was able to hold him right after he was born, before Will cut the cord, and for a few minutes before he was whisked off to the NICU. I really cherish those first few minutes with him.

Our time in the NICU was wonderful. Our nurses were amazing. We felt so safe and welcomed. They took great care of our baby! He was immediately put on Prostaglandin to keep his PDA open (a crucial step in preparing him for surgery). It took a few days to evaluate Lucian and see how he “settled out” before they could schedule a tentative surgery date. Lucian overall did ok in the NICU. He did require a CPAP and sub-atmospheric oxygen as they found that he was “over circulating”, favoring his lungs over the rest of his body. In the most simple terms, because the left side of his heart does not work, they had to closely monitor the balance of oxygen in his blood. He was also put on a couple medications (Lasix and Milrinone) to help with fluid on his lungs and heart function while he waited for his surgery. We were able to spend some time with Lucian, holding him and touching him while we waited for surgery. We even got to do skin-to-skin. We were very thankful for that week with him before the procedure.

The Norwood

On Monday, August 23, Lucian had his first open-heart surgery, called the Norwood Procedure. It was such a rollercoaster day. We were originally scheduled for 8am, then they told us it was 10:30am. He was ultimately not taken back to OR until after 2pm. I imagined saying goodbye to him would be hard, and it was one of the hardest moments of our life. We got to ride down the elevator with the anesthesia team and kiss our baby before taking him to the OR. I just prayed so hard as we were kissing him, “Please God, protect our baby. Bring him back to us”. It was a surreal and emotional moment. Will and I have stated multiple times to each other that we are so thankful to have had each other during those hard times. We were able to enjoy some time with Galen and Grey (and a Chick Fil-A frosted lemonade) for a few hours at nearby Centennial Park and they lifted our spirits. We received hourly updates from the OR, all were good and Lucian seemed stable. We did not meet with the surgeon until around 10pm. Lucian thankfully made it through the surgery with minimal complications. They were concerned about SVTs (high heart rates) and a small bleed in the back of the heart, but the surgeon felt confident they would be able to manage those. We saw him about 2 hours later and were pleasantly surprised at how good he looked. I was scared to see him but he looked so sweet and peaceful. We slept much better that night knowing that our baby had made it through this very serious surgery. We know we have a long road to recovery, but it felt so good to have this huge milestone behind us. We received Lucian’s diagnosis at 20 weeks, so we have been dreading and worried about this surgery for many months.

Post-Op Day 1 (August 24):

The next day we spent a very needed “boring” day sitting in his room with him. He woke a few times, and they felt he was actually TOO awake. They wanted to keep him sleepy and comfortable and not wanting him to move too much. But, my goodness, it was so good to see his sweet little eyes. The surgeons kept his chest open. They don’t want to close his chest too soon, to allow for any swelling in the body. Our surgeon is very thoughtful and placed a heart-shaped piece of gauze over the opening so that we don’t have to see TOO much. We are thankful for the extra love and care he showed us and our son.

Post-Op Day 2 (August 25):

Today they thought they might close his chest, but overnight he did not pee enough. So they are giving him more time. Will and I feel good about not rushing these important big steps. The medical team tells us that these early days postoperatively, and while in ICU, is a balancing act. Lucian is intubated and a machine is breathing for him. They are trying to wean off of need for oxygen and a multitude of medications and drips, but it’s a delicate process. They have to slowly wean and see if Lucian is able to tolerate it. They are closely monitoring his blood pressures, oxygen levels, saturations, heart rate, urine output, etc. The back and forth of drips and meds are normal and what they would expect at this point in his journey. Today, he has been more awake and in more pain. These were hard moments to witness. As a mom, and I’m sure Will would say the same as a dad, it is really hard to witness your child in pain and not really be able to do anything. Our nurse has been amazing at advocating for him and giving medications that will keep him comfortable and sleepy. Otherwise, he is doing well.

We are taking every bit of good news and praising God. We know we have a long road ahead of us, but we are one step and one day closer to our family being back together.

We are doing ok and holding it together. We are obviously having moments where we are sad and scared, but are definitely feeling the prayers that everyone is sending our way. We miss Galen and Grey. They are having a great time at Luddy and PopPop’s, but we miss their jokes, personality and, most of all, their company.

Prayer Requests

💙

Lucian’s vitals remain stable and that he is able to tolerate coming off the medications they want to wean.

💙

Continues to pee and get fluid off.

💙

Lucian’s surgeon is able to close his chest in the next day or so.

💙

We are able to keep moving in the right direction, with only minimal-to-no setbacks.

The Heart Board!

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Thank you so much for the love you showed us this week with the “launch” of our blog. It’s scary to put some of our thoughts down on “paper” but it’s also important to us to have a big army for Lucian! Everyone who reshared our story on their Facebook or Instagram was really touching. It’s difficult to put to words how much that meant to us. We received lovely messages and donations from people in all parts of our life! We are so blessed!

As promised, here is the Heart Board picture we said was coming.

(💙  over already sponsored hearts)

About the board:

We wanted to have something tangible in our home to show Lucian how much he is loved and cared for, which inspired us to make this Heart Board. On the board, there are 200 hearts, all numbered with a dollar amount. To show your support, you can purchase a heart, which we will flip over and dedicate to you by writing your name on it. We will hang this board in Lucian’s nursery. You can claim a heart using the Venmo or Paypal links below or send us an email if you prefer snail mail. Check back here to see what numbers are still available. But don’t delay, cause they’re selling like hotcakes! 😉

Venmo: @lightforlucian

Paypal: lightforlucian@gmail.com

If you would love to buy/donate, please let us know! We are so grateful for your support.

Also, don’t forget to get your shirt or sweatshirt over at Bonfire! Our hearts are so full knowing so many people will be sporting Lucian gear!

💙  The Kingsley’s

Lucian Theodore

/ lightforlucian / 5 Comments

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

Let’s get started…

/ lightforlucian / 6 Comments

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