Friday, August 28, 2009


Grace, you have had your feeding tube since March 2007. The picture below was taken the day you got your Mic-Key button (feeding tube). If you only knew how much Mommy and Daddy hated to put you through another surgery. Your body was just working so hard to heal and you would get so tired that you didn't have any energy left to eat. Of course from the picture, you definitely don't look like you were lacking in the nutrition department but that was because we were using a NG tube to feed you to bulk you up so your body/heart could heal. Mommy would have to change that out every time you pulled it out or it got yucky which ended up being sometimes weekly. I would have to stick it down your nose and down your throat and then listen with a stethoscope to make sure it was in the right place. After several months we realized that you were going to need to get most of your nutrition this way. We were advised, researched and realized that the best option for you long term, would be a G-tube (feeding tube in the stomach) which only had to be changed out every 3 months or so and did not affect your eating and swallowing. Looking back, we are so glad we made that choice. Yes, there were many nights and days of you and mommy or daddy, getting soaked when we forgot to clamp off the tube, or you decided to go poopy when we were feeding you and spew all of the milk out of your tummy. There were feeding pumps and alarms and one ER visit that was so traumatic for you and Mommy that I promised you I would never put you through that again. Your g-tube came out in the middle of the night and I didn't find it until the next morning. The hole in your tummy had started to close and Mommy could not get it back in. We still had another heart surgery to go and you still weren't eating enough on your own without the tube. Daddy was in Korea so I had no other option but to take you to the ER. If I had it to do again baby I would have demanded that they take you to the OR and sedate you to put it back in instead of doing it in the room. However, the pros of having it were that we didn't have to hold you down every time we changed your NG tube anymore and eating became fun for you. You got out of taking many "yucky" medicines because you had it and we never once had to worry about you getting dehydrated. We were also able to keep you out of the "failure to thrive" category as you were able to gain weight from Pediasure. As with anything, there were pros and cons, but I truly think looking back over it all, it was the best option for you.

So now on to what this post is really about :) On August 13th, 2009 we took your G-tube out for good. We have not been using it since December of 2008. There are no more looming surgeries ahead and you proved that you can sufficiently gain weight on your own. We had an appointment to have the doctor take it out on August 20th but the balloon popped in your button,it was leaking and needed to be changed. We called the doctor to see if we could just take it out and he said yes, he would take a look at the hole the following week to make sure it was closing properly. You were really upset at first as you thought mommy was going to have to change the tube out. I asked you if you wanted to take it out and you said yes. You amazed mommy and daddy, as you stuck the syringe in the end of it and with a little help, pulled out the water in the balloon and then you just pulled the tube right out. I am so glad mommy never let you try that before, as we may have never been able to keep that thing in. At our visit last week, he said the hole looked great and that the inside of the hole was closed. The outside will take some time to fully close. Mommy and Daddy still find ourselves saying be careful to you Grace when you slide down off of something, or go to climb up. After having it for 2 years, it has become habit to make sure we are careful with it. We are so glad you have more freedom now and you constantly tell us look no more tube :)

1 comment:

Jerry said...

Wow ...I'd forgotten how much our baby girl went through. So much while you were in Virginia. It is a real learning experience being a new parent. You and Ryan are special people . You have gone through a lot and handled all in stride. May God continue to bless you