Monday, April 30, 2012

Bee-ography Monday

This week's bee-ography comes from hydran-mommy to the beautiful Brianna, Barbara:

In 2000 I became pregnant at the age of sixteen and little did I know, or have the capability of understanding, how it would impact my life. It was then when I began a journey that would evolve me into the person I am today. This little miracle gave me a chance to become the person I knew I could be. In return I would give her the same opportunity she gave me.

During my pregnancy I was very scared. I was a good student and tended to be the shy and quiet one. I hid my pregnancy because I was afraid of disappointing those closest to me. I ate well and did what I thought I needed to do. It was not until I was 8 ½ months along until I skipped school and went to the doctor’s office because I was afraid I would start labor in school. It was a very hard decision but I was really considering adoption. I knew I could not support her and her biological father left me once I told him I was pregnant. I did not think I was not ready for the responsibility.

On September 15, 2000 I told my then boyfriend that I was pregnant and that it was not his and that if he did not want to be with me that was okay. I really did love him though so it was heartbreaking to have to tell him that. At that point he hugged me and said that we can do this and that he would stand by my side. I was still trying to decide what I should do but did not understand the urgency of my situation.

On September 16, 2000 at 7:00am I went into labor 2 weeks early. I hadn’t even told everyone that I was pregnant. The sonogram showed that she was breech so I ended up having an emergency c-section. I was all by myself lying on the table with my thoughts when I heard a cry. I can remember saying “That’s my baby” “I have to keep her”. I didn’t get to see her and I thought I was too late to have her as my own. I remember waking up after recovery and telling them “I want her and her name is going to be Brianna”. She was a healthy 5lbs. 6oz. beautiful blue-eyed baby girl and she was mine.

We had no plans but quickly rallied up supplies and had a tremendous family support system. I turned my cds into diapers and our lives were forever changed. We were on a different path than I thought our lives would ever take us but we were happy and we made it work.

Fast-forward five months. My then fiancé’s mom says “I don’t think she can see”. I didn’t believe her but it probably was because I didn’t know any better. She encouraged me to get her into the doctor which was when we were referred to an eye doctor. At the eye doctor she was diagnosed with Optic Nerve Hypoplasia. We were told that it is something that can be grown out of so we were still pretty optimistic. I wear glasses so I didn’t think it was that big of a deal. He did suggest we get an MRI done just to be safe.

On March 29, 2001 Brianna had her first MRI. Some time shortly after we saw the neurologist to get the results. That day will be forever etched in my mind. It was me, my fiancé, and his mother at the doctor visit. He put her x-rays up for us to see. That was the first day I heard of hydranencephaly. That was also the single most heartbreaking day of our lives. It was this very grim prognosis and the doctor offered up nothing positive to us. He said it was just a freak accident of nature and that most of the time these babies get aborted by choice or naturally. He told us to take her home and love her and not bother scheduling our next appointment because she won’t even live six more months.

The first year was the hardest. I lived in constant fear that she would leave us in the middle of the night. I had terrible nightmares. She cried most of the time and there was very little to do but for me to hold her. I never let her leave my sight. After the months went by my grieving for her changed to fighting for her. I realized she was still here and knew there was a reason. Our journey began to rewrite the books. I would not take no for an answer and knew I had to do everything in my power to convince doctors and therapists that my child was worth it. One by one they started coming around. That first neurologist though was only seen many years later just so I could confirm with him that maybe he should change a few things about how he presents himself to families. That felt really good. Now they listen to me and ask me what they need to do to give her the best care that she deserves.

I wish that at that moment of learning of her diagnosis we would have been told that there was hope. There are so many more resources and support groups now than there were when Brianna was first diagnosed. We felt so alone and that we could do nothing for our precious little girl. It is hard to believe that doctors in general do not know much more then they did back then. There is hope though and I see it everyday when I log onto my computer and have conversations with other families that have children that share the same diagnosis. When I look into Brianna’s eyes I know that there is a reason she is here and every child born with hydranencephaly deserves the same chances that we have given her.

She has had some issues with health but none has been a harder battle than the one with her GI tract. Brianna has been on medication for her stomach and bowels since she was two months old. She was always irregular and had problems with intestinal bloating, blockages, acid reflux, digestion, malnutrition, and her latest battle with c-diff. She had a g-tube placed when she was seven. We mainly administered her medications and fluid through it for four years. When we almost lost her to c-diff, she just turned eleven, all I knew that is we wanted her to be around longer we had some changes to make. We stopped feeding her orally as she was choking a lot. We put her on continuous feed. She has had this diet with no additional harsh medications for a couple months and is doing better than she has in her whole life. Her GI tract is regular and she no longer needs my help; everything just works. She is also finally gaining weight.

Brianna developed her seizure disorder when she turned 17 months old. It was frightening to see her go through them but she began taking Dilantin which stopped her seizures. It did increase her gum size so we switched to Phenobarbital when she was three. When she was six her seizure behavior changed and we increased the Phenobarbital and added the Diastat for emergencies. When she was ten she began having severe seizure episodes. I believe it is due to hormonal changes. She is now taking Tegretol with the Phenobarbital to manage them. She has been almost seizure free since she turned eleven. She has never had increase pressure from cerebral spinal fluid so she has never needed a shunt.

Another issue that we have dealt with is her hips. In her second year she had a dislocated hip and a subluxed hip which were from birth. She also had tightening in her hamstrings that was making the dislocation worse. We decided to do her first surgery. She had her adductors released and her hips put back in socket in hopes that they would further develop without the need of a more abrasive surgery. When she was four there was little to no change. We decided to have the adductor release again. She also had a bilateral femoral osteotomy. That worked for the left side but not the right. So when she was seven her right hip socket was reconstructed and she had the adductor release done on that side as well. Her hips are where they should be today but she is having increase tone again in her hamstrings.

The beginning years of Brianna’s life may have been harder. I feel with better knowledge of what can be done to increase the quality of her life we could have avoided some hardships. She is a remarkable young lady. It is hard to believe that she does what she does given only having a small amount of her brain. She is happy 95% of the time. The other 5% she is usually bossing me around because I’m not meeting her needs to her standards.

She loves to have sips of root beer and thinks she needs to have it whenever we go to a restaurant. She will holler until she gets it and then probably holler some more because you aren’t going fast enough. Brianna figured out how to say “drink” so since it is one of the few words she knows she says it quite frequently and smiles because she is so pleased with herself that the word works. If she overhears someone say there is a birthday around or sing happy birthday she wants cake and ice cream. We still give her tastes of food and her favorites are double cheeseburgers, nachos, sweet potatoes, her daddy’s Subway sandwich with peppers, Fun Dip, and cotton candy to name a few.

She loves music. Her favorites are Beyonce, Adele, Rihanna, and any heavy metal with guitar solos. She also loves any song that’s patriotic. Her favorite movies are Charlie and the Chocolate Factory, Rio, and School of Rock. She is learning to communicate with a switch toy and is doing quite well. She especially likes when the switch toy activates her leg massager. 

Brianna’s a Daddy’s girl so she goes hunting with him and even has her own gun. Yes, it is pink. She also loves to play video games with her Daddy and hollers at him at 6:00pm every night like clock work because she knows that’s her time with him. She also has some family favorites, but I won’t mention names. They know who they are and we don’t want any jealousy.

Black Hawk Area Education is where she goes to school and loves all of the hustle and bustle. She gets so excited when the bus comes to pick her up. It is so cute. We strive to include her in all of our activities and anything a typical child would do we try to adapt it so Brianna can be included. She plays baseball in the summer and enjoys swimming and camping. She will fish too but mostly likes the sound of the bull frogs croaking. In the winter she loves to be bundled up and go sledding.

Throughout all of this my fiancé and best friend became my husband. We have learned to grow together with a bond that will last a lifetime and beyond. Brianna’s life has impacted ours now and forever. Through the ups and downs and no matter the distance between us we will be together always. If I could go back in time I would not change a thing. What I would do is look at the sixteen year old girl and let her know that everything will be okay. 

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