Boring and Grateful

9-11 Timothy looking for change

Written Sep 8, 2011 12:04am

When last we left our hero…

Timothy was progressing with his bowels, but was still on an IV for food, and I was delusional about how quickly he would be exiting the hospital.


Our goal is to make this the most boring Caring Bridge site ever, where Timothy improves quickly, and I have nothing substantive to write about and then he just suddenly gets out of the hospital.

And so far, Timothy is doing his part to make my dream a reality.

He has continued to pass waste into his bag, and that means his digestive system is working, which is huge.  On the other hand, the nurses want to see a few days of ‘working’ before they really believe it.

Now to eating…

He has spent the last 7 + days getting his nourishment from an IV drip, but the nurses are shifting to a feeding tube and then will move to bottle and breastfeeding.  It comes just in the nick of time, because there aren’t many more places where they can stick an IV needle in this kid – he’s been stuck in both arms, one foot and in his head.

Considering that he looks like a marionette with all of his cords (with an IV, oxygen canula as well as a feeding tube in his nose, oxygen indicator and three other monitors taped to him), he is being a good sport and has been pretty calm and is sleeping well.

The nurses at Children’s are great about understanding our desire to bond with the little astronaut and hold him as much as possible, and Laura is trying to get Timothy to breastfeed.  But for a variety of reasons, breastfeeding is often a greater challenge for kids with Downs, and this lad has had over a week of the good life on an IV and, not surprisingly, he doesn’t much feel like working for his food.  So breastfeeding is going to take some time.

Next step…

We love our NICU room at Children’s, and I’ve looked into buying and knocking out a wall to add on a den, but it’s more likely that we will be moving on shortly. Once Timothy has stopped using an IV at all, and a room is available in the Infant Care Center (ICC) at Children’s, mighty mouse will make the move.  And the ICC is his last step before home, and while we hope that he’s home very soon, it depends on his progress.

He continues to receive great care there, and our best hope for an early exit is that they are tiring of my questions and sense of humor.


People continue to ask how we are able to have such perspective in this situation, and to take life one day at a time.  It’s easy to assume that it is because of Timothy.

But it’s also thanks to moments like one just three days earlier, when I heard from our oldest child, Elisabeth, the nine most frightening words a parent can hear from their fifteen year old daughter —  “Dad, I got my permit — can I drive home?”

It was just a good reminder that normal life keeps moving forward outside of the hospital cocoon.

Thanks for your continued thoughts and prayers and offers to help.

Our goal is for boring progress and to have the little man home as quickly as possible.Still Grateful,

The Lees

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