Jessica's Story Part 4: One Step Forward, Two Steps Back

It had been almost a week since Hudson had his PA bands placed and he was still on the ventilator. The biggest concern was getting fluid off of him and making sure his lungs were set up for success. I made the trek to the hospital every single day. It was my routine now and I think I could have made the drive in my sleep.

Compared to the CICU, the NICU was all sunshine, rainbows, and lots of hand-holding and I missed it. The CICU was full of beeps, codes, and watching trends on the monitors. It’s hard to explain but any heart mom that started in the NICU and then transitioned to the CICU knows what I am talking about. Don’t get me wrong, the staff in the CICU were amazing and very good at their jobs. I will always be so thankful for all the staff on that floor that came to be our second family.

8 days after the surgery, Hudson was extubated and put on a nasal cannula. He was still on the prostaglandins medication, which was crucial because it was keeping the PDA duct open, which supplied blood to the lower part of his body. On April 19th, almost a week after Hudson was extubated, I left to go get my Covid vaccine. I had held him that morning and was watching his oxygen saturations. They seemed a little off to me, but I was still learning what everything meant. I even asked the attending doctor if we needed to be worried about his sats being high because the whole point of the PA bands was to prevent too much blood from going to the lungs.

I had just pulled back into the hospital when Jarrod called frantically telling me he didn’t know what was going on but nurses and doctors were all in Hudson’s room and he was being intubated again. That fucking breathing tube. I raced up to the CICU and was stopped by a nurse. They wouldn’t let us go back, so we had to go to a private waiting room. I felt like a crazy person.

After what seemed like an eternity, the doctors came to talk to us. Hudson was now stable. Essentially, after I left he became unstable from a respiratory and cardiac standpoint. They upped the prostaglandins and had no choice but to intubate him. An emergency echo showed that the PDA had started to restrict, which meant he was losing blood flow to the lower part of his body. We now had to wait and see if the increase in prostins would keep the duct open.

I refused to leave him that night. I was so mad at everything and everyone. How much more was my sweet boy going to have to go through. I sat and stared at him, ventilated again, and thought,

"It has been a little over a month and we are still right where we started".

I now knew what other heart moms meant when they said ‘expect the trend to be one step forward, two steps back.’

The next morning, the echo didn’t look very different and they were still worried about the PDA being too restricted. The surgeon walked in and mentioned that he “had never seen a PDA do this before.” Great, I thought, just what you want, the baby that confuses the surgeon. He went on to say that they needed to place a PDA stent, which would keep his PDA open and allow him to come off the prostins. This, combined with the PA bands, were temporary band-aids that would give Hudson the time to grow and give him the best shot of only having to go through one open-heart surgery, versus a staged approach to those surgeries. Placing the PDA stent would be done in the cath lab.

The next day, I signed yet another consent and they wheeled Hudson off. The stent placement was about 4 hours total and was successful. The doctors were hopeful that this was what he needed and would even allow him to be able to go home before the big repair. The thought of taking Hudson home before his heart actually being fixed was terrifying! However, we still had a ways to go before that became a reality. We now had to work on getting him extubated (again), and work on feeds. Since birth, he had been fed through an NG tube so I was anxious to begin working on that skill.

It had been a solid two weeks since the PDA stent was placed. He had been extubated and weaned off all oxygen, however, we had not been successful with oral feeds. Speech had worked with him for a few days but by the third day, he had reflux that caused his sats to drop, so we had to put that on hold for a few days. He also had an NEC (Necrotizing Enterocolitis) scare and they had to hold his feeds for a few days. It always seemed like there was something, and it was affecting his growth. Since the PA bands were placed he had not gained much weight. I was getting anxious because I knew how important it was for him to grow.

We were only a few days past him having no oxygen support that his oxygen began to drop, so the nasal cannula was put back on. He was also unable to take oral feeds without refluxing and desatting, so all oral feeds got put on hold. Then, his breathing changed and it seemed like he was struggling to catch his breath. The doctors chalked all of this up to reflux. To me, being a first-time mom, I wasn’t sold that this was all reflux-related. I was terrified they were missing something. To top all of it off, he still was not growing.

The neonatologist came back on board to address his growth and she was the first one that mentioned a g-tube to me. I became very emotional. I had seen on heart mom support groups that many heart warriors end up needing feeding tubes but I was in denial that Hudson would be one of them. I also had it in my mind that I would still be able to breastfeed, but with each passing week we were in the hospital, that dream continued to slip away.

In the early morning of May 6th, we got a call that Hudson’s breathing became worse overnight. They had to make the decision to put the breathing tube back in. That phone call completely rocked my world. When I walked into Hudson’s hospital room that day, I lost it. All I could think was we are back to where we started. I felt beyond defeated. We were two months in and I couldn’t see an end in sight. They did test after test trying to determine what caused his breathing to change. All those tests and we circled back to reflux. Who knew reflux could cause so many damn issues.

Hudson remained on the ventilator for about 5 days. I spent my first Mother’s Day with my son being intubated and sedated. I was so bitter and pissed at the world. WHY?!?!?! I just kept asking…WHY?! People would tell me I was strong, that God chose me because he knew Hudson needed a strong mama. When people would say that my thought would be ‘Well I would really like to ask him WHAT THE HELL WERE YOU THINKING!?’ I didn’t feel strong, I felt so defeated and I didn’t know how much more I could take. It was hard to imagine what the future would hold for all of us and it scared me.

Then one day, I walked into the CICU and could tell something was different. A patient that had been there longer than Hudson, their room was empty. They had just been in there the night before when I left. A quick scan around the CICU gave me my answer. The patient was two months shy of being two years old. That was the first encounter of death I had in the CICU, and it hit me hard. I had only spoken to that patient’s mom one time in passing, but to this day, I still think of her and her little girl. It was the moment I realized that whatever was going to happen, was out of my control but that I would not give in to the depression and anxiety of not knowing. I had a purpose, Hudson, and he needed me now more than ever.

That same week, they were able to extubate Hudson once again. They completed an upper GI study and swallow study. He did not aspirate on the swallow study but his upper GI showed very bad reflux. They began omeprazole, the strongest reflux medication but warned us it would take weeks to take full effect. His sats were still not exactly where they wanted them to be and he was still requiring oxygen support. One late afternoon, three doctors came into our room to talk to me. They needed to go back to the cath lab to widen the PDA stent more, to help his heart not work so hard, which would hopefully help him gain weight and get his oxygen saturations to where they wanted them. I remember thinking, why did it take three of you all to deliver that news?

“Anytime we take a patient to the cath lab, they have to be intubated…” Oh, that’s why. Tears fell instantly. We had JUST gotten past all of that and now they were telling me he was going to have to have that fucking breathing tube put back in?! They promised me that if Hudson was stable enough, they would take it out as soon as they possibly could. The next morning, I signed yet ANOTHER consent, and off to the cath lab, he went.

About a week after the second cath lab visit, it seemed like he was finally doing what they wanted him to. However, he was still having reflux and it was evident that the g-tube was needed. The plan was to do three procedures in one; the g-tube placement, a Nissen fundoplication (to help his reflux), and bilateral hernia repair. Hernias were common in premature babies. There was more talk of “going home” after these surgeries, but Jarrod and I both didn’t want to get our hopes up.

The surgeries were completed within a few hours and Hudson came back intubated once again. At this point, I lost track of how many times that damn tube was in. Thankfully, they were able to extubate after a few hours, and the next day, they began using the g-tube. A few days later, the doctors were finally all on the same page in regards to Hudson being discharged. They wanted to send him home to allow him to grow for his next procedure and kept saying, babies thrive at home.

In the days leading up to Hudson’s discharge, we were required to do Care by Parents for 48 hours and were visited by so many people. Hudson had become well known in the hospital, some were just coming to say good-bye, some had education materials for us, like PT and OT exercises and some had the equipment we would need at home. He would need a pulse ox machine, oxygen tanks (just as a precaution), g-tube supplies, a nebulizer, 10 medications, and LOTS of follow-up appointments. I remember them handing me a list of follow-up specialties: cardiology, peds surgery, endocrinology, immunology, nephrology, genetics, and neonatology.

I broke down to my husband multiple times, asking how the hell we were going to do all of this and keep our full-time jobs. “Let’s not freak out about that right now, it will be okay, we will figure it out.” But I was a planner and had no plan. No daycare was going to take Hudson, nor did I want him going. My work had already suffered the past few months, how much more could it take? And, not to mention that we were going to have to come back for another heart surgery. If we were here for 3 months this time, how long would the next stay be?! My mind was racing with so many thoughts up until the day we got discharged.

It had been 88 days since I had Hudson and we were finally taking our sweet boy home. Leaving that hospital was a surreal feeling. The nurses and doctors lined the CICU and celebrated as we walked out. At that moment, I forgot all about the stress of our jobs, medications, follow-up appointments, and PT exercises. At that moment, I finally felt joy. A joy that, unfortunately, not every family in the CICU got to experience, so I wasn’t going to take it for granted. We still had many obstacles in front of us but after 88 days of pure hell, we were all home as a family and it was a good feeling.