What's New?

See if you can guess what’s new from this picture:

Just in case you need a hint, here is Sam 30 seconds before the above picture was taken:

That’s right! Our boy is off the oxygen. He is Sam, unplugged. The picture above shows the ceremonious moment in which Jason and I simultaneously removed Sam's tender grips. 

It’s amazing to be able to take him up and down the stairs, out on a walk, out in the car, etc. without having to turn his oxygen tank off, disconnect him, turn on the new tank, and reattach him to it. He feels like an entirely different baby, and he looks pretty different, too. As Jason put it, it’s like looking at someone who always wears glasses without their glasses for the first time. I think Sam feels the same way because he spent about 30 minutes staring at his little reflection in the mirror this afternoon.

Aside from our excitement over Sam’s ability to thrive without supplemental oxygen, we are also looking forward to not having to change those awful tender grips on his tender cheeks every few days, not having to pick dried mucus out of his nasal cannula with a toothpick, not having to order oxygen tanks and respiratory supplies, and most of all, not having to start every day by suctioning out his nasal passages. Hurray for freedom!

On a slightly less smiley note, we also wanted everyone to know that Sam’s upcoming heart catheterization has been scheduled for November 21 (the Monday before Thanksgiving). Please send your good thoughts our way because we are really, really hoping this works...even though we know that there is a good chance it won’t. Our little Sam is a tough guy, as we all know, and being proactive with this procedure will hopefully spare him from extra open heart surgeries in the near future.

A little information that's less critical but more fun: Sam is now enjoying the high life…from his new high chair. Here are a few pictures:

He looks so tiny!

Just before his first high chair meal...

...about 60 seconds later. (Those are pureed peas, by the way.)

Thank you for reading the blog and keeping up with us (even when we’re not so great at keeping you updated). I will be sure to post some Halloween pictures next week of our lion-hearted little man. 

Bananas!

Sam has finally ventured into the world of real food! His favorite item on the menu is pureed bananas, which he eats like a voracious little monkey, kicking his chubby little legs excitedly and opening his mouth impatiently. He can eat almost an entire banana in the time period of about 20 minutes. He tries to grab the spoon himself, but he unfailingly sticks it right into his eye.


Our doctor was quite pleased with his weight gain; Sam is now weighing in a little over 16 pounds, which puts him in the 20th percentile! For a cardiac baby, this is especially exciting since gaining weight is often a problem when half of your heart is doing all of the work.

While the doctor was happy with Sam's overall growth, his left pulmonary artery and descending aorta remain small as of this week, and they are perhaps growing even narrower. If they do not improve by the end of October, it looks like Sam will undergo a heart catheterziation in November. While we are not looking forward to this, we are hopeful that it will work and keep Sam from enduring another open heart surgery this year. Clinically, however, Sam looks great! His upper and lower blood pressures are the same, which is apparently very important, and he otherwise continues to thrive.

Aside from the food and the discoveries made at this week's appointment, here is a brief list of Sam's other accomplishments this month:
1. Rolling frequently from stomach to back (and almost from back to stomach, but his arm keeps getting in the way)



2. Discovering his feet
3. Turning pages while being read to
4. Screeching happily and/or angrily
5. Getting upset when I leave the room
6. Noticing when I eat and demanding to be fed at that moment
7. Pivoting himself around in his exersaucer (which he is doing as I type this!)
8. Somehow wriggling himself off his exercise mat onto the carpet. Also, when I come into his room in the morning to get him up, he has rotated himself 180 degrees in the crib and looks quite pleased with himself.

Thanks for reading, and I hope everyone is enjoying a beautiful autumn so far.

A Good Weekend (Followed by a Lukewarm Week)

Sam’s cardiology check-up earlier this week revealed both good news and bad news. The good news: Nothing on his heart echo has changed in the last month. This means that there have been no new growths, no extra valve leakage, nothing new to earn our concern. The bad news: Nothing on his heart echo has changed in the last month. This means that his left pulmonary artery and descending aorta are still too small, and as Sam continues to grow, they will start causing problems if they don't start growing.

The first line of attack to address this problem would be a heart catheterization to try to “pop” the artery open with a balloon. While this is a relatively minor procedure as far as heart procedures go, our doctor doesn’t feel particularly confident that it will work. The second line of attack is much more aggressive: Yet another open heart surgery to “revise” the problematic pieces of his heart. Boo. Neither Jason nor Sam nor I are willing to face this possibility yet, so we are holding onto the hope that Sam’s artery and aorta will grow in the next few months.

On the happier side of things, Sam has made a new friend, and his name is Max!

He is the very cute son of a very close friend of mine, Julie. While both Max and Julie live in San Francisco, they came out to visit us last weekend, and Sam and Max had many adventures. I’m pretty sure that Max, who is a whopping eight months old and an expert roller, is the one who inspired Sam to start rolling. Sam and Max also enjoyed taking turns whining at stoplights as they sat in their side-by-side carseats in the back (until they both fell asleep).

We took them on a walk around Washington Park, and then stopped by Waffle Bros for a little brunch. At Waffle Bros, Sam enjoyed lying on the table (I wasn’t sure what else to do with him while I ate my waffle) while Max enjoyed a little breastfeeding with Julie. It worked out pretty well until Sam kicked his foot into the Nutella on my waffle. As a man walked by us with his baby strapped up in a stroller, he remarked, “Those babies are having a good time!”

We all had a good time. Below is a picture of Sam charming Julie, as well as a picture of me giving cute Max a big kiss.

Sam misses Max, but he still has his old friends to hang out with, including our cat (who has taken up residence in Sam's pack & play). Other news? In addition to his new skill of rolling from belly to back, Sam also likes to spend his spare time babbling, blowing saliva bubbles, and, most importantly, giggling.

Wednesday, August 10, 2011

A Blue Morning

For the first time since we’ve been home from the hospital, we had a somewhat dramatic morning. Jason woke up around 6 am to discover a blue Sam sleeping in his crib. I’m not speaking metaphorically here—Sam was not depressed but physically blue, especially around his mouth and eyes. When Jason hooked him up to the pulse-ox, he found that Sam’s oxygen saturation levels were in the 60s (as you may recall from earlier posts, Sam’s O2 level is supposed to be at least 75, preferably in the 80s).

Before you start to feel as panicked (as we did), let me assure you that right now, Sam is pink and snoring happily away in his vibrating chair. To make a long story short, we think that Sam’s upstairs oxygen equipment failed last night. He has an oxygen generator upstairs in his bedroom and a regular tank downstairs, and within 30 minutes of switching him from his upstairs to his downstairs oxygen, his sats perked up to the high 70s. Unfortunately, he was probably satting in the 60s all night, so it took him a little while to recover this morning. We called his cardiologist, and she said that as long as sats remain stable on the downstairs equipment, we don’t need to bring him in.

On the happier side of things, Sam has made some good progress this week with his oxygen (last night disregarded). For the first time, I was able to lower his oxygen yesterday to 1/8th of a liter, and his sats remained stable in the low 80s! This is significant because our doctor thinks that we if can get him to 1/8th of a liter, we may be able to increase one of his medications and take him off the oxygen altogether.

While the oxygen may not seem like a huge deal compared to everything else he’s been through, it seems to become a heavier and heavier weight each day to all three of us. It causes Sam significant nasal congestion, which upsets him and, ironically, prevents him from getting the oxygen he needs. When we suction him out daily, he screams his head off and his nose usually starts to bleed. But if we don’t suction him, his sats drop to the 60s because he can’t breathe properly. It’s a bit of a double-edged sword.

Also, while I know that Sam won’t remember any of this, I still worry about the effects of his being on a "leash." I keep thinking about how they train circus elephants by keeping them on short leashes when they’re babies; that way, when they grow up to be gigantic, they remain tractable and submissive because they don’t realize that they are actually far more powerful than the rope that tethers them. In other words, I don’t Sam to sense on any level that he is tethered. Hopefully, within the next few weeks we’ll be able to get rid of the oxygen leash, and by the time Sam figures out how to get mobile, he’ll be able to crawl as far away from the oxygen tank as he pleases.

In the meantime, here is a video Jason took two weeks ago of Sam trying to figure how to grab things. Enjoy!

Monday, August 1, 2011

Hello all! It's been a long time since I've posted and I feel a bit out of the groove...been too busy enjoying being a teacher on summer vacation, I guess.

Regardless, let's start here...I went to a friend's wedding this weekend and had such a good time. In their speeches, the bride and groom were so thankful for the presence of their family and friends, and I was reminded how important that can be during the significant moments of your life. So, as I have often done in the past, and will continue to do in the future, I should tell you all how thankful Kristin and I (and Sam too!) continue to be to have you all in our lives. Thank you again. And props to my friend Andy, who came to visit and brought some cyberfriends along via facebook. Pretty cool to see a note from Streeter.

Moving right along, we had a clinic visit last week with both neurology and cardiology. And I'm happy to report that both went pretty well on the whole. Neurology feels good that Sam is recovering well from his stroke. They do not feel like he should wean from his seizure meds just yet, but they are encouraged that he seems to be using his left hand (the site of his seizures) nearly as much as his right. At home we're enjoying seeing Sam become more and more coordinated. He's able to lift his head during tummy time and he's getting better at using his hands to grab things. Of course, that also means he can grab his G-tube, which I predict will be forcibly (if accidentally) removed by Mr. Sam himself within the next month.

Cardiology is also encouraged. Sam's heart echo looks improved, so we have yet again postponed the catheterization that Sam will eventually need to decide whether his left pulmonary artery is being overly compressed. At present, any compression does not seem to be affecting his clinical status, and as a rule, if it ain't broke, don't fix it. So that plan is on hold for the time being. Also, we are in the process of weaning meds and finally oxygen! Hopefully by our next clinic visit (about 3-4 weeks from now) Sam will only be on 4 meds and will be ready to give up the nasal cannula in exchange for his simple, natural cuteness.

Sadly, his slated first day off the oxygen is my first day back to class with students. I won't be able to go to that clinic because I'll be in class, so I'll have to wait until after school and golf practice before I get to see his pristine little baby face. Pardon the self-indulgent whining, but Kristin and I have both been home with Sam all summer and have gotten into a pretty good rhythm. It will be hard to go back to work. And what will happen when I'm out of the house for 12-14 hours a day during golf season? I guess you could say we're apprehensive. Still the answer to the burning question: "How's Sam?" is still a good one. "All considered, he's about as well as we could hope for."

Here are some recent photos to enjoy:

Sam with "Uncle" Andy. He knew Andy was in town for a concert, so dressed in his rockin' best; check out that t-shirt!










Sam sitting in a Bumbo, learning to hold his head up and spending quality time with Wubbie.























Also quality time with daddy.






















And finally, some mommy love. I mean, seriously, how cute is that kid?! It's just gross.

Thursday, July 14, 2011

Our Happy, Fat Little Baby

After going two and a half weeks without a doctor’s appointment, Jason, Sam and I became human again! We decided that it was time for Sam to get out and experience the world...in a relatively germ-free way, of course. Sam has attended Fourth of July and birthday parties. He’s been grocery shopping, Babies R’Us shopping, and out to dinner. He’s been to the pool, but not in the pool, and I am slightly embarrassed to share with you that Sam’s first movie was Bad Teacher. Luckily, he slept through most of it, as did much of the audience.

Our leash to Children’s Hospital is a little longer now that Sam has undergone the Glenn (his second surgery); instead of going to a 5-hour high risk clinic every week, we now go to a normal, 2-3 hour outpatient appointment every two weeks. And to be honest, much of those 2-3 hours is spent socializing with the doctors, nurses, clinical assistants, and custodial workers that formed our hospital family for the eleven weeks that we lived there. Our most recent appointment was on Monday, and when we went up to visit the Cardiac Progressive Unit, Sam was immediately surrounded by such a large flock of hospital workers that I wondered who was taking care of the actual patients on that floor.

According to our pediatric cardiologist, Sam has now earned a degree of “fame” at Children’s Hospital, so he has several sets of eyes examining each of his echoes. And while nobody really wants his or her child to be "famous" for uniquely challenging illnesses at a children's hospital, I’m happy to report that all eyes were pretty satisfied with his echoes this time around. As of Monday, there is nothing new or “remarkable” or “impressive” to report, which is a good thing in doctor lingo. All looks the same as or better than it did two weeks ago! Most notably, Sam’s oxygen levels are rising, which means that we can start the process of weaning his oxygen a little.

Actually, the doctor’s only complaint is that Sam is slightly overweight! I am apparently overfeeding him a little. He’s fine right now, but if he continues on this growth curve, he could be on the track towards obesity—one medical issue that Sam certainly doesn’t need added to the mix. When we took Sam upstairs to say hi to his girlfriends, the nurses laughed at the notion of Sam being chubby. They said that it was a “problem” they welcomed, and one that is pretty rare for cardiac babies. I have since lovingly nicknamed him “Chunky Monkey,” “Chubby Bubby,” and “Chubs.”

Despite his multiple surgeries, Sam is luckily still hitting his development milestones. He is starting to reach for things, grasp them, and bring them to his mouth. Unfortunately, his favorite item to do this with is his nasal cannula; at least 50 times today, I looked over to find Sam looking like a happy baby vampire with the two prongs of his nasal cannula tucked under his upper lip.

His neck strength continues to build, as does his ability to bear weight through his arms and legs, and he’s able to eat more and more by mouth. Perhaps, a bit too much…

Still, he's a happy little guy.

Monday, July 4, 2011

Happy 4th of July!

So evidently, we will only be posting on national holidays now...next update: Labor Day!

Ok, just kidding, but it does kind of feel that way, doesn't it? It's just that, being home, our free time (what little there is) is now being directed to doing things other than the blog. You know, like going out to dinner occasionally, getting back involved in my golf league (btw this is Jason), exercising, catching up on TV shows. No joke, we literally watched last season's Survivor finale three days ago. I guess when we have the chance to be "real" human beings instead of being locked up in the hospital, we take it.

In the meantime, here's a micro-update and a few pictures of the little guy. As of Sam's last clinic appointment, he looked, in the words of our cardiologist, "great!" No return of infection! He's growing well, and continuing to strengthen his body and his ability to feed. Not to say he's perfect, but he does seem to be happy at home and remains a very smiley little guy. Here are a few photos of our summer.

Here's Sam with Grandpa Kakos and Mugga. Mugga painted some fun things in Sam's nursery; I'll try to post pictures of the nursery soon.


More recently, my Dad came into town. Sad that he couldn't hold Sam the first time he came to visit (just before and after the very first surgery), Grandpa Leclaire swooped him up within seconds of arriving on a summer visit.


And my step-mom, Miss Marge, got to hang out with him too.

Wishing all of you a happy and healthy 4th. We're going to a BBQ with some friends but will make sure to keep our oxygenated son away from fireworks!

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