Welcome to Keaton's CaringBridge website. We've created it to keep friends and family updated about our sweet baby boy.
Visit often to read the latest journal entries, visit the photo gallery, and write us a note in our guestbook. We will try to update often, and hope that you will continue to keep Keaton in your prayers.
Here's a little background behind this blog:
After struggling with infertility once again, we were delighted to learn we were expecting twins in April 2009. On Sunday, December 20, 2009, Keaton and Brogan entered this world via c-section at 36 weeks, 4 days gestation. We were once again blessed with two beautiful baby boys. Our first son, Nolan, age 4, was now a big brother, and very proud!
At first both boys were deemed perfectly healthy, and were staying in the well-baby nursery at Aultman Hospital, as well as rooming in with Holly as requested. However, on the 21st, Keaton was moved to the NICU for low blood sugar monitoring. This was not alarming to us, and seemed to be precautionary. So off he went to the NICU. A few short days later, Brogan joined him there in an adjoining suite, designed for twins. He was there to continue to learn to eat, and was jaundiced, but did not have any other medical issues.
On December 23, while still in the hospital and recovering from a c-section, I received news that a heart murmur had been detected in Keaton's heart. While it was assumed to be a PDA, we learned 24 hours later that he has a very rare heart defect, called "Abnormal Aortic Origin of the Pulmonary Artery." Essentially, he was born with a hole in his pulmonary artery that allowed fluid to escape into his right lung... and it needed to be fixed via surgery for his survival. The pulmonary artery was pumping too much blood into Keaton's right lung at a pressure much too high for his tiny body. It could cause irreversible damage to the lungs, if not treated soon.
We met with a cardiologist and were given a window of 2-3 weeks before surgery would happen.
However, Keaton soon developed more problems, starting with infection, and becoming septic. He was transported to Akron Children's Hospital on December 28, 2009 via ambulance. I accompanied him in the ambulance, and stayed the night at the hospital, not knowing what his outlook would be. We just knew he was a very sick baby.
The very next day he had improved, responding to many of the treatments initiated once he arrived at ACH. However, he still had a long road ahead of him. He had good days, with improvements, and not so good days, with conditions that worsened. He was a "critically ill" patient, and their most complex patient in the NICU at the time... requiring a large team of doctors, cardiologist, nurses, and more.
Keaton's twin brother, Brogan, came home with us on December 29, and while enjoying a new baby in the home, it was a bittersweet feeling, knowing that someone was still missing from our family of five. We were making trips daily to spend time with Keaton while continuing to raise our 4 year old, and now a newborn. It was quite a complicated balance and it was difficult to leave Keaton each day, unable to hold him, and love all over him as we'd normally do.
This journal began when Keaton was just days, even just hours, away from open heart surgery. I found myself needing a way to keep friends and family updated, and a therapeutic way to get thoughts out at the same time. This journal developed into an amazing collection of thoughts and updates, leading up to Keaton's heart repair and the miracle we witnessed in his recovery. Some days I updated briefly by cellphone, others at the family center from the hospital.
Keaton is now home with us and life is returning to normal, as normal as it can be with twins! I continue to update Keaton's progress as he continues to deal with the normal struggles of a heart patient (seeing his cardiologist regularly, and receiving occupational therapy).
Thank you to all who have provided the support, prayers, and love that has gotten us all through this experience...
Keaton had a check up with his favorite cardiologist, Dr. Bockoven, this week. They did an echocardiogram to take a look at his his heart is doing as he grows. We always look at his pulmonary arteries for narrowing since they were reattached with only his natural tissue and are stretched more than a normal heart. Those look good, only marginal narrowing but not concerning. We also look at the aorta where the right pulmonary artery was detached during his repair almost three years ago, and the spot where it was removed looked "negligible," meaning no change! That's excellent news, even better than expected by the doctor.
So here's to another year until we return for another look. We give thanks to God for all that he has blessed us with - and the beautiful boy that Keaton is. He brings us such joy :)
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