Caitlin Brianne was born on May 31,2007. She was born 3 months early weighing only 2 lbs 15 ozs. She was a fighter from day 1. Its hard to see your baby so small and fragile after her birth. I wasn't even allowed to hold her .. just a little kiss before they took her away from me. She was so small and she was blue ... yet crying away. Caitlin was my second baby ... She has an older brother named Mason and has a little sister named Angel and a little brother named David. Caitlin's Heart Jouney begins the day after she was born ... on June 1st. A cardiologist came into my room and told me and Caitlin's daddy that our baby girl had a heart defect called TGA ... Transposition of The Great Arteries.
He tried to explain it to us, but I don't think I was really hearing him... I was just in so much shock. Then he goes on to say that Caitlin will need to have open heart surgery ... that she may not make it to 6 months old if she doesn't have it done. I was in tears ... to hear a doctor tell you that your baby girl may not live is the worse blow ever. He schedualed Caitlin's 1st open heart surgery on June 6, 2007 ... on Mason's 4th birthday. She was still only 2 lbs 15 ozs during her 1st surgery. To think of her so tiny ... the size of a little baby doll going through such a big suregry was so much and so hard to take in. On June 6th ... we spent half the day at the hospital for Caitlin's surgery ... then afterwards went home to have a birthday party for Mason. We wanted to try to make things as normal as possible for Mason.
I know things had to be crazy for him ... he now has a little sister, but can hardly see her ... us dividing our time between Caitlin and Mason was a little stressful, but we made it work. We would even take him to the hospital to see her ... touch her. Not long after her 1st surgery ... she needed a second one. We were not able to hold our baby girl for the 1st 3 months of her life. All we could do was touch her little hands and feet. She had the tiniest little cries and all I wanted to do was hold her so bad. I was so happy when we were able to give her a bath for the 1st time and was even happier when we were able to bring Mason up for bath time. He loves to help out with washing her tiny feet. The biggest day was when we were able to hold her for the 1st time. She was so tiny .. like a baby doll.
I know her daddy had to be so happy ... holding his baby girl for the 1st time and Mason got to hold her as well ... with a little help of course. Proud big brother. Not long down the road ... we were finally able to take Caitlin home. We started to have all new problems ... scary ones. Caitlin was rushed to the hospital with what we thought was a siezier. I was changing her diaper when she started to turn blue and shake ... then throwing up and choking on her formula. She was acting as if she was having a seizier , but after being examend ... she was diagnosed with gastroesophageal reflux . Every episode of her doing that was so scary . She was also on so much medication as well. But finally she was taken off. She was doing good for a while... going to regular chardiology check ups and testing .... then came the day we were told she was going to need more surgery. Her 3rd open heart surgery was at 18 months old. I was 6 months pregnant with Angel. Caitlin was going through so much at such a young age. At home she was getting occuptional and physical therapy ... Caitlin was diagnosed with being 25% developmentally delayed. She couldn't do what normal " Heart Healthy " 18 month old babies could do. And she was still small for her age.
But ... she was strong and determind anyway. During her 3 rd open heart surgery everything was going fine and she was released with no problems. But ... not long after she was home I noticed that something wasn't right with her incision area so i took her to the Altoona,Pa hospital ... after hours of torturious testing they finally desided to send us back to Danville where her 3rd surgery took place. Her incision was infected ... so we spent a week in the hospital while she was on antibiotics.{ Caitlin's 1st 2 surgeries took place at The University of Maryland in Baltimore where I am originally from and went into labor. I moved to Buffalo,NY to be with Dave, but went back to Baltimore to be with my dad during his prostate surgery.
The day I went into labor early was the day he was released from the hospital ( May 26th) . } As the years passed Caitlin has gone through so much testing ... procedures ... including sedated chest CTs, sedated MRIs,echo cardiograms, also being told that she can not go on long family walks with out going into heart failure ( so she gets pushed around in a jogging stroller ... even now and she is 6 years old), heart catherisations ( a total of 5) ... the 5th one on Sept 18, 2013 that diagnosed her with having Left Coranary Artery Diseace that led up to her 4th open heart surgery which took place on Dec 11, 2013 in Danville,PA. She had her Left Coranary Artery patched , her poulmonary artery patched because of leakage, but she still has high pressure build up on the right side of her heart. She has more leakage that they couldn't repair becuase the longer she was kept under the more her blood presure was dropping.
When she gets a little older ... she will need her poulmonary valve replaced. She is now on heart medication once again and I have to fight to get that. In school Caitlin is in the 1st grade ... she can not take gym like the other kids or play at recess with her friends outside on nice days. She is still 25% developmentally delayed and receives speech, physical and occupational therapy in school.Caitlin also has a lot of leg pain due to all the heart caths she has had.Her hands turn grey ... even when her hands are warm and her feet are greyish and cold even with socks on. Plus on top of everything else ... she has asthma. Caitlin always asks why she can not run around with her friends at school, why can't she walk with us instead of riding in a stroller , why can she not go to gym or play at recess with her friends,she gets so hurt and upset because she can not play around and wrestle around like her brothers and sister do and the most hurtful questions ... why is my heart so sick , when will my heart get better or out of know where she'll say " I don't want to die Mommy, If I die Mommy will you and Daddy miss me or I want my heart to get better".
After her last surgery she asked if her heart was fixed for good . I told her that they tried to fix it the best they could, but it needs a little more work. Then she asked if it was fixed enough to go to " The Castle" . Caitlin was granted a wish from Make-A-Wish and we will be leaving for Disney in Florida on March 3rd and staying a week there at Give Kids The World. Caitlin along with her brothers and sister are so excited to go.
He tried to explain it to us, but I don't think I was really hearing him... I was just in so much shock. Then he goes on to say that Caitlin will need to have open heart surgery ... that she may not make it to 6 months old if she doesn't have it done. I was in tears ... to hear a doctor tell you that your baby girl may not live is the worse blow ever. He schedualed Caitlin's 1st open heart surgery on June 6, 2007 ... on Mason's 4th birthday. She was still only 2 lbs 15 ozs during her 1st surgery. To think of her so tiny ... the size of a little baby doll going through such a big suregry was so much and so hard to take in. On June 6th ... we spent half the day at the hospital for Caitlin's surgery ... then afterwards went home to have a birthday party for Mason. We wanted to try to make things as normal as possible for Mason.
I know things had to be crazy for him ... he now has a little sister, but can hardly see her ... us dividing our time between Caitlin and Mason was a little stressful, but we made it work. We would even take him to the hospital to see her ... touch her. Not long after her 1st surgery ... she needed a second one. We were not able to hold our baby girl for the 1st 3 months of her life. All we could do was touch her little hands and feet. She had the tiniest little cries and all I wanted to do was hold her so bad. I was so happy when we were able to give her a bath for the 1st time and was even happier when we were able to bring Mason up for bath time. He loves to help out with washing her tiny feet. The biggest day was when we were able to hold her for the 1st time. She was so tiny .. like a baby doll.
I know her daddy had to be so happy ... holding his baby girl for the 1st time and Mason got to hold her as well ... with a little help of course. Proud big brother. Not long down the road ... we were finally able to take Caitlin home. We started to have all new problems ... scary ones. Caitlin was rushed to the hospital with what we thought was a siezier. I was changing her diaper when she started to turn blue and shake ... then throwing up and choking on her formula. She was acting as if she was having a seizier , but after being examend ... she was diagnosed with gastroesophageal reflux . Every episode of her doing that was so scary . She was also on so much medication as well. But finally she was taken off. She was doing good for a while... going to regular chardiology check ups and testing .... then came the day we were told she was going to need more surgery. Her 3rd open heart surgery was at 18 months old. I was 6 months pregnant with Angel. Caitlin was going through so much at such a young age. At home she was getting occuptional and physical therapy ... Caitlin was diagnosed with being 25% developmentally delayed. She couldn't do what normal " Heart Healthy " 18 month old babies could do. And she was still small for her age.
But ... she was strong and determind anyway. During her 3 rd open heart surgery everything was going fine and she was released with no problems. But ... not long after she was home I noticed that something wasn't right with her incision area so i took her to the Altoona,Pa hospital ... after hours of torturious testing they finally desided to send us back to Danville where her 3rd surgery took place. Her incision was infected ... so we spent a week in the hospital while she was on antibiotics.{ Caitlin's 1st 2 surgeries took place at The University of Maryland in Baltimore where I am originally from and went into labor. I moved to Buffalo,NY to be with Dave, but went back to Baltimore to be with my dad during his prostate surgery.
The day I went into labor early was the day he was released from the hospital ( May 26th) . } As the years passed Caitlin has gone through so much testing ... procedures ... including sedated chest CTs, sedated MRIs,echo cardiograms, also being told that she can not go on long family walks with out going into heart failure ( so she gets pushed around in a jogging stroller ... even now and she is 6 years old), heart catherisations ( a total of 5) ... the 5th one on Sept 18, 2013 that diagnosed her with having Left Coranary Artery Diseace that led up to her 4th open heart surgery which took place on Dec 11, 2013 in Danville,PA. She had her Left Coranary Artery patched , her poulmonary artery patched because of leakage, but she still has high pressure build up on the right side of her heart. She has more leakage that they couldn't repair becuase the longer she was kept under the more her blood presure was dropping.
When she gets a little older ... she will need her poulmonary valve replaced. She is now on heart medication once again and I have to fight to get that. In school Caitlin is in the 1st grade ... she can not take gym like the other kids or play at recess with her friends outside on nice days. She is still 25% developmentally delayed and receives speech, physical and occupational therapy in school.Caitlin also has a lot of leg pain due to all the heart caths she has had.Her hands turn grey ... even when her hands are warm and her feet are greyish and cold even with socks on. Plus on top of everything else ... she has asthma. Caitlin always asks why she can not run around with her friends at school, why can't she walk with us instead of riding in a stroller , why can she not go to gym or play at recess with her friends,she gets so hurt and upset because she can not play around and wrestle around like her brothers and sister do and the most hurtful questions ... why is my heart so sick , when will my heart get better or out of know where she'll say " I don't want to die Mommy, If I die Mommy will you and Daddy miss me or I want my heart to get better".
After her last surgery she asked if her heart was fixed for good . I told her that they tried to fix it the best they could, but it needs a little more work. Then she asked if it was fixed enough to go to " The Castle" . Caitlin was granted a wish from Make-A-Wish and we will be leaving for Disney in Florida on March 3rd and staying a week there at Give Kids The World. Caitlin along with her brothers and sister are so excited to go.