Thursday, September 25, 2008

Tube Update

Noah and I are so blessed to have a friend who is a NICU nurse. Medical professionals will give you their advice, but having a friend who knows your heart is much easier to trust. Late last night I asked our special friend her opinion on the bottle feeding and the medications that the doctor had wanted us to begin giving Magdalena. She asked just the right questions to make Noah and me realize that we want to return to our old way of doing things. Magdalena has been using every ounce of her energy to bottle feed, which means while she has been awake she has not been the same smiley, fun girl we know. She has been upset and fussy. We are going to return to doing at least the continuous night feeding, which is a little machine that we attach to her tube which gives her a little bit of formula continuously over night. By using this machine she can sleep through the night and reserve her energy for playing with mommy and daddy during the day.

11 comments:

  1. eclammie@yahoo.com7:21 AM

    Magdalena looks so cute in her little basket. I love the furrowed brow. Thanks for the image of how small she is. That shirt really looks like a dress. It helps me picture her better. I am glad you feel more at peace about your feeding decision. I hope it will be a good solution. Still praying for y'all. Erin

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  2. I think it's a smart decision, to help her be happy and comfortable. And I know it calms your heart to see her happy. I love the way y'all really weigh every choice. What a blessed little girl she is to have such sweet parents.

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  3. That sounds like a good idea. My son Ricky has cystic fibrosis, and a lot of kids with that have g-tubes as well. For some, since they don't feel well enough to eat, the best way to get those calories is the overnight feeding -- therefore reserving their energy for healing from infection, etc.

    I know that making these huge decisions is very difficult. Sounds like you are doing a great job, though!

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  4. Happy seven week birthday Magdalena! What a gift each day is. The picture is beautiful. I think the feeding tube is a good idea if its letting her be more comfortable and happy. Thankyou for sharing Magdalena's life with others. Our little Samuel was born with Trisomy 18 as well. His heart defect was severe (missing a wall and from the pictures it looked like half his heart was really too small. We were glad he was born alive and that we were able to spend one hour with him...it will never be enough time though, and I still have to remind myself that there was nothing we could have done to extend his stay. I hope you have lots of more days and weeks to love her up. By the way, I love her name!

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  5. Oh, Julie, I have been praying for you to make a wise decision about her feeding and one that you are at peace with. There are days I think I will just let Annabel eat what she will by mouth and not mess with the tube. But at 3 1/2 yrs. she still needs the extra nutrients and vitamin that she is not getting orally. I see each day that I am diligent her energy level, i.e. sitting, reaching, standing, so much stronger. Yes Magdalena does have a long road and yes you will tire, but you are so blessed to be given so much time with her. Will continue to pray that her days are more than the stars in the night sky. Thank you for this update.

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  6. Charis Smith11:21 AM

    what a doll. just beautiful! please know that we are praying for you all in Colorado -

    much love -
    Charis (Fliermans) Smith + family

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  7. Dear Julie and Noah,

    I have really been praying that you will be given wise medical counsel and your friend sounds an answer to prayers!

    Your little Magdalena is such a strong little fighter and I pray that you continue to be guided by wise physicians, nurses and counselors so that you can make the very best decisions for her.

    I also pray that you have an abundance of great help to share all the daily responsibilities of life as well as the loving care of your sweet princess.

    What wonderful timing that Noah can be home more and is also able to do what the Lord has called him to do. You are such a wonderful family. I wish I lived close so I could be part of the "team" but know that I often lift you in prayer and am honored and grateful that you share Magdalena with all of us.

    May God continue to bless and keep you and hold you tightly in the palm of His hand,
    Kathy

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  8. I love the picture of her in the basket. She is so tiny and even more so beautiful. I am happy to hear that you have made a decision that you are at peace with. You are both great parents and Magdalena is a lucky little lady! :-)

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  9. Mommy knows best!!!!! Happy Birthday. I love that you are following your heart.

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  10. When God gives you peace like that you know it is right... You both are doing such a great job with her and loving her. We are praying for you all every night.
    We love you,
    Justin and Laura Estrada.

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  11. Anonymous6:37 PM

    Nothing is more beautiful than parents trusting their instincts after carefully weighing their opportunities. Your parents must be filled with pride that their babies are doing God's work with their own precious baby!

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