Jessica's Story Part 5: Hudson’s Heart

The first few weeks of being home with Hudson were a huge adjustment. Due to sickness in general and Hudson having a compromised immune system, we didn’t allow any visitors. The last thing either of us wanted was to have to go back to that hospital. We were terrified for one of us to not be awake when he was sleeping (even though we had him monitored by the pulse ox machine), so we took shifts the first few weeks. The organization was very important because Hudson had 8 medications daily, along with many other medical supplies. Within a few weeks, I had his medication names, dosages, and how many times to give per day memorized.

We had so many follow-up appointments that first month and they never seemed to be on the same day. Each time we had an appointment, we had to load up the whole house and by the time we got home, we were exhausted. The day after we brought him home, we had to take him to the pediatrician. We had just gotten everything and ourselves loaded in the car and looked at each other and said “how are we going to do this??” But, just like any first-time parents, we figured it out. We got into a routine and found ways to make our lives simpler. We also got more comfortable sleeping at night with Hudson next to us in the bassinet. His pulse ox would go off here and there but for the most part, his oxygen saturations were within range.

Those first few weeks at home with Hudson were bittersweet. I loved having him home, feeling like a normal mom with a newborn. In the middle of the night snuggles were my favorite. However, every so often I would feel the dark cloud looming over us. We were living in a safe little bubble, but I knew that eventually, we would have to go back, that we were not free of hospital stays. I would rock Hudson to sleep at night and cry thinking about having to go back. I had anxiety every time we had to follow up with cardiology because I was terrified they were going to say we had missed something and needed to admit him immediately.

Cardiology was very pleased with how well Hudson was doing at home. My fear of being readmitted eased up after the second follow-up when they reassured me how well he was doing. At the time of discharge in June, he was just under 6 lbs (less than 3 kg-weight is measured in kg in the cardiology world). The goal was to get him to 4 kg, or over 8 pounds. They had told us that eventually, Hudson would outgrow the bands so he would need surgery when we started seeing his saturations consistently stay below range. Come August, he had surpassed 4 kg and he remained stable with his oxygen. The cardiologist said we could wait one more month but that he would discuss Hudson at Heart Boards in September and we would aim to schedule surgery at the end of September.

We were scheduled for surgery on September 29th. They called me to schedule it at the beginning of September, it was tentatively scheduled for September 29th. It was starting to get to me that we were going to have to relive everything. I felt like we had just gotten to a comfortable place with him at home. Not only was Hudson thriving at home, but we were also thriving as his parents. We were no longer intimidated by all of his medical complexes, we knew him best and knew how to best take care of him. Therefore, we knew he wasn’t acting himself the Saturday before his surgery.

We saw the pediatrician the Monday before his surgery was scheduled and had him tested for Covid, RSV, and other respiratory viruses. He was negative for all except rhinovirus (the common cold). When cardiology found out that he had tested positive for a virus, they gave me a call. They would not be performing the surgery for at least 4 more weeks because of potential complications that can occur with a lingering virus.

Holy shit, 4 more weeks, we have to keep him healthy for 4 more weeks!?!?

Those next 4 weeks were spent in lockdown mode. I was back at work at this point but would stay in my office and wear an N95. It was frustrating that we had to reschedule, but it gave us another 4 weeks with Hudson and meant that he would be bigger and stronger for his surgery. Hudson’s open-heart surgery, a Yasui procedure, was rescheduled for Monday, November 1st.

Typically, surgeons would do a traditional repair of the arch and patch the VSD with Hudson’s heart defect. However, due to the pathway to the aorta being too narrow, a traditional repair was not possible, as it would lead to bigger problems with the blood flow. There were two possibilities, doing a Yasui procedure in one surgery or staging the surgeries, which would mean Hudson would have to undergo two open-heart surgeries within a year. Ultimately, the Yasui procedure was the route the surgeon chose to go. It would be a very long surgery.

We had to be at the hospital at 6 o’clock in the morning, so we stayed in a hotel 2 minutes away. The night before, I barely slept. There was a sense of dread in the days ahead. When we pulled into the parking garage of the hospital, we just sat in the car for a few minutes. We would give anything to be able to drive away and protect Hudson from all of this but we knew we couldn’t do that. So, we got out of the car and made the dreaded trek to the surgical floor. At 7 am, anesthesia came to take him. It’s hard being in this situation because as much as we didn’t want to hand him over, we knew we had to. Hudson had to have this surgery in order to survive.

Once the surgeon started his part, we received updates every hour. Our last update didn’t come until almost 6 o’clock pm. The surgeon’s part was done, everything went as planned but we would continue to be in the risky period for the next 24-48 hours. We wouldn’t be able to see Hudson until he was situated in the CICU. That wouldn’t be for another two hours. Walking back into the CICU, it was almost like we never left. This time wasn’t as big of a shock for us because we had been here before. We knew to expect all the tubes, wires, beeps, and swelling. The next two nights, we would stay at the hotel. There is no sleep to be had those first two nights after surgery. Two nurses are usually in there talking and charting every single thing.

The first two days, the main goal was keeping him comfortable and getting fluid off of him. Hudson’s chest was left open after the surgery due to the swelling. We were able to see his actual heart beating, which is something most people can’t say they’ve experienced. On Wednesday, the surgeon was able to close his chest but he remained intubated. According to the doctors and nurses, Hudson was progressing well given how big of an operation he had.

The Thursday after his surgery, Hudson was extubated successfully. We even got to hold him, which made us feel so much better. The nurses were all very excited about how well Hudson was recovering. There were talks of us going to the step-down unit in the upcoming days and then possibly being discharged the following week. It was insane to me that we could possibly go home that quickly and now that we had been home, it was all I wanted. I did not miss the hospital life.

That same day, Thursday, the room next to us became occupied with a baby (I would come to call him Baby G) who had just undergone surgery. I saw the parents, and my heart ached for them because I knew how they were feeling seeing their sweet baby right after surgery. I told myself if the opportunity presented itself, I would strike up a conversation with the mom, after all, we heart mommas had to stick together.

In the early morning hours the next day, I woke to many people shuffling back and forth from our neighboring room. With Covid, the visitor policy was very strict, only the parents were allowed back, so to see that many people coming and going told me things were not progressing as they should. That is why the surgeon always told us the first 24-48 hours are the “critical period” after a surgery.

On Sunday, almost one week out from Hudson’s surgery, we were sitting in the room. In an attempt to provide some privacy to the family going through hell next door to us, we kept our door and curtain closed. Hudson was still in a lot of pain and was crying out constantly. I was trying my best to keep him comfortable. I heard someone come to our door and peek their head in, then I heard crying. It was the mom from next door. She came to tell us that hearing Hudson cry these past few days comforted her and how much she wished she could hear her baby cry. Jarrod froze and looked at me but I was already running to the door.

I hugged that momma so tight and cried with her. I didn’t have much to say, just listened. Her sweet boy, only 6 months old, had gone into cardiac arrest and ended up on life support the night after his surgery. They were withdrawing care later that day. We talked for a few minutes and I told her how sorry I was and how unfair it was.

There hasn’t been a day going by that I haven’t thought about Baby G and his momma. That experience completely changed my outlook on life. I was done worrying about silly things that in the end didn’t matter. I don’t take one second with Hudson for granted and celebrate every achievement, no matter how big or small. The next few days after Baby G passed away, I felt numb. It was very hard to celebrate Hudson being moved to the step-down unit knowing the hell another heart family was going through.

However, the days continued to pass and the plan was to take the chest tubes out and within a few days, go home. Hudson had other plans. More than a week after his surgery, his white blood cell count became very elevated. It continued going up each day and they had no idea why. Here we go again, I thought. They tested him for everything they could think of. All of it came back negative. Once again, Hudson was a mystery. They started him on a broad-spectrum antibiotic, which meant we would not be getting discharged in the upcoming days.

The following Friday, his heart started going into bigeminy, and to keep a closer eye on him, they transferred him back to the CICU for a few days. They began him on propranolol and it helped, so that was added to the medication list. By Monday, I was over it and ready to go home. Don’t get me wrong, I did not want them to discharge him too soon but I was ready to go home and sleep in my own bed.

He was moved back to the step-down unit on Monday to finish out the antibiotics. Hudson was finally starting to feel better and we were even getting some smiles from him. They never found the cause of the elevated white blood cells. That Friday, after 19 days, he was discharged. A very different inpatient stay than the last but still a very emotional one.

Having open-heart surgery does not fix a child’s heart completely. Congenital Heart Defects are something the child will always live with. As you’ve seen with our story, other issues typically arise with heart defects that require multiple therapy interventions. On top of therapy appointments, multiple specialties are involved in monitoring the child’s health. It doesn’t end with having surgery, really it is just the beginning.

Hudson will have a life full of follow-ups, therapies, and monitoring. However, he has already shown just how strong he is, so I know that he will overcome any obstacle thrown his way. As for me, I’m in a much better place than I was 8-10 months ago. I still have my days, and I think I always will. There are days I hear beeps at work and have to take deep breaths to remind myself that I’m not back in the hospital with Hudson. I never, in a million years, imagined this is how I would experience motherhood for the first time, but I wouldn’t trade it for anything. Being Hudson’s mom is the absolute best job in the world.

I appreciate everyone who took the time to read my story. I hope that our story can serve as an inspiration to others who may be going through something similar. It is hard to believe that in just about 6 weeks, Hudson will be 1. What a story we will have to tell him one day, the incredible story of Hudson’s Heart <3.

Next week you will hear Tyler's story. As always, our story will continue every Monday. Please subscribe to my site to continually be updated on new posts and specials!

If you have enjoyed hearing Jessica's story, please consider making a donation in honor of Hudson to help many other heart parents in the same or similar situations. Every bit helps!

Also, please reach out to Jessica and let her know what a fantastic job she did share her story. It is not an easy subject to talk about and all moms want to know that they are doing a good job!

Thank you so much to Jessica for sharing her story, I look forward to updates on baby Hudson and being able to share them with you all. We all are rooting for baby Hudson, what a little warrior!