CASSANDRA (MY SWEET LITTLE
ANGEL) My husband and I had our third child on April 30, 1999, a baby girl who was brought into the world by an emergency c-section. Our daughter Cassandra was whisked away and intubated immediately. My husband (Bill) saw her for a few seconds and I was unable to see her until three hours later. We were then told Cassandra was born with a collapsed lung, club feet, one webbed hand, one hand with smaller digits, her eyes weren't closing and they had to give her platelets ( they weren't sure if she was producing them) and she had a lot of oral secretions. She also had a soft mucous cleft palate that was determined later. All of this came as an extreme shock as two ultrasounds had shown everything was fine. This night was spent praying for our daughter to stay alive. As time went on and every test was done on Cassandra, she was diagnosed on May 20, 1999 with Moebius Syndrome. I remember them passing us a sheet which indicated "Life Without a Smile, is Still Worth Living". As I read on everything fell into place and made so much sense. The not knowing what your child has is so much worse. Cassandra has been through more than what most adults go through in their lifetime. Her first surgery was on June 17, 1999 and she had a g-tube put in so she could be fed without a nasal tube down which she disliked so much. Cassandra cannot swallow which required her to have a tracheostomy which was done on July 21, 1999. Her feeds began refluxing up which is a huge problem because she can aspirate on them so she had fundoplication done on October 8, 1999. My husband and myself soon became regular little nurses and learned as much as we could. At the end of November Cassandra was able to come home on weekends and my husband and I took shifts staying up. Her big sister Nikki (8) and brother Alex (5) were so happy to have her home. Cassandra was sent back to MPICU on December 26, 1999 because she had pneumonia. She was very sick but pulled through just like a trooper. Cassandra then had surgery on January 26, 2000 on her cleft palate. The most exciting day came for us when all homecare finally was in place and we were able to bring our daughter home on February 14, 2000. The best Valentine's present ever. It was just a complete joy to be home and all be together as a family. Our stay was short-lived as Cassandra was readmitted on March 3, 2000 with pneumonia. She was ventilated again and we came home for another two weeks and then went back for hand surgery on March 30, 2000. She developed pneumonia again and we came home on April 9, 2000. She was able to have her first birthday at home and was readmitted on May 2, 2000. At present we are still in the hospital with pneumonia. Cassandra is approximately 22 pounds and 29 inches long with beautiful blue eyes and strawberry blond hair with sweet little curls. She can sit up now for short periods and is very very active. She kicks those legs and bounces her butt like she's taking off somewhere. She is suctioned very often (approximately 50 or more catheters a day). She is fed five times a day whether she wants to eat or not (210 ml) of Carnation Good Start. She is on rantidine, iron and tobramycin by aersol mask. You know when she is happy and most definitely when she's mad. She has the hospital staff, her siblings and parents quite well-trained. If I leave the room those little feet are thump, thump, thump until I'm back. She's our little queenie. Our life has been very hectic this past year but we have been truly blessed with a remarkable little girl who has been just such a happy and content baby. She has taught us more about life then I've learned in my 34 years of living. Her siblings have also had many adjustments but show nothing but love to their sister. We have made many friends at the hospital who have all become Cassie's Aunts and Uncles and have made our stay's so pleasant. One thing I would like to mention that Cassie has had is an immunization against RSV which is called synagis. It was a total of five immunizations and she has not had RSV. If anybody would like to email please feel free, I will try and help. Our email address is curtis.family@sk.sympatico.ca.
God Bless all of you and your children. |