Saturday, May 8, 2010

Becoming a mother...again.

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 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 Thanks for reading my story! Look for more later this week...

Sunday, April 18, 2010

Lessons Learned: Pensecola, FL trip

One of my goals for this blog is to chronicle our vacations to help me remember and share cool places we visit and places to stay. So here we go...

Lessons we learned on the Pensecola trip:
1. Always print off directions to where you are going and places that you want to see when you get there. My memory fails me 101% of the time these days. Result of this mistake- Ally has zero confidence that we'll be able to find our way around. Whenever she'd start whining we'd joke that instead of "turning this car around" that we'd go and get lost. It took us two weeks until she regained confidence that we could find our way around our hometown :).

2. We need to watch more than just cursing in front of Ally, seriously, she is a sponge. When we decided to take a family bike ride along the Gulf shores national seashore (awesome, by the way), Kate was extremely angry. She screamed the entire way. Ally decided she couldn't take it and screamed right back with "shut down!" (her version of shut up)! Ok, that is NOT nice even though it is pretty funny.

3. When a restaurant mentions that it's more casual than their neighbors, that doesn't mean it's casual. After a full day on the beach, wind blown and sandy, we wanted to find a restaurant to eat some fish. Well, needless to say, we were grossly underdressed. Sorry Fish House!

4. Make plans for the last day to stay "grounded" and explore the park you're camping at. It will make the day less rushed when it comes to packing up! By the way, camping in state parks are the best! We had a great campsite at Blackwater River State Park. It was 18 miles from the beach, which wasn't a bad drive...

5. Charge the camera every night... the best day of the trip was our day at the beach. We flew a kite, collected seashells, built a sandcastle, walked the pier... took lots of pictures. Then sunset came and the camera died. Fooey.

6. When visiting museums, don't pack the stroller with so much stuff that your purse falls out and you lose it. Enough said.

7. Finally, no matter how many "mistakes" you have on trips, you'll have the best time and remember even the stressful times as happy memories :)

Tuesday, March 9, 2010


I cried myself to sleep last night. I learned of a little girl who lost her life due to an unsuccessful heart surgery and just couldn't hold back the tears. Whenever anyone hears of kids dying it's just heartbreak. It turns to devestation when you realize that your own child has similar risks. The "s" word has been mentioned many times at Kate's cardiology appointments. So far we have been lucky and have been able to avoid it. Dr. Goel feels that as long as the holes in her heart close by the time she's 4 and her ateries don't narrow within a certain range, that we can avoid it. So I pray for that and nearly bathe her in holy water now and then.

I've gotten more comfortable as time has passed since Kate was diagnosed with a heart defect. In the beginning I thought my world was crashing. I would have spent many a day in bed feeling sad for myself and my baby if I hadn't had a 3 year old dragging the covers back and insisting on "pwaying pwaydo". Yes, in the beginning, Ally was my saving grace. Jon, too. Jon made me wake up to the fact that God choose me to be Kate's mommy for good reason and there was no reason to mope around feeling sorry for yourself. Yes, God chose me for good reason. I honestly believe that.

So fast forward to last night. I'm feeling blessed and happy and normal. Then word of that devestating day for another family and all those feelings rush back. There is a black little hole in me that is terrified about my daughter's fate.

Good things happened today, too. Things that remind me that everything is fine. Kate said "hi" a dozen times. She's really proud that she says it, too. It makes me smile just thinking about it. I nearly had a heart attack when I found that she rolled out of her swing today. After rushing to "save" her I found her giggling and playing with the tag underneath it. Shesh. The kid shows no fear. Ally decided that she's a girl. Ha. For 3 years all she wanted to do was play cars, trains and get dirty. Today she got her first Barbie, wore a dress and a party hat and painted her finger nails. I love it.

So, a rollercoaster of a day. I'm hoping tomorrow is a Sunday drive through Kansas...

Sunday, March 7, 2010

Counting down to sunshine

Spring break can't come soon enough. After a stagnant travel year, we are about to take our first excursion to the sunny beaches of Pensacola, Florida. Excitement resonates from our household, with the exception of Kate, of course, she has no idea of the sights in store. Although Jon and I have become worthless in all capacities other than trip planning and prep, Ally is the most excited. Nearly every word out of her mouth is related to the camper, the ocean, the beach or seashells. She's never seen the ocean. We took a walk in a park that borders the Meramec yesterday and she was transfixed by the muddy water. She'll be ecstatic in a week. I can't wait!

A little trepidation lingers in the air. This will be Kate's first camping trip. Hopefully she'll sleep well in the camper for our sake and the sake of our camping neighbors. I'm feeling optimistic, though. That's part of the fun, right? The fun of the unknown? We'll be makin' memories, like Grandma Lohse always says.