It Didn't Last Long

I went 4 days without feeling sick... and this morning, I became sick again! We've finally told our parents, and now we're free to share this news. So now, my blog is reopened to the public. I didn't post much over the past few weeks, but what I did post couldn't be shared until now.

Tricia

FIrst of Many

Today, was hopefully the first of many OB appointments. I arrived at Watson Clinic, and visited with the financial counselor to discuss what my insurance company will be responsible for and what I will be responsible for. This is the first child we'll be having with this company and I was impressed with their coverage.

Then I headed to the 5th floor for my appointment. I checked in and waited 30 minutes. Not too bad. I entered the exam room, and weighed in. I actually weigh more at the beginning of this pregnancy than the end of the other pregnancies. Hmph! They checked my blood pressure, which was normal, and asked me to put on this cute 'lil gown.

Soon after, the doctor arrived. He reviewed my questionnaire, and began his exam. In addition to the prenatal exam, I also had my yearly. Somehow I missed that appointment a few months ago. Which, if you ask my mom, isn't very surprising. All seems okay. Then, he started the ultrasound. I think I held my breath the entire time. I've had 3 pregnancies, one of which resulted in a miscarriage during the first trimester. So, needless to say, I'm a little concerned. We saw the sac, but he was unable to find anything inside. I didn't panic... yet. He asked me to empty my bladder and meet him across the hall so he could use a different machine.

I think I was still holding my breath when I arrived across the hall. My OB began this ultrasound, and we were able to see a little heartbeat! Whew! I felt so much relief. He is measuring 8 days smaller that he should be, but Dr. B said this could be due to not ovulating like the average person. So, now my due date isn't June
30th. It will be July 7th (Happy Birthday Keith!).

After the ultrasound I went to Dr. B's office to discuss the appointment, and go into more detail about my history. We discussed prenatal screening, and also discussed some medical issues I have. We have decided to do prenatal screening for Trisomy 18 and 21. Anything I do will be non-invasive. I WILL NOT risk this baby! Dr. B understands that termination isn't an option for our family. We had a slightly uncomfortable conversation, but I feel it ended well. I made my opinions very clear, and I think he respects that.

We also discussed delivery options. Unfortunatly, my only option is a cesarean. Even worse, I may have to deliver under general anesthesia. This makes me so sad. I have an enlarged heart, and if the mid-pregnancy echo shows my condition has worsened, I will have no choice but to deliver under general anesthesia. Which will mean, Keith won't be in the room for delivery, and I will be sound asleep when this little one joins us.

Tricia

Time Moves Too Fast

This past month has been crazy!

A few months ago, Keith and I decided we'd like to have another child. For those of you on Facebook you may remember me making a comment or two about how it would be great to have another child. We were successful! We will be having another June baby. This has been a very happy and challenging time for us. We are so happy to be adding another member to our family, but this pregnancy has already been a challenge.

First, I get a survey from the doctors office. The survey asks if Keith or I has a relative with Down syndrome, then in parenthesis it says mongoloidism. How horrible is that??? I just about died. I couldn't believe that word is still being used. We're using the same doctors office we used with our other pregnancies, but I guess in the past I didn't pay attention to how that survey was worded.

Then, I have been sick. SO SICK! It just started with nausea, then turned to diarrhea. The doctor said I have a stomach virus that has been going around, but this has lasted over a week. I'm sure I'm dehydrated. My skin is dry, I'm thirsty all the time, and my mouth is dry. I have an appointment tomorrow, so hopefully everything will be okay.

I've also been very injury prone these past few weeks. First, I dropped something on my foot at work, which will probably result in toenail loss. Then, when trying to rush to the restroom I lost my balance, and fell onto the table. The force left a huge bruise on my side, and damage to my ribs. I took a trip to the ER after that injury. I was having a difficult time breathing, and we were concerned for the baby. Thankfully, my lungs were clear, but they did not check the baby.

I have an OB appointment tomorrow. I'll have to explain the bruise on my toe, the large bruise on my side, the terrible pain in my chest, and I pray this baby is okay. He has already been exposed to radiation (we protected him), which terrifies me. Thankfully, I've been able to tolerate the pain, and avoided medication. Bedtime is very difficult because I can't find a comfortable position, but I can deal with it. This little guy is worth every bit of pain I'm in.

Tricia

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.

Tricia

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 Downsyn.com, 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.

Tricia

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.