Friday, December 14, 2012

Post Recovery: Toddler Time!

     It has been a long six months since I've posted and I have lots to tell! Kalli is now ONE year old! I know it's crazy! She is now twenty-eight inches tall, 18lbs and loads of fun! This is what has been going on: Shortly after Kalli's recovery from her heart surgery I went back to work at the spa and we began the process of buying a home. (Finally!) We closed on our home on June 14th (my birthday) and got ready for lots of company for the next five months. My entire family had yet to meet Kalli. My mother and grandmother arrived exactly two weeks after we moved in. After that the rest of the family came and went. We went to our first buddy walk this October in Orlando. We have since met more and more wonderful people within the down syndrome community.
     Through out this time Kalli has continued to blossom and thrive. With the help of therapy she has been doing amazing. She sat up around 8 months and has been army crawling for awhile now. She just recently started to pull herself up onto things. She says dada and hi and makes the "k" sound a lot. We have done a little signing with her and will continue to teach her the entire language. Kalli is definitely the happiest child ever. She rarely ever cries and is constantly smiling and laughing. She is strong as an ox and fast as lightning. Her hair is out of control and she loves pulling mine! Her favorite toy is my iphone and anything she can wave in the air (we thought about getting her a terrible towel!) Her favorite food is ALL OF THEM! She has really chunked up on us, in a good way! Our cat Socks shockingly lets her pull his tail. She is absolutely obsessed with Mickey Mouse Clubhouse. She's got her two bottom teeth and man are they sharp! The progress she has made amazes me and we continue to work with her everyday.

<3 Our new home <3

 Gram, Mom, Me and Kalli

                                                          Kalli, my Dad and my Niece Katie

                                                                             My Sister Kim and Kalli bug

                                                                                Uncle Jon and the girls

 Cousin Jack holding Kalli

                                                                            Just playing with Cousin Katie!

                                                                           Kalli's heart buddy Brantley <3

Me and my Cuz Holly

Mommy and Daddy (Me and Brian)

Happy Halloween!

Auntie Sarah and Bug

Step Up for Down Syndrome Walk

Aunt Elaine and Kalli

Happy 1st Birthday!!!

     We have all come such a long way since Kalli was born. I never thought I could be so happy. I know I've said this already but I will continue to say it forever and ever. Kalli is the love of my life and I wouldn't change her for anything in the world. Everyday her smiling face makes me want to live life to the fullest. She is truly smart and I think she is going to educate many people that may have a different concept of her abilities. I could not be prouder of my daughter. Happy Holidays!

Wednesday, May 2, 2012

Operation AV Canal

      The day I had fearfully anticipated for the last eight months had finally arrived. As we drove to the hospital that morning I was feeling unexpectedly calm. I'm not sure if it was the feeling that I needed to be strong for my family or maybe i was just numb. I knew this surgeon knew very well what he was doing and i felt comfortable with his 100% success rate and the statistics of the cardiac team. The operation would require patching two holes in her heart and splitting one abnormal valve into two. We knew pretty much every detail of the procedure and had become very comfortable with the doctors. I cried when it came time to give her away for fear of knowing it would be days before I could hold her again.
      Eight hours of waiting will definitely make you go crazy. Patti, our nurse, updated us every grueling hour. When the operation was complete is when I lost it. Immediately afterwards the surgeon came in and explained to us that the surgery had went well but when we were finally able to see her it was difficult to look. She had chest tubes, a breathing tube and iv's coming from everywhere and she was very puffy and pale. I couldn't hold back my outburst of emotion. It was beyond difficult to see her this way. Just the day before she was giggling and rolling around on her playmat. Now she would lay restrained in a hospital bed for weeks being poked and prodded. To make things even harder I couldn't even sleep in the same building with her until her breathing tube was removed. Needless to say, I didn't sleep much at all.
      By the third day things weren't progressing and she was not recovering as expected. The area in and around the lungs was still saturated. We were told before the surgery that she would only need a breathing tube for one or two nights. After that I would be able to sleep in a cot next to her. It was now day five and they were still afraid she would not be able to breathe on her own, for her chest cavity was still congested with fluids. She had to remain sedated until they could take the tube from her mouth and she wasn't staying asleep very well. I would have given anything in this world to hold her at this point. I pleaded to god to make her better so we didn't have to endure this much longer. "Haven't I been through enough?" Apparently not because she was intubated for twelve days. Her tiny organs fought through this recovery. Every day there was a little more progress made but not enough that we could relax. Violet, a stuffed dog that played lullabyes and environmental sounds, was the only thing keeping us calm at this point. As we obsessively watched her blood pressure, heart rate and oxygen levels rise and fall, ours were rising and falling as well. We tried taking daily walks around the medical campus to clear our minds but i can't say it helped too much.

      Every morning the doctors would do rounds in which they would go from room to room, patient to patient and discuss the current status and what decisions should be made for that day. I would pray so hard waiting for progress. It scared me more than anything to hear them talk. It took me back to my pregnancy when i would pray and pray and pray before i met with any doctor.  I just wanted to hold my child and tell her everything would be ok. We had a choice to listen to them or not but either way it didn't matter. We still stressed.  I wasn't sure what it was I should be learning from this experience. Maybe patience? Not to take anything for granted? I do know that I chose this path. I knew that having my child would not be easy. I also knew for the first time who the people in my life that actually cared were. Many of them through technology alone proved to be better people than those physically close to me. My faith in god was at a whole new level.
      Although I knew she would never remember any of this it didn't make it any better. I still wished I could have gone through this for her. I daydreamed of taking her home smiling and cooing and spoiling her rotten. I've had many broken hearts in the past but this didn't compare. The love you have for your child is like no other. I cried every day she was in that hospital. Even if the progress she had made was good i still couldn't help it. I felt helpless. At times I asked myself "why did i bring this child into this world to suffer?" I would quickly realize that I was the one suffering. She would be fine.
      As crazy as it sounds, during this whole process i thought a lot about giving Kalli a brother or sister. It is a proven fact that children with down syndrome greatly benefit from having a sibling. It is also a fact that once you have a child with down syndrome your chances of having another are greater. There is no way I could go through this again. Sobbing in public every time I saw a "normal" child playing or crying myself to sleep over the babies born on facebook perfectly healthy and in the comfort of their own homes within 48 hours. These things haunted me. What bothered me even more though was the thought of the 90% of women that had aborted their child with down syndrome. Or the women who aborted perfectly healthy babies for no good reason. I don't think that i am better than anyone because of the choice that i made to keep my child but i also believe that you should play the hand you are dealt. These women are throwing healthy babies in the garbage while i am fighting to keep mine alive.
      Each day in the hospital was full of ups and downs. One day her heart would beat at a perfect rhythm and the next it would skip beats. One day her chest xray would look better and the next day worse. I constantly reminded myself what a strong soul i was. Kalli would get through this and soon we would be at home celebrating. She just needed time.
      The day Kalli no longer needed the pacemaker was the day things started looking up. She was slowly weaned off of the breathing machine and several medications. From here on it was major progress. Once Kalli decided to get better, she got better. The doctors and nurses joked that she was an all or nothing kind of gal. Joking was good, REAL GOOD! The first day she was able to eat without an ng tube she took a ludacris amount of formula. So much it made her sick! The good news was that she would have no trouble getting back to normal. Before we knew it, it was time to go home. I swear on the power of prayer! As much as i couldn't wait I was terrified. No more nurses or monitors. It was up to us to now.
     Kalli came home on April 12th after 17 days in the hospital. She was pretty stressed out and confused but we managed to make her comfortable. It would take her weeks to fully recover and as scary as it was, every day was progress. I can't thank god enough for allowing me to keep this child. She is the love of my life and continues to impress me every day. There is nothing in this world i could ask for now that she is well. I know that it will only get better. My angel *is an angel, no doubt in my mind. Every experience I have had with her has been life changing and i truly believe in destiny. I know she will continue to enrich my life and we will endure every obstacle with courage and strength. I Love you Kalli bug <3.


Thursday, March 15, 2012


And so thirty six hours later (after two inductions and the most un-natural birth you could possibly have besides a c-section) came my beautiful daughter Kalli. She was perfect. Very tiny (4lbs 11oz) but perfect. Everything I feared suddenly disappeared. We spent almost three weeks in the NICU for feeding but once she got the hang of it she took off running. It was stressful having to be there but we were prepared. We brought her home on Christmas Eve. It was the best gift I have ever received. She is such a great baby. I love her more than anything on this planet!

   We knew we would be expecting issues from her heart defect, but not until four months of age. She was doing excellent and reached those first few milestones just as any typical child would. She even rolled over the day she turned three months! We continued to see many doctors and they assured us she was not weak. The love this child was receiving was obnoxious! (and still is!) At about three and a half months we started seeing signs of failure. She wasn't eating very good and her activity became less and less. I knew this would be even more difficult than my pregnancy and her birth combined. It was time to operate.

                  Her picture is the blue background to the left in this display at St. Lukes in Jacksonville

                                                    Her awesome nursery by daddy <3

Sunday, November 20, 2011

Diagnosis Down Syndrome

    Although I had secretly wished and prayed for a family over the last couple of years, the moment i saw that plus sign on the pregnancy test i was terrified. Until this point I started to think that having children just may not be in the cards for me. Nearing twenty- eight years old I was ready to take on the responsibility although it required major changes in the lifestyle I had become so accustomed to. It would not be easy. Little did I know this would be the least of my worries. There were changes to come, and the next year of my life would reveal one plus sign after another.
    The first few weeks of pregnancy took a toll on my mind but by the time i was ready to announce it to the world i knew it would be a challenge that i was ready to endure. That warm fuzzy feeling was shortly followed by morning sickness! (By morning I mean all day and night!) Things started to get a little scary when one of my first prenatal tests revealed that i had a bacteria in my body that was dangerous to the baby. Although i was assured it could be treated i developed anxiety that would haunt me for the rest of my pregnancy. The following couple of weeks my doctor presented me with an optional blood screening for genetic disorders and tubal defects called a quad screen. She said "Most women your age choose not to take this test because they are not at risk for any of this, so read over it and if you think it's a bunch of garbage then throw it away. If not, go and get your blood drawn during your sixteenth week of pregnancy." I didn't think too much about it at that moment but over the next two weeks it would become my obsession. I wanted to know everyone's opinion, what they had thought about the test. Brian (my fiance) thought taking it would only add to my anxiety. I agreed, but I still had a strange feeling that i couldn't shake. After work one day I broke down to my best friend. I said with tears in my eyes "What if my baby has down syndrome?" She thought I was crazy and hormonal. That whole sixteenth week I procrastinated taking the test. The last day i woke up panic stricken. I jumped in the car and drove to the lab before it closed.                          
      Sure enough a few days later another doctor was showing me another plus sign. My blood screening had read positive for Trisomy 21. The doctor explained that one in three of these tests were false positives and he highly doubted that my baby had down syndrome but I would be sent to Jacksonville for a fetal sonogram to check for markers. I was hysterical. The appointment wouldn't be for two more weeks and so in that time everyone around had convinced us that this was a fluke. I can't even tell you the many, many stories of this person and that person that were told their child would have down syndrome and didn't. I still hear them! We went there that day to Jacksonville with our chins up and only positive thoughts in our heads. On a brighter note we knew we would get to see the baby and the sex would be revealed. After waiting and waiting we were finally able to see our baby on the screen flipping and kicking and going nuts. It was amazing! When she said it was a girl we cried tears of joy! We really wanted a girl. Ten minutes later they were telling us that she has a major heart defect and the chances of her having down syndrome are 1 in 2. If that wasn't hard enough to swallow they were giving us the option of amniocentisis right then and there. We were so shooken up we didn't even think about it. We just did it. The results would take 48 hours to come back and let me tell you those were the longest two days. At that point i knew the results. My worry was now with how Brian was going to handle this. He was still in denial that this could happen. So was everyone around me and I wanted to believe them. When I received the call from the nurse I quivered in fear as she apologized over and over for yet another positive test result. Then she told me I had the option to terminate. I couldn't believe she even said it. That was one thought that never even crossed my mind through all of this. I was nearly half way through my pregnancy! The next few weeks were the hardest time of my life. I grieved the loss of my "normal" child. I wanted to crawl in a hole. Deep down though i knew this was meant to be. Brian now became my rock. He embraced this with so much love and compassion. I couldn't have asked for a better person to be the father of my child. My friends and family were also amazing. I don't know what I would have done without that support.
     I would continue my pregnancy in fear but I knew i had to try and be strong. There was lots to do to prepare. I kept positive even though inside i was dying. I can't tell you that knowing the diagnosis helped me one bit emotionally. I pumped myself full of knowledge but I still had much anxiety and depression. I was unable to work after month 7 because of a torn abdominal muscle that was very painful. With all of the time i had on my hands it gave me the opportunity to do a lot of research and meet many wonderful people within the down syndrome community. The depression began to fade but the anxiety would remain. I had no idea what to expect as far as my child's health. The spectrum is so large. Some days I felt wonderful and others I would break down. At 37 weeks the doctors decided to induce my labor because the baby was falling below the tenth percentile in size. My fears escalated and I went back to stage one, terrified.