On the eve of mother's day, I've been thinking a lot about these past four years and the joys my babies have given me. Tomorrow marks another important day, the start of our family's first Williams Syndrome Awareness Week.
Throughout the week I'm planning on posting information about Williams Syndrome and share my experiences with Katie. Here is my first:
Becoming a mother... again.
In the start of my pregnancy with Kate I was immediately nervous that there was something wrong. I kept blaming it on my Human Anatomy class ;) Everytime we'd cover a new system I'd panic about something. At our big ultrasound at 20 weeks, I entered full of excitement to find out the baby's sex. At the end the technician asked us to stay in the waiting room to talk to the doctor. I knew then and there that something was wrong. We didn't have to do that last time. We waited for what seemed like an eternity even though it was probably only 5 minutes. A secretary came out and called me over to show me the times she booked a perinatalist appointment and I panicked. I hadn't talked to the doctor, yet, and now I knew there was definitely something wrong. Finally, the doctor called us back and told us that her heart looked abnormal.
That was the start of it all. I felt devestated. I felt like it was my fault that there was something wrong. Over the next 4 months, up until Kate was born, we saw perinatalists one or two times every week and the cardiologist monthly. Kate stumped them all. I'd lay on the bench with the ultrasound machine patrolling my belly for hours sometimes. There were lots of theories. Some of them manageable some of them heartbreaking. I spent Christmas break thinking my daughter had Ebstein's ananomaly which has a 1 in 8 survival rate. I put more than a few nurses in uncomfortable situations, crying at doctor appointments out of the blue. I was having a really hard time with it all.
When the day aproached for my C-section we arrived at the hospital with nervous excitement. They were ready for the worse. When they set up the heart rate monitor there were several people watching. I had to roll over to my side to get my epidural when they lost her heart rate. Within seconds the room was busy with dozens of people. They had ultrasound machines on me trying to get a look at her while others where trying to find her heart rate. All I could do was pray. They made the call to rush me into delivery. I hadn't had my epidural, yet. They ran me down the hallway. I was wheeled into a wall when they turned the corner. In the operating room they managed to find her heart rate but still decided to go ahead. I had to go under with gas. When I woke, I was informed that she arrived with a hardy scream and a high apgar score. All I could manage was to ask her color...pink. Thank God.
I only got to glace at her on my way up to my room. Not until I could "unplug" myself from the pain meds and monitors could I meet her formally. I held my daughter for the first time the following day. She was a tiny 5 lbs. 10 oz. Which was actually the largest baby in the NICU at the time. She graduated to an open bed and a room of her own within the day. We stayed in the hospital for 5 days as the cardiologist tried to figure out why her heart was so large. They found two VSD's (tiny holes in the wall of the heart).
I was determined to be with her. It was lonely being in a room alone without your baby after all we'd been through. People would come in and catch me crying alone and ask what's wrong. That was the hardest part in the beginning. Explaining that my baby had something wrong. I always thought I'd have a perfect child. No one ever thinks these types of trials will happen to them... only to their neighbors or people they meet now and again. By the end of the third day I was walking myself down to NICU on my own. The hardest day by far was going home without her on the 4th night. It didn't feel right.
We got to bring her home on the 5th day. She was only home for 2 days when the cardiologist sent us to Children's Hospital for observation. She had congestive heart failure. I was so upset over it all. I missed my three year old and wanted to be with my family. We had to share a room with other patients, one of which was a baby recovering from open heart surgery. It was scary that that may be something Kate would need in the future. The cardiology floor was so busy that when you walked in the waiting area, people were sleeping head to toe on the floor every night. It was insanity. All I wanted to do was get out of there. Until recently I couldn't even look at that hospital or its commercials and hold back the tears.
We continued to see the cardiologist to monitor her heart. In mid-May he spotted a narrowing in her aorta. He suggested to us that she may have Williams Syndrome and wanted to send out for a genetic test. At first when he told us I thought, "ok. Another theory." I wasn't upset at all. When I got home and started googling I knew deep down that he was right. The facial features, common issues... then I saw a posting from a family with a picture of their baby. It could have been Kate in his arms and I wouldn't have known the difference.
The cardiologist called on May 21st. I was in the library with my class and stepped out to talk to him on the phone. I ended up on the floor of the main office crying. It was positive.
After receiving a diagnosis, things started to actually get better. With my newfound knowledge, I was proactive on getting Kate treatment for common issues with ws. We still have our good days and bad but her heart has only improved since. I've found an incredible support network, something that could have helped me in the beginning. There are times I still get anxious and worried but overall, I know she'll be a happy, healthy girl and that's what's important.
One of the most amazing things I've discovered is that there are MANY people out there that don't receive a diagnosis of WS until much later in life. The quality of medical care really varies throughout the U.S. and I've very fortuate to live in a city with great Children's hospitals. Most people don't know anything about Williams Syndrome. In fact, I've found myself educating doctors about it. The more others learn, the more likely children and adults who are looking for a diagnosis or are misdiagnosed can get answers. Having that diagnosis makes a world of difference in how you can care for your child and it improves your outlook in this world.
Learn more about ws at
www.williams-syndrome.org. Thanks for reading my story! Look for more later this week...
When we return to a mound of laundry the height of Mt. Everest, I realize that the house is in shambles from all that play and it's time to get to work. That, coupled with around this time of summer everyone and their brother begins to ask teachers when they have to go back to work; like we really want to think about that! All it reminds me is that my summer is almost over and I haven't touched the to-do list. Then the schedule begins to pile up. Time to fit in all the doctor appointments, IFSP/IEP meetings for Kate, vet appointments and random other items on the to do list. After a couple weeks of that I feel so drained from running around with my head on backwards that I start having lazy days where I don't want to move off the couch. Then I start to get a view of the house and think, Lord, we have far too much stuff. So purging and painting begins. I clean out closets and rooms and make a giant donation/sale pile, paint a room, redecorate it and marvel in its clean, crisp airy feeling that I know will last a whole week, if I'm lucky! After about 3 weeks of all that work I realize that time is short and I won't get that time back that I used painting a wall that I could have used to take my kids to a museum or the zoo. Basically, I'm not so great at balancing on the tightrope. So, folks, I'm reentering the fun stage. I'm going to make the best of what summer has to offer. See you when school starts... and don't ask me what day that is, I'll have to recheck my schedule :)
We've been playing "treasure week" at home, building ships out of boxes and turning ordinary rocks into golden nuggets for the sand box.
