Warrior Wednesday

Liam, 2yrs old

HLHS with hypoplastic aortic arch

Liam was born on March 2nd of 2023. We had found out at my 20 week anatomy scan that they were having a hard time seeing the left side of his heart. We were then sent to the Fetal Care Center at Childrens Colorado where they performed an intensive ultrasound and echo. It was confirmed that the left side of his heart had never formed. The Fetal cardiologist pulled us into a conference room and told us that he has Hypoplastic left heart Syndrome with a hypoplastic aortic arch. His case was severe and they gave us the options right there. Option 1 being to terminate the pregnancy. Option 2 was Liam could undergo 3 major open heart surgeries from 0-5 years of age, with heart caths in between and most likely will need a heart transplant down the road. Or Option 3 was we could give birth to Liam and let him live a few short days before saying goodbye. 

We chose the Surgery route. We had previously had a miscarriage with our first pregnancy and when we thought about letting Liam go we just could not fathom. Once we made our decision within that 24 hours of being at the fetal care center we got booked out there for all future appointments. They told us that we would need to travel once a month to see the Fetal Care Center and  we would need to re locate for the time being to Denver from Grand Junction a month prior to Liam’s due date so everyone was ready for when he made his appearance. He was completely stable inside the womb. He had no problems during pregnancy. He wasn’t telling us he wanted to come out so we made the decision to make an induction date at 39 weeks. Flashback when I was 26 weeks pregnant I underwent a Heart Cath myself while I was pregnant with Liam. I had a stent placed at UC health. I have had a CHD since I was born called coarctation of the Aorta. Liam made it through my surgery and that’s when I really knew we had a WARRIOR. I never had an ounce of energy the rest of my pregnancy where I felt like Liam wasn’t going to make it. So on March 2nd I went in for my induction and we had barely begun anything when Liam’s heart rate went really slow…then it would shoot back up…then he’d scare us all again.. then we COULDNT find it. They prepped me for emergency surgery got an emergency epidural placed and he made his appearance via C-Section. He was doing great, I on the other hand had an allergic reaction to the epidural so I only held him for about 30 seconds before they took him to start his lines and meds. I was trying to recover from my allergic reaction and before I knew it he was getting transferred  across the street to Children’s. I had to give birth at UC health due to my CHD and if I had any complications. I recovered at UC health while Liam was over in the Cardiac Intensive Care Unit. He was on a med that was keeping his duct open for the meantime. My husband Alejandro was going back and forth between us for 2 days until I was finally released and able to go see my baby! This is when the storm really began to hit hard. Liam started going into SVT where his heart rate would jump into the 200’s and just stay up there. They were having to push lots of EPI and emergency meds and shock him to get his heart rate to come down. This kept happening. He had a really hard couple days then they made the decision to get him on the schedule for his 1st big surgery the Norwood. They were trying to wait because Liam had dropped down into the 4 pound range and they wanted him a little bigger, but his heart told us he was ready and I was ready. He didn’t have any SVT through his entire surgery! He did amazing! His surgeon who is a man of few words but we absolutely adore tells us “well that was boring” because he had behaved the whole time! Which we were so thankful for. He stayed down in the CICU for about a week then got moved to CPCU for on going recovery. In his first surgery they nicked the nerve for his vocal cords and we had found out through a swallow study that he had vocal cord paralysis and was silently aspirating every time he swallowed drinking from a bottle or attempting breast feeding, so this meant we needed to talk about getting a g-tube placed. He then went into surgery for his G-tube placement. We had gone through all the training we needed to to bring him “home” to the Ronald McDonald House waiting for his second open heart surgery that we were told he would have around 6 months of age. He was still very fragile at this point so they wanted us to stay close by. Well a few weeks went by and we were checking Liam’s stats multiple times a day per usual and he was stating really low. Like in the 50’s! We had just gotten back from a weekend trip to Grand Junction that we had gotten permission to do for Mother’s Day weekend. As we pulled into the Children’s ER they took us right back and we were admitted into CICU where Liam needed high flow to get his oxygen stats back up. After a few days we were able to wean him to a higher dose of low flow and he went up to the CPCU. He was too little and too young for his Glen his second big surgery so they kept us in patient until he gained enough weight to get his Glenn. His Shunt from the Norwood was closing and that’s why is oxygen tanked. Liam went in for a Cath to check his pressures and he went into complete heart block. This may have been the worst day of our journey so far. My husband was in Grand Junction back at work, I had told him “no worries it’s just a Cath, and this will give us some more answers”. When the Surgeon came out I could just tell something was not right, he sat down next to me and told me Liam went into heart block and they were having a really hard time getting him back but “the team was still working on him”. I silently panicked. I  was in shock. I asked him “ do I need to come say my goodbyes” and he said he’d be right back to check on the situation. At this point he had brought in two other surgeons to help. That was the longest 10 minutes of my life but I just leaned in hard to my heart warrior mamas I had sitting next to me. I am so grateful they took the time to come wait with me. He came back out and said they got him stabilized enough but he was intubated and heading back to CICU. He stabilized out enough that we got the the tube out and was back on high flow, then eventually low flow. Up we went to CPCU a few days later. They confirmed Liam’s heart was ready for the Glen so within a week we were on the schedule! Liam got his Glenn at 3.5 months and we stayed in patient for most of the time between his Norwood and Glen. He ROCKED the Glen. We stayed in CICU for about 5 days then headed back up to CPCU. ( Glen head is a real thing) Liam was there for about a week and then they discharged us to Ronald McDonald. From there we stayed local for 3 more weeks. We came to children’s multiple times a week and we were just monitoring him closely. We then finally got to come HOME to Grand Junction the week of 4th of July. Liam came home on lots of meds, oxygen, and a g-tube. We were able to fully wean him off oxygen after about 2 months, unless we were going to altitude. Liam weaned off his g-tube in November and by January of 2024 Liam had weaned off most of his meds and we are down to two meds a day! Liam receives lots of PT, OT and Speech therapy. In 2024 he got a Cath procedure done to get a couple stents placed. I was a nervous wreck after the last Cath but this one went MUCH smoother. We were out of the hospital after one night! That was the only hospital stay we had in 2024. The rest of the time we soaked up making memories and Liam got to just be a typical toddler.