To all of you who have been supporting us over the past 5 months, “Thank You!” We are lucky to have all of you. There are so many of you out there, that it’s easier for me to write a note or a blog to keep you all up to date. It would be impossible for us to try to contact you all one by one.
Alaina is doing great. She is growing by leaps and bounds, eating like her Daddy, and warming people from the inside out the whole time. She is now eating cereal, (see lucasshutterworks.com for photos!) and sleeping through the night.
As we’ve known from shortly after Alaina’s birth, she has two heart defects. She has an Atrial Septal Defect, and a Ventricular Septal Defect. Neither have been serious enough to qualify as an “emergency.” There was a chance that they could have repaired themselves.
In layman terms, Alaina has two holes on the inside of her heart. One in the divider between the two top sections, and one between the two bottom sections. There was a wide window of opportunity for medical intervention to solve the problem. Sometimes, these issues can exist for years without the need for repair.
After a few months of monitoring, it has been determined by Alaina’s Cardiologist, that the holes are not showing any signs of fixing themselves. Also, because of one of the holes, her lung pressure is higher than normal. Not to the point of any emergency, but above normal none the less.
Should this go unaddressed, the lung pressures could reach a point where she would be plagued by difficulty breathing, and cyanosis for the rest of her life.
Our cardiologist and her colleagues have reached the decision that now is the time for medical intervention. On August 22nd, Alaina will be at The Nemours/Alfred I duPont Hospital for Children, in Wilmington Delaware for open heart surgery, where both of the holes will be repaired. While this is a very serious procedure, it is one that is very common for children with Down Syndrome. So common, that one doctor related it to having tonsils removed.
Certainly, heart surgery is far from being a simple throat procedure, but we understood.
We instantly began our research on the duPont Hospital, and have been very pleased with what we have learned. As it turns out, we know people who have had their children at this very hospital for wide variety of things, and they have all had great things to say.
On the 16th we will be there for Alaina’s presurgery exam and x-rays. After the tests, we will have a chance to meet with the surgeon who will be taking care of her.
We already have great relationships and respect for Alaina’s doctors and cardiologist, and we have faith in this decision, and choice of hospital.
On the 22nd, we will be staying at the Ronald McDonald House, which is on the campus of duPont. Alaina’s surgery will only be a few hours, but we are planning on being there for 7 to 10 days. After which, the healing process is expected to be fairly easy on her, based upon her health and growth.
A few weeks later, this will all be behind us. All that will be left behind is a small scar.
For now, and until the 22nd, we are all in good spirits, and doing great. We know this is something that has to be done, for the betterment of our child. We are sure that this is the right thing to do, and she will make a full recovery and we can all be back to normal soon.
In advance, we would like to thank all of you for your support. We would like to thank our families and friends for taking care of things back home... for taking care of our dogs, cutting the grass, doing our laundry, stocking up the kitchen, washing the car... I’d like to thank Rachel and Chris for the Ipad that they are going to get us, so we can stay in contact with everyone back home, and stay entertained while away. Thanks Rachel and Chris, how very thoughtful of you.
Thank you to all of you. I don’t want to imagine how much harder all of this would be for us, without all of you.
We will be updating as often as we can, on Alaina’s condition and recovery. Feel free to subscribe to the RSS feed on my blog page, or follow us on twitter.
Blog page: babyisms.blogspot.com
Twitter name: LucasShutter
