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Curve Ball

Maggie is out of surgery. Things did not go as planned. As the doctor put it, "she threw us for several curve balls." We could not do the ETV. Once in her brain, he discovered that it would be too risky to proceed because of her anatomy. From what we remember, her pituitary was too close to an artery. As they were pulling out, a blood vessel burst. They had to get that bleeding under control before sewing up that side of her head and cutting open the opposite side for a shunt. That's when the neurosurgeon called us to tell us the disappointing news that the ETV wouldn't work. He said he'd come back to visit us in 45 minutes once the shunt was placed. We always knew this was a possibility, but were told her anatomy was "perfect" for the ETV. Guess you can't judge a book by its cover, even with an MRI.

Shunt surgeries are common, and it is rare to have serious complications. But two agonizing hours later, we were told what happened. During the shunt portion, they pricked an area that caused major blood loss. Within five minutes, Maggie lost more than 20% of her blood. The doctors hurried to get that bleeding under control but needed to give her a transfusion. Because Maggie is so hard to place an IV in, they placed a line in her neck. At first the doctor didn't like that they had done that, but it was a blessing in the end. Through that line, they were able to give her blood and it reached her heart quickly.

Instead of a regular recovery room, we are in the PICU. They took her in for a CT scan because of several concerns they had during recovery. She is in pain and cries a lot. We feel so helpless. Wow, this is not how we envisioned today.

P.S. I'm sure if our awesome neurosurgeon were to read this he'd roll his eyes at our amateur attempt to explain things. I'm going to get the medical records tomorrow and read what actually took place. But you get the idea, and my head hurts to think about it anymore.

Getting prepped for surgery.
The best part about the surgery waiting room...Lorna Doone.
Getting ready for the CT scan
She just wants to be held.
Wicked looking!


Comments

  1. Oh Millie, I love you, we are praying, she is such an adorable little girl, I'm sorry you have to feel worry like that

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  2. Oh, my stomach aches for you guys. Being positive about life is so much easier when everyone is in excellent health. Hugz.

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  3. Oh, my stomach aches for you guys. Being positive about life is so much easier when everyone is in excellent health. Hugz.

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  4. My heat is aching for you. I'm sorry today went so rough. You guys are fighters, that's for sure. It sure is hard to see sweet Maggie in these pictures... she is just so beautiful though even all hooked up to tubes! I hope the recovery goes much more smoothly. Thinking of you...

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  5. Oh gosh, Millie, this just breaks my heart. I am so sorry that you are having to go through this and that Maggie has to. She is so precious and it is so devastating to know your child is in pain and not be able to comfort her. My thoughts and prayers are always with you. I love you and your family so much!!!

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  6. so sorry to hear things didn't go the way you had hoped. I remember sitting in the PICU, unable to touch my (then) baby. He was pulling his intubation out so they tired his arms to the sides of the crib. All you want to do is hold your baby..... My heart breaks for you. You, as always are in our prayers. And i think you did great explaining. By the end of this you probably will be able to do that better than the doctors! The Lord will help you through this, just keep doing what you are doing....

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  7. So sorry to hear things didn't go as planned. She is definitely a trooper! I can speak from experience that the "neck tube" is no fun...even for an adult. I can't imagine watching such a little thing be so uncomfortable. Prayers, prayers, and more prayers coming your way! Hang in there...and bless Lorna Doone!!

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  8. We are so sorry things didn't go as planned. Hopefully Maggie will recover quickly. We are praying for you!

    The Ockeys

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  9. Oh Millie! :( Dang it! I'm sorry. Those are some wicked curve balls! What a nightmare. I don't have any Lorna's, I'll have to make due with Oreos. I just bought the costco pack... you know where to find me.

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  10. I'm so sad for her and you and your whole family! I hope she feels better soon and you will know what to do next. Poor baby--breaks my heart to hear that she is in so much pain.

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  11. The poor sweetheart. I hope sure feels better soon. You all will be in our prayers.

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  12. This so breaks my heart!! Poor sweet girl has been through so much already. Best wishes to you and your family!

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  13. I am so sorry! Poor sweet little thing. I hope she recovers quickly and it all turns out okay.

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  14. Randy read this post to me while I was cleaning up dinner, but now I just looked at the pictures which made me cry. I am so sorry and know the anguish of wanting to hold your little baby. I hope Maggie recovers so quickly. P.S I love the Lorna Doone picture--brought back some memories.

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  15. Oh Millie. I am so sorry to hear this. Bless all of your hearts. Hang in there sweet friend. Your strength is amazing. Sending prayers your way-

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  16. Tears. I am so sorry for all that took place today. You're in our prayers.

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  17. Millie my heart hurts so much hearing your news from today. I'm so sorry for the disappointment and sorrow you are having to deal with. I put little maggie's name on the prayer roll this morning and we are keeping her in our prayers. Love You!

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  18. Oh Millie, my heart is aching for you. You and Maggie are in my prayers and will be until all is well. Sending my love to you. Please let me know how I can help!

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  19. Oh Millie, I'm so so sorry! I wish it would all just go away. If only it were that easy. Many prayers coming your way.

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  20. So sorry for all the curve balls that have come lately. You're in our prayers.

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  21. You guys are all such fighters. I happened upon your blog...did not know you had one for this journey your family is facing. I am so touched by your faith and endurance. You and Matt have always been such an example to us and we love your darling family. Hang in there!!
    Maggie is amazing and we are keeping you all in our prayers! Hugs
    Amber Robertson

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  22. Poor, little Maggie! She's been through so much in her short life. She's a trooper and so are you guys! You guys are an inspiration with your good attitudes about everything. I know I wouldn't be able to go through this. My love and prayers are with you.

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  23. Millie, you don't know me. But I work with Francie Hansen. I teach 2nd grade at her school. If I remember right she said you were her niece? I can't remember. She told me about your story and gave me the link to your blog. I hope that is okay. I recently had a daughter born with hydrocephalus I think around the time that your sweet Maggie was born. My daughter Emma was born on August 7th and had a shunt placement on August 9th. She then had to have stomach surgery the same weekend as your Maggie's shunt placement for pyloric stenosis. We spent conference weekend at Primary's until she was finally able to come home. I have only read a few of your posts but I felt like I should post a comment and let you know how much my heart aches for you and also rejoices for your Maggie's toughness. Being the mother of a special needs baby is hard. You face the sadness every day that your baby isn't what you hoped and dreamed they would be. But yet you are so proud of how hard they fight and their determination. These sweet little angels go through more than they ever should. It isn't fair. But your family is beautiful and your Maggie is so sweet. She has matching shunt scars with my Emma. I would love to talk to you more. I kind of feel alone and don't have many other people to talk to that have gone through similar situations. If you don't mind, I would love to continue to read your blog. I pray for your sweet family.

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