9.12.08

Signs that we've been here too long at the NICU:

1. We've switched out furniture in our room with furniture from other rooms.
2. We've done minor repairs to the furniture we have taken.
3. We've helped nurses find instruments and medicines in our pod.
4. We know what a pod is.
5. You've eaten food next to a "used" diaper that needs to be weighed. (When the nurse commented that I didn't seem that phased by it, she explained how, after 30 years of nursing and all that she had seen, she could eat food off a dead body. I don't eat sandwiches in the room any more).

So here we are, Allison is sleeping in her bucket bed and Ethan is finally letting the painkillers take some of the edge off so that he can sleep. He's been really restless today, and it will forever amaze me how a 6 pound infant could require three adults to restrain him. Here's hoping for a more quiet night.

Yesterday I talked with Dr. Nordine about Ethan and he gave me some much needed perspective for the road ahead of us as well as a good summary of what we've been through.

One of the consistent hallmarks of Ethan's development is that we always seem to learn that things were more severe in hindsight than we had thought in the moment. For example, his pulmonary hemorrhage sent fluids into his lungs setting him back further than we assumed. The same is true for his PDA; we thought at first that it wouldn't be that big a worry, and then, 13 days later, he was having it surgically clipped.

He's gone from showing signs of stress and slow growth which prompted the semi-emergent C-section, to a pulmonary hemorrhage, to a PDA valve that won't close, then having it closed surgically, to recovery, a brief upswing in his developement, to a sudden crash and re-intubation, to steroid treatments, to pneumonia, and now to the present situation of being completely honked off at the whole gambit.

The doctors and nurses understandably cannot predict when a child could be discharged from the NICU. Nevertheless, it is very helpful for me to get my mindset right for what lays ahead and that is what prompted the conversation with Dr. Nordine; I wanted to have some ballpark figures and some "milestones" to help guide me in my thinking with Ethan. Here's where we are:

Like Lisa said, our first step is to completely recover from the pneumonia, which could take the next two weeks. We'll start to see signs of this recovery when Ethan's need for suctioning lessens and his Jet ventilator settings start to slowly get turned down.

Once we feel that the pneumonia is gone, all focus then turns to weaning him off the ventilator. Again, this will be done by kangarooing and proper nutrition, and the signs of success are the settings being turned down. He is currently at a setting of 36-7, thanks to a tremendous blood-gas test that showed his CO2 level at 56. The closer the first number gets to the second number, the better his lungs must be working. Most children in Ethan's situation would be successfully weaned off the vent when that 36 number hovers around 20, and that 7 number goes down to around 5. Those are his PIP and PEEP numbers, and they are the gatekeepers to the wonderful world of inspiratory pressures.

After we've crossed that threshold, Ethan would most likely be placed on CPAP again. When it looks like he does not need CPAP anymore, we'll move to a canula, and that leads eventually to breathing on his own. Not to make any unfair sibling comparisons, but Allison traveled this path in about 30 hours. (She also didn't have to have heart surgery).

Along the way, Ethan will be learning to breastfeed (around the time of the canula,) as well as possibly getting ready for some additional (minor) surgery. He has an inguinol hernia, and if it doesn't self-correct, he could have it surgically repaired. There is also the case of him being tongue-tied: if it interferes with his eating, we may have it clipped.

With all that being said, I asked for a rough time table of recovery. Dr. Nordine said that we could possibly be taking Ethan home by Thanksgiving, but that it might be wiser to think in terms of 20-22 weeks from now. He could heal faster or slower, but that should give us a rough estimate of the time it will probably take.

I know that's a long time, and I feel in some ways that I've been running a 10k that's just been turned into a marathon, but Ethan is still alive, he will still be able to have a tremendous chance of developing normally, and for that, I'm eternally grateful.