10.27.2010

Back from the other side of the world


Since my last post my whole world has changed and literally turn upside down. You may recall that my husband, two children, and I sold practically everything we owned, sew machine excluded of course, to follow a dream and move to Beijing China. We set up shop just in time for for the arrival of baby number three, but due to a few question marks in our baby's health I flew back to the States with our nine day old, expecting to return to China with a wonder drug in about two weeks. Oh how wrong we were.

An MRI, 8 hour sleep study, and nasal scope later we learned baby Maaike was host to un--numberable cysts. Starting in her lower lip and tongue and following all the way down her trachea the cysts leave her only about 10% of usable airway. In a matter of days we found ourselves at our last resort and in the operating room.
At one month old Maaike had a tracheostomy. Because of the locatation of Maaike's cyst's they are, for now, inoperable. With a safe airway via trach we hope to push out any proceedures until she is 3 or 4 years old, but only time will tell.
I spent a very long month in the states caring for Maaike and learning all the ins and outs of trach care while my husband and two other kids tried to maintain a life of work, school, and play without a mom in China. After 33 days my husband sold almost everything we owned again, sewing machine excluded again, and flew with our 5 year old and 2 1/2 year old over the ocean and back to me.

As long as Maaike has the trach we will be here in the States making new dreams. Just this week I turned on my sewing machine for the first time since her birth, 5 months now. I made Halloween costumes. It was wonderful and therapeutic. My sewing projects for the foreseeable future will probably be more on the simple side, so I hope you can be patient with me. We are carving out a whole new life, one stitch at a time, and I hope you will be along for the ride.

13 comments:

  1. My prayers to you and your family. I can only imagine how hard this time has been for you, but I hope everything will work out fine for you.

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  2. So sorry to hear this but happy to hear you are all together. Well wishes to you & your family

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  3. I can't imagine how tough this last while has been for you - so glad you are together again and prayers for you and your family - especially Maaike!

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  4. I don't know what to say, except all the best, and one day at a time is a great way to do things when you don't exactly know what to do!

    In my thoughts.

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  5. I wish your little one and your family all the best. My Aunt is going through the same struggle with her youngest one who has a rare form of Leukemia... He is getting better with each day and I believe your little one will too!

    Your family will always be in my prayers.

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  6. My thoughts and Prayers go out to you and your family! Don't forget to make time for you and your husband. We didn't when our child had serious health problems and it took a while to get our marriage better again.

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  7. Oh my goodness! Surrounding your family with good thoughts ....

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  8. Thank you for the update. Remain strong and know that my thoughts are with you and your family.

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  9. You are brave to face all of this! A trach is a scary thing for parents! I work in the NICU so I am familiar with the challenges that many families with an ill baby face. As you probably have learned, though, the scariest thing to encounter is fear of the unknown! Arm yourself with knowledge and with God leading the way, you will continue to shine! Best wishes and CONGRATS on the addition to your family!

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  10. Welcome back! You have such a gorgeous family! We have all been thinking of you! Wishing you all the best!

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  11. What a moving story. I hope things get to be a bit more normal for you and your family. Continued prayers will be coming your way!

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  12. I'm new to your blog but hooked already! I just wanted to let you know that I am rooting for Maaike and for your family as a whole & will be keeping you all in my thoughts and prayers.

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  13. Six years ago this December my third child had Tracheostomy due to complications of open-heart surgery; she was two months old. She was decanulated shortly before her third birthday. I remember the isolation and exhaustion, but I also remember the wonder and miracles. If you need to talk you can email me. rainydaywren@gmail.com

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