March 26, 2009
Today is our son Jake Maxwell Casden’s first birthday and it's been an unbelievable first year. He's had more harrowing experiences than most people ever go through in a lifetime and has made it to this huge milestone no worse for the wear.
Jake was diagnosed with aortic stenosis evolving into Hypoplastic Left Heart Syndrome at 22 weeks gestation. We underwent a fetal cardiac intervention at Boston Children’s Hospital. Jake was born in Boston on March 26th and had a catheterization at six hours old to dilate is aortic valve and create an ASD. Jake had a rough start but with time and medical management, he was able to leave the hospital without needing surgery.
We eased into life at home with the knowledge that at some point surgery to repair or replace his valves and to remove scar tissue from his ventricle was probable. Eating, reflux, and weight gain presented problems, but overall, life was grand. We were so happy to finally have our little boy home.
On the evening of August 3rd, Jake awoke from a nap with an intense cry. When he settled, he just didn’t look right to us so we brought him to the emergency room at Columbia/Presbyterian. An echo showed he was in heart failure. The next day, while awaiting transport to Boston, Jake went into full cardiac arrest. It took thirty minutes of CPR and several defibrillator shocks to get his heart rhythm back to normal. Fortunately no neurological, tissue or organ damage was sustained and we set about on the road to recovery. Another month in the hospital and Jake was able to make the trip to Boston.
On September 9th, coincidentally our wedding anniversary, Jake underwent open-heart surgery at Boston Children’s Hospital for EFE resectioning, aortic and mitral valve repair and an ASD fenestration. There’s been no looking back since!
Today, Jake is absolutely thriving. In January, he turned a corner. At that time, he was barely able to sit supported. Now, just three months later, he’s cruising and climbing! His reflux issues have also subsided and mealtimes have become much less stressful and he is finally starting to gain a little weight. At just about 17 lbs, he is small but mighty and we find it difficult to keep up with his unrelenting energy. He's commando crawling, getting his teeth, babbling, pulling up to standing, cruising and learning more and more each day. He loves his books and toys and can entertain himself for what seems like hours without fussing. All in all, we’d say Jake has quite a normal, not to mention wonderful, life.
As for his parents, well, we’ve learned a lot about who we are and what we’re capable over the past year. Strength and love go a long way but you have to arm yourself with knowledge, too. We’ve learned to believe in the power of science and medicine and to trust doctors who do not always have the answers. And we’ve been inspired to be better people by the remarkable example shown to us by our little fighter.
As we reflect upon the events of the past year, we find it hard to find the words to thank you for the role you’ve played in helping Jake reach this milestone. Sometimes words are not enough; therefore, we have made a donation to the pediatric cardiology programs at both Boston Children’s Hospital and Morgan Stanley Children’s Hospital of New York. Please know that you have played a very important role in this family’s happiness and our gratitude to all involved is unending.
Sincerely,
Amy, Greg, and Jake Casden
We had an awesome party to celebrate with at least fifty people at our new house. It was the first time many of our friends had seen Jake since before his arrest last summer. I was so busy entertaining and showing Jake and the house off that I didn't get too many pictures. Here's a few...
Bad Bug cupcakes decorated by the lovely Laurie Rudnick
Make a wish!
Jake's first taste of sugar!
Cheers!
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