Not Me! Monday

Are you feeling guilty for using your husband's razor and then pretending you don't know what he's talking about when he asks? Hope that no one saw you pick your panties out of your rear end at church yesterday? Overcome with shame because you blamed an embarrassing sound on your baby? Well don't be! Not Me! Monday was born out of my desire to admit some of my imperfections and reveal a few moments I'd rather forget. You may find it therapeutic to join in and do the same thing!

I'd love to be able to use the excuse that I've been basically gone for over two weeks to explain why the corner of our bedroom looks like this.



But alas. It is not me who lets our clean clothes pile up. This photo is certainly not from before Stellan got sick this last time, thus leaving me unable to use the above excuse. Nope. I always do our laundry and then fold and put it all away as soon as it comes out of the dryer. I never go for days on end just stacking clean baskets on top of each other, fishing for clothes in them, and only put them away when we run out of baskets and I must start again. Nope. Not me!

So what do you say? Would you like to share what you have not been up to lately?

If so, join the Not Me! Monday fun! Simply write your own post on your blog, link back within your post to my blog, and sign up with MckLinky below. Please make sure you know the rules if any of that sounds confusing by either clicking on the Not Me! Monday button in my lower left sidebar, or just right here. There you'll be able to get some fool-proof ways to publish your own Not Me! Monday post, as well as learn how to link back to my blog if you don't already know how.

Happy Not Me!-ing.

making up for lost time

Good evening!

I need to make up for some lost time (But it wasn't really lost at all, was it? I know right where that time went.) and cover a few blogging bases. Please remind me if there are any loose ends you can remember that I left out here.

You know, if you read this all. It's kind of long and chock full 'o stuff. But it's worthwhile (Of course, I think so!), so I hope you do!

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Today was the Focus on the Family parenting simulcast in Colorado. Even though we had planned to be a part of it, obviously Prince Charming and I decided coming home and being together as a family was in our children's best interest. Of course we were definitely bummed to miss it (and to miss the chance to hang out with some dear friends of ours) but we are so thankful at the love and understanding from the folks at Focus. We also had to (Rats!) miss the little Colorado MckGathering we'd planned for yesterday.

But is anyone interested in a Southern MckGathering this month?!

Yes, I did want to throw out the idea to any of you southern gals that my family and I will be down in Atlanta for our (usually) annual trip to see family soon. My husband and I were discussing how we'd love to get together with all y'all one afternoon while we're down there, to casually hang out and maybe even do some photo shoots.

What do you think? If you're game or want to know more or want to help me plan something, please email me at contact (dot) mckmama (at) gmail (dot) come. If you will, share with me your Facebook page or blog or whatever you have and please put Atlanta in the email title so I can keep my inbox organized.

If you bring the black eyed peas, I'll bring my camera!

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Nope. I haven't photographed all of us since we've been back together as a family. I did snap this picture of Big Mac reading in his room, though. And no, this is not his old room at our old house.



But it is painted the exact same color! Hey, find something you like and you stick with it, right?

Anyway, our local Fox station did a short story on us yesterday and our reunion at the airport was caught on film. If you want to see it, click here!

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Drumroll please.

I have the most adorable little child sized baby sling wrapped and ready to be sent out!



The winner of this giveaway is kerristhename! Just email me and I'll send the sling your way!!

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I know I have a few MckGiveaways still hanging open ended. I will announce those winners soonish. Plus, because Stellan threw us a curveball in October, I still have lots of giveaways I need to do! So, November will be giveaway month, too.

How do you like that?

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The hats for cancer kids campaign was a rip roaring success!! I can't wait to tell you all about how things wrapped up, and share photos, soon!



Just give me a few more minutes hang out with my kids. Then I'll get my rear in gear and compose a post to tell you all how it went!

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What fun it was this morning to watch the comments and pledges roll in! I heard from Laura at String of Pearls and Kelly at Sufficient Grace that there we so thankful and had seen some donations come in directly today already.

Thank you!!

The total that my family will be donating is $1620, $1 for each person who left a comment (And $1 for those of you who Tweeted or emailed because you couldn't comment!). One third of that will go to String of Pearls, a third to Sufficient Grace and another third to the Liz Logelin Foundation. And then (Still tallying!) many of you have already donated or have said you will donate (Over $150 more!) to one or all three of the organizations.

Please don't let the fact that comments on that post of mine are closed stop you. Feel free to go to those websites and donate $1 or more if you can!

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Next up? Some photography posts!! You might remember that I helped my good friend Carrie out by second shooting for her at a wedding recently.



This is one of my favorite photographs from the day. More to come...plus some photography lessons, too! (Any requests? I'm definitely no pro, but I'd love to share about what I'm passionate about! Just let me know if you have ideas for what you'd like my next lesson to be about.) I'm quite behind in that department, aren't I?

Well, not for long!

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Stellan is doing great. Just great! He's pumped to be home, barely seems sick at all, is drinking like it's going out of style and is cruising along furniture like a pro now. His siblings are still reveling in the joy of having him around. Plus, we're still munching on celebration cake.

All is going great around here! Tomorrow we're going to church, meeting friends for lunch and going to our brand new small group (from our new church). Today we pretty much laid low and chilled as a family. It's been just totally super.

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Well, that's it. Kudos to you if you read it all!

Good night!

miracle

12:26 p.m., Frozen Tundra Time (that's CENTRAL Frozen Tundra Time) and Comments are closed! Thank you so much for your love, generosity, prayers and support!

So, we got our miracle.

Is this where it ends? Stellan survives, God gets the glory, we declare that our prayers worked, pat ourselves on the back and carry on?

I think not.

But see, I'm not sure exactly what I do think about this miracle thing. Where to go from here, mentally. I've been struggling with my thoughts and I want to share.

You may notice that the Praying For Stellan map is gone. I hope it encouraged you to see that those very near to you, as well as those far away, were joining you in prayer for our son. No words could convey what it has felt like for us to know that across the country, thousands of people who I have come to call my friends have been praying for Stellan and continue to pray for his recovery. Some sent pictures, some sent emails, some Tweeted, Facebook messaged, some called, while others may have looked on silently, lifting quiet prayers in their minds. Many of you let us know that you were praying, but God Himself knows our hearts, and knows each of you by name. He knew everyone who was praying, even if you didn't share it with us or pinpoint yourself on the digital map.

What an unspeakable honor is has been for us that you took a moment of your time to lift Stellan to God for healing. It was amazing to see that some of you specifically felt called to pray for the doctors (And they needed it! We know that it was a combination of intense research, careful planning, skill and an unscripted last minute effort to get to the spot that resulted in this success.), others were praying for our other children, our family, my marriage, for me and my own fears. We were together praying and it's been humbling to consider.

Thank you isn't a big enough statement. What has happened is so much bigger. But thank you.

But what has been gnawing on my mind lately is the same feeling I had when Stellan was born, alive and healthy. It is confounding my mind and puzzling my brain, humbling me and bringing me to tears when I think about our miracle as it relates to other people. While at the same time that Stellan's procedure was successful, other families did not get their prayers answered the way they wanted. While for Stellan, the doctors hit a home run, for others, who are just as prayed for, loved and special, their child faces more hospital stays, more interventions and more medicines. Children died this week. Children who were every bit as loved and important. Children whose names were also lifted to God, with parents and families and friends who went to Him with the same fervent spirit that you did, that we all did. But there are children who, even so, were not healed on earth.

That just doesn't make sense to me, or to my husband. He and I were walking hand in hand outside the hospital after Stellan's ablation, while he was recovering and needed absolute quiet, and he looked over at me and said, "I feel like we cheated. He beats the odds, so many times. But what about other families? I kind of feel, I don't know, like we cheated somehow." And I knew exactly how he felt, as I have been having those same thoughts. Why some children and not others? Why our child but not the child in another bed in the same hospital? Why Stellan, but not another little boy or girl, equally beloved, equally valued, equally prayed for?

The answer? I don't know.

It is pretty clear from reading the Bible that we are not meant to understand God's ways, we aren't created to make those decisions about what type of healing arrives, what plan God has for any family. Our human brains are not equipped to wrap our minds around what form miracles come in. We just weren't created to have that huge responsibility, or to understand why God is God. God didn't grant us that knowledge of Him. He gives us only glimpses of Himself, not the whole picture. But He does give us something. He gives us faith. It is faith that can help us to accept what He allows to come our way, and faith that He will give us the strength and judgment and wisdom to keep going, especially if we do not get the miracle we wanted.

It is so easy now for me to sit here and say I would have trusted God no matter what, even if Stellan had died. But the truth is, finding the miracle in the situation when a child dies is something I do not understand. The kind of faith it takes to walk the road that many of you have walked and are walking is something extraordinary that I have not tapped into.

This time last week, I was writing about my deep, deep fear and loneliness. Yet God met me there. He met me in my loneliness and my fear of grief and loss. In a beautiful showing of the body of Christ, He provided a strong husband to support me while I wept, friends and family to listen and help, sisters and brothers in Christ, many of whom I've never met as they know us only from the Internet, to hold me up in prayer and to encourage me. He met me there and walked me through when all I could do was put one foot in front of the other. And He chose to allow the doctors to fix Stellan's heart.

And I'm just struggling with what my response is to that. While our son is recovering, other sons and daughters are not. We are reunited as a family of six, yet other families are separated because of death. I could not be more grateful for our healing miracle, but at the same time my husband and I are grieving anew with those who grieve. It is unfair and beyond our grasp of comprehension.

So, the map goes down. To all 17,461 who signed it and prayed, thank you. Thank you to everyone who interceded for Stellan. But don't stop praying. There are sick children, hurting families, new diagnoses, and accidents yet to happen. As you cry out to God, be still and listen. Let God speak to you. Hear His voice urging you to pray for so many, many sick children. And please give as you are able.

As many of you know, since we added ads to mckmama.com in the spring, we've been making money from my blog. At first, we solely used the ad money to support organizations and ministries we believe in. Organizations that rallied around us in shows of support and love. We still do give from the money our blog makes, and now even able to help support our family with it.

We have never been comfortable making money from my blog when Stellan was sick and in crisis with his SVT. To that end, we donate much of our ad money monthly, and even more when he's hospitalized. Giving is naturally something we usually keep private, as I'm sure you do. But today, we want to give back in a public way, on my blog, in hopes that you will be inspired to join us in donating!

You see, I've spent a lot of time thinking about the miracle we got and the harsh unfairness of it all from an earthly standpoint. Indeed, I'll never know why Stellan lives here with us while other children receive their healing in Heaven, leaving their parents with empty arms on earth. I will never understand that. It saddens me and sometimes angers me and often leaves me feeling guilty that my son survived when others don't.

And while I cannot know the mind of God or change the outcome for other parents, I can strive to do what I can here on earth with what I have been given. I've said it before and I'll say it again: We are 100% positive that God did not allow Stellan's story to spread around the internet so that I could grow my blog and my family could become rich and famous. That is not our goal and it never will be. While we are thankful for the unique ways He is providing for our family, we could not be more sure that He wants us to give back generously and to share about Him, for He is the true famous One.

In fact, this is what He wants all believers to do.

Won't you join me? Today, from now until noon, Frozen Tundra time, we will donate $1 for every comment left on this post to charity. We are going to split the donation among the following foundations we believe strongly in (And they don't know yet that we are doing this.): Sufficient Grace (who walks alongside families who have lost a child), String of Pearls (who supports families facing a fatal prenatal diagnosis for their unborn child) and the Liz Logelin Foundation (who rallies around families who lose a spouse, life partner and parent for their child).

As I said, we will donate $1 for every comment left on this post between now and noon. All you need to do is comment and we'll throw another dollar in the pot. And wouldn't it be amazing if some of you pledged in your comment to also donate just $1? Please let me know if you plan to do that as well. But even if you can spare nothing but a comment today, please do so. (If you can't get your comment to go through, or don't know how, just email and I'll count that, too!) We would be honored to support these organizations in the work they do with hurting families. We may have gotten our miracle in baby Stellan, but we are far from finished walking alongside other families as they get theirs, whether it come in the form of healing on earth or emotional healing after a loss.

Won't you please join us?

Home sweet...

...home!!

Stellan napped (Twice!) on the flight home, babbled to the jolly gentleman next to us and drank a ton of milk to bide his time. Before we knew it, we were thrust into the waiting arms of my husband and Stellan's three siblings.

Home sweet home!!

We came home to a clean house, replete with orange balloons, welcome home signs and a cake thanks to some of my amazing friends who were busy little fairies during the time my family came to get us at the airport. Lots of family time, playing, a lovely dinner and plenty of laughs filled our afternoon. Then came our Thank You Jesus That Stellan Is Free From SVT time of prayer, celebration and cake, just the six of us.

I'll have more to share tomorrow...and some fun blog things to jump back into soon, now that life is (Gasp!) going to go back to normal (What is that!?) soon (Wow.).

But for now, it's back to spend some more time with the most important people on earth to me.

a jet plane and pirates

Sing with me now!

Leeeeeeaving on a jet plaaaane. Don't knooooow when IIIIII'll be back agaaaaaaain.

(Hopefully never. At least not under these circumstances.)

Goodbye, Boston! You have treated us well. Very well. But it's time for Stellan and me to leave on a jet plane and head back home. There are four sets of open arms waiting for us there this afternoon.

And speaking of singing.

Now Prince Charming and I share something decidedly not in common with the Veggie Tales' Pirates Who Don't Do Anything. You know. The ones who "have never been to Boston in the fall."



(Many thanks to Amanda G. for the clever pirates take. She commented this [Yes! I still read all my comments!!] the other day and I giggled with delight at the "Boston in the fall" reference. Plus, if you listen carefully, you'll see that Stellan has more than one thing not in common with those guys as well. Most notably that he looks very "good in leggings." At least I sure think so.)

Yes, Boston. In the fall. We certainly have a wonderful affinity for this city now. Her people are delightful, her doctors fantabulous. And the buildings and parks and historic sights and brick sidewalks?

Well, just see for yourself:



(We were so excited that Stellan's surgery went so well. This is Prince Charming's excited pose, I guess.)



(A fence.)



(Me.)



(Boston Public Garden.)



(Functioning shutters on Beacon Hill.)



(Look like a tourist much?)



(Self explanatory.)



("Where to next?")



("How do I focus on your face?")



(Boston Public Garden.)



(I liked this door because it was tiny. But it's hard to tell that in this photo with nothing to compare its size to. So just take my word for it. So cute.)



(Make way for ducklings!)



(Bricks.)



(Cemetery.)



(I liked what the tree roots did to the brick sidewalks. Would hate to shovel it in the winter, though. What am I saying? I hate to shovel anything in the winter.)



(George Washington.)



(I liked the mailbox.)



(She was running but stopped, looking for "an excuse to stop running" to see if we needed help with directions. We did. We must have looked lost. Also, like tourists.)



(Kind of like this.)



(Prince Charming, walking.)



(Flower boxes.)



(Again with the mailbox.)



(This one's for my sister!)



(We looked, but never did see Paul Revere's grave. It's possible we were at the wrong cemetery. Not sure.)



(And another fence.)

Okay! That's enough Boston for now. The next time you see all of us, we'll be snug as six bugs in a rug back home in our hats and scarves in the Frozen Tundra.

Until then!

missing

I'm missing this sweet girl.



And her sweet arm, and her soft neck, and her contagious laugh, and her feisty spirit, and her pink room, and her wild hair, and her loving voice.

And her big brothers. And her daddy.

I'm missing them.

But it won't be much longer until we are all together again! Stellan is out of the hospital and we are flying home tomorrow!!!

I'm so giddy.

We just walked to the place we're staying (It's chilly out now!!). Baby boy took a good nap, we cuddled and then I gave him a sponge bath. Using oils, I got off tons of the sticky stuff Stellan was literally covered in. From tagedarm strips that held his lines in place to tapes, from the tacky gel of his cardiac monitor leads to the bandage that held his pulse oximeter in place, even the big defibrillator pads that were used when his heart stopped and went crazy were adhesive and stuck to him all day Monday. Man. 3M has their work cut out for them, that's for sure!

So, Stellan is dressed in big boy clothes and is unstickyfied now. Well, at least he's less tacky than before! We just ate some beans (Thrilling account I'm giving, I know! I'm actually pumped to start talking about normal family stuff again soon!!!) and are going to head back to the hospital to fill his prescription for blood thinner. Dr. A wants him on it for three months.

But no other drugs or monitors or vagal maneuvers or stethoscopes or hospitalizations or adenosine or ivs or 'round the clock med doses are in our future.

Just this sweet girl...



...and her three brothers and her daddy and me.

Soon.

Game over!!!!

Yes, indeed. On Monday, it was a home run. Stellan's team pulled ahead. It looked like a win, but we were not sure. Now it's official. Game over! The winner? Team orange! The loser? SVT.

During Stellan's esophageal study this morning, Dr. A was entirely unable to trigger SVT in our little trooper. He had his heart going 190 beats a minute and still Stellan's heart could not "find" his extra pathway.

And that, my friends, is because Stellan's extra pathway, which caused his heart to sometimes beat dangerously fast, is now completely gone.

Yes, indeed. We are looking at around a 1% chance that Stellan will ever have SVT again. Unbelievable.

Game over. I cannot believe it. Someone pinch me. Wow.

And Stellan's ECHO? Perfect. No valve regurgitation at all and his ventricular function is excellent! Stellan is in the recovery room now and I'm told I can go see him shortly.

Dr. A said that two things persist, however. But they should not significantly affect Stellan's well being whatsoever. They are just important to note in case he ever needs a central line or femoral access again. But, as Dr. A put, based on the outcome of today's tests, the next time Stellan needs medical intervention like that could likely not be until our little babe is 70 years old! So hopefully these will not be big factors.

But factors they are, albeit small compared to the SVT that is now gone. (Wow. Gone.) Anyway, as they were looking with ultrasound (I think that's how they looked) at Stellan's arteries and veins, Dr. A could see that Stellan's femoral artery is permanently damaged. The pulse in Stellan's foot is very poor still. He said it is still only faintly detected by Doppler. However, the pulse in his groin is strong. Bodies have an amazing capacity to find solutions to problems and Dr. A suspects that Stellan's blood is already finding new ways around. As time goes on, hopefully new branches of his arterial "tree" in his right leg will pick up the slack. And his foot is pink so oxygen definitely is getting there, but there is simply not near the blood flow all the way down his right leg as there used to be.

Dr. A also mentioned that, as he could tell during Stellan's ablation and as the intensivist back home at the PICU in the Frozen Tundra also noted when trying to put in a central line a couple weeks ago, there has been permanent (now healed) damage to the veins in Stellan's right neck. This likely happened as a result of all the digging around for access that has been done in his neck, both during his first ablation and as a result of the central lines he's had there. Stellan's jugular vein is no longer connected to the superior vena cava like it used to be. When trying to thread from the top of the jugular vein and even from within the heart coming out the superior vena cava, both veins just kind of dead ended and peeled off to the side a little instead of connecting like they used to. Again, Stellan's body has clearly already figured a way for blood to get around anyway, as indicated by his face not being all puffy and such. So Dr. A does not anticipate this being a problem for Stellan per se, it just affects the ability to gain central access to his heart if he were need catheter procedures or central lines again. In fact, it did make things trickier than expected for Dr. A and his team on Monday and was another reason they decided to take a more risky, innovative approach to access his heart.

But everyone feels very strongly, my husband and myself included, that these issues are a small price to pay for the fact that it is now game over for Stellan's SVT!!!!!!

We are waiting to hear how soon Stellan can be discharged. Not sure yet. His lungs are still junky, but nothing severe. His vomiting has ceased. He's doing great! Stellan is going to go on blood thinners for a while, since the doctors spent a great deal of time on the "brain side" of his heart. Blood clots and therefore stroke are possible complications post a heavy duty ablation like Stellan's. Dr. A said he'd like us to see Dr. B in a couple weeks and probably do a Holter monitor at that point, too. Even though his SVT is gone (It's gone!!), Dr. A said because Stellan has been so unique, he'd like to follow him closer than he would a regular SVT patient who had been ablated. Just in case. But he said there is no reason not to consider treating Stellan like a perfect, SVT free child. So, we'll follow up plenty with Dr. B I'm sure, but there is no reason to think that it is anything but game over now.

Wow!! Game over, SVT. See ya later! Wait...I mean, see ya never!

hoping

UPDATE, 9:55 am:

Dr. A just came in and said he did a very aggressive esophageal study and was absolutely unable to trigger SVT in Stellan using any means!!!!!!!!!!!!!! He said he feels confident that there is only about a 1% chance Stellan's SVT will ever be a problem for him again!!!!!!!

UPDATE, 9:03 am (Boston time):

Stellan has been gone for an hour. If his esophageal study went well, it should be done very soon. Dr. A was going to come up and tell me how it went once that part was over. Then someone else will do his ECHO while he's still asleep. I haven't heard anything yet, but it should be soon!

ORIGINAL POST:

In spite of being NPO (not being allowed to take any food or drink by mouth) since midnight, Stellan had a pretty good morning. He is ever so much less swollen and didn't vomit much more in the night. He is breathing room air now, too!



Well, not right now, he's not. A short bit ago, the anesthesiologists and one of the cardiology fellows came and wheeled Stellan away. It was time for him to get intubated in preparation for his esophageal study and ECHO this morning. By the time I publish this, he should be asleep and the tests should have begun. I don't expect that if everything goes well it should take over an hour.



As I said before, this is a big day for Stellan. Dr. A and his team want to see if Stellan's aortic valve was damaged when they put their catheters through it on Monday. And, of profound importance, is knowledge of if they really did get Stellan's pathway. The test? To put probes on catheters down Stellan's throat while he is sleeping. Once they are down far enough to be even with his heart, they use electrical stimulation to try to trigger his heart into SVT. They are going to try very intensely to see if they can. If the pathway is totally dead and there is no other pathway, his heart will not be able to go into SVT, no matter how hard they try. It just won't.

If his study is anything like the one he had (and failed) last time in April, they will also put adrenaline into Stellan to see if they can trigger SVT that way.

So, one more morning of waiting. And if we get the huge doubly positive outcome that we would like, Stellan can be outta here with no more tubes, sedations, drugs, tests, pokes, intubations, leads, wires and ivs very, very soon.



Hoping!

the two t's

Tired. Thankful.

Even though my mind is adrift on a sea of many more thoughts and emotions, these two t's seem prominent. I am tired. And I am thankful.

Stellan is tired, too. And I bet he'd be thankful if he could really grasp what has just happened. But I'm thankful enough for the both of us for the time being. He's pooped, tuckered, beat. His poor body has been through so much (to put it lightly), it's a wonder he is able to open his eyes at all.



He is, though, and we spent the entire day cuddling.

And as for me, I didn't realize just how tired I was until I crashed on Monday night. I have been jacked up on adrenaline for days and days and days, with unspeakable surges of it on Monday. The worry and fear have wreaked havoc on my body. I bottomed out. I hit the wall once the adrenaline finally died down. I certainly haven't been showering or putting on makeup. Nor have I been sleeping well or eating well or even thinking well for quite some time. I've been chock full of intense emotion for my son.

And so now I'm tired.

But also thankful.

Much like I was on Monday night, shortly after I got the news about Stellan's home run. I was elated, but exhausted. Thankful, but tired. When the news called and asked for "a quick interview" outside the hospital, I was very willing to share our joy. My husband wasn't even there yet and I figured I'd chat with them to bide the time until he arrived.

What happened was that just as I was about to start talking to them, thankful, dreadfully tired me that I was, my husband appeared on the sidewalk! He'd made it from the airport earlier than I thought. The camera caught us embracing and then we carried on with an interview, first me, and then him, since he was there and all!

I was tired, but I hope my thankfulness shone through in spite of my weary state. The whole interview is right here. It's not edited or shortened, although I certainly hope they made it more concise when they showed it on tv! I can tend to, ahem, talk a lot.

As I am fairly certain I've already mentioned, I was tired and thankful then. And, if it's possible, I'm even moreso tonight. Also, I'm getting sick, a sore throat and a congested head, but I'm not going to complain about that.

Tomorrow is a big day for Stellan, and this remains all about him. At 8:30 am are his esophageal study and ECHO. When those are over, we should have a pretty clear view of the future from here.

I'm excited, nervous, thankful...and tired.

Goodnight.

Wednesday afternoon Stellan update

So many thoughts rushing through my head. Still sorting them. Let's see. Medical details and such:

My husband left this morning. We had an unbelievably great time while he was here; it wasn't too terribly hard to see him go. For one, I was pretty much still sleeping when he left and for two, I am thrilled that our other three children, who we hear are doing well but missing us, will be with Daddy again today.

Stellan is doing famously. He is out of the CICU and awake. He's still very groggy and crabby, but is ever so much more alert than yesterday. Everyone is entirely past any worry of brain damage. He's still on IV Lasix to help with the fluid retention that persists.

As I was writing this post, Stellan woke from a sound sleep and just vomited all over. We got that all cleaned up and he seems happier than ever. He's probably very unhappy again now, because they just took him to the procedure room to try to get some kind of access again. His IV's keep going bad for some reason.

The pulse in Stellan's foot is still very poor. But the great news is that the pulse behind his knee is coming back and his leg and foot are pinker and warmer. There is little worry left that the hematoma will have created a lasting problem.

Stellan's cough is more productive today and although his lungs are still junky, he is being successfully weaned of O2 in his nasal cannula and is staying pretty well saturated on his own. The final result of the cultures of his lung junk is still not back, but he is doing so very well that they may not even start him on a specific antibiotic after all.

The only meds Stellan is on right now are some diuretics and Tylenol. That's it! No heavy pain meds, no heart meds, no antibiotics (they were about to start general ones before the full cultures came back, but they held off since Stellan was not worsening). Nothing! It is amazing.

Stellan has been able to drink today and has done so well. The vomiting is not good, but I honestly think that might just be due to the fact that he drank so much today. He will have to go NPO this evening sometime, in preparation for his esophageal study and sedated ECHO tomorrow, slated to begin at 8:30 am.

Tomorrow morning will be huge for Stellan. Huge. If the cardiologists are not able to induce SVT through his esophagus and if his aortic valve and related function look good on ECHO, Stellan will be very much on track to being discharged soon so we can fly back to the Frozen Tundra! If for some reason one or both of those tests do not have a good outcome, well, I'd rather not think about that right now.

For now, I'll just keep snuggling my sleepy boy once he returns from (hopefully successfully) having a new line placed.

Thanks so much for all your prayers, well wishes, emails, Tweets, Facebook replies and all around good cheer. We heart you all!

look up

This past Sunday morning, before the chaos of the day began for Stellan, I took him on a stroll through the grounds at Harvard Medical School. It was a delicious, unseasonably warm morning. I delighted in watching Stellan frolic and play in the sun.





(The bench photos had the potential to be dreadfully cute, but I was seriously worried he'd fall off, so I took him down, but not before I got a few cute shots. Man, that was a long sentence.)







(Look, Ma. I found a leaf!)





(Doing leg lifts?)















(Does this photo crack you up as much as it cracks me up?)







I will have a pretty detailed update about exactly how Stellan is doing right now coming shortly. Things continue to look up and we are oh so hopeful that Stellan will be frolicking and playing in the sun once again very, very soon.

hurdles

Stellan has come a long way, baby.

He has a few more hurdles to overcome if he wants to get out of the CICU and get closer to going home, though. Which, of course, I know he does.

His right leg is doing so much better! There is a pulse in his foot now that can be heard by Doppler. His leg is also less grey and less cold. With a little more time (and a little more IV Heparin!), we are hopeful that full blood flow will be restored to his leg.

Only time will ultimately tell if Stellan suffered any brain damage from the short time he was deprived of oxygen while he flatlined yesterday. He is extubated now, but still not exactly awake as we were thinking he might be. He is very groggy, puffy and tired. We have no reason to think he is brain damaged, as many of his reactions, and the look of his pupils, do seem quite on track, according to his nurses and doctors. But until he is fully awake and alert and acting like his normal Stellan self, we won't be absolutely sure.

On Thursday, Stellan will be put to sleep and taken back to the cath lab for an esophageal study. They will insert probes down his esophagus, next to his heart, and will try to trigger SVT. This is one way of double checking to make sure his SVT is, in fact, gone. You may remember from his first ablation in April that we thought the pathway was gone, but the esophageal study proved that is was not. However, Dr. A was less confident that he had gotten the pathway that time as well, so it wasn't an utter shock.

While he is sedated for the esophageal study, Stellan will also have a thorough ECHO of his heart. A few things they want to check are ventricular function and aortic valve function. Because going through the aorta during Stellan's ablation was risky, unplanned and not particularly common, they want to make sure they have dotted all their i's and crossed all their t's before declaring Stellan's ablation a success on all fronts.

The junk from Stellan's lungs is growing bacteria. The exact type is not yet known, but will be soon as more growth comes and is studied in the lab. For now, we just know that Stellan has something and it is being treated generally. A more specific antibiotic may be given once we know what kind of bacteria is in there exactly. Stellan is hoarse, has a junky cough, a scratchy throat and very "wet" lungs. Some of that is from the junky bacteria in his lungs and some is just a byproduct of being intubated twice in the past couple weeks.

We haven't been given a timeline as far as when Stellan can get discharged and leave Boston, but we do know he needs to jump these hurdles first. My husband leaves tomorrow and will pick up our other children and bring them home. They are doing very well! We are looking forward to reuniting our children back in the Frozen Tundra soon!

he

He is finally right where he belongs.



And, incidentally, so is he.



It kind of works out nice like that.



For both of them.

+ and -

+ My husband is here!

+ Stellan had a pretty stable night with no surprise SVT.

+ Dr. A was in this morning and said if Stellan was going to show us that the pathway was not dead, he probably would have done it by now. He also said that Stellan has never indicated having any other tachycardia mechanism in his heart. In other words: We are talking here about a baby that we all now pretty solidly believe will never have SVT again. Ever.

- Stellan has no pulse at all in his right leg. No pulse can be felt by hand and no pulse can even be heard by Doppler. His right leg (and foot and toes especially) is cold, grey and smaller than his left leg. Because the doctors had a very hard time poking around and getting some arterial and venous lines started, especially in that leg, a rather large hematoma was created. It's a blood clot/bruise around Stellan's artery right in his groin. Right now, it is restricting blood flow to and from his right leg. He has been on blood thinners all night to try to break up the clot so blood flow can be restored. We aren't having a lot of success yet. He could definitely use prayer for this situation.

- Stellan has a fever.

+ The entry sites in his neck are looking great and perfectly normal today.



- Stellan's lung cultures came back with bacteria growth. He has yellow junk coming from his lungs. Because there was growth over the night, he'll start on antibiotics soon. He's obviously still in the CICU (Cardiac Intensive Care Unit) today.

+ His blood pressure is perfect!

- Stellan is having a bit of a hard time diuresing fluid. He was given lots of fluid yesterday during the time he was crashing, to help his blood pressure come back. And now, that fluid is in his tissues and his lungs. They don't want to start to turn down the vent or extubate him until he can get rid of more fluid. They were hoping he'd get rid of it in the night so they could extubate this morning, but that didn't happen.

- Because narcotics can also cause you to have breathing trouble, and since the goal is to get Stellan off the ventilator today, they have turned down his narcotics and put him on a fast acting drip in his iv of a sedative. They need him to lay (lie?) still so he doesn't pull his vent tube out. But he is right on the verge of awake and asleep. Any tiny noise is stirring him and causing him to be very agitated. We were with him until this morning, but his nurse said it would really be safer for him to have complete calm and quiet for a few hours. So rather than further cause him to be worked up, Prince Charming and I are going to spend the rest of the morning away from the CICU and let Stellan rest. Hopefully, he will keep working on getting rid of his fluid!

+ I have lots to say about you, God and Stellan's amazing successful surgery. My husband and I can't stop talking about it. I'll share more later about how these things are impacting us. But for now, our complete focus is still on Stellan. We may have won the battle, but we're focused on him until he wins this war!!

It's going, it's going...

...it's gone!!

It's outta the park!!

My family and friends have been trembling, weeping, rejoicing and manic phone calling each other for long enough. It's time for me to let you in on our unbelievable news.

IT'S A HOME RUN!!!!!!!

Just call me "me of little faith," I guess. I was floored, shocked, utterly speechless when Dr. A came in and put his hand on my shoulder and said that Stellan's ablation was indeed the home run we had all only dared dream about.

You heard me right.

This morning, Stellan flat lined on the table in front of me, lost his blood pressure nearly completely and needed to be shocked back to life.

And tonight, his heart beats in perfect sinus rhythm. His is totally and utterly SVT free and there's not a pacemaker in sight.

We are in awe. Absolute, utter, amazing awe. My husband missed the game completely. In fact, he's still in the air. But I was able to share the good news with him before he took off. He'll be here for the after party, though.

Don't get me wrong, there are hurdles still. An esophageal study on Thursday to make sure the SVT doesn't come back (Dr. A said there is "little" chance of that, though.) and Stellan has yellow gunk in his lungs and a fever, so those things are being attended to.

But it looks almost without a doubt that today was a home run.

All of the planned means of tackling Stellan's SVT today during his ablation failed initially. Heart block was induced each and every time from each and every angle they tried to ablate. Dr. A and his team were left with little choice but to ablate Stellan's AV node in order to get rid of his accessory pathway. But before they did, one of Dr. A's colleagues threw out a wild idea.

"Let's try to go through his aorta."

Not in the plan. Not even in the possible or hypothetical plans. Not considered safe or feasible or wise on a 10 kilo baby. But with few options left before destroying Stellan's node, they decided to risk it.

To be honest, I'm glad I didn't know about it at the time.

So from his groin, they threaded the catheter up into his aorta, down into his atrium and through his valve toward his ventricle. From that angle, even though Dr. A said they were in the exact same spot as they'd tried ablating earlier, there was a money shot. He tried cryoablation. It started to zap his SVT with no heart block. So he tried a little more cryo. Again, no heart block.

So Dr. A pulled out the big dog. The radio frequency ablation catheter. His ultimate goal was to get 2 to 3 seconds of ablating done, even if it destroyed his node.

1 second. 2 seconds. 3, 4, 5.

From that angle, through the aorta, Stellan's AV node remained untouched.

Unbelievably, Dr. A was able to crank up the wattage and ablate Stellan's extra pathway for one solid minute before declaring his pathway dead on arrival.

And his AV node is as happy as the day is long.

So that's that. Stellan, who nearly died on us this morning, is SVT free tonight. To God be the glory, great things He hath done!

And the crowd goes wild.

a shiny gem

UPDATE, 5:11 pm:

My husband just missed his second flight. He was supposed to arrive in Boston at 6:30 and now it will be more like a quarter to 8. I'm pretty upset at the whole deal, very tired from this long day and weary in general.

No new word on Stellan. And it's dark out.

UPDATE, 4:19 pm:

We just heard up from where Stellan is again. They have not ablated yet. Apparently it's been complicated.

I do know that they were able to get some access into Stellan. Right now they are still "mapping" his heart. They are using some special, custom made "tools" to do that. Dr. A wants to be very precisely sure he is in the exact right spot before he tries ablating. He is going to ablate with radio frequency. It basically "burns" the area it is in contact with and the surrounding tissue, too. But that step has not happened yet, I know.

I'll keep you posted. I'm doing okay. I did take a break and rest on the chair holding Stellan's blue blanket over my head. I just needed to decompress in a different way. It was good, but being alone with my thoughts was not as relaxing as I'd hoped, so I got up and started drinking chocolate milk. But no matter what I do, my babe is not off my mind. I love you Stellan!!

And I am so not Facebook savvy, so I only just now realized that a bunch of people who are have been tagging (um, or something) photos with my name that they are taking today in support of Stellan. Wow. What a sweet surprise!

UPDATE, 2:49 pm:

Just when we were told to not hear any update again, we heard one.

It's includes a praise!

Stellan is off all his heart meds now...his anti arrhythmics and beta blockers he was on since yesterday to try to stop his SVT. He was supposed to be off all of those for two days before his ablation. Then, they were going to turn them off two hours before. That didn't happen.

But, they did just turn them off a short bit ago and the great news is that Stellan's blood pressure, while still low, is holding its own!! Yippee!!

He is still in SVT, although that is hardly a surprise.

UPDATE, 2:25 pm (Boston time):

We just got our first call up from the cath lab with a report on how things are going with Stellan.

For whatever reason, they were not able to get access in Stellan's right groin as they had hoped. They tried very long and hard. They've abandoned that at this point and are going to have to use his left side only. But he has a central venous line there, so it sounds like they are having to finagle a few things around, move that line, etc., so that they can gain access for one of the catheters in Stellan's left groin. Let's pray that they are able to get the access they need there. No word on if they have been able to get the catheters they need in his neck yet.

So, the ablation itself has not begun. They are still working on getting the lines they need into Stellan so they can get their equipment in and begin.

ORIGINAL POST:

After a morning of instability, dreadfully low blood pressures and SVT that was taking a huge toll on Stellan, Dr. A decided even though Stellan wasn't super stable, it was time to bring him down for his ablation.

So this is our shiny gem's big day.



Stellan got some blood transfusions, lots of snuggles from Mama, many pushes of Albumin, head caresses, more meds than I can remember, a catheter, rectal thermometer, two ART lines, lullabies sung by me and lots of attention from the doctors and nurses in the CICU.

At some point this morning, while the team was working to get Stellan out of SVT, right before my very eyes, Stellan's line went flat. His heart essentially stopped and he was asystolic for about four or five screens. I could hardly describe here how it felt to see that. I was frozen, numb, and sick at once. I vomited, stayed by Stellan's side, and watched as the team got Stellan's heart started again. It was terrifying. I just remember thinking to myself, "Am I watching Stellan die?"



Stellan did not die. His is our shiny gem and we are so thankful he is still here with us.

Stellan has used up his reserves, though. His heart and his body are beyond pooped out. His blood pressure is still low and he's is rough shape. These factors make his ablation even more necessary and even more risky. I have been begging God to spare our son, to bring him out of surgery. I don't care if he needs a pacemaker or seven. I just want our baby to live. My husband is on a plane now, heading east. I long to see Stellan in his Daddy's arms.

I feel a peace surrounding us. Yes, it is Stellan's big day. He is a shiny gem. I want so badly to have the faith that he will show 'em all and will emerge brilliant.

And for now, I just wait and see how our shiny gem will do.