Thursday, July 28, 2011

NG-tube update

I am in a funk and have been since we left the hospital with Reagan's ng-tube.  I find that the weight gain battles we are dealing with now are overwhelming and stressful.  I know the solution is to take one step at a time and focus on the daily goals but there is so much to think about that I feel like I am spinning my wheels.  I find that 90% of my day is consumed with thinking about Reagan's weight, even waking up in the middle of the night thinking about her weight.  I know that I will be able to shake this dark cloud soon but for now, I'm not pushing it.  Of course, the extreme heat and toddler that is cutting molars is not helping!

Reagan is still tolerating the tube very well, only getting irritated with it a couple of times a day.  The feedings are also going well and we are very pleased that she has gained about 4.5 pounds.  She seems to be stuck at this number though for the past several days so not sure if this is a plateau or just a stall.  We can visibly see the difference in her body mass and her coloring, she looks amazing and is happy most of the time lately!

We are trying to get in to see a local GI doctor to get a second opinion and also consider doing the g-tube procedure locally instead of traveling to Houston.  However, nothing is ever simple and it is taking a lot of phone calls and time to get her medical records transferred.  Either way, we are certain that a g-tube is in the very near future for Reagan.  I would be pleased if we could get her to an ideal weight and the maintain it for awhile.  But I am concerned that once the tube comes out, she is going to start slipping backwards in weight and we'll be right where we started 2 weeks ago.  Thank you for all of your support and everyone that has given such good advice and feedback!

4 comments:

  1. I hate that you are having so much stress, Dawn. You have had to deal with this so quickly, but you are doing an amazon job. I hope that if you decide to do a feeding tube, it will take off some of the pressure at feeding time (and allow you to get a little more sleep:). I'm so relieved she's gaining weight, though. It seems that the tube is doing its job. Give her a hug from me and Abby!

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  2. I'm so glad to hear about Reagan's weight gain, happy mood, and improved coloring. I will be praying for you all to have perseverance as you continue to make tough decisions in the future. Keep up the awesome work and I'll pray for you to have peace and trust that the Lord will take care of Reagan and guide you and her doctors to know what is best for her.

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  3. We are praying for you guys!!! In my work, we put in G-tubes. I'm sure you know about it, but it is pretty easy process. Anyways, big hugs to you, Wes, Reagan and Lauren!

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  4. I just want to send you a big hug! I am so proud of you Dawn! You are doing an amazing job with Reagan you are so very wise.You are always on top of her needs. I Love you!

    hugs


    Zenaida & Cristia Isabel.

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