Wednesday, June 1, 2011

The Very Best

I can't believe it's already Wednesday of our second week at Seattle Children's. It seems like we had waited and waited and waited to begin this journey. To be nearing the end of our time here is a little scary. The support here is incredible and it's hard not to let my mind wander. I think back to that scary time last year when Jack wasn't eating anything and lost a whole pound when he only weighed thirteen. When our only option was to put a feeding tube in. It's been a constant battle to remind myself that Jack is older, stronger, and more able to tells us his wants and needs. That we have a better medical support system around us now. That this time is totally different. I KNOW we can do it.

 I know JACK can do it.

But here's the juxtaposition: To wean Jack of his feeding tube, on his list of medical concerns, is kind of far down. When we see the precious, hairless heads of tiny cancer patients here at the hospital, it put everything into perspective. And it's polar opposites. Jack's feeding concerns are no where near theirs. We will be OK if Jack doesn't learn how to eat. One can survive and thrive with a feeding tube. But his progress here speaks volumes. We know he can do it. We know he can say goodbye to the tube.

To be quite honest, even though eating is way down on the scale of importance, it has taken a whole lot of our brain space over Jack two years of life. We have researched, second-guessed and more times than not, gotten so frustrated with tube feeding. Why won't Jack eat? Why aren't these therapies working? Why does so and so not have any issues with eating? Why Jack? Of course these sorts of questions can drive someone absolutely crazy, toppled with a kid who won't open his mouth to let one bit of something in. It has been really hard.

So we took a collective sigh of relief and kind of got into a groove after the tube was put in. We let ourselves relax a bit. We had a routine that worked pretty good and allowed us to have somewhat of a life. It was like everything else we've been dealt with, rolling with the punches of micro-preemie life. All things considered, we've had a really good year full of health and happiness (yes, even during RSV isolation when I was dreaming of the day May 1st would roll around). We've grown as parents and individuals. We've learned how live again. When Jack came so early, we really put our lives on hold, as anyone does. But something new has happened recently. I feel like we are starting to strive for the very, very best. We want the best therapy. The best doctors. The best uses of our time and energy. The best relationships. We are honing pretty much everything in our lives, chiseling ourselves to have the best go at it and to give Jack that best go at it. And that, my friends, is very satisfying, but it's also a lot of work... all this to say that Jack's eating journey will continue far beyond these two weeks. He has just scratched the surface. He really only opened his mouth to food ten days ago. We have only just begun.

This week we've slowly introduced texture into Jack's pureed foods. The therapist takes baby pasta and puts it through a grinder, so there are little tiny pieces of pasta throughout. Jack has taken spoonfuls of this stuff and hasn't gagged. HUGE step. We are starting slowly, only offering about five to ten bites per session. Then we move onto foods Jack is used to - ie. pureed bananas, peanut butter, yogurt, etc. We also offered Jack some more black sesame cereal today, which he really seemed to like. This cereal is found in Asian markets and has a sweet taste and a fine, gritty texture. It is super nutritious and is filled with lots of calories.

We met with the dietitian this morning and she started to map out what Jack will need to eat when he gets home. We spent time talking calories, vitamins, and fiber. She and our therapist will write up a detailed plan for us when we go home, so we'll know exactly what to do. For us planner-types, this sounds perfect, but I really can't believe they are already writing our discharge plans. They'll be sending us off soon.

Jack is doing so well. He is out of his routine, environment, and I'm sure his body is just feeling different. Sensory wise, the hustle and bustle of Seattle is polar opposites to our little spot in Clancy, Montana. He is taking it all in stride and impressing us along the way. We've been reminded, once again, of how amazing our little miracle boy is. We don't like to use the term "miracle" lightly, but Jack really fits that description. We get constantly "he is a 23 weeker?!" with shock and awe in their voice. We get told how well he seems to be doing. It has been such an uplifting time. Even with living Jack's experience day in and day out, we oftentimes forget just how far we've come.
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1 comment:

Julie said...

I am sure it is scary to contemplate coming home! But I am so proud of him for doing so well and of you guys for learning how to find the best in everything. And pasta??!! YAY!