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
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Lucian’s vitals remain stable and that he is able to tolerate coming off the medications they want to wean.
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Continues to pee and get fluid off.
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Lucian’s surgeon is able to close his chest in the next day or so.
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We are able to keep moving in the right direction, with only minimal-to-no setbacks.
Light for Lucian 