6 years ago he went down the single ventricle path and today he is a stable bivent.

Tiernan has been talking a lot about this first Santa meeting. 

Wednesday we had his cardiology checkup. It was the first one since September!  That is the longest between visits since well before his bivent surgery. He continues to thrive and blow us all away with his energy and vocabulary. (He's especially fond of adverbs.)

Today also meant labs for the first time in 2 months. He was NOT as excited about this part of the visit. But when we arrived, there were Santa and Mrs. Claus waiting to see kids! He chose to do his blood draw first (see below for photos of that awesomeness) and then went and told them all about when they came to see him 6 years ago. He and Sammy left with some gifts and we made our way to cardiology. 

A bit more about the labs:

He has always screamed and fought it like crazy. I would have to hold him on my lap and hold his arm still so the phlebotomist could get the draw. Today he did this! Sat all by himself and acted like it was NOTHING!  

All smiles. 

Watched him put the needle in and only winced a little. 

Applied pressure and didn't even bleed or bruise at all. 

Later when I asked what his favorite part of the day was, he pointed to his arm and smiled. I asked why and he said, "Because I was so brave!"

Mine too little man. 

More about his checkup. 

Weight: He's gained a few pounds since September. I'm surprised it wasn't more,  given the amount of curry the kid puts away. 

Height: not showing significant growth since September but Dr. P doesn't think that's too surprising when considering his body has been focusing on more important things. IF he still doesn't shoot up in the next 6 months then he may need to see an endocrinologist to see what's going on. 

Sats: 96. Right on. 

Tiernan was SO great. He generally is these days, but I am just so impressed with how he deals with his lot in life. 

He was as calm as they come during his echo and so it was finished in record time. 

Dr. Park came in and set this graph down in front of me. 

This is a look at his BNP. (Brain Natriuretic Peptide) 

Here is a guide that shows what those numbers mean. The bottom line is that Tiernan's BNP has been all over during the course of the past year and a half. His number on Wednesday was 75! Normal!  So relieved. 

The other news is that while his valve regurgitation is a bit worse, his left atrial dilation (enlargement) has improved!  So it is pretty much an even trade which leads Dr. Park to declare his heart pretty much unchanged...read: STABLE. 

The one med change we've made is to increase his Enalapril (blood pressure) to twice a day. He had been cautious because it had caused his BP to be too soft when he was post op. It also has a negative impact on The Kidneys so, due to his kidney failure status, he was only on the smallest possible dose. 

Now The Kidneys are happy (all his labs revealed beautiful numbers even his nephrologist will be proud of....which is really saying something). 

So it's time to up the offense and increase his Enalapril. 

Dr. Park thinks it is reasonable to hope we could get 10-15 years before he needs Dr. Hanley to get back in there. Until now he hasn't said more than 5. Of course we can't really tell, but that is a great new prognosis. 

And then Dr. Park said he didn't need to see Tiernan for SIX MONTHS!!!!!  We don't need to go back before JUNE!  That is only the second longest we've ever gone between appointments. And even better, no labs until then either. 

Except we have an appointment with Dr. Hanivold (nephrology) on the 29th and she WILL want to see how The Kidneys are handling the new increased Enalapril. But after THAT, then hopefully we will have several months between labs. Fingers crossed!

Memories and Looking Towards a Bright Future

We have been enjoying going through old photos and videos recently.  This photo was from August 29, 2009.  Tiernan was 10 days old. 
This is the last photo I have of Tiernan before we nearly lost him to undiagnosed CHD. 
These are the next photos I have. 

September 1, 2009.  2 days had passed and we were learning all about the numerous ways Tiernan's heart was not normal.  I couldn't go 30 minutes without bursting into tears. 

But here we are, 6 years later, and this is all I see.

The next member of the Class of 2028. This boy starts kindergarten in 10 days.

Unless we tell them, no one would EVER guess the life this boy has already lived. 

Today I chased him and his imagination around our neighborhood high school pretending to be spies and hiding from cars and the cross country team and the custodian. All so I could get photos of this milestone. 

(Thanks to fellow heart mama Elin for her inspired idea....and speaking of Elin. I secretly/not secretly anymore hope that her mighty girl, Maija will be Tiernan's girlfriend someday. She is just about the coolest 6 year old in the world....loves superheroes and Star Wars and ballet and archery and...I could go on for a long time.  She's rad. Does it really matter that she lives in Minnesota?  Oh. And Elin is a U of M Griz too. Seriously perfect.)

Anyway. I am so excited to see what life brings his way. And life better look out. He doesn't back down for CHDs, why should he back down for anything or anyone else?  

Mended Little Hearts and Some Very Special Friends

Tiernan and I got to go to the annual Mended Little Hearts Picnic last Sunday. We missed last year's bash due to surgery but this is one event we really try to attend. 

I'm so thankful for this group. The first meeting we attended was while Tiernan was still in the Mary Bridge PICU following his Christmas Eve Glenn. He would have just been extubated, the second time, perhaps the week earlier (maybe days) and we were grappling with the uncertainty of his heart condition as well as the news he would need a GJ tube. Favorite Nurse Jodi told us to go so we went. Understand how difficult it is to have both of us gone from his room at the same time. It's possible we wouldn't go unless some family member came to sit with him in our absence. I imagine that's what happened, because we walked across the street to the basement of Jackson Hall and found some people we had never met but "knew" instantly because of our shared experiences. When you go through something like this others will often ask how you do it. I don't always know how to answer that and usually say something like, oh, you just do it because you have to. But I think groups like this one are really the answer. We survive because we have other families with whom we can talk/cry/worry/research/laugh at our "not so funny to people outside the CHD world but really funny to us" jokes and comments/get advice on everything from giving meds to what sort diapers hold up best to high dose diuretics to Medical 504 plans when they get to school to.....to......to....

But MOST of all, we give and receive hope and encouragement. There is NOTHING that compares to sitting down with another mom who has gone before me in this and seeing their child running around before us. And there is nothing (outside of getting to be Tiernans mom) that makes all this more meaningful than being able to be that source of hope and encouragement and advice for someone else who is just beginning this journey. 

I know I have written before about the incredible heart moms God placed before me, but I want to mention Dana again because God REALLY knew what he was doing on this one. 

I work as a choir director for 10-13 year olds in a wonderful community near Tacoma. This year will be my 13th year at this school. Dana is one of the 6th grade teachers there as well. When I got there she had been there for awhile already and really knew what she was doing. Seriously. I was a bit intimidated by the standards set there. No lie. So several years in and she has this gorgeous baby named Alex. And Alex has heart defects. And she was on leave for most of that year and I remember her talking about the different challenges she had been having and here I am, pregnant with Tiernan and blissfully unaware of what God has in store. I remember being MASSIVELY pregnant the weeks before Tiernan arrived and reading an email from another work friend about Alex needing a pacemaker and I sat at my computer and said out loud to myself, "I canNOT imagine what she is going through!" 

Oh boy was I about to get a whole lot of first hand experience with it. 

The next thing I know we are in the midst of diagnoses and surgery plans and feeling lost and terrified. And I had forgotten about my resource (Dana) until I was sitting in the back of the ambulance that was transporting Tiernan up to Seattle from Mary Bridge. The transport nurse, AKA Favorite Nurse Lori, (have you picked up on the fact that we have a few of those?) was there and asking me getting to know you/take your mind off the fact your baby is in an ambulance questions, like, where do you work?  And when I told her, she brought up Dana!  Because, of COURSE she was a friend of hers and had taken care of Alex after his surgeries. This reminded me that I needed to get in touch with Dana and at some point over the following days I called her. 

Random fact about myself....I'm insecure about phone conversations. I don't like them even when I am talking with my best friends. Sometimes I don't even like being on the phone with my own mother. (Sorry mom). So to me, calling someone I've never called before (and if you remember back a few paragraphs someone I was a little intimidated by (it just occurred to me that Dana doesn't know that part....Hahahaha. Now she does.)) was stressful. So stress layered on stress and here I am, a bundle of nerves calling Dana and she answers and I'll never forget.

She said, "Carolyn! (Because my work peeps call me that) I am SO relieved to hear your voice!"

And then "Everything is going to be okay because he will go to Northwest Childrens Heart Care and he will have Jodi and they will take such good care of him."

You just don't know the relief that filled my heart and soul with that conversation. And it's all because she had gone before. It means more than anything. 

Since then, our boys have grown into 6 and 7 year olds who run around together pretending to be a giant caterpillar in the spray park. And Dana and I have walked this journey together. Through hospitalizations and feeding/eating/puking issues and losing our amazing surgeon Dr. Woods, to traveling to Stanford and all the questions and challenges that go along with that. 

And Tiernan and Alex get to walk their journeys together which is AWESOME!  The older they get, the more special that will become. I hope they always have one another to lean on in this life. 

There are SO many more mamas I have met on this journey who are so important to me. I am thankful beyond words to the families we know through MLH and also those I have met on FB. I'm very certain that is the best aspect of social media in this world. 

There is no way I would be as sane as I am if I didn't have Dana and the MANY others by my side.