Isaiah 55:9 – Originally Written June 16, 2008
September 3, 2009Posted by on
Nearly 11 weeks ago our beautiful baby girl came into this world. Its been a rather busy 11 weeks so I’m sorry I’m just now giving everyone the update. Overall, we are doing great. Mikayla is beautiful and we love her dearly.
Its funny how we make plans in our lives and we prepare for things to be a certain way and then God says, “Wait!! You forgot that I’m in charge here.” And all our planning and preparation doesn’t matter. At the hospital Mikayla was given a clean bill of health. She was small – only 6 lbs. 6 oz. – but otherwise a healthy baby. At her 1 week check up the pediatrician noticed a heart murmur. She suspected that it was nothing but referred us to a pediatric cardiologist to be sure. About two weeks later we saw the cardiologist and learned that Mikayla has two different problems with her heart.
The first is really no big deal, at least not right now. She has two holes between the upper chambers of her heart. This is a common newborn problem and will most likely fix itself over the next few years. If not, when Mikayla is 3 or 4 we might have to put her on some medication to help it along.
The second issue is Pulmonary Stenosis. This is where the arteries carrying blood from her heart to her lungs are narrower than they should be. This narrowing is mild to moderate from what the doctor can tell. We’re just watching her via ultrasound every 3 or 4 weeks to make sure it doesn’t get worse and as long as her heart handles the added pressure, this problem should resolve on its own over time.
Thankfully, the pediatric cardiologist just so happens to share an office with a geneticist. Because of this, he knows what “red flags” to look for in his heart patients that might be the result of a bigger issue. Pulmonary Stenosis is one such flag. He referred us to the geneticist to have Mikayla tested for Williams Syndrome. We found out a few weeks later that she does have it.
Williams Syndrome is pretty rare and most people have never heard of it. Some common characteristics are: heart and blood vessel problems, low birth weight, feeding problems, irritability during infancy, kidney abnormalities, sensitive hearing, learning disabilities or developmental delays, and the list goes on. There are also very good things characteristic of Williams: strong musical ability, very friendly personality, strong language skills. From everything we’ve read, Williams affects everyone on a different level so we won’t really know how much Mikayla will be affected until she gets a little older. We know she has the heart issues and she is definitely an irritable infant:). On a positive note, her kidneys are not affected and as of now they look normal.
The other positive is that we found out so early. Most people with Williams aren’t diagnosed until they are in Elementary School, some even older. The fact that we know so early gives us an opportunity to help with some of the learning delays that might come up.
Click here if you want to find out more about Williams Syndrome.
So, why am I sharing all of this? Mike and I would appreciate your prayers. There is a lot that we don’t know about the years to come. Planning and preparation is pretty much out the window (which, if you know me very well you know that’s not an easy thing). The next several months will most likely be difficult. Mikayla’s sleeping and eating patterns…wait, there is no pattern. We’re working on some dietary tests to see if we can reduce some of her crankiness and help her get on a better schedule…pray that it works. Also, pray for her heart. Generally, people who have Pulmonary Stenosis caused by Williams grow out of the Pulmonary Stenosis. In the mean time, Mikayla is at risk for heart failure. We don’t know at this point how big that risk is, we just know its a risk. Pray that Mike and I have wisdom on medical decisions we have to make going forward as well as on raising Mikayla.
Of course encouraging words, stories, etc are also appreciated. One thing that I will ask you not to say is that “God gives special children to special parents.” While I’m sure there is some truth in that statement and I know that the 10,000 people who have already said it to us did so with the best intentions. But, I know me and I know Mike and we aren’t all that special…well, at least I’m not. I won’t speak for Mike but I’m sure he feels the same way. If anything the exact opposite is true. God created Mikayla so that He would receive glory – period. Nothing about me or Mike deserves a special child. We are honored and feel privileged that God gave her to us, but we realize that it is important for Him to receive glory by her life and not us. Pray that Mikayla’s life is a witness of God’s mercy and grace and that He alone is glorified.
I want to share one last thing…Mike contacted a lady whose son has Williams. She sent us this beautiful analogy:
WELCOME TO HOLLAND
By Emily Perl Kingsley
When you’re going to have a baby, it’s like planning a fabulous vacation trip – to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It’s all very exciting.
After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, “Welcome to Holland.”
“Holland?!?” you say. “What do you mean Holland? I signed up for Italy! I’m supposed to be in Italy. All my life I’ve dreamed of going to Italy.”
But there’s been a change in the flight plan. They’ve landed in Holland and there you must stay.
The important thing is that they haven’t taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It’s just a different place. So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.
It’s just a different place. It’s slower-paced than Italy, less flashy than Italy. But after you’ve been there for a while and you catch your breath, you look around…and you begin to notice that Holland has windmills…and Holland has tulips. Holland even has Rembrandts.
But everyone you know is busy coming and going from Italy and they’re all bragging about what a wonderful time they had there. And for the rest of your life, you will say “Yes, that’s where I was supposed to go. That’s what I had planned.” But, if you spend your life mourning the fact that you didn’t get to Italy, you may never be free to enjoy the very special, the very lovely things about Holland.