Actually, who am I kidding? The fact that I was afforded the chance to shower at all today is a miracle in and of itself. Regardless, shower I did, and I spent time thinking while I was at it.

I was thinking, of all things, about how our family’s blog names came to be, and trying to recollect when it was I started this bog. And it occured to me, somewhere between drying off while hopping on one foot to avoid tub toys strewn about on the bathroom floor and grabbing a rubber band to pull my hair up with, that maybe it was time for a little recap on my blog.

You know, for those of you who are new. Or who have bad memories. Like me.

So, in a fashion similar to what I did here, I offer today a recap, in bullet format, about my blog and the characters herein.

I was born a long time ago, in a land not so very far away. My husband, who I refer to on my blog as Prince Charming, and I grew up together and have been married for almost 6 years.

I started this blog almost three years ago, the day I learned what a blog was. I had about 4 readers. They were all related to me.

We live in the Frozen Tundra, where it has currently thawed out enough to be loosely called summer. We live on a lake in a small house in a small town that is on the edge of a big(gish) city.

I coined the name MckMama for myself back when we had only three children. Their names begin with M, C and K, and our last name begins with all three, so I thought MckMama was a clever and appropriate blog handle.

We added a surprse fourth child to our family 8 months ago. He was diagnosed in the womb with a heart condition that nearly killed him. He survived and was born healthy. All evidence of his heart condition, SVT, was gone until he was 4 months old. He has quite a medically adverturous life so far. You can read more about it here. He is on heart medication. Recently, his dosages were upped again, and he has been SVT free since the 4th of July.

Our children are young. I gave birth to our fourth when our first was only 3 years old. No twins. I sometimes lovingly refer to our children as our MSC. That stands for Many Small Children.

I took our MSC to a sweet antique shop in the middle of the country this morning. It’s in a old barn. They were well behaved. We saw a peacock. I bought a distressed turquoise dresser. I took this picture.

Our MSC have real names. But our 8 month old, Stellan, is the only one I refer to by his given name on my blog. When we thought we were going to lose him, we shared his name with all of you, in a desire that his name be known before he died. Since then, I have not been able to call him by his nickname, MckMuffin, very often.

Our other children are Big Mac, a 4 year old boy; MckNugget, an almost 3 year old boy; and Small Fry, a 20 month old girl.

We have never called our children by their blog nicknames in real life. They have no idea what a blog is. But they do know what McDonald’s is. And they also eat a lot of hummus.

My husband’s mother lives in our mother-in-law apartment. I refer to her as the Queen Mum. Not because she’s old and matronly, though. Check her out here. Queen seemed an appropriate title, since she’s my husband’s mother, and I refer to him as a Prince.

Then there’s Uncle Duke, my husband’s teenage brother. He lived with us for 1 day a few months ago and is now in boot camp with the Marines.

I read all the comments on my blog. I really do. Every time. I shoot with a Canon and I get the boys’ stretchy cut-off sweatpants from Mini Boden. You’re welcome.

My husband’s father and older brother passed away when we were in high school. My parents live in another state, but we visit their house as often as we can. My sister and her family live nearby and she’s going to make me an aunt again in October.

I used to be an elementary school art teacher. Now I am a wife and a mother who mostly stays at home. I also work as a professional photographer and a blogger. Like, no duh.

And, with that, I think we’re up to speed. Don’t you think?

What about you? I’ve gotten to know many of you who are regular commenters, just be reading your comments. I remember your profile photos and screen names and I know lots about many of you. To that end, I’d love to learn even more. Who are you all? When did you discover the blog world? Do you have children? Have you made up silly nicknames for your family, too? Are you the parent of a heart baby? Is it hot where you live?

You get the idea. I recapped for you, how about returning the favor in the comments of this post!?

I was doing a lot of purging, cleaning and organzing when I realized. Sorting through papers on my desk, many at the bottom of the pile which had been there for–literally–a solid year, I pulled out a packet. It was a medium sized white envelope with greeting cards inside. I looked through some of them. They were for Stellan and for me. At first I thought they must have been from when Stellan was in Boston a few months ago, having the ablation performed on his heart because his SVT had spiralled out of control.

But it didn’t take me long to realize the cards were older than that. About a year old, to be precise. This day a year ago changed me forever. I was rocked to my core in a way I can’t convey to you unless you’ve been there. It was a year ago today when we first learned that something was wrong with Stellan’s heart.

That afternoon, I penned these words on my blog:

And I know it is still a blessing (in disguise, perhaps, as only God knows how this story will ultimately unfold) that this morning at my routine 20 week ultrasound, came a crushing blow of unexpected news. Our baby’s tiny heart is not as it should be. Beating irregularly, at times not beating at all, twitching, double beating and then missing a beat, I could see instantly that something was wrong with his heart even as the ultrasound technician was still zooming in for a closer look…Our baby’s heart is suffering from severe arrhythmia, and there is fluid on his heart.

Stellan was as yet unnamed and unborn, but his little heart was already in heart failure, his body filling with fluid. It wouldn’t be long before I was whisked to the hospital to be pumped full of cardiac drugs in a desperate attempt to save my baby, where I would spend almost three of the darkest weeks of my life.

I realized that the anniversary was upon us when I saw a folded group of papers among the cards I found while organizing yesterday. About four pages in length, it was a little group of worksheets, stapled together, dated July of last year. As I unfolded the papers and began to read, I literally fell to my knees in the dark, evening kitchen. The questions, unanswered, stared back at me from the pages. Short spaces after each question were left blank. Not enough room to have held a long answer, the spaces on my sheet held no answers at all.

I’d never completed the questionairre.

I remember when the Care and Grief Coordinator at the hosptial was assigned to me. She was very sweet. Cute. Young. She seemed so unversed and innocent, yet amazingly persisent in her kind attempts at getting me to fill out the papers she gave me. She would stop in once a day to see if I’d completed them.

I just couldn’t. I remember that. I looked at the packet only once and just couldn’t do it. I know I tucked it away in a drawer in the bedside table in my tiny hospital room. The drawer where I kept the gum and candy my friends had brought, and the ultrasound photos of my baby I’d save each time he had an ECHO.

But yesterday, I opened the papers and read the questions one more time:

When your baby dies, do you want to hold your baby? Would you like a nurse present in the room? What where some of the hopes and dreams you had for this baby? Does your baby have a name? May we call the baby by that name? Would you like a photographer present? How much time would you like with your baby?

My knees hit the floor last night as I read those questions. The tears came immediately, but my face was frozen for a while. I didn’t have an all-out cry right away. Just started thinking, through my tears. Was it true? Was Stellan really so close to death? I can almost not believe that he came so close to dying. Yet, at the same time, that pain and fear is so real and present in me that at times I can almost not believe that he is alive and is sleeping soundly in the next room, eight months old.

We were surprised by joy. But it has been a hard road.

After holding the papers in my hands for a few minutes, taking in the brevity of the moment, thinking about what Stellan’s future might hold, letting my mind wander back to the past, remembering when the doctor came in to my hospital room and told us that our baby would not make it to be born alive, I finally set the stapled sheets down and walked into our bedroom to be with my husband. The big, ugly cry finally came. Through crocodile tears I asked him how it was possible that we were told our son would die a year ago, that he was terribly sick when he was too small to survive, but that survive he did and was born a robust, blue eyed, perfect baby.

It just isn’t fair. And sometimes I almost can’t believe all that really happened to us.

We were surprised by joy when Stellan was born alive and well. But some families aren’t. Where is the equality in that? More surprises lay ahead for us, of course, when the condition we were certain Stellan had outgrown reared its ugly head a few months ago. Shock and disbelief that we were again back to those dark days came over us. We were sure that chapter in our lives had been forever closed. We were wrong.

It jsut isn’t fair. But again we have been surprised by joy.

It is the joy that we know in being able to put one foot in front of the other each day. In having Stellan in our arms, in our life. It’s nothing short of breathtaking that our baby boy made it through those harrowing weeks in utero when the doctors did not think he would. It is the joy that we have made it through our dark past, through moments, hours and days when we thought we’d lose him and, in the process, were sure we’d lose ourselves, numerous times in the past year. And though we know not how many more dark moments lie ahead for our sweet baby boy, we do know that we are celebrating this one year anniversary with joy.

Though the feelings, both in looking back and in looking forward, are both bittersweet, what remains is that we have the here and now. Just like one year ago, when I cherished every single kick and flutter I would feel from Stellan inside me, knowing my baby was still alive, savoring each special moment I was gifted to spend with him, so is it the same today, a year later. I soak up each new day I am allowed to spend here on earth with precious Stellan.

And I remain forever changed. Yes, I’m still scared, still wounded. Yet I’m decidedly hopeful and amazed. I have been surprised by joy.

Four of them, to be exact. Born within a span of three years. No twins.

Big Mac is our oldest. He’s almost 4 1/2. Nuggey is our second son and he’s 2 1/2. Small Fry, our only daughter, just turned 19 months old. And then there is baby Stellan, whose blog nickname is MckMuffin, and he is 6 months old.

Stellan is the only one I refer to by his real name on my blog. Back when I was pregnant with him, he was very sick because with SVT. We were told at one point that he would likely not survive. I announced his real name on my blog, so that he could be known before he died. And it has only seemed natural since then to keep the name Stellan alive and well on my blog.

Because Stellan is alive still, too. You can read all about Stellan’s story by clicking here.

So these are my children.

And they have two different fathers. But more about that in a minute.

Since his ablation in Boston nearly a month ago failed to cure Stellan’s SVT, Stellan had been doing remarkably well. Until about a week ago. He started having runs of SVT (Supraventricular Tachycardia, marked by a dangerously fast heart rate that, left untreated, leads to heart failure) again in his sleep. He sleeps while hooked up to a monitor, so I knew he was having the runs at night since last Friday. But there was no way to tell what was going on in his heart during the day, so Stellan’s fabulous cardiologist here in town, Dr. B (Not to be confused with Stellan’s equally fabulous cardiologist in Boston, Dr. A) wanted Stellan to wear a Holter monitor for 24 hours earlier this week. Via nodes on his chest attached to a small, portable monitor, the Holter recorded Stellan’s heart activity for 24 hours straight, even when he was not hooked up to the large monitor he uses at night.

This morning, Stellan and I went downtown to meet with Dr. B to discuss the results of the Holter monitoring and to create a plan for how to keep little Stellan’s heart out of SVT. Stellan has already had surgery in Boston that, as I mentioned, was unsuccessful. At this point, the goal is to keep Stellan’s heart as free of SVT as we can with the prayerful hopes that maybe he’ll outgrow this. If he does not outgrow it (As, unfortunately, both Dr. A and Dr. B suspect that he will not, given his age and the tenacity of his SVT), he will need a more aggressive surgery in the future, with a very likely outcome of that surgery being a pacemaker.

To hold Stellan off for a while, to give him time to grow big enough for that surgery (Which Dr. A would love for Stellan to be 4 years old for), this SVT has got to be controlled better than the Holter monitoring revealed that it is being controlled. Dr. B today showed me the results of the Holter monitoring and they were disheartening: Stellan was in and out of SVT nearly all day long, with many short and long runs at night, during the 24 hour time period he was monitored.

Bummer.

It seemed from the strips like Stellan goes into SVT when a dose of Sotalol is almost due, however. That is actually great news. It means that Sotalol, the beta blocker/anti arrhythmic Stellan takes every 8 hours, is working. Dr. B is hopeful that upping Stellan’s dose substantially will help. Stellan’s EKG showed that his QT lengths are great, so there is room to go up on Sotalol. I will give Stellan this higher dose for four days, continue to monitor him with his permanent heart monitor at sleeping times, and see if the SVT goes away. It it doesn’t, we’ll up his dose again.

At times when Stellan goes into prolonged SVT, I do need to use vagal maneuvers (smothering his face with ice in a bag, sticking my finger up his rectum, swinging him upside down by his legs, dropping and then catching him, scaring him, gagging him) on Stellan at home if he does not break on his own. But mostly, his bouts of SVT have been self terminating, thankfully.

I have smothered Stellan with ice before in an attempt to break him out of SVT before and it is not fun.

The results of Stellan’s Holter monitoring show Dr. B almost unequivocally that Stellan was certainly having SVT on and off during his entire first 4 months of life, when he was not taking any drugs at all. We just didn’t know it. We were convinced he’d been healed. But he was, indeed, not.

Our faith in God is unshakable, though. Even in spite of that.

It is most common for babies with persistent SVT in utero to either pass away, or to outgrow the condition by birth. It is protocol in the electrophysiology world not to medicate, or even do extensive check ups, for a baby who presented with SVT in utero, but was born alive with no problems, as Stellan was. It is unusual to see a baby with SVT in the womb at 22 weeks, and to still see that SVT present at almost 7 months of age. It is the longevity of Stellan’s persistent SVT that leads his doctors to assume he will probably not grow out of this.

Stellan will do another Holter monitor next week from Wednesday-Thursday and we will review those results with Dr. B afterwords. The hope is that the increased Sotalol doses will prevent so much SVT from taking place in Stellan’s heart. We will wait and see if that does the trick.

We are so blessed that Stellan is as strong as he is. He is growing like a weed. A pound and a half and two inches since just the last time we were in to see Dr. B three weeks ago. His height and weight are closely monitored, as Sotalol is a very sensitive drug. It is actually dosed not by how much Stellan weighs, but by his body surface in square centimeters. Crazy, I know.

Meanwhile, I remain so thankful that Stellan has two fathers. In fact, all of our children do. Their earthly father, my husband Prince Charming, is strong and amazing. He comes from good stock, remember? Not only is he handsome (just try to tell me I’m wrong), but he is a tender father, as well.

But our children have a different Father, too. One who loves them more than their human daddy or I ever could. You see, Jesus, the “author and perfecter of our faith”, is their Father as well. God knit our children together in my womb, taking extra care to make Stellan’s heart as special as it is. And since God created Stellan the way He did, it only makes sense that we trust Him with the outcome of Stellan’s life. Whether our baby’s SVT comes or goes, stays or disappears, requires surgery or seems to evaporate into thin air…indeed, whether our son lives or dies is all in our Maker’s hands.

While we hold Stellan on earth, his tangible daddy will protect and love him. But both Prince Charming and I rest in the knowledge that Stellan’s Heavenly Father will protect him in a way that we can neither fathom nor understand.

My children have two different fathers. And I couldn’t be more thrilled.

This posts are in reverse chronological order, starting with Stellan’s birth and going back to the time in my pregnancy when his congenital heart defect was first diagnosed. To read them from the beginning, scroll down to the bottom of the page and click on “older posts” until you get to the first one, and then read from older to newer.

If you want to read about Stellan’s journey with SVT after he was born, you can read that story here.

We hope you are moved by Stellan’s story. Happy reading!

For MckMama’s BlogFrog community moderator, please email moderator (dot) mckmama (at) gmail (dot) com.

Interested in advertising? Reach us at contact (dot) mckmama (at) gmail (dot) com.

For Stellan bracelets, write to stellanbracelets (at) gmail (dot) com.

Click the following links to learn more:

Stellan’s name gallery

MckMama’s story

MckMama’s photography website

MckMama’s cameras and lenses

Faith

Join us on the MckCruise in January 2010

Sling and babywearing

Breastfeeding

Circumcision

Cloth diapering

Stellan’s illness before birth

Stellan’s hospitalization and surgery

Photography lessons

Politics

Not Me! Monday

Vaccines

Recipes

Baby food

Marriage

Mothering

Nutrition

Can’t find what you want? Use the box labelled search blog at the very upper left of the page to hunt for more topics.