Monday, August 6, 2012

Day One Done

I have no idea what I have mentioned on this blog so far about Colleen's eating struggles...if you know her in real life, you probably already know that she has a McKey button in her belly for tube feedings of high calorie formula.  The 'why' is not an easy answer, but if you want to know, just ask.  The reason I am bringing this up today is b/c we started the comprehensive inpatient feeding therapy at the children's hospital.  Day one is in the books - and it's been an interesting one!  I struggle w/how much to share for various reasons - this is Bean's story to tell some day, you might not understand the background or medical stuff (I live it and don't always understand it!), I don't want to upset/worry others, etc...but today I was thinking about the stuff that makes me feel 'not normal' or sets me apart from the other parents I know and I felt a little frustrated.  Sometimes it really stinks that other people don't get this and don't share in this.  I'm not saying I want all of your kids to have the same problems as mine just so we can be friends, of course, but it's hard to explain things to people and then after a while I can't take the pity looks or the stories of how their kids eat picky too or whatever.  Ok, I'm being really blunt here and I don't mean to offend you if you are one of the people who has said those things to me.  But it's different.  Be honest, most of you can't relate to going to feeding therapies one bit.  And that's ok!  It really is!  We can still be friends =)  I guess what I'm trying to say is that I'm going to write a little bit about it in hopes that it will make it easier to talk about for all of us.  Also, I hope that people who are going through this will be encouraged.  Not that my our story is all that inspirational or anything, but that maybe others can find a nugget of comfort in shared experiences.
So here goes.  My girl is 5.  She is not a baby born w/some medical need for a feeding tube.  She is a preschooler who still gets the majority of her calories from a formulated liquid.  I never expected to be tube feeding a 5yo.  (Side note - these days we are down to only 1 can through the tube, which my husband so lovingly administers in the dark while Colleen sleeps.  He is a true servant to both her and me!)  We adopted Colleen and there were some struggles involving food in her past.  She came to us w/a lot of emotions about food.  She had an nG tube in her nose at first and now has a McKey button.  We've been to this hospital for lots of therapy appointments along the way...3 years later we are still working on it.  Two years ago we were presented w/the option of an inpatient treatment but we had already bought plane tickets for a big trip.  This year - we had no plans officially set.  We're ready!  Kindergarden is coming and that means all day, including lunch w/no other family members present to coach her through it.  This scares me...I know mommas have a hard time when their babies go off to all day school and I know it's normal.  But we have a different normal at our house =)  In my mind I just couldn't see this tiny girl lining up to go to the cafeteria, sitting down at one of many tables with 99 other kids, eating or drinking anything in less than 15 minutes and then shoving the rest of it back in her lunch box to go play.  I just couldn't see how she would eat one bite of anything, let alone drink her formulated drink!  She's starting to get to that age where kids ask her questions, she notices she is different and she honestly doesn't know what to say to answer them!  After swim class, once some kid asked why she had 'that thing' in her belly and she said, "That's why I have a belly button."  The kid was pretty bewildered...yeah!  I want to teach her to say something like she is an alien or she shoots fire out of it or something, but I'm not sure the other moms would appreciate it!  Look, sometimes we have to make jokes, ok?  =)
Since Dave was not teaching summer school this year, it seemed like a perfect time to enter the comprehensive feeding therapy.  Were we bummed to spend 2 weeks apart, am I excited to sleep over in the hospital room, does Dave feel ok about missing out on prime time vacations?  Yes, no and no, but here we are - putting all our own selfish thoughts aside to focus on how exciting it is to see our daughter progress and how grateful we are to be so close to a place where we can have help.  Are we worthy of your admiration for that, have we stopped complaining and worrying about it, are we making the best of it?  No, mostly but not entirely and yes.
So...feeding was...sort of like ground zero.  We were instructed to give Colleen only half the amount of drink we usually give at breakfast.  Lunch was awesome - my rock star daughter almost completed a container of yogurt!  Not only that, she drank a whole can, AND she ate other stuff too!!!  The psych dr kept saying, "Holy Cats!"  It was pretty impressive.  She ate mac and cheese, peaches, goldfish crackers...(The dr asked what her favorite food was.  "Mac and cheese....and noodles!")  Then dinner was served a touch earlier than we serve it at home.  I could have guessed what the outcome was going to be like...when she heard the dr was coming soon for dinner, Colleen started telling me she wasn't hungry and didn't want to go.  We went and she started out pretty good...but a few minutes in, got weepy and started to really struggle.  The last 10 minutes were rough.  She did eat part of a chicken strip, some pear sauce, some mashed potatoes and some ice cream.  She made sure to tell that dr that she didn't like ice cream.  (Maybe if they would have added some nerds candy...?  She loves that stuff in ice cream!  BLECH!!  Whatever works for you baby girl...)  Tonight we are not tube feeding her like we would normally at home.  We shall see what tomorrow's breakfast will be like!  I'm hoping she'll be hungry!
As always, we would appreciate your prayers for us as we put one foot in front of the other in this journey.  Tomorrow is a new day, another chance to succeed =)  I'm no expert but if you have questions about feeding therapy or just want to share experiences, feel free to leave a comment...

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