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.

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!

Happy Father's Day!

It’s Jason’s first Father’s Day, and I’d like to take a moment to thank him for a few little things that make a big difference to me:

1. When Sam screeches every time I attempt to transfer him from my arms to the crib (usually around midnight), Jason somehow magically gets him to go to sleep while I get to pass out in our bed. This is why Jason has nicknamed himself "The Sam Whisperer."

2. Jason is the one who gets up for Sam’s 6 am meds and bottle each morning so that I can sleep in a little. And he almost never complains about it.

3. Jason stays up each night to pull and label Sam’s meds for the next day. This is a precise and time-consuming process, and it saves me a lot of time and stress the next day. Jason is also the ones who cleans all the syringes, and we go through at least 15 a day.

4. No matter how tired and grumpy he is, Jason is always all-smiles when it comes to Sam. When Jason picks up a sleepy and somewhat grouchy Sam, both of their faces light up when Sam realizes he's being held by his daddy.

5. Even when I’m exhausted and half asleep, Jason makes me stand up to hug him. He always sees that we make time for each other, reminding me that no matter how much energy we spend on Sam, our marriage comes first.

Happy Father’s Day, babe! Sam is one lucky little guy.

We're HOME!

A quick post from Kristin:

First, Jason and I apologize for the long, long, long delay in updating the blog. As always, we thank you for keeping us in your thoughts.

Things have been a little crazy since we left the hospital For the first two days that we were home, we had no less than ELEVEN different medication times per day for our little Sam the man, including midnight, 3 am, 4:30 am, and 6 am. In fact, as I sit here typing this blog, the midnight alarm on my phone is reminding me that it's time for Sam's sildenaphil. I'll return in one moment...

Luckily, we have now consolidated his medicine times to 6 am, 9 am, 12 pm, 6 pm, 9 pm, and midnight. And the best news is....we no longer have to give Sam his IV antibiotics! Having to access your son's central line three times a day is stressful, and I'm glad that part is (hopefully) over.

Sam seems to be enjoying the good life at home. Except for a little crankiness due to nasal cannula congestion, he's a pretty happy camper. He made it through his second pediatrician's appointment today without crying, and he enjoyed an outing to our friend's house. Since he didn't really nap much today, just now I was able to give him his meds, carry him upstairs, change his diaper, and reswaddle him without waking him up. He's a cute little guy.

My favorite thing to do now that Sam's home? I like to pick him up in the morning, blanket and all, and cuddle him in the rocking chair before he wakes up. That way, when he opens his eyes, it's not because he's being weighed or poked with needle or having a thermometer stuck in his armpit (all necessary and important things to do in the hopsital, but not the most pleasant way to wake up). Instead, he's in my arms, and as soon as he blinks himself awake, he looks up at me with bright eyes and one of his big, toothless smiles. It's my favorite moment of the day.

Anyways, my brain is sleepy and incapable of deep, meaningful thoughts right now, but I can say that it all boils down this: I don't care if I have to get up every fifteen minutes to adminster some kind of medication to Sam. It's worth all of it and more to have him home.

iSam

A post from Kristin!

Jason and I received a text from our great friend Jeff today that read, "Can we get a picture and update on Sam. Please." Note that the grammar makes this more of a command than a question, so we shall happily and apologetically comply. :)

The little guy has endured a tough post-surgery week! The good news: He appears to be stable, and if the missing vegetation is still lurking inside his little body, it's hiding itself quite well. One of the nurse practitioners who works closely with Dr. Jaggers, our surgeon, joked to him, "Guess what? I found Sam's vegetation right here in my pocket!" Also, Dr. Jaggers, a serious man of few words, apparently made up the word "vegectomy" to describe what he did to Sam's heart (according to the nurses, he even giggled a little at his own joke).

The not-so-great news: Sam is not a happy camper here at Camp Cardiac. He is, in fact, wearing his grumpy pants, and understandably so. Apparently, the Glenn surgery reroutes his circulatory system in a way that leaves him with a painful high pressure headache for a couple of weeks. Just as he did after his Norwood, Sam cries out in pain every time he sneezes or coughs because it irritates his healing sternum and his fresh chest incision. Also, he's constipated. It probably doesn't help that Sam is officially off the pain killers. Lastly, because Sam is far younger than most Glenn patients, he needs oxygen to keep his sats stable, and he spends most of his time trying to use his socked and swaddled little hands to pry the nasal canula off his face. It's on high flow right now, which apparently is the equivalent of sticking your head outside the car window at 70 miles per hour. No fun for our little Sam right now.

While we don't expect to see many smiles from Sam in the near distant future, we have found one thing that offers him consolation: My iPod. He loves it. Here's how we soothe him when he's at his crankiest: I play a song while I hold the brightly lit screen in front of him. While I sing along, I pat his tush to the beat of the song. He gazes into the screen until his puffy eyelids start to droop, and his mouth falls open a little as breathes himself into a deep sleep. His favorite song? It's "I Want It That Way," by the Backstreet Boys. I'm not sure if its the soft tune, the intellectually complex lyrics, or the screen image of the Backstreet Boys in their white leisure suits, but it's his favorite by a landslide (click here to enjoy the song and video--go ahead, treat yourself).

Here's one more picture of Sam enjoying his new hobby. And hopefully, we'll have some new smiling pictures to show you soon.

A Little Good News...

So here is the extended update from yesterday...

When Sam came out of surgery the two main concerns were: where did the vegetation go?! and why was the blood flow on the right side of his head less than half of what it was on the left? The original theory was that these two phenomena were related: possibly the vegetation had gone to an artery in his brain blocking blood flow. Very scary! Now--before you panic--that is no longer the theory.

Thanks to some sleuthing by my wife and me, the mystery of the weird blood flow was solved. The sensors measuring such information turned out to be faulty. So, when we asked to have new sensors around 11:30 last night, Sam seemed healed; all of a sudden the numbers looked like they were supposed to! Also, this morning, we were informed that our surgeon did indeed open up the heart-lung bypass machine to look at the filters after the surgery, and sure enough, they found some mucous-y, fibrinous stuff. There are no guarantees that this is the same vegetation that had been next to the tricuspid valve, but Occam's razor would suggest that it is.

As of yet, Sam has not shown any evidence of massive strokes; he is moving all four extremities and breathing well on his own. Plus the blood cultures and other tests for infections have so far turned up negative. So...we're hoping that we finally got that little good luck we needed. Of course, we'll immediately turn around and ask for more, but we are definitely more encouraged than we were yesterday afternoon. Guardedly so, perhaps, but optimistic.

Until tomorrow, more Sam photos!

A rather poignant picture of my wife with Sam the morning before his surgery. He tried to hide behind the book, but alas...he wasn't quick enough to avoid the clutches of the surgeons.

My turn!

Check out that scar; we call him Franken-baby! Okay, we actually don't but we should.

Just a few minutes ago...much more comfortable without a ventilator. Little Wolfman got extubated this morning.

Surgery! (micro-update pt. 4)

So...in true Jaggersian fashion, our surgeon (Dr. Jaggers) just spoke to us and was only partially reassuring.

The surgery is now finished, and Sam is headed to the CICU for recovery. The Glenn portion of the surgery is over and looks pretty good; however, there is one tiny snafu...the vegetation next to his tricuspid valve has gone missing! Where is it? Nobody knows! If it left the heart, that means it went somewhere else in the body; possibilities include the extremities, the gastrointestinal tract, the lungs, or the brain. The brain would be the worst-case scenario. There is some concern that it went there because the oxygen saturation levels on the right side of his head were somewhat low. Now (of course!) that may mean nothing--lots of possible causes.

On the positive side, there are cannulas inserted into the heart to provide suction during the procedure; it is also possible that once the vegetation came loose, the tricuspid weed got sucked up by a cannula. That would be best-case scenario. And bless our friend, Anne, who actually managed to make us laugh by saying, "It sounds like a bad student essay: 'The Machine Ate My Blood Clot!'" You have no idea how close I was to using that as a title for this post.

As far as where we go from here, Sam is now back in his CICU room, and we are not allowed back yet. We hope to see him soon! Only time will show what happened to the rogue vegetation. We are hoping that (for once!) Sam will do what he is supposed to and respond favorably to the surgery.

You'll know more as we do...