Sam is definitely still the man, but he is also unfortunately still the man with major acid reflux. Back when our pediatric cardiologist told us that Sam would likely have feeding issues after surgery, I didn’t feel too concerned about that part of his recovery. After all, compared to open-heart surgery, a little acid reflux doesn’t sound so bad. What I didn’t realize was that acid reflux is a huge deal to a little guy like Sam. I will try to keep it brief, but his digestive problems are much more severe than that of an adult or a healthy baby, and here’s why:
1. One of Sam’s vocal cords was damaged during his surgery. Because of this, Sam aspirates pretty much everything except for breastmilk that has been thickened to a honey quality.
2. Because Sam has to work so hard (and burn so many calories) to suck and swallow this thickened milk, he has an NG tube so that he can get the daily calories he needs in order to heal, grow, and develop appropriately.
3. Unfortunately, the NG tube keeps some sphincter open in his throat that adds to his acid reflux.
4. Sam has frequent acid reflux, as many babies do, but he aspirates his reflux.
5. When he aspirates his reflux, his oxygen saturations plummet, and his heart occasionally clamps down as well. It’s terrifying, and he needs to have his oxygen turned immediately up in order for him to recover.
6. All of the food, acid, etc. that Sam aspirates into his lungs puts him at risk for a serious lung infection.
The solution that the doctors are proposing? They’re thinking that he will likely need a G tube, or a feeding tube that goes directly into his digestive tract. They also want to “wrap” part of his digestive tract (Jason and I don’t fully understand this part yet, nor can we remember the official name of this procedure at the moment) that would essentially stop his acid reflux altogether. The huge benefit of these two actions—the G tube and the “wrapping”—is that Sam’s acid reflux would be gone. Combined with feeding him only honey-thick milk, the G tube would significantly reduce his aspirations and thus reduce his risk of lung infection.
The G tube is also preferred over the NG tube by many doctors because the NG tube can come out easily and be misplaced in the lungs, but the G tube tends to stay put. Many occupational therapists recommend the G tube over the NG tube because the NG tube may cause oral aversions. Also, if Sam were to need medication immediately, the G tube would be an efficient way to deliver it. And most importantly, the G tube will allow Sam to continue bottle feeding but will offer us a way to deliver extra food and calories to make sure that he continues to grow.
Of course, as you may have noticed from our earlier posts, there are no easy solutions around here. Placing the G tube requires another surgery, which means that Sam would have to go under general anesthesia again, be intubated again, go back to the CICU, and face the same risks that all surgeries pose. I’m not particularly looking forward to seeing another tube sticking out of my son’s body, and the thought of messing around with yet another part of Sam’s anatomy is not ideal. Wasn’t rerouting his circulatory system enough? While Jason and I are open to the idea of the G tube, we still need a little more convincing before we hand our little man over to the surgeons once again.
So tomorrow, Sam will undergo an impedance probe study, a test in which the doctors will monitor over 23 hours how frequently Sam has acid reflux, how acidic it is, and how much of it there is. After that, they will make their recommendation. Jason and I feel fairly certain that Sam is refluxing far too frequently, and while the G tube is scary, so is jumping out of bed several times a night to try to keep him from choking on his vomit and de-satting. While it’s not set in stone, we feel uneasily certain that the G tube is in his not-too-distant future.
Apparently, most Norwood babies go home with a G tube and keep it for at least one year. Also, we’re going to be here for at least two more weeks. When the doctor told me this yesterday, I talked myself out of hyperventilating because I was holding Sam at the time. The thought of two more weeks of beeping alarms, of eating take-out, of living in a tiny room, of Sam lying in a hospital bed, of having absolutely no control over anything…it was too much. I sat and felt sorry for myself until I decided it was time for a run.
But just as I was changing into my running clothes, something happened that stopped my pity party in its tracks. There was a code blue on our floor. Just two doors down from us, a newborn boy’s heart stopped beating. Blue lights were flashing in the hall, and alarms were going off that could wake the dead. When I looked in the hallway, the baby boy’s room was packed with doctors and nurses from the CICI, CPCU, emergency department, and anesthesiology. People in labcoats and scrubs were spilling into the hall, and I could almost hear the anxious pounding of everyone’s heart…and the sad silence of one.
My realization: we can deal with digestive issues. They are a pain, yes, but manageable. We need to be thankful that someone was able to take our son’s tiny, defective heart and make it work. Each day that he’s alive is kind of a miracle. After the baby two doors down was taken to emergency surgery, one of the nurses came in to give Sam his meds. She looked at us with exhausted eyes and said, “Count your blessings.”
In that same vein, I would like to share a few of our blessings through the pictures below:
Here is Sam the Man sucking down his bottle with passion:
Here's the little guy being comforted by his dad, who is wearing some kind of weird hat donated by the CU sports teams:
And here is what Sam would look like if he were part buffalo:
This is Sam enjoying his "Tough Cookie" outfit that our friend Julie sent us (we love it, by the way!):
Here is Sam contemplating the meaning of the universe:
Twelve seconds later...
Following Sam's example, I'm off to sleep now. Thanks for reading!