Monday, January 9, 2012

"Bee"-ography Monday

It's Monday, time for a new edition of our "bee"-ography series which brings the story of a new little one with a diagnosis of hydranencephaly each and every week. This week's story comes from our little bee Breanna, aka Banana's, mommy Debbie:




I had Breanna Nicole on April 6, 2007 at 6:44 p.m. I was in labor for like 5 to 6 hours and only had to push 2 times, she was born very fast, so I was alone when she was born. 



I knew right away that something was wrong with Breanna, Banana as we have come to call her, because whenever she would cry her whole body would change colors. I brought this up at the hospital and was brushed off. But it was still a big concern of mine.



I was in and out of the doctor's office with her because she was so fussy and the doctor kept telling me that it was Colic and then it was her formula, but I knew it was something more. I was certain that she would stop breathing when she was sleeping and I could NOT put her down for nothing, I was positive she was was having Grand Mal seizures. But the doctor kept telling me the same things and at one point even told me I was crazy and just needed a nap.


When she went in for her 2 week check-up the doctor noticed that her head was not growing with her body and said that we would keep an eye on it. When I took her back at 5 weeks for another formula/head check the doctor went a head and sent her for a CT Scan at our Local Hospital. Within 3 hours sitting alone in my living room I received the call that crushed me. The nurse told that me that it wasn't good and the doctor needed to talk to me right away. He got on the phone and told me that the scan came back as severely abnormal and he was referring her to a specialist right away. I felt like I couldn't breathe, the room was closing in around me.



It took about 2 weeks to get into the specialist so Breanna was about 8 weeks when we went for what was supposed to be a consult with a neurology doctor, I expressed my concerns about her breathing and the fact that she was having seizures. From there everything happened so fast and the next thing I know we were admitted. I was freaking out because I had not made arrangements for my 2 kids at home because I thought we would be coming home.



Our first night there Breanna stopped breathing 10 times in a matter of 7 minutes and they rushed us down for a sleep study that was scheduled for the next night. It showed that she was having so many seizures back to back that it was causing her to stop breathing. We were in the hospital for about a week and at the end of it all I was standing by my daughter's bed all alone when a team of doctors walked in and told me that Breanna had Hydranencephaly and seizures and turned around and walked out. 





Another doctor came in a little later to take me into a room across the hall to show me what her MRI looked like. It was something that I had never seen before. The doctors at Riley's Children's Hospital were not very much help to me at all, they had already written her off as a lost cause. It was only after I took her home and met with her regular doctor was I told that she wouldn't live to be a year old.



Since I wasn't given much information from the doctors that diagnosed Breanna, after I came home I waited about 2 weeks and started doing my own research. I guess I waited because I was scared of all the information I would find. No one around me knew what was going on with her and I lost pretty much all of my friends because everyone was scared to be around my baby. I felt so alone and scared.



But I just let the Mommy in me take over and we live everything day by day. I try really hard not to think about Breanna's Hydran or her future because if I do I will break and I can't do that. I have to stay as strong as I can not just for Breanna but for my other 4 kids.






8 comments:

  1. I love it!!!!! All these kiddos are so awesome and I just love them all so much!!!! Thank you!!

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  2. Thank YOU for following along! Feel free to share our little ones with your own family & friends as well... awareness is essential in helping us reach families across the globe!

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  3. Beautiful bee o graphy!! Loved the photos too and I cried when I thought of how scared and alone you've felt.

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  4. Bruce, Janice and Travis JohnsonJanuary 9, 2012 at 7:36 PM

    Thank you for sharing your heartfelt story of your most precious, Breanna, Debbie. Now I know a lot more about you and your family, and the pictures are wonderful, too. Our children are the greatest joy and the greatest sorrow. Sorrow only because our society puts a label on our children, and then it feels difficult to get the real help we need to support us in the care of our children. Many blessings from our family to yours.

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  5. Wonderful story! Thanks for sharing Banana with us!

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  6. You guys have sure been through a lot! Breanna is such a miracle! I have a lot of respect for you Debbie...you are a great mom!

    Jenny Hatch

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  7. Very touching story! I must admitted I started crying when reading about how the doctors brushed your conern off, something that happens too often and needs to be addressed more. You are very strong and a very dedicated mother...keep up the good job!

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  8. Thank you everyone!! I had a lot more to write but Channing was being a monkey. I will try and write more soon!!

    Debbie

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