Sternal Chest Closure | TGA Baby’s First Footprints | Recovery
We slept at home the night of Leyton’s open heart surgery after the nurses strongly encouraged us to get some rest. Leaving the hospital without him felt foreign and wrong. However, I was emotionally and physically exhausted from delivery coupled with my crash course in becoming a TGA mom. Laying in my own bed felt like a dream. Until I flashed back to Leyton in his isolette and immediately felt guilty. I called for updates while I pumped every few hours, but got some sleep in between.
When I woke up the next morning, my anxiety was at an all-time high. The longer it took us to gather our things and get dressed, the more stressed I became. I’ve never struggled with clinical anxiety in a chronic sense, so I can’t speak to that experience, but this was the closest I’ve ever felt to it. My skin crawled and I could barely catch my breath. As soon as we pulled up in front of the hospital, I told Jordan to stop the car so I could jump out and run upstairs. If I had to wait the extra 5 minutes to park in the underground structure, my heart would’ve jumped straight out of my chest.
Seeing Leyton again and spending the day with him calmed me down a bit. Being back by his side only confirmed that I’d rather sleep in a chair next to him than in my beautiful, cloud-like king bed without him. Annnnd my transition to motherhood was officially complete. Ha!
His chest was left open after surgery due to swelling, which is not uncommon for TGA babies post-op. We weren’t able to hold him while his chest was open, so it was a very long few days. Everyone copes differently, but one thing that I found helpful was learning as much as I could in that time. It was incredibly difficult to witness our child hooked up to so many machines after surgery, but focusing on how they worked and what they did for him made it a bit more bearable. The nurses were fantastic about simplifying medical terms so I could understand them and by the end of our stay I felt pretty well versed in TGA and COA.
Immediately post-op Leyton came back on a ventilator for full breathing support, plus he had a number of tubes and IV’s. He had a central line stitched into his neck, three large chest tubes draining blood and fluid, IV’s in his hand and foot providing easy access for medication and fluids, ECMO pacing wires in case he needed to quickly be placed on full heart and lung support (he thankfully never needed them), a blood pressure cuff on his calf, a pulse oximeter on his foot to monitor oxygen levels, leads on his chest and back to monitor his heart rate and respiratory rates, and probably missed a few…it was a lot!
When you think about it, the main goal of recovery was to get his body to take over and relearn to do everything it was supposed to. During surgery his heart was stopped and he was put on bypass. So for a while his body wasn’t breathing, eating, or even pumping blood on its own. How awe-inspiring to witness him progress from complete dependence to doing it all on his own in a matter of weeks! There came a point in recovery where tubes were flying out left and right. We celebrated as the team wheeled each machine and oxygen tank out of his room one by one. It was an amazing feeling.
We spent the next two days monitoring him, learning his meds, routines, and asking the nurses a trillion questions about TGA and COA. One of the wonderful things about being in the CTICU was a nurse was assigned one on one to Leyton for their entire 12 hour shift. At times I struggled and felt a bit like I was co-parenting with them. I longed to make decisions about his care on my own like any other parent, but I was so appreciative of their expertise and the care they poured into my son and my family. We really got to know them and I still think of them fondly. They are saints, I tell you. Literal angels in disguise!
One of my favorite memories in the CTICU was day 6 when we stamped Leyton’s footprints. I don’t even remember how it came up, but Nurse Nikki asked us if we got his newborn footprints yet and before I could even finish telling her no she left the room. She returned with arms overflowing in art supplies as she rattled off all her crafty ideas.
My mom and sister were there too, so it became a family affair. Jordan pulled out his laptop to Photoshop a blueprint of our vision (“We only have one shot to get it right”), the girls and I discussed our ideal color story, and before we knew it the room erupted into chatter and laughter.
We made a few variations out of his little feet and hands, and I cherish the memory as one of the “normal baby” experiences we were lucky to have in the hospital. I was so focused on learning about his condition, it was nice to focus on my newborn son rather than my “TGA baby”.
We slept at home one more night before moving back in with him full time. When he was one week old, 3 days post-op, they finally closed his chest. His was left open a little longer than most TGA cases because he had so much extra swelling from the post-op hemorrhage. He received a massive amount of blood products, so it took his body (and a whole lot of Lasix! – a diuretic) a while to work off all the extra fluid.
His ICU room was converted into an OR and they performed the procedure right at the bedside. We waited outside the hospital and got some fresh air. We had (and still have) some significant PTSD from his open heart surgery so even though the chest closure was in a completely different league in terms of risk, we were still extremely nervous.
Thankfully, the procedure went well! We were reunited with him after an hour and a half or so. The nurses joked that Dr. Wiggins, the new surgeon who performed his chest closure, should have been a plastic surgeon because his sutures looked so flawless. I guess I can credit him now, 13 months later because Leyton’s scar is so faint! The scars where his chest tubes were are much more noticeable. Not that I mind either way. I hope he grows to be proud of his scar and all it represents. 🙂
Apart from a few hiccups along the way, the rest of his recovery was slow and steady. Next week I’ll share the rest in a final blog post about his first hospital stay.
His next cardiology check up is coming up in a couple weeks and the anxiety has already set in. All I can do is hope the improvement we saw after his last intervention is holding steady. As heart parents it can feel like we’re perpetually waiting for the other shoe to drop. We’ve been blindsided so many times when it comes to our child’s health, I can’t see a way to fully release ourselves from that feeling. For now, I’m going to do my best to stay positive and enjoy the beautiful memories we’re making at home with our healthy boy. We have so much to be grateful for. ❤️
