April 26, 2011

Focusing on the bigger picture

That is what we are doing right now. I am trying to push away my worries and my fears and only focus on this sweet girl and how much better life should be for her - very soon.


Annabelle will be having surgery # 8 this Thursday, April 28th.
Please pray for her and her doctors, for Branden and I and our boys. Surgery is always so scary and hospital stays are always hard on all of us. It's difficult to be separated and it's lonely there.

For those that aren't aware yet, Annabelle will be getting a Gastrostomy Tube (G-Tube) on Thursday. To read more about G-Tubes click HERE. The short description is that a G-Tube is a tube inserted through the abdomen that delivers nutrition directly to the stomach. It's one of the ways doctors can make sure kids with trouble eating get the fluid and calories they need to grow.

Anyone who has spent time with us knows that Annabelle eats and drinks very little. We have been working on it and some days are better than others but sadly most days she just doesn't have any interest in food or drink. Thank goodness she is still willing to nurse twice a day. She is almost 21 months old (wow!) and is weighing barely 17lbs. She's a little peanut. But more than the lack of growing or failure to thrive as they call it, her doctors are all pretty confident that her lack of eating and lack of hydration is directly effecting her sever constipation and chronic UTI's. The hope is that with the placement of the G-Tube we will be able to ensure that she is getting the proper nutrition and hydration she needs to get her bowls working better to decrease the constipation and to flush her urine better so she stops getting these darn UTI's. It seems like it's sort of a vicious cycle - she doesn't eat because she's constipated, yet she gets constipated because she doesn't eat or drink - ugh! I am very hopeful that this supplemental feeding will help to resolve or greatly minimize these problems we have been having for so long.

Just to clarify a few things that you might be wondering -

1. She will continue to eat normally during the day. Her G-tube feedings will be administered overnight while she sleeps. She will continue to work with her Occupational Therapist (OT) to develop better eating and drinking skills.

2. She will NOT have a long tube coming out of her belly. She will be skipping the tube and getting whats referred to as a "button" right away. The "button" is a device that is flatter and lies against the skin of the abdomen. The button can be opened for feedings and closed in between feedings or medications.

3. This is NOT a permanent solution to Annabelle's eating problems. It is intended to be a temporary solution to help get her to where she needs to be nutritionally while she continues to learn to be a better eater. Once the doctor decides that Annabelle is able to take in enough nutrition by mouth, the button will be removed. Removal takes only minutes and is usually done in the office by the doctor or nurse. Once the button is out, a small hole will remain. It should be kept clean and covered with gauze until it closes on its own. In some cases, surgery is necessary to close the hole. Either way, the scar that remains will be small.

So that's it in a nutshell. Am I scared? Yep, really scared but I know in my heart it's the right thing to do. I am confident that she will soon start to realize the benefits of a full, happy belly. But, like the 7 times before, it won't be easy handing her over for surgery. I've been lucky in the past to be able to hold her in the operating room until the gas takes effect to help minimize her fears. I don't know if "lucky" is really the right word - it's actually one of the most difficult things I've ever done, but I wouldn't have it any other way. I can only imagine how scared my sweet girl is. She's smart and I know she remembers but I will be there with her holding her tight.

We will check in at the hospital at 6 am on Thursday and the surgery is scheduled for 7:30 am. I am hopeful we will be released on Saturday but if not then Sunday. I will post updates as I am able. I am unsure what we are looking at for recovery time. I welcome all positive (sorry, I can't deal with negative right now) G-tube stories anyone has to share.

Please hold us in your hearts this week. We need your prayers. As always, thank you for loving and supporting us. Our lives are even more blessed because you are all a part of it.

20 comments:

  1. Praying for you ALL and that this is the boost Little Miss Annabelle needs to become just Miss Annabelle!

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  2. You will be in our thoughts and prayers. We will be wishing for a speedy recovery for Belle. xoxo

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  3. I know you are doing the right thing too Nicole, I just feel it in my heart. Our prayers are with all of you this week. Much love. Andrea

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  4. Nicole, I am definitely sending you my best and hoping that everything goes well this week. We didn't get to talk much more at DL about this and the whole weight issue. But I hope so much that this helps Miss A gain a little weight and as you said, help fix the digestion issues. From one "little peanut" to another, we love you guys. Pls update too! xoxo

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  5. Oh Nicole, you will all be in my heart and prayers this weeks. You are doing just want your sweet Annabelle needs. Much love, my friend.

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  6. Aaron told me this was coming up and you all have been in our thoughts and prayers. I will epsecailly be praying tonight and tomorrow for all of you.
    WIth love from,
    Greta

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  7. What a very thorough and clear post to outline what and why Annabelle is getting the g-tube. It sounds like the very best plan. We will be keeping her (and you!) in our prayers and thinking of you especially on Thursday and during recovery.

    Hugs and all our love from Buffalo - Liz

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  8. Lots of positive thoughts and love going your way. I'm sure this is right and will help little Annabelle grow stronger and more healthy.
    Thanks for all the explanations too.

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  9. Thanks for the update mama. It sounds like a good solid plan. We'll keep you all in our thoughts.
    much love
    xoxoox

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  10. Big hugs to all 5 of the Summers.

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  11. We will definitely continue to keep Belle and your family in our prayers...especially tomorrow. I look forward to all the good reports that will follow! Much love!

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  12. We'll be saying extra prayers for your oh so sweet girl and the entire family. Thinking of you all, Angie and fam

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  13. Your Annabelle is such a blessing--to you and to those with whom you share her. We will be praying for this procedure and for her to gain the nutrition and fluids necessary to decrease the other issues. Stay strong, mama. There are LOTS of folks praying for your family!

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  14. I hope all goes well for Annabelle and your family! I hope that soon she is getting all the nutrition that she needs.

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  15. Nichole, it sounds like you are doing the very best thing for your darling daughter. I have a dear friend whose granddaughter has CF and her G-tube made all the difference in the world in "getting those calories in". I will be keeping you and your family in my prayers. Thank you for your very CLEAR and informative posts. Sending hugs & blessings♥♥♥ Debbie Kennedy

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  16. Hi doll.

    It's Mingie's friend Gail. I will be keeping you and sweet Annabelle close to my heart tomorrow. I know it's never easy handing your little one over for surgery, but you are an amazing woman and I think it's so wonderful that you always do with is best for Annabelle, without hesitation.

    My girlfriends daughter was born with a heart defect and to make a long story short..the G tube made a HUGE difference for Kaelyn. She was able to get all the nutrition she needed at night that she couldn't get by eating during the day. It kept her strength up and helped her reach where she is today. Recovery was smooth and mostly uneventful.

    Please give Annabelle a special kiss from me tomorrow morning. I will be checking my computer for updates.

    Mwah.

    Gail :)
    xoxoxoxo

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  17. Hi Nicole,

    I know it's been awhile, but I wanted to know I still have you and your family in my thoughts and prayers. I have always admired how much strength you have Nicole. Your beautiful daughter is blessed and she is a fighter!

    Love,
    Tracy

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  18. Oh, Nicole, I've been out of the loop!! By now it's probably all done, but I am praying for strength for you and a quick healing for your sweet sweet Annabelle. I hope that the change you see in her is quick and so positive. Lots of love to all of you!

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  19. The boys prayed for Annabelle yesterday morning and Carter prayed: "the people who have to make the hole in her tummy never have to make it again." Amen! And I love the pic of her on this post! Can't wait to hear that the tube really improves things for her.

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  20. Just reading your postings tonight. I hope all went well with the surgery. What a scary thing for you to endure. I can empathize with you completely. I hope little Annabelle thrives with her new button and that mommy can start feeling better for the choices you have had to make. I also hope to meet you all this year at the conference.

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