Saturday, October 17, 2009

Bailey Part 8

These past two years have been a learning experience. I feel Bailey has taught me so much, and given me the opportunity to look at life much differently than I did before she was born. When we first received Bailey's diagnosis, I couldn't imagine the possibilities. All I looked at were her limitations. She wouldn't walk, talk, recognize her family. She would just lay around, and need constant supervision and support.

I was terribly mistaken. Bailey cruises, talks, signs, and recognizes her family, friends, and teachers. Bailey is very active, and yes she needs constant supervision, not because she's unable to care for herself, but because she gets into EVERYTHING! I love it! She keeps me on my toes, but I wouldn't have it any other way.

I also learned a lot from my new friends. I learned to fight like I've never fought before, and that Bailey deserves more than I was led to believe she does. I also learned what true friendship is, and I wouldn't trade that friendship for anything.

I couldn't imagine life without Bailey. I am so sad to think that babies like her are aborted, and people are missing out on the opportunity to learn so much about life. Plus, there are so many families waiting to adopt children like Bailey. I see I bright future for Bailey, and I thank all who have worked so hard to advocate for persons with Down syndrome. These people have allowed children like Bailey to live their lives to the fullest potential.


Bailey Part 7

When Bailey was born I felt so lonely. Nobody understood what we were going through. Everyone said, it's okay, and she'll be loved no matter what. But, Bailey wasn't the child she was supposed to be. How would our family and friends understand the grief I felt? I tried to have a happy face when people were around. I tried to act like Bailey was a typical child, but she wasn't. At that time I thought the only typical thing was that she pooped. Everything else was different. She didn't eat like other babies, and she slept much more than a typical baby.

Then I found Down syndrome message boards on the internet. The first person to reach out to me was a lady named Dawn. Dawn is amazing. She shared her fears and concerns with me. She shared the challenges she had faced with her son, and made me feel comfortable to talk about how I felt. I didn't feel ashamed talking to her, and never felt like I was being judged. Dawn visited us many times during our stays at St. Joe's. She would call almost daily to check on Bailey, and also took time to listen to me as I whined about EVERYTHING. Dawn also invited us to join her at a meeting one night, and it was such a relief to meet other parents like us and see other children like Bailey. I finally felt like I belonged somewhere.

Then, I met Beverly. Beverly's office was at a place where Aubrey participated in play groups and dance class. I remember my mom mentioning Beverly to me, and saying she had information for me. I had time one morning to go to Aubrey's play group. I was sitting there watching Aubrey play when this lady approached me. It was Beverly. Beverly had a huge bag full of information on Down syndrome. It had books, pamphlets, and information on services available to Bailey. Beverly has an adult son with Down syndrome who is an inspiration. That first time I met Beverly she described her son. As she described his accomplishments you could see the pride she had for him, and after meeting him I totally understand what she was talking about. He is truly amazing, and meeting him gave me so much hope for Bailey's future.

In August of 2007, just 3 months after Bailey's birth, we went to the Florida Down Syndrome Conference. Keith and I absorbed the information given to us, and sat quietly to ourselves at lunch. I saw groups of people sitting around, and I wanted so bad to talk to them. But, I couldn't think of what to say. Then Keith started describing Bailey to someone, and a lady in the group next to us spoke up and asked if I had been on a website called, because she recognized our story. I confirmed that I had been on there and she introduced me to the people sitting with her. There was one family who matched ours perfectly. They had a typical little girl Aubrey's age, they had a daughter with Down syndrome who was Bailey's age, and her daughter had the same heart defect as Bailey. Janice was the mom's name and she and I began talking. We realized our daughters would be having heart surgery at the same hospital and we exchanged contact information. Janice and I continued to communicate through e-mail and on message boards. We were already at St. Joe's due to complications with Bailey, when Janice's daughter was admitted to St. Joe's for her surgery. We learned a lot from Janice and her family because their surgery was just a few weeks before Bailey's. We prayed for each others families, and became good friends. Janice has helped me so much. Our little girls are so close in age, that it has been very helpful to compare "notes" with Janice. It also helps to have a friend to brag about accomplishments to, and to get advice on challenges. It's unfortunate we live across the state from each other, but we'll hopefully start meeting up more often.

Locally I heard about a lady beginning to form a Polk County Down syndrome group. I sent my information to her, and she quickly replied with meeting dates. We went to our first meeting. I felt a little intimidated when first walking in. We entered the room, and had Bailey with us. She had her feeding tube, oxygen, and pulse ox. When I looked at the other children everyone seemed so healthy. There was hope. Karyn, welcomed us to the group and I quickly felt comfortable and was no longer intimidated. Everyone was so interested in learning about Bailey, and they had similar stories to share with us. It was nice to hear that other people had very similar experiences to us. Karyn and I have formed a lifelong friendship. She, her husband, and children are amazing, and I consider myself lucky to have met them.

At the Polk County meeting was another outstanding mom. We met Rhonda and her family when we arrived. Rhonda's daughter is a few years older than Bailey. She is the person who really made me feel comfortable about the decision to enroll Bailey in Achievement Academy. Rhonda's daughter is beautiful. Aubrey's favorite part about our meetings is seeing Rhonda's little girl and playing with her. She often says that Rhonda's daughter is her best friend. Rhonda fights for everything her daughter deserves and she never gives up. I can only hope that I can someday be the mom Rhonda is to her daughter.

Amy is another amazing person, who I've had little contact with, but the assistance she has given my family is more that I can fully describe. She is the executive director of the DSACF. I don't know if she fully understands how much the tools she gives families affects their lives. We look forward each year to the Buddy Walk, and the Florida Down Syndrome Conference (next year it will be the National conference!). I've finally decided to start participating in as many monthly meetings as possible (Janice I'm hoping you're at some). The program they have established for health care professionals is amazing. This program is so important to me because it addresses the diagnosis issue many of us have. I can't explain how difficult receiving a diagnosis of Down syndrome can be, especially when health care personnel are insensitive. That day we received Bailey's diagnosis is one I will never forget.

I remember being at the first Down Syndrome Conference we attended. Keith and I were eating breakfast at the hotel, and I saw a table which had several people sitting there, two of which were young adults with Down syndrome. I couldn't help but stare. I thought these young adults were a couple, which was great, but I was led to believe Bailey wouldn't have that type of relationship. After that day, I continued on with my life and didn't think I would see those people again. Then one day I was sitting in church. We were standing and singing, Amazing Grace, of course. That song already makes me teary-eyed, but the events that happen during that song made me weep like a child. I was holding Bailey, I had her backpack with her feeding bag in it on my back, and I was struggling to sign the attendance book. I felt a gentle tap on my shoulder and a nice lady offering to hold the book as I tried to write. I looked up and it was the mom of the young man I saw at breakfast. I signed the book, thanked her, and then cried like a little baby. When the service was over, the lady introduced me to her son and his girlfriend. When I get home from church I realize this young man is the Eagle Scout I read about when Bailey was first born. The Eagle Scout who got all his badges without taking any shortcuts. During this year's conference this young man's girlfriend received an award. She sang a beautiful song and he stood by her side. There were few people in the room who didn't have tears in their eyes.

This is just a small sample of the people who have helped us through this journey. I appreciate ALL the people we have met. I can't imagine going through this alone. I appreciate all the advice we've been given, and I appreciate the comfort I've felt and the ability to share my concerns without being judged.


Monday, October 12, 2009

Bailey Part 6

I often feel ashamed for the thoughts and fears I had when Bailey was born. I can't believe I wondered if she would walk, talk, or recognize her family. I can't believe I spent the first several months of her life crying. I wasted so much important time with Bailey. I do still have emotional moments. Most of those times occur when I'm fighting for something Bailey needs, which is happening a lot lately.

It took time for me to stop comparing Aubrey and Bailey. I would think, Aubrey was rolling over already, or Aubrey was crawling already, or walking already. I wasn't being fair to Bailey. No child is the same as another. We work with Bailey to achieve these milestones, but we've made the decision not to pressure her. She receives therapies at school, which are important, and we work with her at home, but I have learned that I can't let it rule our lives.

Bailey and Aubrey have an amazing relationship. It is obvious when watching them play together they love each other so much. Aubrey holds Bailey's hands and tries to get her to walk. They sit together on the floor and play together with Bailey's toys. When Aubrey sees pictures of Bailey in the hospital she cries. Aubrey will teach Bailey so much about life, and Bailey has already taught Aubrey more about life than I ever could.

We will continue to face challenges and obstacles in life. I've been reminded lately of Bailey's challenges by recent evaluations and I've had struggles to get phone calls returned by "professionals". We will continue to fight for what she deserves, and she will continue to teach us to not judge others by what we see on the outside, and to love unconditionally. I couldn't imagine a greater gift than Bailey. We have two beautiful little girls, and I consider myself blessed.

Bailey Part 5

As Bayflight landed, we were informed that Bailey was in heart failure. I always thought of heart failure as an issue for the older people. Never did I imagine I would have a child who would be battling this at such a young age. The flight crew came to Bailey's room, and took her up to the helicopter. We were told the nurse would contact us once they landed, and we got on I-4 and headed to Tampa.

Bailey spent a couple of weeks at St. Joes. She had one minor heart surgery, and a cardiac cath. She was on a ventilator for a couple of days, and we were sent home with an NG tube to assist her in gaining weight and also due to reflux. We visited Dr. W's office every 2-3 days prior to open heart surgery. We saw him more than we saw her cardiologist. Dr. W made all the decisions concerning her medical care. He would advise us when we needed to take her to the hospital. She had numerous hospital stays for what we called "tune-ups", and eventually we had her on oxygen at home. During these hospital stays we spent every night with her. Not once did she sleep alone. I began to admire her strength, and I knew I had to be strong for her.

On Monday September 18th we arrived at St. Joe's for Bailey's heart surgery. I couldn't wait for this day to come, and now that this day was here I was terrified. This is the day Bailey chose to roll over for the first time. This was a milestone we had been working so hard for, and we celebrate by sending her in for surgery! We were surrounded by family and friends that day. I cry now as I think of how difficult it was to hand her off to the nurse. I was terrified for her. Surgery was successful, and within 5 days she was sent home on oxygen.

Bailey was a different baby after surgery. I had heard stories from other people about how much more active she would be and how her color would improve. They were right, she was an active little girl, and she was no longer our blue baby. She has remained healthy since surgery. We've had a few hospital visits for feeding issues, respiratory infections, and mrsa, but those visits are much better than the long hospital stays where we wonder if she is going to survive.

Sunday, October 11, 2009

Bailey Part 4

We were blessed to have the pediatrician we have. I didn't realize how amazing Dr. W was until we spent time with him as he cared for Bailey. We only had well baby visits for Aubrey, so this experience was different. We saw Dr. W the day following our hospital release. He requested all reports from the hospital, and he spent over an hour with us. He did more during that hour, than any doctor did during the 4 days at the hospital. Dr. W eased my fears and sent us home, asking us to return in a couple of days.

We were in Dr. W's office regularly. He checked Bailey oxygen levels, her respiratory rate, and her heart rate. It was obvious she was struggling, but we knew we had to let her grow. Dr. W increased her caloric count, and we worked hard getting her to eat. Bailey had to gain weight.

It had been over a week since Bailey was born. During that time we waited for tests results to confirm that she had Down syndrome. Every appointment we had with Dr. W I asked for results, and he never had them. When the phone would ring, my heart would drop. I knew that call would be coming soon, I just didn't know when. On May 18th my phone rang. It was Dr. W's nurse asking me to hold for Dr. W. He said Bailey tested positive for Trisomy 21, and asked if I had any questions. I said no, and quickly got off the phone. I cried.

The next two days were very difficult. Bailey stopped eating. We tried everything, but she would refuse and fall asleep. We woke up every 3-4 hours during the night trying to feed her. I just knew she'd get hungry and start eating, but she didn't. We called Dr. W's office Saturday morning, but never received a return call. Finally, we decided to take Bailey to the hospital.

We arrived at the hospital and they triaged Bailey. We were taken back immediately. Bailey was taken to the procedure room. Her little body couldn't be seen because she was covered in nurses and doctors. Is she really that sick? She just wasn't eating, but everything else seemed normal. We sat in the hall outside the door of the room. We watched through the door as they worked on Bailey. The doctor came out and explained to us that she was very sick. He had release forms for us to sign, and said they would be flying her to St. Joe's Children's hospital.

Saturday, October 10, 2009

Bailey Part 3

Again, I do not have these opinions anymore.

Dr. R came in after reviewing Bailey's echo. He confirmed that she did have a complete AV Canal defect, and she would require open heart surgery. However, we'd have to wait for her to gain more weight before they would perform the surgery. He said they usually do the surgery when children are 4 months old. He said this heart defect meant she had a large hole between the chambers of her heart, and one heart valve. When he left, we just held our little girl and told her how much we loved her.

This was supposed to be a time for celebration, and I don't believe I smiled during that time. We had a few visitors at the hospital, but it was difficult for any of us to find the right words. We were very honest with everyone. We weren't ashamed of Bailey, but we were very scared for her. During this time I'm not sure we thought much about Down syndrome. We thought more about her sick heart, and wondered if she would survive.

After spending 4 days in the hospital, Bailey and I were both released. They gave us instructions on what to look for if she went into heart failure. They said Bailey would turn blue, she would sweat, and become mottled. They gave us an appointment with Dr. R, and sent us home.

We arrived home and put Bailey in her crib. Her tiny body just laid there. I looked around her room and cried. This wasn't HER room. This room was for our normal child. This room was for the child we expected to bring home. The happy frog decor was for a healthy baby, and the baby I brought home was not healthy. I cried.

I felt so lonely during this time. Keith and I had each other to lean on, but nobody else understood what we were feeling. I felt ashamed for saying I wanted a normal baby, but I did. I didn't want to see her suffer. I didn't want to deal with open heart surgery. I also, didn't want to lose my baby. Was she going to die?

Bailey Part 2

Again, remember how I think has changed.

I was so afraid about what life with Bailey would be like. Would she ever walk? Would she ever talk? Are kids going to make fun of her? Will she get married? I cried... a lot! Keith was amazing. He was supportive, listened to my concerns, and did research. He would go home, find positive articles on the Internet and bring them to the hospital.

The Down syndrome diagnosis had not yet been made. However, through our research we knew there were a few common characteristics. We knew about the gap between her toes, the slanted eyes, Palmer crease, shorter limbs, and low muscle tone. We also knew about medical complications associated with Down syndrome. Those included, congenital heart defects, frequent ear infections, sleep apnea, thyroid problems, and an increased risk of developing leukemia.

So, knowing what I know, I started looking at Bailey from head to toe. She had the gap between her toes and her eyes were slanted, but that is all. Everything else seemed "normal". She didn't have a heart defect or any other medical complications. Maybe, just maybe, these "professionals" were wrong.

The next morning my thoughts that the doctors were wrong quickly diminished. Again, while I was alone, another doctor entered my room. Dr. R introduced himself as the pediatric cardiologist. Crap! All I could think about was how much I wanted this guy to leave my room. I didn't want to hear it. I was tired of getting bad news. I wanted that perfect child I had been dreaming of. Why can't she just be perfect? Dr. R began to describe the murmur he was hearing and said they would like to do an echocardiogram on Bailey. He said this would help them diagnose what could be causing the murmur. He left.

Like the previous visit with the other doctor I remained calm until I was once again alone. Then, I lost it. I began to cry hysterically. I couldn't believe this was happening. Keith came in soon after Dr. R left. I began to tell him what the doctor said. At that moment, he and I knew Bailey had Down syndrome.

Friday, October 9, 2009

Bailey Part 1

Please remember the way I think has changed, so take no offense.

In September of 2006 we discovered we were having another baby. In the past, we had been excited to find out we were expecting, but this time was different. This pregnancy happened just a few months after we had a miscarriage. We were cautious and a bit scared. We made the decision to keep quiet about the pregnancy until we were in the second trimester.

I went to all my prenatal appointments. I had the triple screen done, because "if my child has something wrong with her I want to know". The results were normal. I also had a few ultrasounds, and everything seemed normal. After each appointment I became more excited, and the worry eventually disappeared. When we told family and friends, they were all excited about the upcoming birth of our baby girl. Aubrey was excited too...

I saw my doctor for my final appointment during the first week in May. He had my cesarean scheduled for May 7th. We spend the few days leading up to Bailey's birth preparing her room. My dad painted the walls a beautiful bluish purple color to match her bedding. Keith assembled her dresser and crib, and I put the final touches on the decor.

Aubrey spent the night before Bailey's birth with my parents. So on May 7th Keith and I arrived at the hospital, excited about the birth of our second little girl. I was prepped for surgery, as our families began arriving to the hospital. Everyone visited me for a few minutes prior to surgery, then Keith and I entered the OR. My OB was the same as the one who delivered Aubrey. He remembered the nightmare of Aubrey's delivery, and teased me about the large tumor he had to deliver with Aubrey... we called it her twin.

He made his incision, and within a few minutes we heard the most beautiful cry. I thought, "she's okay", and I took a deep breath. Finally, Aubrey has a little sister, and we have another beautiful little girl. We were able to see Bailey before she was taken away to get cleaned up. I went to recovery.

Recovery is horrible. You lay in a bed with a nurse who stares at you until you are stable enough to be taken to the mommy baby room. Finally I was stable, and they took me to my empty room. Keith, our parents, and Aubrey were downstairs eating breakfast. I was enjoying a few minutes of quiet when a doctor and nurse entered my room. I assumed they were coming to check on me, but I was wrong.

The doctor said something I will never forget, he said "some of the nurses seem to think your daughter may have Down syndrome, and after looking at her I believe they may be correct". He described the gap between her toes, and the slant in her eyes, and all I could think about was the tests that said everything was fine. At that moment I felt my life as I knew it was over. I remained very calm until they left, then I broke down. I wish I had asked him why he felt the need to tell me this while I was alone. Why couldn't he have just waited for Keith to come back? This was the most difficult thing I have ever been told, and I had no support. I was devastated.

Soon after, Keith returned. I can't imagine what he was thinking when he came in and saw me crying. This was supposed to be the happiest day of our lives, and here I am crying. I didn't know what to say. How do I tell him that Bailey isn't perfect? How do I explain that those hopes and dreams we had for her aren't going to happen?