Monday, September 29, 2008

54 Days

It amazes me how much time we have had with Magdalena, and how quickly the time has passed by, and today we were able to celebrate 54 days. No matter how much time we have with her, it will never seem like enough. Sometimes my heart cries out how much I want to keep her when I look into that sweet face as she is chatting with me, but God's plan is much greater. Through her life, no matter how long or short, God is using her to glorify Him in many ways, many of which we will never know. Although I know this, her presence has made a huge impression on my heart which will never go away. For a little bit of time I forgot she was sick, and I really began to think that she may be one of the less than 5% of T18 babies that make it to their first year. However, the cardiologist appointment has brought us back to the reality of how weak her little heart is, and although I want her as long as possible I am praying that God will grant her comfort before my selfishness.

Realizing that we wanted to appreciate every moment our photographer, Andrea Reed, returned to Clinton on Sunday to take some family pictures. We let Magdalena sleep all morning so that she would be fully rested, and since we were taking out her tube for the shots we needed to be sure that she got a really good lunch in her belly. She had other plans because on the way to Loli's house for the pictures she yanked that tube right out of her nose so fast I couldn't stop her! We did what we could for her belly to feel satisfied, but I was worried she would cry the entire time. Magdalena slept through the entire session! We barely got her to crack her eyes open a few times. Just when Andrea left, as you will see in the pictures below, Magdalena opened her eyes to see what was going on at Loli's house.

After pictures we went to church and just as we arrived she wanted a snack. I would rather this be a good nap time for her so that she is not a distraction to others by her cute face and sweet eating noises, but there was nothing that I could do. She sat right behind her favorite nurse, Cheryl, so that she could let her presence be known to someone she loves! Cheryl always helps to keep Magdalena's belly full by replacing the tube when her crazy mommy wants to take pictures!

Landon, Magdalena's cousin, who is about 6 months old, and Magdalena posing together in their matching Jack-O-Lantern outfits. He has gotten good at smiling for the camera and Magdalena is trying to take some tips from him!

Magdalena is her fall outfit getting ready for a family picture. Daddy dressed her, and look how he put two legs where only one leg should be!! She doesn't seem to mind because she loves her special time with Daddy. A Roberts' Family Photo

Magdalena posing in her new pumpkin hat

29 comments:

  1. i have come here from Kenzie's sit and have been following ya'll's story. Magdalena is just a perfect lil girl! i pray that GOD will give Magdalena several years to grace you with her presence. she looks like a cuddly lil baby! good luck may god bless the 3 of you with many many years with your sweet Magdalena

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  2. Now that's the sweetest and smallest lil pumpkin I've ever seen! We are praying that Magdalena's heart will continue to work and provide her many more days/ weeks/ months and even years with you and your sweet family! I love the new family picture!

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  3. She is just darling. The pumpkin pic made my heart melt! I know that God has his own plan, but I hope that you DO get her for a long time, a year plus hopefully!

    Thinking of you lots.

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  4. You are all so beautiful!

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  5. Anonymous5:11 PM

    What a beautiful girl. She is absoulutely gorgeous. Magdelena is so special. May her days with you going on and on. She is truly a gift from God. God bless you all.
    Lisa

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  6. What a cute Jack-O-Lantern! You know I love my pumpkins! Julie, I knew it was you holding Magdalena in the second shot because I saw your hand. :) I miss you bunches. I hope I'll get up there to see you soon.

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  7. Well she sure is a cute little pumpkin, thanks for sharing her precious pictures!

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  8. Anonymous10:44 PM

    I am not a medical professional, but my experience with T18 tells me that you sometimes need to listen to the medical information, and then put it away and visualize a long and happy life with your baby.

    It hurts too much to think that each day is numbered, so in your own mind and heart create a lifetime of visualizations - celebrating every hope, and every milestone that you want to achieve.

    Hope, happiness, and a will of iron put out an amazingly strong healing energy. Your baby is a survivor, and your love and your positive energy will make every moment she has, and every moment she fights for a little less difficult.

    We are sometimes so worried that we have to say that we need to realize that we have our own desires, but that they must come second to "God's plan". In my humble opinion (I do not want to disrespect anyone's beliefs in any way for any reason)I believe that as mothers, we are God's warriors. He wants us to fight the good fight, to never give up on the gift of life, and to declare the miracles we need in our lives. Jesus's task was to deliver the "Good News", He told you that while you must be parted with your angel on this earth, you will live together forever. The life we have on earth is as sacred as our eternal life in Heaven. Proclaim your long earthly life with your child, visualize that life with your child, continue to thank God for that life with your child.

    When your angel returns to her Father in Heaven, you will have benefitted from each day banishing as much fear as possible, and from living in hope and with a positive outlook. You will be more balanced and strong in the face of grief, and by training yourself - or forcing yourself- each day to claim the positive, you will move forward through your grief a little better.


    I am in awe of you, and cannot imagine the beauty God sees in you, and the faith He has in you to entrust such a precious child to you.

    Remember, you are the daughter of a King. Live with royal power and authority each day.

    Sometimes a life's journey is special because it creates a special Mommy Warrior who inspires an entire generation. Your warrior spark can light countless candles.

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  9. Anonymous10:59 PM

    Hi Noah and Julie,

    I am a sorority sister of Lori's from DSU which is how I became aware of your little, beautiful baby! I read your blog each day and pray for your family daily. I have become so attached to little Magdalena. I think she is so sweet and adorable. Keep fighting the good fight and know that Magdalena is loved by so many that have not even met her in person! Keep updating us, I love to read your blog.

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  10. Nicole7:24 AM

    Mom has definitely kept me updated with your precious new addition to your family, Julie! I love keeping up with you guys on the blog. Please know that Wes and I are lifting you, Noah, and little Magdalena up to the throne room of our great King in prayer! Keep glorifying Him!

    Love,
    Nicole Register

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  11. FYI - Landon just turned 5 months

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  13. Awww... She is so cute in her little outfits!! I love the photos! Thank you for sharing!!
    Love, Justin and Laura

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  14. P.S.God is using you both for His glory and a witness of His love during the hard times. God is in controle and He reminds me of that daily. If you ever need anything... We are right next door. We love you both very much.
    Justin and Laura

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  15. Your daughter is absolutely BEAUTIFUL! I love how tiny she is-it actually makes me miss the days when my preemie was that small.

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  16. oh my.

    the photo of the three of you is simply ... out of this world.

    We are so moved by it.

    Thank you.

    Your daughter is such a blessing. We feel like she is almost family!

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  17. You have such a beautiful family! God bless you all.

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  18. It was good seeing y'all on Sunday night. I am so thankful that Rachel and I have had the chance to meet the 3 of you. We are excited that Noah has been able to take on the new role at the church and our opportunity to get to know y'all even better will increase! Nettie has been praying for Magdalena at night when we have our prayers before bedtime. It is so cute because she says "Dear God, thank you for baby Magdalena and MISS Noah and Miss Julie..." Praise be to God.

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  19. Jennifer Hurt Williams9:32 PM

    That's the cutest pumpkin I"ve EVER seen!

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  20. She just makes me smile :) She just hits my heart in a spot that Jacob carved out to be filled by other babies made so special like him.... (that's what I was trying to say yesterday but I just couldn't get the words right). You know I love you guys.

    Karen Fahmer
    fahmer.blogspot.com

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  21. Suzana12:49 AM

    Hi Julie and Noah,

    I heard about your sweet Magdalena a few weeks ago, when talking to Paul (Noah's father) wishing him and Bonnie a Happy Anniversary. Recently I found the blog, and spent several hours reading it, from the start. You are both amazing people, and your baby is clearly strong and full of will to keep going as long as her heart allows...I am in awe of your strength, and your ability to deal with your special baby so well, and share all this through your beautiful writing.

    (I knew Noah when I lived in Augusta for about a year, working w/Paul, when he was about 4? years old, and I must say he's changed a bit).

    You are all in my thoughts...

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  22. Our church is praying for you all. Thank you for your lovely witness.

    (Friends of Jason and Sheri)

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  23. Yes. I absolutely love how men dress babies. It is genuinely sweet to me. We are so honored to know y'all as a family. And yes, praise the Lord for Cheryl!!!!

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  24. 54 days that is great. Our Magdalena (also a T18 baby)has been with us for almost 150 days. It is amazing how fast the days go by. Magdalena is beautiful and I'm glad she is doing so well. Enjoy your time together.

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  25. Those are gorgeous family photos. Thank you for sharing Magdalena with us all!

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  26. I just love your family photo. Love just radiates from you guys. She is getting cuter by the day and I am praying for her heart and breathing to improve. She is truly a miracle and I pray that the Lord has many days and weeks and even years in store for her in His plan. I pray that every day brings new joy as you are blessed with her little life that has had such a big impact out here. I pray Gods blessings for you in all the days ahead.

    Love, Laurie in Ca.

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  27. She is absolutely beautiful and precious.

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  28. thank you for sharing your experience under God's hand with us, Julie and Noah. i have been speechless every time i look and see how God is using and shaping your family. love from hattiesburg!
    -rebecca griffith

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  29. Oh my goodness, I didn't realize exactly how tiny Magdalena is! She is such a precious little gift from heaven...love her to pieces!

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