Continued from six months of living…

When we first learned of the diagnosis, we cried a lot, and asked God, “Why?” After a particularly difficult last couple years, we couldn’t understand why we were not invincible to this pain, or given a free pass complete with a miraculous cure for our child.

At the cardiologist appointment, we had discussed Everett’s weight, and, still, he was not at his birth weight. Knowing what our child had to accomplish in a few months, I immediately stopped nursing and started pumping, needing to know why he wasn’t gaining weight and what he was actually taking in. And, I got my answer – an ounce. Total.

Thus, began the first inkling of a problem. I pumped overtime to build up my supply, in hopes that at some point Everett would take normal bottles. But, it took lots of coaxing and tears for him to finish the single ounce.

And, then the first domino fell. It was late. Austin was in bed, and Everett was extra unhappy this night. We rocked. We walked. We sang. We fed. We swaddled. And, still he screamed. The hubs decided to change his diaper for the hundredth time in hopes he would settle, but, instead he raced to me with a horrified look on his face. He removed Everett’s diaper, and there it was… a hernia… on our three-week-old.

We immediately called the pediatrician who asked us “if we could push it back in.” Uh, push it back in? Negatory, doc. So, off we went to round one at the ER. The doctor confirmed it was a hernia and tried to reduce it – aka shove it back in – with no luck. At this point, he made a phone call to discuss surgery options at its downtown hospital. We waited… impatiently… for a decision. Finally, the doctor returned and decided to try again, motivated by teasing from fellow colleagues who couldn’t believe this doctor couldn’t reduce a hernia on a three-week-old. That’s the kind of care a parent can only hope for, right? He was successful this time and sent us off with information to set up a consultation with a surgeon.

The next morning, Friday, a consultation was scheduled for the following Wednesday. Between a screaming baby and having to reduce the hernia every hour or more, this seemed a lifetime away. That night, things were bad. Every 15 minutes, we had to reduce it, and Everett was inconsolable. Feeling helpless, we headed back to the ER, except this time we went to the downtown hospital where we knew they could do surgery if needed.

We waited and waited, terrified of what horribly contagious diseases our heart baby could pick up from the overcrowded ER. When we were finally seen, the doctor brushed us off, unsure of why we were there. Apparently, if you can reduce a hernia – no matter how often it pops back out or how much your child screams about it – then there is no rush. And, Wednesday was soon enough, he told us. Right…

That weekend was long. Everett cried a lot, and, at this point, began screaming when we tried to feed him and was progressively breathing faster. There we were with our newborn, not knowing how to care for this fragile child, but doing the best we could.

Relief came on Monday when my dad used a connection to get us in with a pediatric surgeon that same afternoon. The surgeon was excellent, and he worked out of a different hospital in town. The hospital we now love. Surgery was scheduled for the following day.

To say we were nervous would be an understatement. Ideally, a hernia repair would follow a heart repair, but it couldn’t wait. Everett’s cardiologist was hopeful his poor eating could be attributed to the hernia, and this could potentially solve our problems. The surgery was a success despite running slightly over his projected time. He was discharged in the morning with several new medications, a diagnosis of reflux, and instructions on how to create high calorie bottles.

Several days passed, and we found ourselves nowhere. The domino effect had truly begun. The hubs had left town on business, and that same evening I placed a call to the cardiologist. Everett’s breathing was irregular, and he still wasn’t eating. We were sent to the ER, where he told us he would most likely be admitted, if for nothing else, to place an NG tube to help pack on the ounces. It was a terrifying experience. I cradled my baby, trying to calm him, and cried in the arms of a friend as they placed the tube and listened to my child’s gut wrenching cry.

After struggling to find an open flight, Philip arrived the following morning off the first flight he was able to book. One day turned into two, and two into three. Everett not only fought feedings, but now began vomiting most of his bottles. The first GI doctor saw him on day two and promptly diagnosed him with a food allergy, and that was that – this is about the time I officially chunked the pump. Still he vomited on the new formula, and nothing changed. The next doctor took a closer look and ordered an upper GI scan. And, that’s what was needed.

Everett was diagnosed with an intestinal malrotation. Another surgery. And, this one was urgent. On day five, at five weeks old, he underwent his second surgery, and, again, we were hopeful this would solve his feeding issues.

We lived day to day, switching between the hospital and spending “quality” time with our other son. If I was with Everett, I missed Austin. If I was with Austin, I missed Everett. We were tired and not getting the response we had hoped for with Everett. He saw an OT every day to work on bottle feeding, but most feedings were administered through the NG tube. By day ten, we were done. It felt like nothing was changing and nobody cared. We knew something was not right, but it was hard to express that when doctors dropped by haphazardly and only stayed two minutes to answer all your questions. And, that’s when I lost it.

I threw a fit. I let it out. Everything that had been bottled up, nodding and agreeing, and trying to remain calm about the hell my son was going through, came out. I wanted to talk to Everett’s doctor. No, not the doctor on call, his doctor. A nurse tried to play interference, and I explained to her that we were done. There was no reason for us to be here because it felt like nobody was doing anything and the doctors were not working together. We had both dropped the NG tube multiple times. We had been trained on the pump. We were sitting and waiting and nothing was happening. We had voiced concerns but they were always written off. So, why are we here, with no comforts of home, trekking back and forth from one child to another? Why are we here if nothing is going to change?

They did get me on the phone with Everett’s doctor, and I cried, and he apologized for the way things were going (p.s. I really do love E’s doctors and they are fantastic). The next day, there was a new plan – something that actually seemed to finally make a difference. He was vomiting less and appeared to be gaining a little weight. On day 14, Everett was discharged with the NG tube… only to return three days later. This time to the Cardiac ICU.

Continued Happy Heart Day