Biopsy

Tomorrow I have a skin biopsy scheduled for 8:40am. I'm terrified. I know scleroderma isn't a death sentence, but I also know that my quality of life will not be the same if I receive this diagnosis. I've recently had skin changes on my face, hands, and feet. My hope is that it's related to lupus, but these aren't typical lupus symptoms. Tonight, as the girls danced the tears started flowing. I have a hard time accepting what my life may be and imagining my own mortality. At dinner, I cried again, and right now I continue to do the same. Tomorrow we have a big event at one of my stores. So, after my appointment, I'll put on a strong face and smile as usual.

Scleroderma

Today my hands are swollen and my skin is tight. The tips of my fingers itch, and I wish I could rip my nails off and scratch underneath. Other than that, I feel pretty good. Much of my spare time is spent researching. As difficult as it was to accept the lupus diagnosis, I have accepted it. If scleroderma is added to the list, I will have a new diagnosis of mixed connective tissue disease. That scares me. I have so many fears. My doctor was very upset and reluctant to diagnose me because I'm so young. It took her being 100% confident that I had lupus before she would make the diagnosis. We would always talk about it being a possibility during the appointments, and left it at that. Both diseases can be life threatening. My kidneys, lungs, heart, and other organs can be affected. Or, I can be treated with immunosuppressants and hopefully stop the body from attacking itself. I am currently taking an anti-malarial which we hope will reduce my number of flares and keep me in "remission" without having to deal with the issues associated with the immunosuppressants.

Go Gators, Chomp, Chomp, Chomp

Aubrey had her first college football experience Saturday. Keith decided Friday night that he would like Aubrey to have his second ticket to the Florida LSU game. That night, after celebrating my mother-in-laws birthday, Aubrey and I went shopping for Gator gear. We purchased a shirt, then went to Michael's so I could purchase supplies to make her hair bow. The next morning she woke up excited to go to the game. She ate breakfast, showered, then got ready for the big day. Once she was dressed, the other girls and I left to take Daisy for a walk. Keith and Aubrey passed us on their way out, and she was excited about her day with dad. I spoke to Keith as they arrived in Gainesville. They had stopped at chick-fil-a in Ocala for lunch, and they were near the stadium. Aubrey enjoyed the game after the second quarter and has decided she will start her college career at USF and finish a Gator!

Nearly Two Years Later...

It's hard to believe my last post was on November 17,2010. Chloe was just five months old, and now she's a beautiful, active two-year old. She loves her big sister's and is a joy to be with. Bailey has developed so much over the past few years. Her speech is becoming more clear, she is beautiful, and she loves her new dance class(with typical peers)! Aubrey amazes me daily. She is a gorgeous little girl that absorbs everything she is taught. I am excited to see what her future will bring. It's hard to believe how lucky I am to have such an amazing husband and children.

In my last post I discussed my illness and concerns. The doctors were leaning toward something autoimmune, but a diagnosis was difficult. We spent the last weekend in April with my cousin and her family at Legoland. We had a great time, but a few days later my arms were covered in a rash, and my face also had a rash across the bridge of my nose and on my cheeks. That day in the sun at Legoland caused these beautiful rashes. I called my rheumatologist and I was quickly seen. When she entered the exam room on May 3rd she inspected my rash and immediately said classic lupus. So my diagnosis was changed to systemic lupus erythematosus.

That day I walked to my car in tears. I had known for months I would be diagnosed with lupus, but hearing the diagnosis being confirmed by my doctor made it real. I told my family and two friends, and other than a short post on Facebook during lupus awareness month, I've remained quiet. Sometimes I want to tell people, because I fear they are looking at me thinking I'm lazy (which I probably am), but I also don't want people to feel sorry for me. I don't feel sorry for myself. At least I don't feel sick all the time.

Since being diagnosed five months ago I've only had a few flares. I've managed them with prednisone, and have done fairly well, until recently. The past two weeks have been a challenge. It started with a headache and has since moved to my right hand and elbow, my left foot, shoulders, and my back. Honestly, I think I could fall asleep at any time. The fatigue is horrible. I saw my hematologist this week and my iron and iron saturation levels are rapidly dropping. She is repeating labs in three months and may decide to start monthly infusions again. Then, I saw my rheumatologist again this week and my scleroderma antibodies were at 49 and normal range is 0-20. Since that appointment I have looked at my hands every five minutes to check for skin tightening. She will also repeat those labs in 3 months before ordering more tests and determining if a diagnosis should be made. Let's pray that was a fluke! Last night I started plaquenil with the hope of preventing future flares.

When I saw my doctor this week, she asked me how I feel and said to be honest. So, I told her I feel horrible. I told her about my aches, pains, and fatigue, and then I said but... I can't let this stop me. I don't have time to feel sorry for myself and I can't stop doing what I do. If I stop pushing myself to continue moving forward I will sit at home and only get worse. She laughed and then told me that it amazes her how her really sick patients say the same thing, but her patients with minor problems go to her office whining and crying over minor issues. I don't consider myself to be in that really sick category. My hematologist is at the cancer center, and as depressing as you would think it is,the people in the chemo room are smiling, laughing, and enjoying life. Compared to those patients, my issues are minor, so who am I to sit and feel sorry for myself.

So, I will end this by asking that you not comment if you are going to say you are so sorry, or that you feel bad for me. Please, don't feel sorry for me. I have a beautiful life.

3am

Well it's 3am. For some reason I continue getting roommates with issues. Last night I had a snorer, and tonight I have someone who requires the door to be open and someone has to sit with her. Thankfully, I slept all day.

I was admitted to the hospital yesterday because of a blood clot. I was put on Heparin and thankfully this was discovered before it travelled to my lungs.

Since the birth of Chloe I have been quite sick. Total exhaustion and just not feeling well. My hemoglobin dropped very low and I was admitted 2 months ago for a few days to receive IV meds. Since my release I have been seeing a hematologist who gives me IV venofer weekly. The clinic felt I would benefit from having a PICC line and it was inserted on Thursday. By Friday I was already showing signs of a clot, and I finally went to the doctor yesterday. This is my 3rd clot in 4 months, but my first deep vein.

When the previous clot was discovered they did an ultrasound and found that I have a large thyroid nodule. They did a biopsy which came back inconclusive. So, as long as I continue to recover well it will be removed on Thursday. They will check the nodule immediately and if it is malignant they will remove my entire thyroid.

The doctors suspect I may have an autoimmune disorderb which caused these issues to suddenly appear. I see a rheumotologist next week to confirm or deny those suspicions.

I don't feel as bad as I may sound. With a little patience it will all get better.

Tricia

Chloe

It's hard to believe Chloe is already 4 months old. Having three little ones has been a challenge, but well worth it. Aubrey and Bailey love having Chloe in the house, and have adjusted well to the changes. Chloe loves her swing, and loves eating. Her doctor actually told us to cut back on how much she eats. This is such a change from when we had Bailey. It's difficult to know when enough is enough, especially when she wants to continue eating. She is now on solids and doing very well. She's had rice cereal, bananas, and sweet potatoes. Tomorrow she will try carrots or green beans.

Chloe looks so much like Keith. It's funny how different each of our children are. Bailey and I look alike, and Aubrey is a combination the two of us. Chloe spends most of her days at my parent's or Keith's moms house. She loves to smile and laugh, but she does not like being out of the house. She screams when we go to restaurants, parties, or shopping.

Bailey

Bailey is doing very well. She is now 3 years old. She is walking very well, trying to talk, and is almost ready to start potty training. Bailey has been very healthy for the past year, which is good news for us. I think her last hospital stay was around December of last year.

Bailey is such a tough little girl. It is nothing for her to walk into a wall, fall down, or get a bad infection and keep going like nothing has happened. She can be very demanding when food is involved. But, is happy most of the time.

Bailey has started her 3rd year at The Achievement Academy. She moved up to another class and is doing very well. It was a difficult transition for us because we loved her past teacher and para's, but we had to understand that this is what was best. Bailey interacts well with her classmates, works hard to achieve her goals, and is exhausted when she gets home! We're really going to miss everyone when she turns 6 and graduates!

It's hard to believe where she started. First, we thought we were having a healthy baby. Then, after delivery we were told she has Down syndrome. Then, the following day we were told she had a heart defect. She came home, went into heart failure, had open heart surgery, had a feeding tube, had two eye surgeries, hospitalized many times for feeding issues, MRSA, and pneumonia. Now, she's like any other child. I love her so much!

Bailey has adjusted well to having a little sister. She only gets jealous when papa is holding Chloe. I can't wait to see my three little girls grow up together. Last year her teachers taught her how to hold a baby doll and be gentle. I owe them so much! That was a wonderful idea, and thanks to them Bailey hasn't thrown Chloe across the room.

Aubrey

I haven't updated in a while. Actually, it's been six months. So, I'll start with updates on the oldest child and work my way down to Miss Chloe.

Aubrey graduated from VPK in June. It was very exciting, and yes, I cried. I feel I cry at every event she has. It's so difficult to watch her grow up. Once VPK was over, Aubrey started Summer camp at the Y. I remember dropping her off the first day and... crying. Can I blame all the tears on pregnancy hormones? She was such a big girl. She wore her backpack and walked from the car to camp all alone. I was so proud of her, but also sad because my little girl was finally growing up.



The last week of camp was called Camp Idol. They had an awards ceremony and talent show. Aubrey's "talent" was dancing. She and a friend danced to Lady GaGa's Poker Face. I guess I should be thankful she didn't go with her initial plan of Single Ladies from Beyonce. I can only imagine the dance she would have done then. So, during the talent show they gave out awards. Aubrey's ability to talk to anyone about anything paid off. She was awarded "Most Likely to be a Talk Show Host", and "Most Unforgettable Camper". We were SO proud, and yes, I had a few tears, but I wouldn't really call it crying.

Now we start the kindergarten journey. Aubrey's school was a B rated school, which I was satisfied with, but just before school started the new D grade was released. I then questioned if this was the school for her. So far, I am happy with everything. Aubrey likes her teacher, and I'll begin volunteering there this week, so hopefully I'll get to know her better. Keith and I are also involved in SAC, and the school is working to improve their D grade.

I am so proud of the little girl Aubrey has become. She loves her little sisters, and shows concern for others. She is beautiful inside and out, and she'll be the first to tell you! She's confident, smart, and strong willed. She is very much Keith's girl. They are more alike than either will admit.

Another Month has Passed

I think every time I update it's because someone is sick, or has been sick. So, I'll start off with pregnancy news, then end with my germ infested family!

As most of you know, this little one will be another GIRL! Poor Keith. I think we'll have to buy a boy dog, just to give him a little sanity. So, far this little one seems healthy. They did a thorough look at her heart, and everything looks fine. What a relief that was. The final odd from the NT scan are 1:300 for a child with DS. Bailey was 1:5000+ (can't remember the exact number), so I know odds really don't mean much. Of course, terminating wouldn't be an option, so we elected not to do additional testing.

Bailey is doing great! We have been using a gait trainer (walker) with her, and she is taking a few independent steps. She will, when prompted, say I love you. We are getting her new set of DAFO's next week, and hopefully a new walker and kid cart. It's nice to see the process of getting these items only took a short 4 months! Hmph! I've heard you shouldn't complain about things that are free; however, these items are for my child, so I think I have every right to complain. The DS clinic is in a few weeks, and I hope we're able to take Bailey. We've had a few medical issues with her, and I'd like to get a second opinion, and this clinic would be the perfect opportunity. Just last week we found ourselves in the ER again. This time with a double ear infection, tonsillitis, MRSA (AGAIN!), and pink eye. It's just so frustrating that she is sick almost every month. It's to the point that we're missing out on several events because she always seems to be sick. Plus she is missing school, and I hate for her to miss even a day, because she has accomplished so much since starting.

Aubrey is growing up. It's hard to imagine she'll be starting kindergarten soon. She's already talking about dating boys! That's scary! We received her pre-k graduation pics this week. She is writing sentences independently, and knows most of her sight words. Yesterday, we took her to the doctor and she has strep throat! So, she is now in her room "sleeping" (playing with Barbie).

My dad has also been sick, and this illness is causing me to ask you all to pray. He spent a few weeks in the hospital receiving antibiotic treatment and was on a pump for pain. He has since been released. He has a picc line and is receiving IV antibiotics at home to treat the infection. Once the infection has been treated, and his body is stronger he will have surgery. First, he will have surgery on his stomach. The infection in his stomach has caused erosion, which will require surgery. The doctor is hoping all goes well, however he has been honest with his concerns. Then they will treat a mass which is on his pancreas. We are not sure if it is benign or malignant, but we will find out as soon as possible. The primary concern is treating his stomach issues.

Keith is doing very well. He is now a VP! Congrats to him! He has been working long hours, then coming home to help with the girls. He's been great. Especially since I spent a lot of time away from home while dad was in the hospital.

It's COLD in FLORIDA! We're looking forward to Summer. I can't wait to spend time with the girls at some of the parks, aquarium, and zoo before this little one comes around. We'll have a lot to celebrate during the Summer. Keith, Aubrey, and Bailey all have birthdays, and in July the little one will be joining us. Then, the national DS conference is at Disney, which I hope we'll be able to attend. I guess it'll all be about timing.

I hope you all are doing well.

Tricia

Two Months... Really?

Two months later and I update. Facebook is going to be the death of this blog!

We had an amazing Thanksgiving, Christmas, and New Year's. We spent time with family and friends. Thanksgiving was celebrated twice. We spent that day at my parents house, and that weekend we visited Keith's family in Orlando. We had a great time.

Christmas was crazy as usual. We attended several Christmas parties, however we did miss our Down syndrome party because Bailey was terribly ill. She spent several days in the hospital leading up to Christmas, and was almost re-admitted on Christmas Eve. It started as a cold, which led to dehydration, which ended with low O2 Sats. It took a couple of weeks, but she finally recovered. Christmas morning was spent at our house with Keith's mom and my parents joining us for brunch, and that evening we went to Keith's dads house for Christmas dinner. The girls enjoyed this Christmas.

We celebrated New Year's eve with Aubrey at Sea World. She and I napped in the afternoon, then we drove to Orlando to celebrate the New Year at Sea World. She was amazing. She was so good, and survived to midnight. She had her first lesson in waiting in line for the women's restroom at an event. She saw confetti fall from the sky, and counted down to the new year.

The pregnancy is going okay. I am exhausted, crampy, and still vomiting. Poor Keith is having to deal with this. I'm in bed at 8pm every night, and I am thankful for his patience. Please don't take this as complaining, this little one is worth everything. We did have a bit of unsettling news this week. I'm hoping it means nothing, and the odds are that it means nothing. I received a call earlier in the week that the preliminary results of the NT scan were normal, and they gave me an appointment for the beginning of February. However, yesterday, I received a call from the nurse stating that the final results were in and Dr. G wants to see me on Tuesday.

At first I was fine, but after talking to Keith I felt the need to know... now! I called the office, but I was sent to voicemail, and I have yet to receive a return call. I've had my share of teary moments since yesterday. I know if this little one has any complications we will face it like we always do. I'll update when we know more.

Tricia

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.

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.

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.