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Sunday, October 31, 2010


That's the date set for the Glenn. We have a pre-op appointment on the 8th and then on Thursday it's go time.

Happy Halloween everybody! We're off to a concert in the city. Jonah's first Halloween will be a night with his grandma, but next year we can't wait to take him out trick-or-treating!!

Thursday, October 28, 2010

What Would You Do?

After having Jonah home for the last 2 months we have learned quite a bit about his know, the cry that post-Norwood babies with HLHS aren't supposed to do? :) A hungry cry. An overtired cry. A dirty diaper cry. And then there is the the-car-has-stopped-moving cry. I have to say that the last is the worst! Being behind the wheel with Jonah upset in the back seat is more than nerve-racking. The first time this happened to Rob and I, we went into major panic mode because we were stuck in some good old-fashioned Chicago suburb traffic on a Friday night. Since then, we have become more comfortable with Jonah's cry and know his limits. Our panic switch doesn't get flipped that often anymore.

Yesterday, I went out to run a few errands and was on the way to my last stop when I merged on to a pretty busy road in town and came to a screaming halt immediately. As I entered traffic, all I could see before me was a parking lot. Mind is 2:00 in the afternoon. As soon as the car slowed down, Jonah woke up from a little snooze and was in no way happy that we weren't moving. I tried talking to him, singing to him, I rolled down a window to give him some fresh air. I was even able to reach far enough back to offer him his pacifier. But he just wasn't having it. He was fired up! So.....I did what I had to do. I slowly got out of traffic and very carefully drove down the shoulder to get off at the nearest exit. Now, I have to say that I am still getting to know our new community and really wasn't sure when or where that next exit would be. Turns out, it didn't matter anyway. I got pulled over immediately! Jonah is still raging in the back seat when the police officer approaches the car. License-check. Insurance card-check. Then I try to explain to this seemingly cold-hearted cop why I was doing what I was doing. Well, he didn't even take 2 seconds to hear me out before walking away. While he was likely running my info and working on slapping me with a ticket, I got in the backseat to try to calm Jonah down. When the police officer returned, Jonah is still crying and I again try to explain that it is harmful for my son to cry so hard for so long. Then, he hit me with it...a $120 traffic violation and a "have a nice day". That was it. He was walking away again as I spoke. After all that, I still had to get back in gridlock traffic to get home.

Needless to say, this was beyond frustrating. I realize I was taking a risk, but I know that I was still driving safely. Trust me, we have all seen wild-abandoned, reckless drivers with no cops in sight. But here I was, getting a ticket after attempting to de-stress my fragile baby. Go figure. Honestly, I have to say that I would do the exact same thing again if I had to. Is that so wrong?

Monday, October 25, 2010

First Cath

Quick update for every one...
Jonah's first cath went well today.  Our day went something like this:

3:30am  - turn off continuous breast milk feeding, turn on pedialite
5:00am  - turn off pedialite feeding
5:30am  - packing/preparing for possible overnight stay
6:00am  - pulling out of the driveway
6:30am  - checking into Christ
7:30am  - Jonah, 12 weeks and 3 days old, weighs in at 11.2 lbs (albeit with fleece sleeper still on)
8:00am  - go over the details with the cardiologist and anesthesiologist
8:30am  - tearful mom and dad escort their smiling, happy son to the procedure room
9:00am  - breakfast in the cafeteria
10:00am - cardiologist comes back to the waiting room to tell us everything went great
10:30am - relieved mom & dad reunited with their angry, exhausted son in the recovery room
10:31am - kisses and hugs galore
11:00am - swaddled and sleeping - first feeding since 3:30am
12:00pm - still needing some oxygen to keep sats above 70
12:30pm - 3oz bolus feed - keeps it down
2:00pm  - iPad is worth every penny
3:00pm - another bolus feed down the hatch
5:00pm - preparing for discharge
6:30pm - home
7:00pm - Jonah in bed
7:30pm - posting this blog

The next hour's event better be mom and dad in bed.  It's been a long of those days that begins filled with adrenaline and anxiety, but ends in sheer joy and gratefulness.  Jonah's heart is looking awesome!  No need to "balloon" the pulmonary arteries (as can be the case with many pre-Glenn babies); his Sano shunt just had slight, but normal, narrowing; and his aorta, where they placed a bovine patch during the Norwwod, showed no blockage.  In other words, it was the perfect picture we all were praying for.  The only scare was when the cardiologist told us Jonah had a "heart block" during the procedure - which is a spasm of the heart muscle causing irregular rhythm when irritated by the catheter, but it luckily subsided after pulling it back and waiting a few seconds.  The cardiologist finished his report by saying that Jonah could not be any more ready for the 2nd surgery.  The cardiologist fellows will present Jonah's report to Dr. Ilbawi's team on Wednesday...and after that it's just a matter of finding a date on every one's schedule.  We might know the Glenn date on Friday at the earliest, but more likely Monday or Tuesday.  Crazy.  But today was good practice; a real reminder that we have more future trips to the watch our baby being wheeled behind the closed doors to experience unfathomable life-threatening, but ultimately, life-saving operations.

Sunday, October 10, 2010

Long Time, No Talk

Wow, it has been way too long since our last post! Gosh, the days really do seem to go by so fast as I would say we are now starting to figure out a few "patterns" of our new life. Not routines, no schedules, but just some of the things that seem to make time really fly by.

Jonah is still making slow progress on the bottle. We are doing more bolus feeds during the day now to give him the opportunity to feel hungry when we work on it. Also, to avoid getting too comfortable with a full belly 24 hours a day without ever having to try. He is soooo good with the pacifier, and is soooo smart too because as soon as that pacifier comes out and the bottle goes in he lets us know very quickly we aren't going to be able to pull any fast ones on him:)  We are happy to say that he is tolerating the boluses fine...after accepting that slower really is better for him. But this process is work. Every 2-21/2 hours keeps time ticking. After that we are taking advantage of the awake time Jonah has when he is happy and playful...yes, playful!! He is smiling. He is talking to us. He is getting tummy time. He is doing all of the developmental things he should be doing for his age right now.  He tuckers out pretty quick but those moments are so precious and dear to us!! In between work and play with Jonah is fitting in all of the must-do's around the house. Laundry, meals, cleaning, etc. My mom has really been the extra hands that we need to get these things done...THANKS Mom!

My relationship with the home nurse's scale, my nemesis, has officially ended. We no longer need monitoring at home and are only focusing on one weight, one scale at the cardiologists office. Long story, but Jonah had definitely been gaining weight all along and is now up to 9lbs 7oz!!! It's deceiving though, because looking at him and holding him you'd think he has finally hit double digits...but, no dice. The good thing, the only thing that matters, is that he is gaining weight at all.

Jonah had his first appointment at the pediatrician's office and with that came his 2 month vaccinations. I was really worried about the aftermath of these but Jonah handled them just fine and was never irritable or uncomfortable. One thing I am not looking forward to is a monthly injection Jonah will have to get to protect him from RSV. He will need it from Nov-April...yuck. I know it the grand scheme it is not that bad, but still...yuck:( Everyone get their flu shots??

Although we are very conscious of Jonah's exposure to the "elements", he has been able to experience life outside of the doctor's office. He made his first trip to the big city. He's checked out the local farmers market, done a little shopping. He goes to Grandma and Grandpa's quite often. Jonah has cheered on his favorite Minnesota sports teams in his appropriate sporting gear. He has been to church giving all the glory to God. And just yesterday, Jonah went to pick pumpkins with his cousin Nola! Yes, we are all loving life!!

Okay, now for the "big news" (Seinfeld fans anyone?). Jonah will have his first heart catheterization in 2 weeks. This is a diagnostic procedure where they insert a catheter into an artery in his groin and feed it up to the heart to look at pressures and blood flow. This is in preparation for the second surgery, the Glenn. Can you believe it???!!!! We are already getting ready for that! It could be done by the end of Nov. beginning of Dec. Jonah will be intubated, sedated, and observed for 24 hours with the cath. It obviously has its own risks, but we know this is the best way to determine what is going on in there and unfortunately it won't be the only one. Jonah will likely have these done as part of his life-long monitoring. When he had his Echo done Friday, it showed a slight narrowing in his shunt which Dr. Husayni assured us is exactly what starts to happen at this stage. Jonah is growing, the artificial (gortex) shunt does not. We have seen his sats drop a little bit. Low 80's has always been Jonah's normal, now he seems to hang out in the high 70's. His color still looks really good though! He's pink and he's happy...most of the time:)

And last but not least, some pictures from the last few weeks...