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Sunday, April 19, 2009

New found love & Arthrogryposis

Here I am 8 month's later, ready to write about our experience with a little thing called Arthrogryposis.

I was a high risk pregnancy from day 1. If there was anything that could possibly go wrong, I was already there. I was effaced early, put on bed rest, Had an appendectomy at 5 month's, just to name a few. The doctor's were completely convinced that this little girl would be gracing us with her presence earlier than expected. They never told me there was anything possibly wrong with the baby just that her abdomen was measuring a bit small.

On August 20th 2008 at 39 week's pregnant I went to Holy Cross Hospital thinking my water had broke. I was checked & they just weren't sure if it had broke or if I was leaking fluid. They decided it would be in best interest to induce me. I stayed over night, didn't make much progress until they started pitocin later on the next day. Then the fun began, I had HUGE complications with the epidural. It only worked on the left side of my body & caused me to pass out. Mine & The baby's heart rate dropped drastically. I was bombarded with doctor's & nurse's. I was told if it was to happen again it would be emergency c-section all the way. Thank Goodness it didn't happen again.

Bailey Grace Breeden came into this world at 9:36pm on August 21st 2008 weighing in at 6lbs 12.3oz and 20 inches long. From what I could see she was BEAUTIFUL. They swept her right away, Steven didn't get to cut the cord and she didn't get to lay on my belly but I was in such awe of her that I didn't even over-hear them talking about her hand's & feet. She looked perfect to me & I didn't want to listen, I wanted to enjoy the first moment's with my brand new baby girl. I knew everything was going to be just fine. Little did I know what God had in store for us over the next day's, week's, month's, & year's to come.

Once I got to see her not wrapped in blanket you could see that her hands were fixed upward & wrists bent back. Her feet were completely touching her shins. I had NEVER seen anything like this before. I remember being un-concerned until they attempted to feed her. She stopped breathing when they tried to feed her for the first time, she turned completely blue. They left her alone for awhile while they got a specialist to evaluate her, she got to sleep in my room with me for a few hour's until they attempted to feed her again. The same thing happened. In a matter of time they told me she would have to be taken to the NICU. My whole world spun around. I didn't want her to go to the NICU I wanted to do what all new mom's got to do. I wanted to take take care of her while she was in the hospital & take her home with me in 2 day's. I didn't understand & I didn't understand why she wouldn't eat. My emotional roller coaster started here.

Every time they fed her she stopped breathing. I later found out Bailey couldn't coordinate Suck, Swallow, Breath & need alot of jaw support. She had an extremely high palate, it was hard for her. You could tell eating exhausted her. They needed to monitor her & be there in case anything bad were to happen. I understood it was for her best interest. Her doctor in the NICU wanted her to be seen by all these people for her hand's and feet. The physical therapist gave her little splints, and had the nurses doing stretches from day 1. She had x-ray's & blood work taken. Her medical journey had begun.

August 23rd 2008 was the hardest day of my life. I was released from the hospital, without my baby. I had to leave her there. It was the hardest thing I've ever had to do. I called and checked on her every few hours & saw her every single day she was in there. The nurse's knew who the whole family was. Bailey was evaluated by a Genetic's doctor, Dr. Dina Zand from Children's National Medical Center. I unfortunately was home when she came to see her but she called me to tell me her diagnosis. Arthrogryposis.... WHAT!? I remember asking her to spell it & I remember not being able to pronounce it. It now is a household word. She explained what it was briefly and told me to stay away from the Internet. Searches would just scared me. I didn't listen & they did scare me horribly. She wanted Bailey to be evaluated by a Neurologists to determine if she could come home. Dr. Scheller came the next day & okay'd Bailey to go home. He told me she'd be JUST fine & that she didn't need to be here anymore.

I had to room-in with her for one night because she would be coming home on an apnea monitor that I had NO clue how to use. I aced the test of the monitor & on August 28th 2008 (her actual due date) I got to take my beautiful little girl home. We left with ton's of instructions & Lot's of appointments, it was ALOT to take in but I was glad just to take her home.

Bailey was off of her apnea monitor in a matter of a month. She coordinated how to suck, swallow, breathe all on her own without turning blue. I was SO glad to get rid of that annoying thing. She became followed regularly (every 2 week's) by Dr. Laura Tosi (orthopedist for feet)Dr. Dina Zand (Genetics), Dr. Robert Leshner (neuro-muscular), Dr. Hattwick (orthopedist for hand's), the infant's & toddler's program, and the Holy Cross Home program.

Dr. Robert Leshner gave Bailey her definite diagnosis of Atypical Distal Arthrogryposis. She's not the "classic" case of arthrogryposis. Her arm's/hand's are not fixed downward but instead fixed up "windswept" and her feet were completely touching her shins instead of downward. I didn't just have a baby with a rare syndrome but even more rare in the Arthrogryposis community.

The madness had begun & carried on for about 6 month's until Bailey started showing tremendous progress after casting/splinting & ton's of stretching. She now doesn't go to Children's but every 3 month's instead of every 2 week's. Bailey continues to have physical therapy twice a week & occupational therapy once a week. She wears hand and leg splint's for 9 hours a day & we do Lot's of stretching. Her feet have come down 95% she only holds all but her heel up when trying to stand. Her hand's aren't as tightly fixed backwards & most of the time nobody can even tell she has something wrong with her. Bailey has accomplished all of her developmental milestone's except propping up on her hand's, the strength just isn't there right now but it's still a work in progress.

Bailey has had alot of tests done. Ultrasound of neck & spine, Xray's of all extremities, blood work upon blood work, and a Electromyography all coming back without a horrible result & we're still in the process of the genetic testing. We're currently awaiting an MRI to be done May 27th 2009 to check her brain & spine.

Our family is no longer scared of Arhtrogryposis but excited for the improvement in the future. We aren't focused on the bad anymore but more so the good that will become of this. We have a very strong little girl. She goes through so much on a day to day basis and still manages to be an overall happy baby.

"Fall into me, my arms are open wide and you don't have to say a word cause I already see that it's hard and you're scared and you're tired and it hurts and I wanna be the one you reach for first."