Please continue to pray for Baby Emma

We've been asking for prayer for Emma for about three months now. Emma is the granddaughter of our dear friends, Tim and Sue Wolfe. Emma was born with a severe heart defect and had an operation to repair and rebuild what was missing from her heart at three days old. She has been in Riley since her birth. Emma's older twin brother's both had their own share of difficulties when they were born three years ago. Her brother Caleb had a serious heart defect as an infant as well and had surgeries of his own as well. He is now doing well and bot he and his brother Tyler love their little sister Emma and can't wait for her to come home!

Emma was to be released from the hospital today (this was one of many release dates she has had) but will not be going home today. Please read her Caring Bridge update below and pray for this little baby and her family.

What a busy and somewhat chaotic week! Most of Monday was spent trying to get checklist items done or scheduled for later in the week and learning the in's and out's of the g-tube. Tuesday Emma had her scope to check her left vocal chord and the verdict is.... still not moving. The ENT said she is just a genius at compensating with her right. As long as her cry continues to stay this loud and she isn't developing further issues swallowing we do not need to follow up again for at least 6-12 months.

Tuesday evening I went home and picked up the boys and Grandma Cindy who came to stay at RMH until today. It's been an adventure for everyone. The boys had a little trouble listening and following directions and we were often finding ourselves chasing them in circles around the CICU or RMH. They really enjoyed spending some time with Emma and doing art therapy at RMH. It was nice to spend some time with them, but they had really worn out their welcome when I took them home tonight.

Now for the disappointing news of the week. Emma had her going home echo yesterday. There is a pressure difference across her aortic arch which is increased from her echo 6 weeks ago. Due to this she is going in tomorrow am for a catheterization to measure the pressures internally across the arch. The coarctation (narrowing of the aorta) they are seeing in the echo is in the area where her aorta was reconstructed and due to scar tissue. This is something that sometimes occurs after the Norwood and is nothing that was missed previously or could have been prevented. They will take images of the area and then decide whether or not they need to balloon the narrowed area. Emma would have needed a cath prior to her Glenn anyway which would have required coming back in for an overnight stay so this will also take care of that requirement.

We pray that if the docs do see a coarc that needs addressing tomorrow they are able to take care of it with the ballooning. I was told that 80% of the time this works. The alternative is repeating the Norwood and going in and rebuilding the aorta again. Needless to say we are not going home tomorrow. Now it is likely Sun-Mon. Sorry Heather you're going to have to put up with us for another weekend, but you might be the one who gets to finally kick us out :)

Sorry this is already a pretty long update today, but I ran across something this week as I was cleaning out our room that someone had given us during our stay and I wanted to share with everyone. I have read this before on other sites and I think it really helps give perspective on what our experience has been like having kids with heart defects.


"Welcome to Holland" By Emily Perl Kingsley

"I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this....

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 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."

And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss. 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."