Thursday, March 31, 2011


Today was such a busy day for all three of us...

On the one hand, I don't know where to begin; on the other, I have little energy left to type this tonight. How about a simple list?

1. Sam was entirely off of oxygen for 6+ hours yesterday!
2. Sam started breast feeding a little bit. In some ways it's making his feeds more complicated. Because it's nigh impossible to measure how much he takes directly, it's very difficult to figure out how much more he needs. If you guess wrong, he goes hungry or overflows. Today, he overflowed. All over our friend, Anne. All over everything. Repeatedly. Yesterday poop; today, vomit. Ahh, parenthood. I'll dramatize the episode one of these days, but not tonight. Hopefully we'll be able to figure this out in the morning.
3. LOTS of visitors today. No fewer than five people from the outside world came to hang out with Wolfie and us. Very nice.

4. Insurance woes: the energy suck that results from dealing with bureaucracies largely accounts for why there was no post yesterday. Details later. Tomorrow, perhaps. Suffice it to say, the company is willing to pay for the $540,000 surgery and convalescence but not for a necessary monitor to take home once we're discharged. Evidently the $300/month will break their bank. We've had upwards of 20 personal visits or phone calls in re this subject in the last 36 hours.
5. On the bright side, Samuel discovered today that he makes a really cute stegosaurus.

6. Finally, a note on the title of today's post...
Many of you will remember why hope is particularly important to Kristin and me. As noted in the first post of this blog, we named our little baby girl Hope. She had triploidy and was born after just over 20 weeks. She had no chance to live. And though her death hurt us, we held on to hope nonetheless; if we hadn't...I don't even know how to finish that thought. Switching gears. In The Shawshank Redemption Andy Dufresne (Tim Robbins) says, "Hope is a good thing, maybe the best of things." That hope has been rewarded with not only having Wolfie in the first place but also his rapid and impressive progress from CICU to CPCU. Today's gastric revolution and voluminous puking aside, my wife and I really could not ask for much more from the little man. In spite of the severity of his disease, Kristin and I feel lucky. And hopeful. Which returns us to the title of this post. As evidenced by numerous comments and responses on this blog, Samuel is not the only child who has ever had or ever will have HLHS. There is another family here whose baby has the same disease. This baby has been struggling. This baby has been in the CICU upwards of 45 days with few signs of an imminent move. Sam was only there for 12. We are lucky. That said, if it's not too much to ask, those of you who are following, add one more child to your thoughts or prayers tonight. He and his family could use a little hope, too.

That's all. I'm spent. Guess the list wasn't so simple after all. As always, much love and appreciation to all of you.

Oh, I almost forgot...the mother of the child I mentioned above? Esperanza!

Tuesday, March 29, 2011

A Night in "the CP"

My wife will probably be mad at me when she reads this, because she's going to blame me for stealing all the good stuff that she had planned on writing about. She's sleeping, however, so phlbbth!

We began the day wondering about the phenomenon of the CICU time warp; it feels like we don't do anything all day yet are constantly busy. Paradox much? I'm not quite sure how it happens, but it's true. My best idea is that the days are full of several tiny events, each of which may be individually inconsequential, yet collectively demand all of our attention and time. Here's an example. This morning little Wolfie looked something like Two-Face from The Dark Knight. See how the right side of his face is all dark? Well, it went all down his chest as well! I admit I was startled. Yet upon further research (read: ask the doctors), I found out that he simply had "harlequin color change," a harmless, self-resolving condition in which a baby's color on half of his or her body will turn darker than the other half depending on which side is down. It's completely harmless and will go away soon, which makes it actually kind of cool. (Ed note: be wary of researching this harlequin thing on your own. Seriously. I'm not kidding.)

Later, Samuel got a bath. So cute! And he seems to be really enjoying it.

Oh...almost forgot. Some friends were asking about the Tide reference in the last post. To clarify, Kristin did not go home or do laundry; she did leave the hospital, though, because she was desperate for clean clothes. I, for one, am thrilled she took a much-needed break. At any rate, she went to Sports Authority and shopped for a couple of hours, buying some new, non-maternity walking/running gear. Here, our friend, AT, celebrates Kristin's pilgrimage by sniffing her new Nike's. Why? I have no idea.

In more important and relevant news, Sam was sent upstairs to the CPCU today! Hooray! We're now on the 9th floor and have a private room with a private bath. Hooray! Also, we can have more than one guest at a time, so if people want to come visit, give us a call. This is big time. It means he's doing well enough that we may be able to go home soon (knock on wood...). At this point, the doctors are still "tweaking" his air flow and his meds as well as trying to get him to feed independently of his NG (nasogastric) tube. Tomorrow, they will start "bolus" feeding rather than continuous feeding in hopes that he will be hungry enough between boluses to try feeding without a tube. The sooner he does that, the sooner we go home. Hooray!

Finally, just wanted to give a shout out to Jax, our overnight CPCU nurse. While we were excited to be moved up to the less critical ward, we were a bit concerned because we didn't know how much one-on-one attention Sam would be getting. Luckily, though Jax normally works in "the CI," tonight she was floated and randomly assigned to us. We felt much more comfortable because she and Sam are kind of going steady now, and we knew she would take great care of him and us. Sure enough, we could not have needed her more. The faint of heart should stop reading here...good night! Sleep well!

Okay, the rest of you. So one of the goals of "the CP" is that parents start to participate more directly in their child's care. Kristin and I interpreted that to mean "diaper duty." As the clock struck 10, the smell of something nefarious crept into our nostrils. We knew it was time, and we were ready for action. Kristin stood on one side of the crib; I took the other. She with wiping cloths, me with fresh Pampers. We managed to wrangle him out of the bottom half of his onesie. Thank goodness for front snaps! I placed the new diaper underneath his butt before removing the old one as I had seen the nurses do...just in case the fresh air caused a new rain shower. I tentatively untaped each side and found gold. I pulled the old diaper out and held up the front of the new one as a shield in case he was ready for Round 2. Sure enough, after only a couple of passes of cleaning his bottom, it became clear that more was on the way... Ka-boom! Explosive, chocolate-brown baby poop came frothing out onto the new diaper. No problem. That's why I put it there in the first place. But since it hadn't been fastened yet, it started dripping onto his nice new blanket. Kristin shouted, "He's peeing, too!" That got all over his onesie. I calmly suggested, "Hit the call button for the nurse." To which she replied, "No way. Not for a simple diaper change." By the time old Samuel soiled the third new diaper and every piece of linen within five feet of his tuckus, Kristin and I were laughing hysterically. Just then, Sam's savior, Jax barged in. She asked, "I heard him screaming, watched his heart rate shoot up on the monitor, and heard you guys laughing. What is going on in here?!" Perhaps it was the sight of multiple diapers on the counter in his crib on the floor...but it didn't take her long to figure it out. Kristin and I couldn't breathe from laughing at our own incompetence, and sure enough Jax had everything under control in about 45 seconds. In appreciation, Sam got on the internet and used jibjab to write her a thank you card. It is the last picture of the night. Enjoy.

Monday, March 28, 2011

Thanks for the LittleThings

Jason talking (you can tell by the ellipses, my favorite punctuation).

Looking back over the last few posts and preparing to write today's update, I find that the drama level seems to have substantially diminished (a very good thing!). So rather than build up a grand story line, I'd like to take time today to send a number of thank you's, mostly for little things that seem huge today...

1. Riete and the "strange lady from Oklahoma [self-titled]": I've been meaning to thank you for so loyally following Wolfie's progress and offering consistent good thoughts and encouragement. I don't mean to suggest that we're not blessed with great friends and family who haven't done the same--they have!--but it's like a snow day: you love Spring Break, but what's better than an unlooked-for day off? So, thank you for the unexpected support.

2. The Rhee's, Medha, and all the IB kids and CTHS people who've been so kind to us: You really didn't have to do any of it. That said, Kristin and I appreciate it; by the way, the home-cooked soup was awesome: curry chicken, coconut milk, much better than cafeteria fare, and my wife would like the recipe. Really. Please send it to us. :) This is Medha visiting the little guy.

3. Clothes. a) It's a good thing we got a few copies of this particular onesy (onesie?) because Sam pooped all over it. See his little pirate look below? I think he was planning it all along. b) Remember those Tide commercials after Hurricane Katrina? The ones where refugees who'd lost their houses and everything in them were thanking Tide for clean clothes? I used to think the commercials were stupid. But getting clean clothes got Kristin out of the hospital today, and she seemed to feel more human afterward. Maybe there's something to this clean clothes thing after all...

4. Next, Lisa: Thank you for the hotel room! King-sized bed. No beeping alarms. Dark. Awesome. Now if I can just get Kristin to go with me for a few hours...

5. Baby steps in Wolfie's journey home: a) The doctors removed his arterial line today. That means fewer drugs being administered and the closer we are to the Cardiac Progressive Care Unit (CPCU). b) The docs also started weaning him from his oxygen flow. He is receiving 37.5% of what he was getting two days ago. Again, one step closer...c) Samuel still has some tachypnea, but it seems to be a bit less of a problem than it has been. Today, the doctors called him "comfortably tachypneic." Sounds like a bad Pink Floyd cover band. Either way, he's moving in the right direction. d) And finally, this little video is totally out of context, but I thought it was cute, so enjoy. More news and more ellipses tomorrow...

Sunday, March 27, 2011

And the Feeding Issues Begin!

An update from Kristin:

Well, they warned us that feeding issues were the most common post-surgical complication with the Norwood, but a part of me was secretly hoping that little Sam would be the first Norwood baby ever to sail through recovery without a single feeding problem. As you can probably see by the title of this blog, however, I was wrong.

Sam fussed through most of the night, and I just had a feeling that his little stomach was bothering him. Sure enough, first thing this morning he threw up some breastmilk along with his NG tube. Sam-style, he accomplished this right when the doctors were rounding and raving about how wonderfully he was doing. They had actually just finished discussing how he should be able to switch to oral feeding very soon, but once he threw up his NG tube, that plan was quickly replaced with a different one: give Sam an NG tube that goes directly into his intestines instead of just his stomach. They figured that the high-pressure air flow he has been receiving through his nose has been filling his stomach with air, and the NG tube has been filling his stomach with food, thus leading to a very grouchy and uncomfortable little fellow.

Nor did he enjoy having the NG tube shoved into intestines. In fact, he somehow managed to snort the entire thing out (all the way from his intestines--he's a determined little boy!), so when they reinserted it, they had to tape it down to his face very thoroughly.

Side note: Dr. Jaggers, Sam's brilliant heart surgeon and a man of few words, examined Sam's belly, looked at multiple charts and x-rays, and declared, "This boy has a gassy tummy." I guess as far as complications go, this one is pretty manageable.

Thankfully, the deeper NG tube has made him feel better, but it does set us back a little. His ticket out of here is feeding orally, and now he's a bit further away from that. When I asked the doctor how long she thought it would take to get him feeding orally, she pointed her finger at Sam and said, "He gets to decide. For some babies, it takes three days, and for others, it takes three weeks." The thought of three more weeks in the CICU made me panic slightly, so I decided to take a walk to Caribou Coffee and pretend to be a normal human for a little while. It was nice.

When I came back, our nurse decided that it was high time for Sam to be a normal human as well, so she gave him a bath, which you can see him deeply enjoying here:

...and dressed him in real clothes for the first time! He is officially no longer a nudist. Note the monkey feet:

Also, Sam had the pleasure of being held by several visitors on Saturday, and here are some pictures from their visits. If anyone else would like to come snuggle this little one, please come by. Enjoy!

Saturday, March 26, 2011

Dull is Good

No news today. Sorry, Kristin and I spent hours and hours doing nothing particular and somehow forgot to post. There were no significant medical changes today. Samuel continues to improve. We (and a couple of visitors) got to hold him for several hours. Sam and I just finished watching "How to Train Your Dragon." Kristin kept telling us to turn it down. It was a lovely day full of nothing much. I'll remember to post a couple of pictures tomorrow. In the meantime, Happy Spring Break CT; call me if you'd like to come visit. And good night. Here's to more dull days just like this one!

Friday, March 25, 2011

Return of the White Ninja!

Hello everybody! This is Jason with the daily update. I'm feeling a little pressure today because my friends, the Thurmonds, just stopped by and told me they could always tell who was writing the blog because Kristin's posts are saccharin-sweet, real three-hankie numbers. On the other hand mine are allegedly "hilarious" (it must have been the B.A. Baracus allusion). At any rate, I'll do my best to deliver. Onto today's events...

Samuel woke up this morning a happy-go-lucky 8-day-old whose stormy ocean eyes were wide open and very alert, which is how I like him best; I think it's because I'm less afraid of him falling asleep and not waking up. He was in fine fettle, despite a couple of issues with his "pressure trials," the tests that would determine whether or not he was able to breathe without the ventilator. Leading up to yesterday evening, the doctors were concerned that Sam may not be ready for extubation yet, not only because of a possible pleural effusion, but also because he was struggling with tachypnea, a very high respiratory rate which can sometimes be a sign that the heart and lungs are not working efficiently enough. They wanted more information. His doctors wanted more tests run to avoid extubating him prematurely. During the overnight trials, perhaps as a result of the tachypnea, Sam experienced supraventricular tachycardia, or SVT in medical lingo. The great irony here is that SVT is the exact opposite of bradycardia, the condition that had so frightened us in the days leading up to his surgery. Instead of having an exceptionally low heart-rate leading to too-slow respiration, now Sam had an exceptionally high respiration rate leading to a too-high heart rate. Did I mention Sam is not without a sense of humor?

Nevertheless, after a chest x-ray, a clean ultrasound, and this morning's rounds, the doctors decided to extubate anyway on the condition that Sam return to CPAP immediately. Enter...the white ninja reincarnated!

He was not happy. In spite of the nurse's and my wife's admirable efforts to keep ol' Wolfman calm during the proceedings, you can see he was not only less-than-thrilled about losing his pleural crutch but also unappreciative of having to go back on the PAP. He fought like the dickens, which of course nearly led to another attack of SVT.

However, in the end cooler heads prevailed, and while my lovely wife may have worn this expression after the 45 minutes it took to calm him down, he did--eventually--relax into the serenity of the CPAP. Sam was so thankful towards her that he peed on her during the next diaper change. One for the Wolfman!

In the end, with his trusty steed ("My First Teddy Bear") by his side and looking after his hat, Samuel slept. It was a tough transitional day for him, and the day ain't over yet...but the doctors like his progress and are hopeful that he may unmask some time either tonight or tomorrow.

As always, much love and thanks to those of you who are thinking about us.

Thursday, March 24, 2011

No Extubation Today

Just a quick update from Kristin:

Jason and I listened in on the doctors' rounds today, and we learned that Sam has a little fluid around his lungs; it's called a pleural effusion (not sure if I spelled that correctly), and it's a common issue after heart surgery. They can drain it, but they'll have to put a chest tube back in, and they'll have to hold off on the extubation until tomorrow.

The good news is that Sam is still far ahead of the curve; he's only three days post-op, and most Norwood babies are intubated for five to seven days, and sometimes longer. In the words of our doctor, he is still "fabuloso."

Also, he's a bit feistier today than he has been for the last few days. As my friend Anne was talking to him this morning and calling him "a fighter," he kept pumping his little fists. He actually made the "A-okay" sign with his fingers. Keep it up, little guy.

As for me, I went outside for the first time in a week to take a short walk around the hospital. I breathed non-hospital air and felt the sun on my face. In a word, it was fabuloso.

Wednesday, March 23, 2011

One Week Old and Making Progress

Quick update from Kristin:

Sam is exactly one week old today, and it's hard to process how much has happened in the last seven days. He's still a rock star today, and if you're wondering why, here's a list of his accomplishments from the past 12 hours:

1. Dr. Jaggers removed Sam's chest tubes first thing this morning.

2. Sam no longer has a foley catheter. He's peeing well, which means that his puffiness is starting to dissipate (and he no longer resembles a sumo wrestler, diaper and all).

3. His umbilical line was taken out.

4. He was taken off most his medications, including morphine. From now on, this tough little guy takes only Tylenol. I'm told that now the chest tubes are out, he's not in much pain.

5. Because Sam doesn't take as many medications anymore, his bed area doesn't look quite so much like the Starship Enterprise...perhaps more like the dashboard of a single engine jet.

6. He had his first bath! Unfortunately, it included an alcohol rub of his IV site, and he didn't like that part too much. But he smells really good now.

Now for the exciting (and scary news)...he's being weaned off his ventilator. They're doing little "tests" in which they turn off the ventilator for an hour at a time to see how well he breathes on his own.

The first test didn't go so well. The doctors were rounding and raving about how wonderful he was doing, and Sam, being his own man, decided to stop breathing once again. The doctors rushed in and bagged him until the ventilator started up again. I could have used some oxygen myself.

The second test went really well; he breathed steadily on his own for an hour. The nurse encouraged us to keep being patient because Sam needed time to exercise his lungs, little by little.

The third test is happening right now. So far, so good, but I have trouble taking my eyes off him and off his breathing monitor. I know there are plenty of nurses around, but I am apparently a protective mama bird. While my husband keeps encouraging me to take a walk (I have not stepped outside the hospital for a week now), I need a little further proof that my son can breathe on his own before I leave his bedside.

Oooh--breaking news: The third test is over, and once again, Sam has passed. Two out of three ain't bad, little man, especially considering how many changes you've been through today.

As big a day as today was, tomorrow will be the true test: Sam will likely be extubated (meaning the breathing tube will be taken out entirely--no more safety net). While Jason and I are a nervous, we're full of hope for our little man. Here's to you, Sam--we'll keep breathing if you will.

Tuesday, March 22, 2011

Little Rock Star

Today is the day after little Sam’s big surgery, and he is THE MAN! His nickname around here among the nurses and doctors has been “Rock Star,” and this tough little guy has certainly earned it.

Since his surgery, he has been hooked up to what can only be described as the commanding bridge of the Starship Enterprise:

He was breathing so well this morning that the doctor decided to start weaning him off the ventilator today. However, they may have moved things along too fast, because his blood gas and his oxygen saturations dropped a little this afternoon, so they had to up his ventilator once again.

As Jason and I were warned, these 48 hours after surgery are absolutely critical, and they’re full of tiny “tweaks” in the many, many medicines and interventions he’s receiving. A “tweak” to a cardiac intensivist means adjusting the amount of oxygen that reaches Sam’s brain and kidneys, or lowering one of his drips to improve heart circulation…definitely not the kind of “proofread your essay for comma splices” tweaks that I’m used to. But considering that he, at four days of age, endured the most complex heart surgery performed at this hospital, I’d have to say that I feel the same way as the doctors—impressed.

Also, Sam is enjoying his first meal today and finally getting to test out his gastrointestinal system! He can’t eat by mouth yet because of the ventilator, but he can enjoy a tasty one millimeter-of-breastmilk-per-hour meal via the NG tube. As he squeezes my finger and looks up at me with blinky, sedated eyes, I’d have to say that I think he’s liking his first meal just fine.

We still have another tenuous 24 hours to go before drawing any kind of conclusion about how well Sam has endured the surgery, but we’re hopeful he will keep on rocking.

Monday, March 21, 2011

3/21/11: 2:23 p.m.

Did I say tough? I should have said tough. Just talked to the surgeon, who appears reserved (as usual) but pleased. Surgery is complete and went well enough that he went ahead and closed the chest cavity, which we definitely did not expect. Now...that could change of course, and there are obviously lots of obstacles that could potentially occur, but we are guardedly optimistic. If it were Kristin writing, she'd have a nice metaphor about us taking a deep, collective breath. Me? Until we have a chance to write a more substantial entry, I'll just leave it at this. He's tougher than I, a fact for which I am very thankful.

Much love and thanks to every person who has taken an interest in us and in Samuel; it has palliated our anxiety in ways you may not be able to imagine.

We are especially grateful to hear from other cardiac kids and their families. Such kind and encouraging words. If we may be so bold, we will continue to draw strength from you and your support.

3/21/11: 1:00 p.m.

Update...the Norwood surgery is fundamentally finished...just a few more stitches to go in placing the Sano shunt. They will be starting the rewarming process and taking him off the heart-lung bypass soon. Still breathing.

3/21/11: 11:51 a.m.

Sam is doing fine. The pulmonary artery has been disconnected, and the surgeon is approximately 7/8 of the way through the reconstruction of the aortic arch...

Succinct Update: 3/21/11 @ 11:37 a.m.

This morning, just before surgery, the doctors took off Samuel's CPAP mask, and he opened his beautiful eyes for the first time in almost a day and a half. He was all cute and blinky. Tough, too. He's tolerated all the poking and prodding with nary a whimper. Hoping it's not just the effect of sedation...he'll need his strength.

Anyway, got word about a half hour ago. Samuel has been successfully placed on the heart-lung bypass machine. So far, so good...

Sunday, March 20, 2011

Holding Our Breath

Hello! This is a note from Kristin on the night before little Wolfie’s big surgery. I’m sorry to have been absent from the blog for the past several days, but my husband, in the meantime, appears to have perfected the art of blogging. I particularly liked being linked to a picture of Mr. T.

First, I wanted to share with you that every night between midnight and one in the morning, I sit down to read Jason’s posts and all of your comments. It’s hard to describe the peace that they bring me…it’s as if I’ve been holding my breath under the water of beeping alarms, doctor’s lingo, and blinking monitors all day, and your prayers, wishes, thoughts, and funny comments help me come up for air.

Sam has apparently decided, at least for the day, to come up for a little air. After watching him crash yesterday roughly every half hour, I was on the verge of melting down. My least favorite moment came while I was holding him, and his pulse dropped as he stopped breathing entirely, turned blue, and went completely slack in my arms. The nurse instantly grabbed him from my lap, patted his back vigorously, and gave him some oxygen. He came back pretty quickly, but he turned such a frightening grayish blue that the doctor was called in. Apparently, he gets “too comfortable” when being held and forgets to breathe. So we left him in his bed for the rest of the day and night, propping him up and pounding his back each time the alarm sounded.

So today, I was quite hesitant to pick him up. Instead, I tickled his hands and feet and rubbed his chest and belly. Our new nurse, Clay, saw me doing this, and asked, “Would you like to hold him?” I explained what had happened yesterday and how the other nurse had suggested just leaving him in his bed to play it safe. Clay simply replied, “Today’s a new day.”

And it was. I held him for a long time as he breathed peacefully and remained a nice rosy pink. After dinner, Jason held him, too, and as we rocked him and watched March madness, it almost felt like we were in our living room, just the three of us, instead of in a cardiac intensive care unit.

I feel quite lucky to be this little guy’s mom, and though the past few days have been challenging, they have also been the best days of my life.

To Samuel: You are a tough little lion. I wish you the best of luck tomorrow, and Mommy will be right here when you get back. Until then, I will stand here in the quiet eye of the storm, holding my breath and loving you.

Saturday, March 19, 2011

Sweet Dreams, Frightening Moments

First things first. I hope I did not accidentally misrepresent myself in the last blog entry; Kristin and I are absolutely thrilled that people all over the country (and even world!) are thinking good thoughts for us and praying for us. As I said yesterday, it is both humbling and appreciated.

Second things second. Someone asked if the 50/50 odds were in reference to survival or intubation. Emphatically referring to intubation! Hope my sleepy grammar didn't cause too much confusion. Also hope my students don't bash me for unclear pronoun references.

Now onto the day's events...

Kristin continues to be amazing with little Sam. Her favorite activity is to let him hold her fingertip while she supplies binky entertainment. Those are the moments when he seems most alert. Good moments.

Nothing particularly important going on here, but I think he looks like a burrito. Mmm...burrito. Dinner at Chipotle tonight compliments of the Drowns, their generous (and anonymous) friends, and my friends and colleagues at CTHS. Thanks for the gift card(s)!

As promised, a better picture of Sam in his new lion hat. He didn't wear it long for reasons that will become clear later, but I wanted to show it anyway. Also, it's getting harder and harder to catch him with his eyes open. As of this precise moment, Monday's surgery is 32 hours and 21 minutes away. Kristin and I both agreed that when we first came here, we were most worried about the surgery itself; now, because of Sam's scary complications, we think it can't get here soon enough. Again, details below...

This was my favorite and worst moment of the day. Favorite for obvious reasons. Worst because of the second picture. Evidently, Wolfie is both literate and not without a sense of humor. He must have read yesterday's Shakespeare-inspired post, because today he lived in a world of high drama. The observant may notice that Samuel is beginning to get a bit jaundiced. We are hoping it is not a result of infection, but the possibility lurks. Also, seconds after this picture was taken, Sam had the first of today's numerous apneic episodes. He became almost completely inert and unresponsive; his heart rate dropped below 40 bpm; his respiratory rate dropped to less than 10 breaths per minute. Seconds later he was revived with an oxygen mask, but as I suggested, this was not the last of his episodes. They continued and even worsened throughout the day...

Which brings us to luggage. Yes, luggage. Those of you who know me will not be shocked, but evidently, in the face of powerlessness and uncertainty, I try to control something. Today's great accomplishment? I reorganized the clothes in our suitcases. Felt good.

Then I solved a Rubik's Cube. Felt even better.

In spite of my moments in time-well-spent-land, however, Wolfie continued to worsen throughout the morning and early afternoon. He was having episodes 10+ times per hour with one requiring significant intervention to get him breathing again. It became so bad that the attending physician herself appeared and gave him a stern talking to. She even used his middle name, Jerry, so you know he was in big trou-ble...

As a result of Samuel's worsening attacks, the doctors decided that it was time Wolfie got a new hat. What is it, you ask? A rhino? A unicorn? Triceratops? Personally I'm thinking white ninja. Then again, it might just be the CPAP mask, the final intervention before the dreaded uncertainty of intubation. The Catch-22? Most of Sam's other data looks pretty good, but allowing the apnea to continue at this frequency and severity is becoming...unsafe. Intubation would virtually guarantee that the apnea would stop; however, the critical and delicate balance of his other issues (specifically his oxygen saturation levels) would likely be interrupted. Hopefully the CPAP will do the trick. We'll know one way or another tomorrow.

Friday, March 18, 2011

To sleep, perchance to dream...

Wow. When we started this, Kristin and I expected that it would be a really useful way of keeping family and friends updated; now it's becoming much more. Before I get to today's news, I would just like to say how appreciative Samuel and we are for all of the thoughts and love. While we may tend a bit towards the secular, we are nonetheless humbled by the outpouring of love we've received from well-wishers all over the country, people who only know us through this blog. We had comments from Bowen's mom--Kristin was especially moved by his progress while we were preparing for our journey. We heard from Marie Louise Ludwig, whose son is a 22-year-old survivor thanks to the Dr. Norwood. Kim Weiss sent thoughts, and Brenda R., a colleague of mine with her own cardiac kid, chimed in as well (btw, Brenda...soooo right about the hand lotion!). Not to mention our students who are keeping us in their thoughts and even checking on our kitties while we are away. Truly humbling.

Thank you.

Now, before I "thank you" to death (after all this ain't the Oscars), the day's news. We had four banner events.

1. Kristin was discharged from the hospital across the street. Woohoo! It may not seem that exciting, but now two things can happen: A) She can spend a lot more time with Samuel; she managed a little successful feeding today. And B) We won't get phone calls from the maternity ward wondering where she is in the middle of the night. Seriously, last night they tracked her down and made me escort her back to her room. It was crazy. They acted all nice about it, but there was, you know, that edge to it.

2. Wolfie got a new hat. Remember: we're celebrating the little things. Apparently, he's a lion today. He wouldn't stay still for this picture, but he's so cute I decided I didn't care. We'll try to get a better photo tomorrow.

3. We got some visitors! This is his aunt contemplating him. Other friends, including school friends, came by or talked on the phone, which was lovely until I had to hang up on one in the middle of a call, which leads us to the motif of today's entry...

4. Sleep. Forget my lack of it; now there's a more significant issue. Wolf-Sam has got the opposite problem of me: he sleeps too much and too deeply! While the doctors seem optimistic regarding some of his new data today, a new complication has come to light. Remember (it was only posted yesterday?!) when I was woken up to alarms and the personnel stampede? Unfortunately, Samuel is making a habit of such moments. He has taken to falling into such a deep sleep that he simply stops breathing (sorry, Sue...that's why I hung up on you). He had at least double-digit episodes today, one of which occurred while he was hanging out in my lap watching March Madness. He was fine one moment, rooting on Ohio State (go Buckeyes!); the next moment, he was turning blue (stupid Wolverines;). Not flattering for his fine complexion and geographical heritage, I'm afraid. A little chest-rubbing, a little foot pinch, a little oxygen over the nose and he comes out of it, but the episodes are far too frequent for comfort. The doctors have tried various solutions so far: lowering the prostaglandins, adding caffeine to his diet (he prefers it mainlined), constantly sending high oxygen flow into his nose. And yet, he seems determined to have his way. Surgery is three days away, a metaphor for eternity according to the Elizabethan writers, and we'd like to get him there without having to be intubated. The cardiologist just announced that the odds were about 50/50. Sounds like a hedge to me. They will try a technique called Continuous Positive Airway Pressure (CPAP) first to avoid intubation, but I'm not holding my breath. In fact, it's 1 a.m. and I'm going to sleep. Much love to everybody following, and until morning brings the results of the CPAP machine, "Good night, sweet prince" (Ham. V.ii. 371). But if any "noble hearts" start cracking or any "flights of angels" start singing, you'd better wake your little baby tush up!

Thursday, March 17, 2011

Top Ten Things You Might Want to Know About a Wolfman (and his parents)

Since I'm sure Kristin and I have well exceeded our 250 text/month quota, I thought I would respond to the most popular questions in one fell swoop rather than text by text...

10. Wolfie was born at 7 lbs. 4 oz. AND 20.5" (finally got a length measurement).
9. He is currently very pink, not blue (cyanotic). Hooray!
8. No surprises in his recent echocardiogram; all the structures in his heart are as expected.
7. Kristin has been recovering exceptionally well. She was and is B-A.
6. Wolfie is a very calm baby (except when being poked); I'm also assured that--even though the nurses clearly say it to all the parents--he is, in fact, very cute.
5. How he got his name: Samuel comes from Samuel Hamilton, my favorite character from East of Eden. Jerry is named after Kristin's dad. Wolfie is short for Wolfgang, the affectionate nickname given by Kristin's AP Literature class. It started as a joke, but it kind of stuck. Could be a tough transition for some people...myself included!
4. Yes, our personal trainer, Mark, did actually call me just moments before Wolfie's birth. No, I did not answer.
3. Yes, Wolfie was born with hair. But sadly no, not enough to make him either a real wolfman or a wookie.
2. Wolfie's first surgery, the Norwood procedure including the (Sano shunt) is tentatively scheduled for Monday, March 21, 2011.
1. Yes, at this point Wolfie is as healthy as he can be given his heart condition. As are we with ours.

An Eventful Day

I suspect I'm not the first, first-time father to express this sentiment, but oh my god, am I tired! I made a list of five to-dos today and only managed to finish one: I called my dad. Welcome to parenthood, I suppose. At any rate, I've been mentally composing a number of posts today, and I thought I'd simply combine them into one monster entry. Here goes: the first day in the life of Samuel...

Hey, I Just Got Born!

So right after Samuel was born, he was immediately cared for by a virtual army of neo-natologists. There were (no joke) 12 people in the birthing room at one time. Within the first ten minutes, he was foot- and hand-printed, measured, swaddled and on his way to the Neonatal Intensive Care Unit (NICU) at University Hospital. Kristin and I did get to hold him for a few minutes, which was nice, but it didn't last near long enough. Kristin had to stay in the room for after care, while I accompanied Samuel to the NICU (check out his cute little feet while he has an umbilical line placed!). After awhile, the echocardiogram technician arrived, and it was time for Kristin and I to have some late, late dinner and what turned out to be the briefest of naps...

From the NICU to the CICU

Kristin woke me up out of a dead sleep because the doctors had decided Wolfie's oxygen saturation levels were too high, and so he needed to be taken over to the Cardiac Intensive Care Unit (CICU) at neighboring Children's Hospital right away. What followed was definitely the most surreal part of the evening. When I arrived at the NICU at around 1:55 a.m., I was treated to a scene that a friend of mine suggested came straight from The Matrix. They try to get you ready for all the tubes and wires, but my imagination was utterly lacking in comparison to the reality of it all. I mean, just look at the contraption they had to use just to get him from University to Children's, a mere three-minute ambulance ride away! The middle picture best summarizes my impressions of the whole thing; I'm amazed I was even able to snap these photos from my cell phone in my stupor. Anyway, sometime between 2 and 4 a.m. we arrived safely at the CICU. All was well, and Samuel and I slept...

How he's doing now

I was woken up in a heartbeat at 6:58 to the sound of alarms. Little Wolfie had stopped breathing. Evidently, the prostaglandins that are keeping his heart temporarily viable can also cause an apneic side effect. Happily, I did not have time to panic because by the time I woke up enough to understand what had happened, there were eight doctors and nurses in the room, one of whom was able to get him breathing again very quickly. After he stabilized, I got to spend some time holding him. It was amazing: joyful and terrifying. Wolfie was still alive, but he will have to endure more and more difficult struggles in the future. Here's hoping he (and we) have enough fight in us to overcome all such moments...

Wednesday, March 16, 2011

Meet Wolfie Leclaire!

Kristin and I are amazingly excited to welcome our new baby boy to the world! Samuel Jerry "Wolfie" Leclaire was born at 8:52 p.m. on March 16, 2011. He weighs 7 lbs. 4 oz, but due to other prioritized procedures, we do not have a length measurement yet. Regardless, this may be the first time I've said "Happy Birthday" to someone and actually meant it. Happy Birthday, Wolfie!

More details and pictures to follow...

Making Progress...

You see that smile? That's the smile of my wife, a woman whose water broke, whose contractions started in earnest, and who just said goodbye to the anesthesiologist who delivered the sweet joy of an epidural!

We're not in the home-stretch yet, but one hurdle is down anyway. While we're hoping that means that baby will come soon, we will remain patient, happily pain-free, and anxious to meet the little wolfman.

Tuesday, March 15, 2011

It has begun!

This is a post from Jason. It's my first personal post on a blog ever, so be patient if I break blogging etiquette. This morning, while I was in the middle of teaching Heart of Darkness to my 2nd period class, I got "the call." So sure enough, I dropped Conrad, and a few hours later Kristin and I were at the hospital in early labor (well, she was). While it is still very early in the process and contractions are still comparatively small, the doctors are taking a "more conservative approach" than usual and keeping us here; they want all the right personnel in the right place at the right time. At any rate, here we are: hurrying up to wait. We'll keep you posted...

Saturday, March 12, 2011

Our Story

Last July at a routine checkup, my doctor surprised and thrilled my husband and me by telling us that we were pregnant. Our excitement, however, had some serious anxiety to contest with.

Just six months before, we had lost our first baby at 20 weeks of gestation to a rare chromosomal disorder called triploidy; it’s a sporadic occurrence that happens at conception, causing the baby to develop with an extra set of chromosomes in every cell of her body. Unfortunately, it is “incompatible with life,” as the doctors say, and our baby had no chance of survival. When we delivered her, we named her “Hope”—one of the most beautiful words in the English language, in our opinion—and as we faced the routine chromosomal testing of our new baby over the next 20 weeks, we held onto hope tightly.

This fall, the new baby—temporarily named “Wolfie” by our students—passed the initial chromosomal tests with flying colors. When we hit the big 20 week ultrasound, however, we once again encountered a quiet ultrasound technician, a silent shuffle into a small conference room with tissues, and a grave-faced doctor informing us that she had some bad news: “Wolfie” had a very rare and serious heart defect called Hypoplastic Left Heart Syndrome. The world stopped for a moment.

When it started again, my husband and I were holding onto each other’s arms and trying to absorb the many differences between the color-coded pictures of normal hearts and the diagram of our baby’s defective heart. The only thing I could understand at the time was this: The entire left side of my baby’s heart didn’t work and would never work, and he would need life-saving open heart surgeries to have a chance at survival.

At the end of the conference, the doctor gave us four options:

1.Wolfie could have three risky open-heart surgeries. The first would take place in the first week of his life, the second at six months, and the third at two years of age. These surgeries would systematically reroute the blood flow so that the right side of his heart would do the work of both sides.

2.If Wolfie were not a good candidate for this surgery, he could be put on a list for a heart transplant.

3.We could give Wolfie comfort care when he was born so that he could pass away peacefully.

4.We could terminate the pregnancy immediately.

We drove home in silence.

My husband spent the rest of the weekend in that silence while I attacked the internet with manic energy. Being a high school English teacher, I desperately needed some control and structure. So I researched Hypoplastic Left Heart Syndrome on every medical website and personal blog I could find. I watched videos of the three surgeries. I dug into the statistics of University of Colorado Children’s Hospital (we live in Littleton, CO) and was encouraged by its highly ranked pediatric cardiology department. I discovered that Wolfie roughly had an 80% chance of surviving the first surgery and a 90% chance of surviving each of the subsequent surgeries. I found stories of many parents who had lost their babies to HLHS, and I cried for them, and I also found many stories of HLHS babies who had thrived. Often, I thought about Hope.

My husband and I grieved deeply as we started to understand our baby’s illness, but we also realized one important thing: where there was no possibility of survival for Hope, Wolfie has a fighting chance.

This blog is dedicated to his fight and to everyone who would like to be a part of it.

--Kristin and Jason Leclaire

Here's a picture of the little guy at 37 weeks. He's now due in less than one week.