The Long Road Home

Every cardiologist in this place has one central problem. They all begin sentences with the word “So.” “So, the Norwood procedure…”

It is almost a way of saying, “Hello, my name is Dr. Atz (A new friend who we call Andy) and I wanted to spend a little time talking with you… (you get the point.)”

At any rate, my wife and I now begin every sentence with the same word. We do this subconciously and it has become a harder habbit to break than quitting smoking. In like manner, I’ll begin our news of the last 24 hours as would any good cardiologist.

So, we have been trying to figure out how to make this beautiful little girl consume more calories than she burns while consuming them. It sounds a little oxymoron-ish I know. The reality is that this has been the single most frustrating period of the entire week, and is almost on par with the same stress waiting on the surgery.

We meet with the doctors each morning on rounds and begin the process of “Practicing Medicine.” Lately it has been the battle of a mother’s intuition of her second child versus practicle science. We have been adjusting volumes, tracking with razor precision her intake, formulating calorie consumption, and debating digestive track concerns.

Needless to say, it has been a trying 48 hours. We have gone from feeding 80 ml of breast milk every 4 hours, to feeding at will every 2 hours. Currently, mother’s intuition has won the battle and we will be trying to feed her much like we fed McCanless when she was a newborn. Most of you who know me will say that I am arguing with doctors for the sake of arguing. Arguably I’m not. What we are trying to do is educate them on the problems we had with McCanless’ digestive track that we see after feeds with Mary Clare. This is where medical science rubber meets the road.

The more experienced doctors seem to be paying a close ear to what the mother has to say and effectively weighing it against what their practice has taught them. In the end, however, they consider all sides before making a decision.

Mary Clare has been SLOWLY increasing her intake every two hours by just a ml or two. We are weighing her at every glance now that the feeding tube has been temporarily removed to make sure that she is in fact gaining wieght.

With a little luck she will progress from 30 ml every feed to at least 65, then more and then we can go home. The worse case scenario is that we have to put the feeding tube back in, resume a new pattern of fortified feeds, and eventually we get a G-tube placed into her stomach and we pour milk in. This will require one more surgery which we are against and not ready to face.

Kerri is doing well with being away from McCanless (Better than she has in past days, I guess.) It is ripping her apart to be a split family down here. I miss her as well, but seeing Mary Clare (who looks like McCanless at birth) reminds me of her. Other than dealing with all of these emotions, we are holding it together. Mental stress is tiring. We sleep at the drop of a hat, usually nap every few hours at best.

We are ready to come home.

I mean:
So, we are ready to come home.
So, I’ll write an update tomorrow.
So, until then…

So, thanks Dr. Atz.