One month. That’s the amount of time I lasted not being to hold my baby. Not being able to change her diaper. Not being able to bask in the precious moments of having a newborn. For the entirety of that month, her doctors would try to extubate her a number of times, and each time we were made known of their unsuccess. The memories I have of this period of time seem unreal sometimes. It felt like a horrible nightmare. A cruel joke. Let me tell you, there is nothing more frustrating and discouraging than your medical team telling you they don’t know what’s wrong. I vividly remember telling one of her providers that it was okay for me to say that I didn’t know what was wrong, but for them to say it, was discouraging beyond belief. I learned something extremely crucial through that experience and many others but I’ll share those thoughts later on.

For those of you who don’t know, when someone is intubated, they have to be pretty heavily sedated in order not to remove the breathing tube which is essentially helping them breathe. So imagine this, my beautiful one-month-old baby getting doses of Ativan, morphine, and fentanyl round the clock. I couldn’t help but fear what this could be doing to her brain cells. Aside from the very prevalent issues we had with breathing, I feared that having her sedated like this for this long would be opening another can of worms that were just not in our deck of cards. Time always felt like it wasn’t on our side while we went through this period. I thought to myself could things get any worse? Yes, they actually can. The unexpected happened. Hannah caught an infection on her surgical sight that ended up spreading to her esophagus and creating a hole. Not only that, but her airway was starting to narrow around her breathing tube.

What do you even do in a situation like this? I remember feeling so hopeless at this point. For a moment, I felt that if she didn’t make it through this, it would be the less painful route for her. That’s how dark this period in our journey felt when death seemed like the more feasible option.

We sat in the family meeting room with all of her providers when they broke the news to us. At this point we had two options, none of which seemed to make it so that we would be home within the next few days. One option was to have her flown out to Cincinnati, where a specialist would completely reconstruct her airway and perform surgery on her vocal cords (Hannah’s vocal cords were extremely swollen after the open surgery). The next option was the tracheostomy. I wasn’t fond of either of these choices. Imagine being flown to another state with a baby who was intubated and couldn’t withstand any extreme or sudden movement? Or having to come to terms with completely altering our life if we decided to go with the tracheostomy. It was crippiling having to make these decisions. This may have been any first-time parents’ worst nightmare. I recall just wanting to keep everything the way it was out of fear of “making the wrong decision” or honestly just not wanting to be the person to make them at all. “You do not have to decide right away, but if you decide to go with the latter of those choices, I do have availability in the OR by the end of the week”, was what her ENT doctor told me.

I had no idea what we were going to do. Which was the better choice for Hannah?