March 31, 2010

Remembering and Reflecting (long post)

It's hard to believe that it has been a year since we found out that our precious baby would be born with Spina Bifida. When I think back to that very sad day in the doctors office I can hardly recall the exact words they used to tell us but I can still feel the very raw and deep pain I felt when hearing them.

So much has happened since that day last year - so many scary moments while pregnant and so many wonderful moments since Annabelle's birth that it's really hard to mentally go back there. But with it being 1 year since the diagnosis I couldn't help but think about it a lot this past weekend. Because I didn't blog as much last year, I searched through my old e-mail to find my emotion filled words from that week that changed our lives forever.

E-mail dated: March 23, 2009

Hey friends,

I am writing asking for some special thoughts and prayers for my little baby in my belly this week. My OB called today and it turns out my sequential screening test came back positive. Apparently the baby has a 1 in 27 chance of having an Open Neural Tube Defect. I realize that until I have the follow up ultra sound she has requested (hopefully tomorrow) I am stressing and worrying over maybe nothing - but maybe not. I am feeling really sad and really scared right now. The little bit I have read about open neural tube defects since I got the call tonight at 5:00 has not been good.

Thanks for listening. I will of course keep you posted on what we find out.

Nicole


I was blessed to have received so many e-mails and calls from friends encouraging me that it would be ok. They shared countless stories of other families who received false positives, etc... I loved reading through all of the e-mails and being reminded that my family and friends really have been here with us every step of the way of this journey.


E-mail dated: March 24, 2009


Thank you all so much for all of the emails of love and support. I have been a wreck since yesterday when I got the call, but am truly starting to feel a bit more calm after reading through everyone's e-mails. I am still very concerned that something is going to be wrong. 1 in 27 are good odds in the CA lottery but not the baby lottery :-( but I am once again reminded that I am not alone and that I am loved. Remembering that gives me strength to focus on the tasks at hand. As everyone has pointed out there is nothing I can do between now and Thursday to change what the results are going to be so I just need to try and stay calm and as Paurvi pointed out STAY OFF THE INTERNET! You are very right P - thank you! Reading about very scary diagnosis before I may or may not need to doesn't help at all. I'm sorry to read about other group members false positives but am encouraged that it does happen and maybe that will be our situation as well.

I was able to find a baby sitter for tomorrow's counseling appointment and also for the ultra sound on Thursday so thankfully that is all squared away - thank you Becky and Cheryl so much!

Cathy - thank you for your insight on the counseling. I will be interested to see if we get the same lady (yes, I'm going to Magella) and if she has improved a bit in the last 3 years. I too think it's crazy that we have to be counseled first before having the ultrasound results. It seems like so much extra stress and discussion.

Theresa - I am reciting the mantra you sent over and will do each day until this baby is born - healthy or not! You are right, it is a blessed soul that God has sent me.

Thankfully, Benjamin decided he would go down for his nap with out a fuss and is sleeping so I am going to try and rest a bit myself before I go pick up Jack from preschool.

Thanks everyone.


E-mail dated: March 26, 2009

It's with a very heavy heart that we write this e-mail. We unfortunately are not one of the lucky ones to get a "false positive". The positive reading was correct and it does appear that our precious little baby is ill, most likely with some form of Spina Bifida. They were unable to actually see a hole in the spine, however, the complete spine was unable to be seen during my ultrasound.
The baby was being a bit stubborn and stayed curled up the majority of the time. This diagnoses comes from the shifting of brain tissue that was observed. We were told that shifting in the brain like this is almost always indicative of a hole somewhere. The hope is that the hole will be as close to the bottom of the spine as possible as paralysis (due to nerve damage) is typical from that point down. The baby was however moving it's legs and arms and this is a very good sign. It appears that we will most likely not know the full extent of the severity of the illness until the baby is born.

I did have an amniocentesis today which will provide a conformation of the diagnosis but probably little else as far as we understand. It wasn't horrible, however, not much can compare to the feeling in our hearts and stomachs when they told us that the baby did indeed have a problem. I am resting now and don't anticipate any residual issues associated from the
procedure. As of right now, the plan will be to have follow up appointments every few weeks with the specialists to monitor the baby's progress as well as create a plan of action for once the baby is born (i.e. in the event that surgery will be required right away). The baby may even have an MRI (while still in me) as it gets closer to the delivery date. It is our understanding that we will just take things one day/week at a time.

We don't know too much more than this right now, but we ask for your continued prayers for our family and the health of our baby. We are unsure what we will be telling the children, Jack especially as he is a bit of a worrier like his mother and we certainly do not want him to carry around any extra stress or worries for the next 5 months. That's our job :-(

Oh and by the way, we welcome any and all suggestions on baby names since we have never named a girl before. Yep, it's a GIRL!

Please keep us in your thoughts and prayers. We have a long road ahead of us and we need all the support we can get.

Lots of love,

Nicole and Branden


And so for the next four months we moved forward as best as we could. We had good days and some really down days. We were lucky not to have had doctors who gave those worst case scenarios I hear so much about. Our Doctor was great. She was encouraging and positive. She even corrected me one day when I referred to the baby as being sick. she said "your baby is not sick, she has a birth defect and we will be fixing it when she is born". I don't love the word birth defect but I understand what she was saying.

The boys developed a strong bond with their baby sister right away. They loved talking and singing to her in my belly. They called her their FLOWER. According to Jack they named her that because "a flower is the most beautiful thing in the world" - so sweet! Jack would often share with others that his sister had an ouchie on her back but the doctors would be fixing it after she is born.



On April 10th I found what in so many ways has been a saving grace for me - Spina Bifida Kids through BabyCenter.com . It's an online group for parents and mom's to be of children with SpinaBifida. I was a silent observer for awhile but soon jumped in with my questions. These women are amazing! They are all very encouraging and supportive to one another. It's a safe place where you can ask your questions, express your frustrations and share your joys with other women who completely understand what you are going through. It's a great group and through it I have connected with several women that I am proud to call my friends. They are people I would be friends with even if their little ones didn't have Spina Bifida. I feel blessed to have these new friends in my life. They encourage and inspire me.

They all told me that the pregnancy would be the hardest part - they were right!

Some might call this a coincidence, but I know better. God put someone in the right place at the right time to literally become my SB Mentor. Sarah was picking her daughter up from preschool and just happened to over hear two of my friends talking about Annabelle's diagnosis. Sarah politely interrupted and shared with them that her oldest daughter has Spina Bifida and Hydrocephalus. She proceeded to gave my friends her telephone #, e-mail and blog address to give to me. Sarah's friendship has become very special to me. She "gets" me. She understands my pain and my joys - regardless of how small they may seem to some. She provides perspective because she has been there. She validates my feelings. Bottom line she's a good person. Once again, she is someone I feel proud to call my friend and someone I clearly would be friends with even if her daughter didn't have SB. What a blessing that even before Annabelle was born she was helping to bring great people into my life. Until this past weekend Sarah and I had only corresponded online - we email and followed each other's blogs. However, thanks to her new business venture Little Penelope Lane we had the opportunity to finally meet in person. It was like meeting a long lost friend or a pen pal from summer camp. It was really great and I feel like we could have talked for many more hours. I hope that we will get the opportunity to get together again and I look forward to meeting her daughter.


(March 27, 2010)

It has been an amazing year: 4 months of not knowing her but feeling her in my belly and watching her on the Ultrasounds and 8 months of being able to love her so completely. Our lives have been forever changed since we were first introduced to the world of Spina Bifida last March. It has been a roller coaster of emotions which has included 5 surgeries but also a daily lesson is the beauty of life and the beauty of friendship. New friends have been made and our longtime friends have shown us more love, kindness and support than any one family could even imagine. Annabelle has brought so much happiness into our lives. She is patient, kind, happy and funny. She is sweet and cuddly and she is wonderful! I am proud and honored to be her mother.

I am glad to have taken the time to remember the first four months of this journey, but I don't anticipate needing to think about them again anytime soon. We are no longer living in the unknown and what ifs. She is here and she is great. She is writing her story now. What Annabelle will or will not do is not be based on statistics but on her abilities, her strength and her determination. I am confident that Annabelle will amaze each of us with what she will make of her blessed life. I feel so thankful to be a part of it.

I love you Annabelle - our sweet, beautiful, perfect angel.

7 comments:

  1. "She is writing her story now." Ah man that got me. I still remember reading that email you sent to all of us confirming the diagnosis and the pain I felt for you and Branden. I get chills and tears just thinking about it. I felt that pain for a while until I came and brought you your mommy meal. I remember feeling sort of scared and nervous to see you and you reassured me that you guys were alright. That you didn't want us to feel "sorry" for you. That you just wanted our love and support. I was amazed and in awe of your positive energy and your faithful heart. You truly inspire me to not only be a better mother, but a better woman. What a blessing baby Annabelle has been to all of us. She's truly touched all of our lives. Much love,
    Andrea

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  2. Nichole,
    That was beautiful. I too feel so blessed to have you in my life and am so lucky we have this friendship. It really is so nice to have a handful of special friends that really understand because they live it day to day too.
    It's so great that you are writing this out and keeping this beautiful record of sweet Annabelle's journey. She is such a doll and is so lucky to have been born into such a wonderful family.

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  3. Beautifully written. Isn't it amazing that such scary and uncertain circumstances have turned into beautiful miracle babies and blossoming new friendships. I'm so glad to know you (and that pic of you and Sarah freaked me out! It's like seeing 2 celebrities together. lol. I can't wait to have MY picture taken with you two!) and so glad to know ALL these babies and their amazing families. Thank you for writing and sharing your sweet Annabelle with us all. :)

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  4. Nicole,
    You worded it perfectly...and I share the same feelings about my baby girl..the hopes, the fears, the joy, and tears...it's all part of her story, and we are the lucky ones to be included. Our little girls are one month apart, and I know they are shaping us into the people we were always meant to be.

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  5. If you only knew a year ago how amazing life would be today. :) 'Diagnosis Day' was the worst day of my life. If I knew then what I know now, I would've saved myself a lot of tears. Your little girl is so beautiful.

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  6. Your courage, love and faith are inspiring to mothers/families everywhere. Keep on being you and all will be wonderful.
    I love you.
    xoxox

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  7. Grammy and GrampyApril 7, 2010 at 8:27 AM

    Nicole, you are an Amazing Woman, Mother, & Daughter. God has chosen this path for you and you are walking it with more Grace, Love, Faith & Determination than I could imagine. Annabelle & the boys could not ask for a better Mother. Thank you for giving us Our Precious little Annabelle.
    I Love You!

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