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Thread: A Year Ago Today

  1. #1

    Default A Year Ago Today

    A year ago today, I got startling news when going to what was supposed to be a routine prenatal appointment. The ultrasound the day before had found that the baby growing and moving in my belly had enlarged ventricles in her brain and signs of Arnold Chiari Malformation. Before I even left the building, I was scheduled to go to Sacramento to meet with a geneticist and have a level 2 ultrasound. Luckily, my mom was already on summer vacation (she's a teacher) and had come to the ultrasound with me the day before and the appointment on that day, so I didn't have to drive myself. Instead, I called my husband and got on a 3 way call with the geneticist who asked us a million questions, but didn't really tell us much. My mom drove to Sac, while I cried worrying about this long awaited baby. Aaron left work and met my mom and me for lunch where he tried to convince me to have an amnio if they couldn't tell what was wrong from the level 2 ultrasound and let me tell you.... that was NOT going to happen. No offense to anyone who has had one, but I WAS NOT going to risk this pregnancy just so we could be "better prepared" for what was to come. Not happening. We headed over to the genetics dept to meet with the geneticist for a few minutes before heading to the level 2 ultrasound. The tech was awesome and obviously very experienced. She printed a TON of pics for us, which was really nice. Here are a couple of my favorites


    The baby was sitting up really high with her butt pressed into my ribs, so the tech was having a hard time getting a image of her full spine. She had me get up and move around, use the restroom, etc. After a bit of what I like to call ultrasound yoga, we were able to twist my body, the bed and ultrasound wand into just the right position so they were able to see just what they needed to see. The tech went out of the room while the perinatologist viewed the images. Aaron and I waited in silence (except when he again mentioned an amnio.... still not happening) until the perinatologist came in to give us the news. Our daughter had a neural tube defect- Spina Bifida. We were told she would probably not be able to walk, would have urinary and bowel incontinence, and depending on how bad the extra fluid got in her brain, she could have brain damage and cognitive delays. We were crushed... absolutely crushed. We went back to the office with the geneticist who gave us the option to terminate. Really? We were not going to throw away this baby that we longed for. We were given a lot of bad (incorrect) information from the geneticist and were told we would be getting lots of calls and appointments set up in the coming days. We all left with lots of questions, fear, sadness, and, honestly, some anger at God. What had we done to deserve this news after trying and praying for this baby for so long? It was not fair. That night and the next couple days were filled with lots of tears and anxiety. I had always felt like I was supposed to be the mother of a child with special needs, but had told God on several occasions, "anything but Spina Bifida." But, here we were... God had given us a child and she was going to be born with Spina Bifida. It took me only a couple days to get to a much better place. I realized rather quickly that God had made me with certain gifts and given me specific life experiences because I was meant to have this precious girl with special medical and physical needs. I could do it and everything was going to be ok. My husband has taken a lot longer to come around... honestly I don't know that he has really. He's still pretty angry at God and not happy with life in general. Don't get me wrong... it is horrible to watch your child go through painful surgeries and really hard trying to weed out what is "normal baby stuff" and what is symptoms of Chiari compression, syrinx compression, shunt failure, etc. It's hard, stressful and heartbreaking. But, the overriding feeling I have when I look at my daughter is joy and love. She is beautiful, strong and so full of joy. I look back now at how I responded to the news that my daughter would have Spina Bifida and I'm quite disappointed in myself. Natalie is perfectly and wonderfully made just the way she is. And I am perfectly and wonderfully made to be her momma and meet her needs just the way SHE is. Why did I ever doubt God and His perfect purpose for our lives? This life will continue to be harder than I could have imagined, yet more wonderful that I could have imagined as well.


    Me: Robin Follow As Natalie Blooms DH: Aaron

  2. #2
    Join Date
    Feb 2013
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    Indiana
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    Beautiful story. Thank you for sharing. Your little girl is beautiful! It takes a special family to take care of a baby with special needs. Yours obviously has that "something".
    Me (28) DH (32) DSD (9) DD (born 12/22/13)

  3. #3

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    Natalie is beautiful and she is very lucky to have such a wonderful mom


    Anne (37) DH (37) Olivia (4) Harrison (1)

  4. #4

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    She is just beautiful. You are such a wonderful mommy.
    DS1 4 DS2 2 Expecting 10-13

  5. #5
    Join Date
    Jul 2008
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    11,918

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    This made me cry... happy tears. She is so precious. I love how you fought so hard for her, and still do. Thank you for sharing with us. Its good to see you back here.

  6. #6

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    Oh Robin. This made me cry. You are such an inspiration to me. Your precious daughter is so blessed to have you as her mommy. I think of you both all the time and am so glad you posted this.

  7. #7
    Join Date
    Jan 2011
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    Chicagoland/NWI
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    She is beautiful and you are doing exactly what God intended for you to do. Thanks for sharing.
    Phoebe Grace 6-22-11; 37.5" and 26.2# at 2 years old! She is my wild child!
    Me & Geoff, 40; DD Phoebe, our June Bug

  8. #8

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    I knew I wouldn't make it through this post without getting choked up. There is nothing more beautiful than the unconditional love between a mother and child. I'm just in awe of how gracefully you and your family are dealing with all the daily challenges. You are absolutely right when you say she is perfectly and wonderfully made just the way she is, and even you were born with this journey already part of His plan.

    And oh my gosh, seriously, could she be any CUTER?!?!
    ~Andrea~


  9. #9

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    :sniff:

    You know what? Life is hard no matter what. My experience is that God gives you exactly enough grace to handle it.

  10. #10

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    Beautiful story. Thanks for sharing

  11. #11

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    She is a beauty, Robin! Thank your for sharing your story. And welcome back.

  12. #12

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    thanks for the kind words, y'all

    Me: Robin Follow As Natalie Blooms DH: Aaron

  13. #13

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    This post makes me so happy. Natalie is so beautiful.
    Karen (28), DF (28), DD (3), DS (2 months)


    Beanpop's Fluffy Butt Diapers *GRAND RE-OPENING 3/13*

  14. #14

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    I loved reading this, Robin. Your journey has been and continues to be an inspiration. Thank you so much for allowing us to share in the ups and downs that you and your family face daily. Your daughter is beautiful and perfect. The pictures you shared are precious.




  15. #15
    Join Date
    Jan 2007
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    14,283

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    Natalie is so beautiful. Thank you so much for sharing your story.

  16. #16

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    She's adorable and blessed to call you Mama!
    Katie~
    DD1 (7) DD2 (4) DS1 (22 months) Baby #4 EDD 7/13/14

  17. #17
    Join Date
    Nov 2011
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    Hawaii
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    She is a beautiful and amazing little girl! And so lucky to have you as her mommy! Thanks for sharing this Robin!
    Jennifer


  18. #18

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    thank you for sharing! She really is beautiful and looks like her mommy!
    How has her mobility been? She seems to be sitting beautifully in your pics and looks so bright and alert and lovely.



  19. #19
    Join Date
    Dec 2007
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    10,971

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    Thanks for sharing your Natalie's story. She is so precious and adorable.

    Jeanne, mom to Dev0n (5) Isabe11e (4) and C0rbin (3) Vio1et (16 months)


  20. #20

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    Thanks for sharing! Natalie is so beautiful!
    Laura (32) DH (36) x 4

  21. #21

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    She is absolutely perfect. I love the "When God made me he said "Ta dah!" shirt!!!

    Meg (30), DH (40) & the 4 J's (6.5, 4.5, 3, 1.5)

  22. #22
    Join Date
    Sep 2005
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    She's beautiful! I'm sorry I don't remember your story (I had been MIA for a while) but it's amazing to read. My cousin has a daughter (now age 5) with spina bifida and that little girl has amazed her parents beyond words. It's totally because of their attitude that she's been able to achieve the things she has. She leads a full, happy life and really doesn't seem to want for anything more. I see the same things happening for your family!

    ~ Cassie, mama to Madison (8), Ali (4) & Wesley (new dude!)


  23. #23

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    Quote Originally Posted by tami View Post
    thank you for sharing! She really is beautiful and looks like her mommy!
    How has her mobility been? She seems to be sitting beautifully in your pics and looks so bright and alert and lovely.
    She has good movement of her legs. She doesn't really move her toes much if at all (they are also hammered and pulled up) and only flexes at her ankles. All that said, She will likely walk with braces on her ankles to help keep them from rolling. She was a little late in rolling, but once she got it one way she was rolling all over the place within a week. She sits up really well now... nice and tall. We've been working on army crawling and getting up on all fours, but that's with lots of support right now. here's a video of her kicking her legs in the bad tub. I made this for the As Natalie Blooms FB page to show the difference in her leg movements when she was having some changes due to syrinx and tethered spinal cord. http://www.youtube.com/watch?v=S1zzfLRusbo

    Natalie has a more rare complication called syringomyelia where she has pockets of fluid within her spinal cord. She had a tethered cord release back in March and had the syrinx that was low down by the tethering drained. She just had a MRI a week ago where we saw that the syringomyelia overall was worse and the syrinx at the bottom of her spinal cord was back and even bigger. So, she will be having a chiari decompression in a couple weeks. The fear with these issues is that the nerves in the spinal cord get compressed by the syrinx and cause permanent nerve damage. A friend we have met has a son who had similar function to Natalie and is now in a wheel chair full time bc of syrinx that was left untreated too long.

    Me: Robin Follow As Natalie Blooms DH: Aaron

  24. #24
    Join Date
    Apr 2008
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    14,758

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    She is perfect in every way!



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