Thursday, May 21, 2009


Tonight, let us talk Ava logistics.

As before, when you enter Ava’s room, there is a small entry way with a sink and vanity on your right. It is similar to a small hotel room in that you have to take a few steps in before it opens up into the rest of the room, only smaller. In Ava’s room, it opens to your right. There is a wooden rocking chair with a high back that is always hidden immediately behind the vanity (from the entrance) in the right corner of the room and right next to Ava’s hospital crib.

When we first entered the room on Tuesday evening, Traci was sitting in the rocking chair with Ava (at the end of this you will see some pictures on Lilliana’s slide show link of this very moment). Ava looks so big now, and it is further accentuated by Traci’s small frame. Logistically it can be sometimes difficult to transition from one position to another given Ava’s size and her very low/absent muscle tone and control of her head and extremities. As we have discussed before, in many respects she continues to function as if she is a newborn baby, requiring total care. It is often challenging enough to navigate tasks and positional changes with a newborn, but fortunately they are usually relatively light weight (10-15lbs, even aged a little) and small enough to cradle with one arm. As you will see with the slide show pictures, there is no way that you could cradle Ava with one arm, not to mention her weighing 25lbs.

When we (wiedenhoefers and Lilliana Story) were there the other night, Traci was wanting to get up from the rocking chair. It was obvious that it was not so logistically easy to do, which is only worsened by recovery from her own injuries. She was getting up so that Jennifer and Lilliana could sit and hold Ava. In helping with the transition to her bed a short while later, I could see how challenging this could be. It is one thing to watch someone do something… you know… “oh, I could do that.” Then you have to do it, and you think, “wow! That is a little more difficult than it looks!” This is how it is with moving Ava.

Firstly, you have to support her head/neck. Any person who has ever seen a baby knows this. Then the rest of the body… torso, arms, legs. Simple enough… when the baby is 20 inches long and weighs only 7 lbs! It is a whole different matter entirely when she is Ava’s size.

The thought process is something like this…“Okay, one hand behind the head.” Head goes forward. “Okay, maybe behind the neck.” Head goes back. “Okay, maybe somewhere in between.” Better. “Now, support her body… wow this kid is long…one hand behind her back…too low… too high… better… oh crap… what about her legs?... oh, my… there goes her arm… help!” Not that it is impossible, but this is no newborn, and I have held a lot of them. Fortunately she isn’t slippery, covered with amniotic fluid, vernix (that white cheesy stuff on a baby when it is born), and blood. Then it would be extremely difficult.

This is how things are. And this is how things are much of the day… baths, diaper changes, changing clothes, physical therapy, holding… a lot of holding.

I mention these things just to remind people of the little tasks of daily living that continue to go on and continue to present small challenges to this most wonderful family. It is not a plea for sympathy, as I know that the Lopez family is greatful to be where they are right now, but rather a reminder of how their life is different… at least for a while.

Here is the link to some great pictures that Lilliana took that evening…
Ava, the party waits for you.

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