Heart Hero of the Month January 2022
by, Liam’s parents
The start of Liam’s CHD journey began long before he was ever born. Going back to our twenty-week appointment, where we were scheduled to have his body scanned to see how well he was growing and also where we would find out that we were having a boy. At this appointment, we also experienced what we personally refer to as the “frying pan” moment. We went into the appointment, excited to find out what we were having. We were so excited to find out we were having a boy. Then came that “frying pan” moment. The doctor told us there was some “bad” news and sat us down. He told us that the left ventricle of Liam’s heart didn’t form all the way and that he wasn’t completely sure, but that his heart might be on the other side of his body. It truly was like getting smacked in the face with a frying pan. This news was something that we never expected. The second the doctor walked out of the room, all the emotion and fear in the world rushed in.
We were now given an unexpected journey to embark on. We had no idea what to truly expect and it was truly terrifying.
As time got closer, with working with our doctor, we had developed a “game plan”, and were hopeful that everything would go to plan. So even though things were scary, we had a plan in place so that we knew when we would have him delivered and taken to Omaha Children’s Hospital to get the best treatment.
About a month before he was to be induced we had to take a little trip to the hospital. By a little, I mean we were there for a week. Being given every med they have to keep little Liam from coming early, but being ready in case he did.
On October 23rd, at around 9 pm, we checked into Bryan Hospital in Lincoln. This was the day we planned on. The time has finally come. Time to be induced and start the process to meet Liam. That following morning, early in the morning, they began giving the meds to induce Liam. Then that afternoon on October 24, 2020, Liam was born.
What felt like almost immediately, Liam was taken and rushed to another room, where he was being treated and prepped to be transported to the children’s hospital. His dad was able to go see him right away and relay back whatever he could see, there was a lot going on. I was glad they wheeled me over there so I could hold him before they were ready to transport him. There were so many feelings at that moment. We knew we wouldn’t see him for a while and that was hard. Once they left, they still needed to finish up everything with me so that we could be discharged and go up to see Liam.
When we made it up there, we found Liam’s room in the NICU. He was all hooked up to everything imaginable, the whole nine. It was all overwhelming and we weren’t sure how to process everything, but we knew he was in good hands. They explained how he had AVSD, Dextrocardia, and Pulmonary Stenosis. They did their best to explain it and I think we basically understood even though the heart is pretty complicated. We knew that they had to do whatever they could to keep his oxygen saturation up. He dipped a lot and that was kind of the main thing to treat. We also knew he would eventually need some surgeries.
Within those first few days, he was put on an EEG monitor as he was seen to potentially have seizure-like movements. So they spent a few days monitoring his brain activity around the clock. Which ultimately was kind of inconclusive, but they treated him as if he had seizures just to be cautious. They also discovered that he either had asplenia or polysplenia. Either way, he has no working spleen. So that kind of added to everything.
As time went on, he started refusing bottles more and more, so that’s when we met with a GI doctor and they wanted to have a G-button placed. So we got everything scheduled and went in to have another surgery in February 2021. They wanted to start with a Peg tube and when it would be ready to be switched out they’d put a G-button in. So they did the surgery and the tube was placed. He came out and things did not go well. A few days later, they discovered he had developed an abscess around the tube site and they would have to go back in for another surgery and clear out the abscess and would go ahead and place a G-button. Basically, 30 minutes after deciding on this plan, he was heading right into surgery. A couple of hours later, it was done and all was well. The following day we were back home.
On March 2nd, 2021, we went into the Beatrice ER because he was needing extra oxygen. The next thing we knew, he was being life-flighted up to Children’s. It all happened so quickly. Back in the hospital again. Up at Children’s, they treated his oxygen needs and worked on getting to the bottom of what the problem was. It all pointed to the Glenn procedure. It was a bit earlier than planned, but it was about the only option. They took him in for another heart cath to get prepared for the surgery. Then on April 23rd, 2021, they performed the Glenn procedure. The surgery went well. This one wasn’t the easiest recovery. He was still requiring oxygen, as isn’t totally uncommon during recovery, but the hope was he’d come out not needing it. They really couldn’t figure out why this was. They did another heart cath and put in a stent to help with blood flow between both lungs. That was about all they could do at the time. During this stay, they did add the diagnosis of a right aortic arch, adding to our little list of things. Then they just monitored things for a while and we stayed in the hospital until June 1st, 2021 and they had decided to train us on using oxygen and sent us home on it.
In the first couple weeks of November, a couple of weeks after he was born, he had his first heart catheter procedure to get good pictures of everything in his heart. Then fast forward to his first open heart surgery on November 20, 2020. They placed a PA band on, to hopefully help the oxygen issue. Really all went well and the long recovery process began. He had another heart cath to make sure the band was still placed correctly. On December 18, he finally got off oxygen, and we were able to go home on December 21, 2020. Just in time for Christmas and to spend it with his brothers.
Since our time in the hospital, Liam has continued to have more checkups, a sleep study, and a CT scan. He’s been diagnosed with sleep apnea and tracheomalacia. More diagnoses, but not more answers.
Liam has had 2 open-heart surgeries and 4 heart catheter procedures. One day he will require the Fontan procedure, but the doctors say that isn’t for at least a few more years. We have been out of the hospital since June 1st and Liam has made a ton of progress. He has gone from not even being able to roll over, to be able to roll over front and back. He can sit up, he can crawl, and he’s even started pulling himself up to stand. This kid is going to be walking in no time. Thanks to his aunt letting him try her pumpkin pie, he has even given food more of a chance, even if it’s a little taste, progress is progress!
Liam’s cape is a reminder that we aren’t alone. There are so many Heart Heroes out there, fighting the good fight!