Wednesday, August 29, 2012
Monday, April 11, 2011
Thursday, January 20, 2011
Jake's favorite book is What do People Do All Day by Richard Scarry. The book is a classic, but just in case you haven't read it, its a collection of little stories about daily life in Busytown. The book has stories like "The New Road", "A Trip to the Hospital" and Jake's personal favorite, "The train trip".
Jake stayed home from school yesterday (pink eye, again) and when I came home we played out our own version of what do people do all day.
"Jake, did you have a good day with Daddy!"
"Yeah, Mommy had to leave today"
"Do you know where mommy goes when she leaves everyday?"
"Ummmm to work".
"That's right! And do you know what I do at work?"
"I make books!"
Jake was very excited to hear this and gave me a huge grin. Later at dinner I wanted to see if he'd remember what I told him.
"Jake, what does mommy do all day?"
"And what does Daddy do?"
Now, I dunno about other kids, but Jake must feel pretty special knowing his parents work on two of his favorite things all day: books and cars! Can't get much cooler than that!
Tuesday, December 7, 2010
Jake (as the furnace kicks on): That's the washing machine.
Mom and Dad: No, that's the heater.
Jake: No, that's the washing machine.
Mom and Dad: No, that's the heater.
Jake (matter-of-factly): That's the washing machine.
Mom and Dad: OK, it's the washing machine.
While making dinner:
Jake: That's salmon
Dad: No, that's tuna.
Jake: No, that's salmon.
Dad: Ok, Jake, it's salmon.
Jake: That's a lemon.
Dad: No, Jake, that's a lime.
Jake: No, that's a lemon.
Jake (as the furnace kicks on): That's the washing machine
Mom and Dad: No, that's the heater
Jake: No, it's the washing machine.
Mom and Dad: (sigh)
Friday, January 1, 2010
The three hospitals I donated to have all played a role in saving Jake's life:
Boston Children's Hospital Advanced Fetal Care Center - designated for Fetal Cardiac Intervention Program
Morgan Stanley Children's Hospital of New York Pediatric Cardiology Program
Schneider's Children's Hospital Pediatric Cardiology Program
And the organization that helps families who find themselves in the situation we were in so many months ago:
The Ellianna Grace Foundation
It's easy to get into ruts, and I've been in one for several months now. Going through something traumatic is tough enough, but picking up the pieces of your mind, body, soul and spirit, when you've passed that "if we can just make it through" part and life returns to normal has been tough. It's the everyday challenges that get to me, the effort it takes just to wake up and get out of the house each day.
I know I should be thankful for every moment, considering what we've been through, and believe me I am. I just wish someone told me how difficult everyday life would be once you've made it through hell, when things are good and you have to go back to normal.
So I've been depressed, unmotivated and zapped of energy. I'm working on it, though, and resolve to spend some time doing something I love: writing about my little bundle of joy. And hopefully that will help to get me out of this rut...
Monday, November 9, 2009
It's always nice to see Dr. Tworetzky. He just has a way at putting us at ease. Jake certainly seems relaxed with him.
Dr. T. had two fellows with him who were interested in the fetal intervention and we got a pretty thorough update on it from his explanations to them. Jake was the 14th two ventricular birth in some 5 years of doing the FI. They now have 20 successes. I'd say they're getting better at doing it and that number of successes is due to increase steeply as they do more and more FIs.
Dr. T. illustrated some key things that they learned specifically from Jake's case, including that they need to give these baby's time for their heart function to improve. We were just about ready to have the Stage 1 Norwood surgery which would have joined Jake's ventricles, giving him the traditional HLHS anatomy. However, that plan was thwarted when he came down with Sepsis (a blood infection) in the ICU. We needed to wait until the infection ran it's course and the antibiotics did their work before he could have surgery. Fortunately, by the time that happened, his left ventricle was pumping enough blood to indicate that it might be ok without the HLHS surgery. However, we would be back for the EFE surgery (see early posts).
Hearing Dr. T. explain Jake's case to these traveling fellows drove home the point that this treatment is still so new, so cutting edge, that they don't even have enough experience or successes to predict outcomes. This is trailblazing medicine and we are on the front lines with them.
But I digress...
Jake went to sleep for his echo, thanks to the sedative, so that they could get the most accurate pictures of his heart possible.
We stayed at the Yawkey House - which is kind of like a Ronald McDonald house for families. It was nicer than most bed and breakfasts we've stayed at. We were also fortunate to run into Mary Beth and Anne Louise Atherton, Jake's roommates in the step down unit from his first hospital stay.
All in all, it was a good trip. Jake's heart has stayed stable since his catheterization from February 09 and we will not need to return to Boston for another cath in 6 months. We are so relieved and as long as everything stays stable, we can count on being home for a nice long while.
Monday, June 15, 2009
Reason: Removal of binky.
So we've decided once and for all to ban the binky. I know many may think that's a little harsh, that he's only 14 months and still needs it, and why don't we just relegate it to use only at bedtime. I agree one hundred percent. However, when both our pediatrician and cardiologist suggested that the binky may be related to a slight behavioral problem we have been experiencing, it was enough to convince us once and for all to ban the binky for good.
What behavioral issues could be caused by a binky? Try breath-holding spells. What is a a breath-holding spell? According to Wikipedia, breath holding spells are the occurrence of episodic apnea in children, possibly associated with loss of consciousness, and changes in postural tone that occur in 5% of the population. Basically, Jake wakes up in the middle of the night, sits up and begins to cry inconsolably, we rush in and pick him up, he cries so hard he can't catch his breath, he passes out, goes into a "seizure-posture", and looses consciousness for up to a minute. He's had about 15 of these such episodes since March. The episodes are terrifying and the hardest part is that they are benign. Despite that they have still resulted in me performing CPR, calling 911, and spending 3 days in the hospital.
When these episodes started to increase in frequency, our cardiologist became even more convinced that these were behavioral. She instructed us to put Jake back into his own room (we practically were sleeping in shifts with Jake in between us), and when he woke up crying, not to do anything. You mean like not even go into his room to make sure he's OK? I asked. Nothing.
It was incredibly difficult to stomach, but like clockwork, Jake woke up crying at 4am. Greg and I hovered outside his door, wringing our hands with concern and peaking through the open crack. Sure enough, when neither of came in to settle him, he lay back down and went to sleep. Amazing!
So problem solved, right? Wrong. It's incredibly hard not to run to your child when they are crying, regardless of the cause. So somewhere along the way, we started running back into his room to stick the binky in his mouth as soon as we heard a peep. It was a gradual progression but a few short weeks later he was back to his breath holding episodes again.
This time, our pediatrician concurred. Get rid of the binky. So here we are again, though this time we're sticking to our guns. So far, it kinda sucks, but as I finish typing I hear the cries softening and am hopeful that as I peak in, he will be sound asleep and stay that way until morning.
Jake and Binky: A History
Tuesday, June 9, 2009
I can't believe I'm sitting Face
I'm in the tub and having fun Face
Whoa! Weee! Face
I blink for pictures Face
Please stop taking my picture Face
I'm the man Face
Wednesday, June 3, 2009
Luckily the rain has stayed away on the weekends and we're spending tons of time enjoying our new yard. Jake seems to enjoy it, as long as a blanket is underfoot. He's not quite sure what to do with this thing we call grass, besides rip it up and stick it in his mouth, but then he does that with everything. Here's some pictures from his first outing.
Monday, May 25, 2009
Greg's brother's good friend Lee Shufro had a baby about a week or so before us. His name... Jake Maxwell. Fortunately, we didn't find this out until after Jake was born, not that we would change the name we had picked out for months. Jake got a chance to meet the other Jake Maxwell at his cousin Nicky's 3rd birthday party. I don't think either one was too phased by sharing a name.
Monday, May 4, 2009
Sunday, April 19, 2009
Jake was flush with presents for his birthday, too. Check him out on his new ride-on toys:
A new hot-rod from mom and dad.
And a "Race Day" ride-on from Cousin Nicky and his parents
Jake loves to ride around on both of them!
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.
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!