Tuesday, September 23, 2008

Enjoying Her Everyday

Every Tuesday Magdalena's hospice nurse comes to check on her, and I was ready for today! First, Magdalena pulled her tube out of her nose again! After talking with her nurse, we decided not to put it back in again, but just to feed her whenever she gets hungry and allow her to take in as much as she physically can. She does need to gain weight. However, putting on weight will cause more strain on her heart, so our goal is for her to be comfortable by eating enough to allow her to sleep well, feel well, and to fill up her diaper enough during the day. We are not going to just "force" calories down here.

Second, we may take her apnea monitor off during the day soon. She hasn't had spells in awhile and may have moved beyond that stage. It isn't our highest concern anymore. We just want to be able to enjoy her beauty and sweet personality without cords and tubes attached. Sometime in the next few days we are going to download the information from the monitor so that a doctor can tell us how many times she has had a true apnea spell while it has been on.

Although I will still ask many questions to feel 100% wonderful about major decisions Noah and I make concerning surgery, I am already feeling a little more peace about not having it. The nurse reminded me of the many complications she could possibly have during it that a normal baby wouldn't have, which would take her life instead of giving her longer time. Early on Noah and I agreed that we wanted to just enjoy her for however long we had. We didn't want to hold on for so long that she had to endure more pain and that we were focused on what we could do to fix the unfixable problem and forgetting just to enjoy her.

9 comments:

  1. Anonymous10:36 AM

    God Bless your litle darling and your sweet family! May your precious little daughter continue to bring you happiness each and every day!

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  2. Too many times we hear about a fragile little one who has surgery and never recovers. I think in your position I would have made the same decision you did.

    Enjoy her! She is such a treasure. :)

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  3. Anonymous2:17 PM

    Being a Mother, it means being selfless. You are putting her needs first. Every decision you make is for her, not yourself. You're a great Mom and Dad. She is a lucky girl to have you.

    Lisa

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  4. Hey Julie!
    I would love to meet you also. We have continued to pray for your family. We have a big doctor's appointment in Jackson on October 6th with Dr. Perry. Please pray for God's peace to be with Shea and I as we will find out more about Mary Glenn's health and diagnosis. Dr. Benton let us know you e-mailed him...that was very sweet. Keep in touch. I check your posts daily!
    Love,
    Bethany

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  5. many many prayers and much much love - my students and faculty are slowly but surely collecting pop tabs in Magdalena's honor.

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  6. Anonymous8:58 PM

    Hey Julie and Noah...
    We are still praying for you. You are being such great parents. Thank you for your updates. She is a very blessed little girl to have the two of you taking care of her!
    Love
    Rachel and Chip Wall
    Hattiesburg, MS

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  7. As we have discussed, the surgery area is very gray -- not right or wrong and something that each family has to choose to the best of their ability what is best for their sweet baby. But you and Noah continue to show such wisdom under such pressure. God is good in showing the rest of us that He does give grace in time of need. I love y'all and your sweet girl!!!

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  8. Anonymous8:52 AM

    Noah and Julie,

    Wow, to be faced with such decisions. Be assured of our love and prayers.

    Ken

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  9. What a hard decision to make. I am glad that God is giving you peace. Your priorities are certainly very brave and commendable, and I know he will bless that.

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