Thursday, July 8, 2010

G-Tube removal

Just finished another PT session and home nurse weigh in. The last weigh in, Addison had only gained 1 ounce in close to 3 weeks, so even though she is taking all feeds by mouth, they were discussing maybe leaving the g-tube in longer since her weight gain was virtually non existent. However, today she weighed in at 12 lbs 3 oz- a 9 ounce weight gain in two weeks! The procedure to remove the g-tube is back on! YAY! I know that some people think that I am crazy to push so hard to have it removed. "What's the harm of leaving it in", people ask me...Well, first of all it twirls around on her stomach and gets irritated and stuff oozes out and it is disgusting and looks painful. Also, it is not a question of if it will fall out, but when. When it does fall out, we have a very limited amount of time to get her to an emergency room to replace it. This adds a lot of stress to going places or leaving her with someone else or even just in church nursery (I haven't felt comfortable to do this while she still has her g-tube). Is it easier to just push food and medicines down into her stomach rather than making her work at taking it by mouth? Absolutely, but as I see it, nothing in the job description of being a Mom includes the word "easy", and this is not about what makes my life more convenient. This is about Addison. When I see how much better she does with everything when she is eating by mouth- it amazes me. Her zest for life increases as she wants more and more whatever happens to be in that bottle. She does not need the g-tube. She can eat the same as any other baby and most importantly, she craves and needs to eat like any other baby! When we left the NICU, I told all of the nurses that Addison was working so hard, I didn't think she would need the g-tube in about 3-5 months. They all looked at me like I was crazy. Usually when they put one in, they expect you to use it for at least a year, usually two. But the only reason Addison needed it at all was because of her breathing/ heart issues. They wouldn't let me even try to feed her until she was 3.5 weeks old. At that point she had to be taught to suck on the bottle. Now that her breathing/heart issues are more under control- her eating abilities amaze me! I remember having to do a double take when one nurse observing Addison's bottle lessons exclaimed "That baby sucks!" Oh, Ok, that is what she meant...(-:

Her appointment to discuss how they will be taking out her g-tube is on July 21st. So excited!!!

Here are some random pictures that I found on my computer that I hadn't posted here yet:

Chubbs all dressed up to go to her first violin recital last night. She was very well behaved. She was sound asleep when I took her there and she stayed asleep throughout all of the very loud talking around her. As soon as everyone quieted down and the violin started to play- she woke up and at points tried to sing along (not too loudly, thankfully...)

This was taken a few days ago before Aunt Andi left. She was giving Chubbs a piano lesson...she actually looks pretty into it. (-:

Tummy time is going well. Her head is starting to figure out that it needs to come up....her butt is getting higher and higher in the air as her legs come under her and she tries to push herself away....however, her middle is pretty firmly sunken down and not moving....ha. working on this...


This was taken when all of my siblings were here, but got lost in the shuffle. This is at the Cider Mill up in Stowe...

5 comments:

  1. she looks like she is doing fabulous! i bet you are so excited with her progress! :) camden had the feeding tube in the nicu...i felt like they only did it with him because the nurses didn't want to take the time to try and feed him...because he was so tired all of the time it would take over an hour at times to feed him...anyway we pushed really hard and worked with him to get that thing out...so i don't blame you one bit...that's exactly what your little girl needs...is someone to push for her...i feel like sometimes doctors are just covering themselves...so as a parent you have to push for what you feel is best for you guys.

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  2. Is the g-tube a little different from the feeding tube they put down the nose? Russell had one of those in the NICU. The rule was babies couldnt leave the Hospital until they had been off of it for 48hrs. Russell had been off for a almost that long and then he had a new Nurse one night and she put it back in!! The next morning when I saw it I was furious and asked who put it back in and why.The Nurse who had had Russell all week was angry that the new one had put it back in also cause she knew he didnt need it. Then a Nurse stepped forward and said they had been busy and it was easier and faster to feed him thats why they put it in that night. I was SO angry, I couldnt believe a Nurse had been to lazy to feed my baby when I would have KILLED to be the one getting up in the night feeding him!! Sorry to ramble on...the point of my little story...We as Mothers KNOW our children better than ANYONE else! If you think Addison does better with the bottle then YOU are RIGHT! Keep fighting for her, I think you are doing an amazing job, I admire your strength cause I realize that most of what you deal with cannot be easy!
    Love the pics, the one with her little bum in the air is to cute!

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  3. Goodness if Addison can be happy and healthy without that g tube then ADIOS!!! pictures are adorable!!!

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  4. Ok, I love these pictures! Addison is so cute sitting at the piano with Aunt Andi! And I'm sure she is sitting on the couch counting on her fingers in the "Love" outfit photo! What a smart little thing she is! I bet she can count to 5 already! Love the Cider Mill photo!! So glad you all had such a great time together. What wonderful memories you made!

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  5. So delighted to read about Addison's progress!!!!

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