A few days ago David and I pulled one of Aiden's neonatologists aside and asked her a few questions that have been weighing on our minds.
One of the biggest fears we've had is if there would ever be a point that they would say "this isn't working" and pull the plug on him. Especially if the geneticists come back and still insist he has a type of dwarfism that doesn't sustain life.
I felt a huge wave of relief when she assured us they wouldn't pull the plug on him. As she put it, so long as his heart is beating, they will be fighting alongside him.
She explained to us the only concern we should have is if he's not able to get off the type of ventilator he's on now. But preemie babies that are intubated like him take a long time to develop strong enough lungs to come off this specific ventilator. And preemies that are intubated and have pulmonary hypertension like him take a really long time to come off this ventilator. She then assured us that she's got plenty of time for him.
She told us he's on an upward trend, and following a path that they would expect a baby like him to take. And also mentioned that if his body was going to give up and not want to survive, we would have seen him decline by now.
We also have options for the future. If he needs more long term support for breathing, he could be sent home with a tracheotomy. If he needs help eating, he can have a G-tube. She said that even those would be temporary and knows of kids that pulled out their g-tube, it closed itself off, and the kid didn't need it put back in. Another patient of hers heard her own voice through her trach for the first time, got so excited she yanked it out, and was completely fine so she chuckled at the parents and said "no use putting it back!".
But she also reminded us that this is going to take some time. When we said we'd love to bring him home for Melodie's birthday in July, she replied with "hmmm, maybe.".
So our goals for long term and getting him home is controlling his pulmonary hypertension, and getting him off that ventilator. A part of me prays he won't be in the NICU by July. But another part of me realizes that he wasn't supposed to survive, so a few months in the NICU to keep him forever isn't that bad of a trade off.