The First Month
At 7:03pm, on December 3rd, 2009, Caitlyn Veronica-Ann was born into this world a healthy baby girl! We finally got too see if she was a boy or girl! She was born 2 1/2 weeks early, weighing in at 8lbs 2oz and 19 1/2 inches long! Once Cailtyn was stabalized I was finally able to hold and cuddle her. It was a wonderful thing being able to hold my baby girl in my arms after such a long road of ups and downs. She was finally here and she was mine, the baby that I wanted!
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| Caitlyn in the bilibed - 12/7/09 |
Caitlyn stayed in the NICU until the 5th then they released her and we got to go home. The day we left the nurse told us that she looked a little yellow and her biliruben level was 10.5, so to just keep an eye on it and take her in if she starts to look worse. The next day, Sunday, the whites of her eyes were turning yellow and she looked like a little orange pumpkin. I called the nurse help line and was told if she could eat and poop normally to keep her home until the following day, however, Monday morning when we arrived at the pediatrician's office we were sent straight to the hospital!
Caitlyn's biliruben levels were checked and in little over a day they had more then doubled to 23.5, (when biliruben levels get towards 30, there is an increased risk of liver and brain damage). In order to reduce her biliruben levels back to a normal and safe amount, she was put in a bilibed. Four and half days later we thought our troubles were over, but the next night we were back in urgent care because she developed thrush due to complicateions of an antibiotic of mine while breastfeeding her. We dealt with the thrush for a little over 3 weeks. I thought for sure it wasn't going to go away.
Caitlyn was only ten days old when we traveled to the Children's Hospital of Wisconsin, located in Milwaukee. Dr. Drolet, of the vascular anomolies clinic, saw her and during that visit she recieved an MRI. Together with a team of great doctors, Dr. Drolet hoped to create a plan to treat Caitlyn. It was here that we also received her official diagnosis: Klippel Trenaunay Weber Syndrome.
The following week Marcia, Dr. Drolet's nurse, was in touch. Due to the possibilty of her right being dislocated, several more doctor appointments were scheduled. At the clinic, an ultrasound was performed on various areas of her body. Unfortunately for us, and Caitlyn, the doctors' anticipations were confirmed; her arm was still broken and her hip was severely dislocated, (it was unable to be manuvered at all). Her arm was casted and a pavlik harness was used, although due to the severity of her injury the doctor's weren't optimistic about it fixing the problem. Christmas came and went, and ten days later we went back to Dr. Jacobson. Caitlyn's arm had healed and her cast was removed. As the harness did not help her hip, that was also removed. I could finally hold her with no strings attached! It was so wonderful being able to hold her against me without having to worry if I was hurting her, or if her arm was being bent. Dr. Jacobson said that she will need surgery on her hip between 6 and 9 months of age. An appointment has been set for May and June to see her pediatric orthopedic doctors, from there we will discuss a good time for surgery.
December was finally over, and around the corner was January.
Happy New Year
The new year started off GREAT! Despite everything, Caitlyn was doing wonderful! At one-month she was sleeping in the cradle for the first time, before that Pete's mother and I had to switch off staying, and holding her, now we were all able to get some much needed rest.
Early that month, we had yet another appointment at the Vascular Anomalies Clinic in Milwaukee. At this appointment there was an entire team of doctors working on Caitlyn's case; Dr. Drolet- Dermatologist, Dr. Johnson - Interventional Radiology, Dr. Kelly - Pediatric Oncologist, Dr. Aiken - Pediatric Surgeon, and Dr. Hill. We were able to ask all the questions that had been bothering us, and learn a lot more about Caitlyn's condition. We were a little concerned because it looked like her leg had grown quite a bit since her birth and we weren't sure why. All of the doctors, along with us, were in agreement to watch her leg and abdomen growth over the next month and we would meet again in February.
The rest of the month went along without any obstacles. I was very anxious to get back down to Milwaukee to get treatment started as soon as we could.
Sclerotherapy Time!
In no time it was the second week of February, and once again we were back meeting with Caitlyn's team of doctors. They all decided that the next course of action would be to have Dr. Johnson do sclerotherapy on the macro-cystic areas of her body; which wasn't a large part of her body, but at least it was a start. 
February 18, 2010, Caitlyn, Peter, and I returned to Milwaukee for her surgery. We were not allowed to feed her formula after 5 am, (she was allowed some pedialyte until 10 am), but her surgery wasn't supposed to begin until 1 pm. As one could expect, she was a little cranky without a full tummy, and she even more upset because life is unpredictable and Dr. Johnson was late starting her surgery due to another emergency he had to attend to. When the time came for her surgery, Peter, my sister Amanda, and I were allowed to say good-bye and walk with her to the operating room. After some tears and prayers, we sat in a private waiting room eager for updates, which we thankfully recieved about every forty-five minutes. Three-and-half grueling hours later, Caitlyn was out of surgery and in the recovery room. Since only one parent could go in at a time, I jumped at the chance to see her immediately. The moment I walked in I could tell she was uncomfortable. Little moans escape
d her and reached my ears from across the large room. The breathing tube caused her throat to be hoarse and that made me feel even more sad. Although, she was not fully conscious, the nurse handed her to me and I carefully held and soothed her, which immediately calmed her as she drifted back into sleep.
Caitlyn was kept in the hospital overnight for observation. Once Caitly
n, her daddy, and I were all situated in her room she started to regain consciousness, however, she was still extremely exhausted from the day's adventure. Dr. Johnson, her thoughtful and talented surgeon, stopped by her room late that night. He said he wanted to say goodnight to Caitlyn and to let her parents know she'd be fine, even though it could be up to eight weeks before we would see full results from the procedure. Dr. Johnson was extremely considerate to all of us, for which we will forever be grateful. In the wee hours of the morning, Caitlyn awoke and started smiling up at me. I was beginning to have my happy, giddy baby back. That morning she was discharged, and all three of us were happy to journey towards home.
February 18, 2010, Caitlyn, Peter, and I returned to Milwaukee for her surgery. We were not allowed to feed her formula after 5 am, (she was allowed some pedialyte until 10 am), but her surgery wasn't supposed to begin until 1 pm. As one could expect, she was a little cranky without a full tummy, and she even more upset because life is unpredictable and Dr. Johnson was late starting her surgery due to another emergency he had to attend to. When the time came for her surgery, Peter, my sister Amanda, and I were allowed to say good-bye and walk with her to the operating room. After some tears and prayers, we sat in a private waiting room eager for updates, which we thankfully recieved about every forty-five minutes. Three-and-half grueling hours later, Caitlyn was out of surgery and in the recovery room. Since only one parent could go in at a time, I jumped at the chance to see her immediately. The moment I walked in I could tell she was uncomfortable. Little moans escape
d her and reached my ears from across the large room. The breathing tube caused her throat to be hoarse and that made me feel even more sad. Although, she was not fully conscious, the nurse handed her to me and I carefully held and soothed her, which immediately calmed her as she drifted back into sleep. Caitlyn was kept in the hospital overnight for observation. Once Caitly
n, her daddy, and I were all situated in her room she started to regain consciousness, however, she was still extremely exhausted from the day's adventure. Dr. Johnson, her thoughtful and talented surgeon, stopped by her room late that night. He said he wanted to say goodnight to Caitlyn and to let her parents know she'd be fine, even though it could be up to eight weeks before we would see full results from the procedure. Dr. Johnson was extremely considerate to all of us, for which we will forever be grateful. In the wee hours of the morning, Caitlyn awoke and started smiling up at me. I was beginning to have my happy, giddy baby back. That morning she was discharged, and all three of us were happy to journey towards home.
