Thursday, March 21, 2013


Yesterday Colleen had a feeding team/GI appointment at the children's hospital and...

(...quick background for those that are new here...Colleen came to us at the age of 2 in August of 2009 as a foster/pushing for adoptive placement.  It wasn't her first time in foster care.  Her biological parents had taken her to the hospital this time b/c she was vomiting a lot.  She had been labeled failure to thrive in the past.  Due to an unfortunate incident in the hospital, it was decided that she would no longer be able to be in her bio parents' care.  An nG tube for feeding was placed in her nose and we were given all sorts of instructions about the tube and how to feed her through it.  
'Back in the day...'
Later they placed a G tube in her belly and shortly after that a MicKey button.  In January of 2012, our adoption became final!  We've been seeing the feeding team/GI doc on and off all this time and in August of 2012 we were admitted to the children's hospital for 2 weeks of intensive feeding therapy...and we haven't used the tube since.  When we had a follow up in November of 2012, she weighed 33 pounds and some odd ounces.  Things have been going really well, even at school, so we were hoping that they would set a date for the removal of the tube at this appointment.  We tried not to get our hopes up to high, but we'd be lying if we said we hadn't thought and prayed about it!  Back to yesterday...)

...she weighed in at 36 pounds 2 ounces!  We chatted w/the feeding team nurse, the dietician and the psych doctor.  I rattled off Colleen's daily schedule and what she usually eats.  They seemed very pleased w/her weight gain (almost 3 pounds in 6 months?!) and then casually asked, "How would you feel about taking the tube out today?"

How would we feel?

We quickly called some family members and took pictures!

Waving GOODBYE to the button

While we waited for the GI doc and nurse, we did some phonics work.  Colleen gets the rhyming concept, so I thought why not?  I used to do that w/Mo all the time...if this is 'at', what is 'hat'?  'Cat'?  Then we sound them out and do the whole list!  She had fun doing that!  The doc came in and said it was so exciting b/c this is the highest her BMI has ever been!!!  She's obviously growing both taller and heavier, so we checked on the growth curve...she had been following the lowest curve of the curves, but she has jumped up to almost the middle curve!  She is in the 30th percentile, which is amazing b/c she has only ever been in like the 3rd, or some insanely low number like that!  That was pretty awesome...then the nurse came in and we talked about what we were going to do and how.  Colleen laid right down and I gulped really big.  I knew that it wasn't going to be hard - I've taken a button out before to change it.  But I couldn't believe how Colleen wasn't showing any anxiety despite the number of times we had been in that room and all the crazy things that had happened there in the past.  I distinctly remember her clawing at me as she tried to burrow deeper into my arms one of the first times...she used to get so scared that she would lose her lunch...she would shake and wail and be a hot tired mess for at least a whole day after.  But here she was, laying down on the table, ready for whatever...I didn't cry, but I sure did swallow big!  I held her hand and the nurse told us the magic word - we were supposed to say sugarplum sugarplum sugarplum, but no one really said it.  Mostly we whispered, mumbled and breathed loudly!  Then *poof* it was out!  There was a gauze pillow and 1, 2, 3 pieces of tape in the place of the button!  
The gauze pillow
(Colleen makes sure to count them out as she recounts the story - tape is a big deal in our house.  When she had an nG tube, we had to put all kinds of tape on her sweet little face to hold it in place and keep it from coming out.  She would get these big sores, we would need to switch sides and there would be taping, wailing and shaking, re-taping and some serious reassuring cuddle sessions for a girl who had a whole lot of emotional hurt not to mention the sting of yards of tape being peeled off!  So, yeah, medical tape of any kind gets a big mention in the story.)  The funny thing is, Colleen didn't cry, she barely shook and she only let out a little yelp when it was actually pulled out.  She goofed around w/the tape and I marveled at how far she's come!  There were no tears, no huge hugging sessions and very little anxiety at all...bittersweet...for sure...
Playing with the tape 
 After it was all over, the nurse tucked the button into a glove and told Colleen she could throw it away and say goodbye.  Before you could say 'button' (and before I could say, "Let me take a picture...") that thing was slammed into the trash and a quick 'GuhBYE' was yelled!  She turned around like we do this every day, like it was no big thing and like she was ready for the next thing!  I just shook my head, hardly able to comment for the huge lump in my throat =)  Then the nurse came in w/some huge prizes to pick from - I love that another family had donated some big things for kids like her who 'graduate' from a tube or button!  W/a little hesitation, she chose the princess laptop...and we were outta there!  
A princess laptop for your troubles!

I cannot hardly believe that (Lord willing) we will NEVER have to go back to the feeding team!  And we only need to go back to the GI in 6 months - if everything is going well, we will NEVER see them again either!  Don't get me wrong, I am forever grateful for all the help and support they have given us...but it's nice to think that we will only need to see her regular pediatrician from now on.  We already have had one night of no problems.  I sent her to school today w/a note saying that they could call me if there were any problems, but really, I don't anticipate any.  When I changed the gauze this morning everything looked dry and normal!  I was worried about school, but I know that spring break is next week so I can monitor her closely if needed.  
I know so many of you have prayed and been praying for us!  THANK YOU THANK YOU THANK YOU!!  We are so very blessed to have this miracle known as Colleen in our lives!  She has worked so hard for this and we didn't expect to be it to be over so fast.  I wore my 'I love a tubie' sweatshirt to the appointment and little did I know that it would be the last day I would have a tubie living in my house! 

1 comment:

D(ea)r Abby said...

Mel, this post is such a nice tribute to where you all have been and how far Colleen has come! You have all worked so hard and she is so lucky to have you all as her cheerleaders and supporters and cuddlers along the way. I am so happy to hear that you had such a joyful day! (And I am a little jealous of the princess laptop...)