Surgery Anniversary!

Today marks the one year anniversary of Bridger's open heart surgery... amazing how time flies! He is 16 months old now and is doing fantastically. He recently started walking and he continues to work hard to keep up with his big brothers. From a health standpoint, he's been doing quite well. Unfortunately, he is due to have a sedated echocardiogram next month. He has developed some pretty serious doctor's office anxiety... can you blame him? Most of his visits involve shots and/or blood draws. He was not down with the idea of laying still for 20 minutes for the last echo. In fact, he wasn't down for the blood pressure, EKG, or exam. Everything appeared stable on his echo in November and we expect the same results. He's our champ.

Williams Syndrome in the News

Recently, ABC's 20/20 aired a segment on Williams Syndrome. It was short- only about 20 minutes- definitely not long enough to delve into the complexity of WS, but it offered an overview. I'm happy to see WS getting attention in the news... so few people have heard of this condition. Interestingly enough, the incidence of WS is now estimated at 1/7500. Ten, maybe fifteen years ago is was estimated at 1/20,000. This is because of increased awareness. I have heard of individuals being diagnosed much later in childhood- even in adulthood. Typically, these are the individuals with mild (or no) heart disease. I've heard of parents watching a segment like this and recognizing that their child has the same constellation of symptoms. I met a mom whose daughter was not diagnosed until age 3. Her little girl had terrible feeding issues, poor weight gain, developmental delays and she knew that something was up and yet the doctors dismissed this as maternal anxiety (why do mothers always get blamed?!). When they finally received the Williams diagnosis and all the puzzle pieces started to fit together, she felt a sense of tremendous relief.

I'm grateful that Bridger's phenomenal cardiologist recognized, when he was just 5 days old, that his heart defects were likely due to WS. I'm also forever grateful to the geneticist and genetics counselor we saw when Bridger was 7 days old. They were certain that he did have WS (he had a blood test to confirm later on) and they were so kind and so helpful and I often think of what an incredible job they did. They discussed at length the medical and developmental challenges related to WS and despite the laundry list of issues faced by WS individuals, I left that genetics clinic feeling at peace with the diagnosis. I think that this is because these women know and adore many WS individuals- they left us with the sense that while Bridger will face many challenges, he will be an overwhelmingly bright light in our lives and in the lives of many others.

Back in May, Becket, Bridger, and I headed down to Littleton for the WSA walk (pictures above, Bridger and I are on the far right). There was a great turnout, despite the fact that the weather was cold and rainy. There were about 15 or so individuals with WS, mostly small kids. It was wild to be around a group of people who look SO much like Bridger... Rock calls this his "tribe". It was a great time and I met some wonderful parents and kids. From the pictures above, you can see a Dad with a tiny baby in the back row- they came down from Wyoming and this baby was only a few weeks old and about 4.5 lbs! So props to them for making it out. I've mentioned this before, but the WSA is such an amazing organization. We are planning to head out to Boston next summer for the national conference (held once every 2 years).

In other exciting news, Bridger is mobile! He's been working on crawling for a couple of months and about 2 weeks ago he took off. It's hard to believe that he's 10 months old. He's still a peanut and we've been trying to give him high-calories foods...his weight gain has picked up a bit so I think we are on the right track. He's on a med for reflux and it seems to have made a difference in his appetite. For the first time his calcium level was high (a common WS issue) and we have watch the calcium content of his food pretty carefully. Challenging, especially when many high calories foods are high in calcium. Heart wise, everything is stable. He still has pretty significant branch pulmonary artery stenosis, BUT it's not worsening. Sleep wise, we are as sleep deprived as ever... I have to wonder if the high calcium level is playing a part (it can cause irritibility) but we are struggling through the nights and coffee has proven to be one of my most faithful companions during the day.

If you missed the 20/20 episode, check it out here: www.abcnews.go.com/Health/friendly-extreme-meet-kids-adults-williams-syndrome/story?id=13795416

Also, a recently released documentary about WS: www.embraceablemovie.com

And last, but not least, check out this amazing blog written by a mom of a little girl with WS who also happens to be a high school Anatomy and Physiology teacher. She offers some excellent (and easy to understand) explanations of WS and it's associated medical issues: www.understandingwilliamssyndrome.blogspot.com

Dynamo

My little dynamo!

I had the intention of updating the blog throughout Bridger's recovery, but obviously life at home with 3 little boys is busy. Baby Bridger is doing fantastically. He seemed uncomfortable the first few weeks at home and wasn't his typical, active self. That changed about 6 weeks post-op and he began sleeping better, rolling over again, and was much happier. Now he is sitting up and even scooting around on his belly- backwards- but scooting nonetheless. He is very motivated to crawl after those brothers. His weight gain has been slow but steady and he's done pretty well with starting solids. The interval between cardiology appointments has increased from 3 weeks to 6 weeks. We have never had that much of a break between appointments! His right branch pulmonary artery is still very narrow, but the docs tell us that pulmonary artery stenosis often improves on its own, over time. Blood pressure is still on the high side but not too much of a concern. Med wise, he is only on aspirin.

I decided at the very last minute that Bridger and I will head down to Littleton tomorrow for the Williams Syndrome walk. It is Williams Syndrome Awareness week and the walk will help to raise money for the WS Association- and amazing organization that provides support to WS individuals and their families. The WSA has provided us with a great deal of information and has connected us with many other families. If anyone feels compelled to donate to the WSA, check out www.walk4williams.org.

One of the other mothers that I've found through the WSA is named Ruth. Her baby, Corbin, was born in February and has spent most of his life in the hospital. Yesterday, he had his second open heart surgery. He is in critical condition and needs prayers. This little baby is a fighter, and his mom is incredible. Check out www.caringbridge.org/thecorbinstory.

Home!

We brought baby Bridger home from the hospital yesterday afternoon. One week after surgery. That was the "best-case scenario" given to us prior to surgery. We were prepared to have to face a much longer hospitalization. We are all tremendously happy to have him here and, as you can see from the pictures, he is pretty ecstatic to be home.

It is hard to believe that last Wednesday he was in the midst of open heart surgery, his life dependant on a team of medical professionals, on machines that took over his breathing and the pumping of his heart. There were countless monitors, medications, blood products, tubes, catheters, and drains- making him unrecognizable. Now he is home and smiling and playing and it makes the experience of last week seem somewhat surreal.

We are forever grateful to his team at Children's and also forever grateful for all of the prayers and support he received. While we are in absolute awe of modern medical miracles, we are equally in awe of the power of the prayers and positive energy he received from near and far.

More on his recovery soon...

2/22: 5 months old!

5 months old

Today Bridger is 5 months old. It is hard to believe that so much time has passed since he was born. It has certainly been a whirlwind. Bridger spent his first Christmas here on the 9th floor. Uncle Pat spent a sleepless Xmas Eve with Bridger- B was withdrawing from all the sedatives he received to prevent him from extubating himself while he was on the ventilator. He is one feisty guy. I'm very much looking forward to having Xmas at home this year.

Bridger had a fantastic day. He is incredibly happy- smiling and talking up a storm. He loves to have conversations with the nurses. He really seems to have turned the corner- only a couple of doses of Tylenol today! He had an echocardiogram today which showed that the pressure gradients in his aorta and pulmonary arteries have greatly improved. He is off of the oxygen completely and it is looking very promising that they will send him home tomorrow.

I am anxious to be home with all the boys. And very hopeful that Bridger has a healthy future ahead of him!

2/21: I've made it out of the ICU