We had 5 wonderful days with James in our home before round two began. Yes, there is a round two, and its name is pyloricstenosis. Haven't we heard that name before? Ah, yes, Jordan had the same thing at 5 weeks old, had surgery, and we never looked back. I'm glad we were somewhat experienced in this realm when we found out James had the same thing, however it definitely was a bit aggravated since James is recovering from heart surgery. Round two....sigh. I really hoped that round one was enough for James' sake, but if a round two was necessary, at least it is something we can handle. Some quick background...
James had been throwing up a few times a day since he was discharged from the hospital the first time. We were watching it carefully to see when it became "frequent or excessive", as the literature we had received mentioned this could be a problem following heart surgery. It was very hard watching James when he had to throw up. He would start off just by gagging, and I would try to ward it off by rubbing his back or singing to him. Regardless, he would just open his mouth and it would come pouring out-sometimes projectile. I felt a bit uneasy pushing so much milk into his body as well, wondering if perhaps he was throwing up because it was just too much. As the throwing up got more frequent, we found ourselves wondering if this was related to heart surgery or if we were just seeing colic, gas, GERD, etc. Jared and I both had pyloricstenosis at the back of our minds honestly-we have seen it before, and we were both recognizing the symptoms. For me, however, I didn't want to believe he might have something that would require surgery so soon, or another hospital stay. Those very thoughts were panic-inducing for me.
By the time evening rolled around on Christmas day, we knew it had taken a turn for the worse. James couldn't hold down any milk without throwing up, and as Christmas dwindled down, he began throwing up once or twice in between feedings. I changed up his feeding pattern so he was getting less milk at each feeding, but at closer intervals. We called the cardiologist on call as well as the cardiac surgeon on call at PCH; we were advised to wait an hour, feed James 10 ml's, wait 15 minutes to see if he threw up, and then repeat the process. It would be a long night, but I didn't care. Unfortuneately, as soon as James drank his first 10 ml's, he threw it up. What was more disturbing is the throw up contained brown spots we could only ID as blood.
It was with a very sad heart that we called Jared's parents over, loaded James up in the car, and drove back to PCH at 3 in the morning on 12/26. We were moved through the ER at record pace, especially once James started throwing up copious amounts of vomit and blood. The doctors got an IV in him, did a chest X-ray and an echocardiogram, and he finally started resting comfortably on my chest. We were extremely relieved when the doctors came in to tell us his heart looked fantastic-their exact words were, "it looks even better than when he was discharged". We were so happy to hear that, but we also knew that probably meant he had pyloricstenosis-a fear that was confirmed with an ultrasound.
Since James was still recovering frmo heart surgery, they put us right back on the cardiac ICU floor with all the nurses and doctors we had come to know so well-this was a huge comfort especially for me. His surgery was quickly scheduled for that evening, another thing we were grateful for since he had lost about half a pound; his electolytes had to leve out in order for the surgery to go through and we were grateful when we saw they were at a good enough level to move forward. As we waited for surgery, the doctors ran a few more tests that verified his heart was doing great. Although James was being pumped with fluids to make sure he didn't dehydrate, you could tell he wanted to eat really bad...it was hard to be there and not be able to feed him. I tied myself to the pump again while we counted down the hours until surgery #2.
We headed down to the surgical floor around 8pm the evening of the 26th. It was a little bit easier this time to leave James' side. Our pediatric surgeon was extremely experienced and assured us that he did not anticipate any problems with the surgery or with James' heart. The surgery did not take long-a little over an hour-and by the end of it, the surgeon was telling us how great James did throughout the entire thing. When we rushed back to our room, we found James wide awake, arcing his little back, and very obviously trying to find a source of food. He couldn't move his legs yet because of the anisthesia, but otherwise, he looked like a normal little baby-only 1 tube to speak of still giving him fluids. I got to feed him a quick 15 ml's of breastmilk and he fell into a milk-induced nap thereafter. He seemed so grateful to just get something.
Now James has one goal: eat, eat, and eat. He needs to be up to 60 ml's before he is discharged. I am skeptical of that amount because he has never eaten that much before! The surgeon said 50-55 would be acceptable as well with no throw ups...at this point, James has thrown up a few times, which is somewhat normal since his stomach is so irritated. I am honestly not in a rush to leave-I would rather James fully recover, fully establish an eating schedule, and avoid vomiting before taking him home. In short? I don't want to come back. I don't want James to endure more tubes, hospital rooms, hourly check ups, and multiple needle sticks for IVs that left him with bruises on his hand and foot. Once we come back, I want him to feel the consistency of our home environment, as I think that is a huge contributor to recovery. So for now, we are thanking the Lord that this hiccup has been smooth overall and that James continues to do so well. We have been blessed continually through James' entire life with friends and family that are helping in so many ways-we have no idea what to say to these people, as they will never know the impact of their service.
Praying that the next time we come home, it will be for longer than 5 days!
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