Cardiology Appointment

Well, we didn't make it a year in-between cardiology appointments, but 6 months isn't too bad.  When we called Logan's cardiologist earlier in the year with concerns of his saturations dropping and him sleeping more he decided he needed to see us sooner than October.  We had that appointment on Monday.

We weren't sure how Logan would do with the Echo.  We knew it could either go really good if he decided to cooperate or really, really bad if he got nervous.  We were prepared with movies, suckers, books, cars, bubbles, Ipods... (you get the picture), we had an entire bag of tricks ready!  We didn't need any of it, he was AMAZING or "golden" as the tech doing the echo said.  He just layed there chillin' watching Dora and holding my hand.  The tech was able to get good images of everything they were needing. 

Now on to our visit with the Dr.  He was pleased with the Echo and said his heart was functioning as it should.  But then he started addressing my answer to the little paper you fill out for every appointment about if symptoms have changed.  Yes, he has blue spells, yes to change in breathing and exercise intolerance, and yes to a few more.  He had watched Logan dance around and saw how winded he got.  And I just mentioned how winded he gets simply walking 10 feet.  I thought this was normal single ventricle kid behavior.  I knew they had lower endurance with so little of their blood being oxygenated.  But Dr. Mack said Logan sounds extreme and he is getting too winded.  He literally gasps for air after any exertion.  He should be able to play a little more "normal."  His saturations have dropped from 86% when we were there in October to 77% this visit.  So after discussing many different options Dr. Mack felt like Logan needs to be sent to the Cath Lab to see if there are collaterals and narrowing in the Pulmonary Arteries.  After reviewing his x-ray he thinks the Pulmonary Arteries might have stenosis or scar tissure around them.  He also talked a lot about the Azgous Vein that he thought could be working against Logan getting more blood oxygenated. 

So this is where we sit... waiting for that DARN scheduling lady to call us to schedule his cath.  I know you heart moms know just how I feel.  I kind of thought maybe in a month or so they would get us into the lab, but Dr. Mack wanted us to monitor his saturations/HR a little more closely this week while he was sleeping and at different times.  So we have been communicating with him all week.  When I talked to him on Wednesday he had talked to Dr. Gray in the Cath Lab and was trying to get Logan in in the next week or two before we leave out of town on the 22nd.  This alarmed me that he was trying to get him in so fast.  So I have been a STRESS case all week.  I take my phone into the bathroom when I shower so I don't miss the scheduling call because who knows if you miss it when you will get back in touch!

  I have been OBSESSED with Logan's o2 sats.  I feel like I have been nieve and ignorant and completely negligent in monitoring him because I haven't monitored him at night for MONTHS and I only spot check him during the day for a few minutes while he is sitting on my lap.  The first night I watched his numbers as he slept, I just had that sick feeling in the pit of my stomach as I watched him drop into the 60's and see is HR go up to try and compensate.  The poor little guys heart is working overtime trying to compensate for lack of oxygenated blood.  I tried putting oxygen on him yesterday as he was again in the low 70's and dipping into the 60's with any exertion and I can not get him to leave the cannula on (or let me even get the cannula close to his nose)!  If he sits on the couch and watches a movie his numbers will get into the high 70's... so we are watching a lot of movies, doing blow by at night, and praying that they will find some answers in the Cath Lab soon. 

Look who went to Nursery!

It would probably be more appropriate to say, "Look who's mom finally allowed him to go to nursery!"

I had a friend over with her little baby a few weeks ago, and I couldn't believe how mean Logan was!  He wouldn't share and wanted to hit the baby... sheesh, what kind of mom am I!  Then it dawns on me, why would he know how to do those things... he has never had to do it before.  His brother and sister (okay and mom) give him whatever he wants and let's be honest he doesn't get out much!  So last Sunday when I was sitting home from Church with him and he was asking to watch a movie at 9 am, I decided it was time for Nursery.  He needs social interaction, and he needs something to do other than watch movies. 

My ward created as "germ free" of nursery as possible for him and told me to just let them know when we were ready to bring him.  The toys are only used for his nursery and there are only 5 kids (including him) in the nursery- all the other kids belong to the Primary Presidency and they have promised they won't bring them if they even suspect they are sick.  And heck, I figured he has already had RSV so why not!

He was so excited when I told him we were going.  He grabbed his essentials... Binky, blanket, and monkey and was ready to go!

 He went in looking like a baby! 

 (I did confiscate all his items before he left the car)!

 And came home looking like a big kid!

 Look at him walk with such confidence!  He loved nursery!  His teacher is AMAZING, and was so sweet with him.  He loved singing time and snacks, and didn't want to leave!  Oh, what was I so worried about!

Hello March

This is how we welcomed the first day of March... Our biggest snow storm of the year! 

The kids were thrilled, and this was the FIRST time Logan has been in the snow. 

He LOVED it!

 I would take him inside to warm him up and get color back to his lips and hands and then he would want to go right back out!  It was so fun to see him do things with the other kids. 

Good Riddance February

I know February is LONG gone, but just to be clear we are all very glad February is behind us!

It started out just fine....

We celebrated CHD awareness week and sported all of our red clothes all week.  My eyes have been so opened this last year and a half, and I hope to spread awareness of CHD's in some small way.

As a "heart mom" there are a few things that scare the hebee jeebees out of you (okay more than a few).  Top of the list is handing your child over for surgery and all that comes with that.  Surgery set aside the thing the doctors drill into your head that you NEED to protect your baby from is RSV.  A respiratory virus that is BRUTAL on any baby, but for a heart kid is never good.  To help protect our kids from this virus most heart kids will qualify for a shot called Synagis.  It is a monthly injection of antibodies that help protect against RSV... a very expensive monthly injection I might add- $6,100 a month.  Yes that is per month and no I didn't add an extra zero.  Logan qualified for 5 of these shots... you do the math!  We hit our out of pocket max the first week of January this year!

Anyway, Logan was lucky enough to contract RSV and pneumonia at the same time. 

 This is kind of how he felt all month!  Just YUCKY!  Thanks to the Synagis injections his case didn't require hospitalization.  We did visit the suction clinic at the new University of Utah Hospital in Daybreak- we were their very first patients, and got the royal treatment (although I don't think he thought it was that royal). 

  

 Despite it all Logan surprised us all and recovered really well.  His pediatrician saw him almost every day and kept waiting for him to get worse and he never did... yeah and a surprise to us all!

 These pictures made me laugh because Logan has to sit inside of EVERYTHING!  Whether he fits or not, he will try to weasel himself in there.

 Goodbye February, and all the yucky germs!



No More Sitting on the Side Lines

I feel like for the most part I have accepted the reality of Logan's heart, and I am okay with our reality. We have adjusted our lives as needed, but every once in awhile I feel the "unfairness" of it all. This has happened a few times in the last couple of weeks. One time being when the gym I work at hosted a Triathlon. It was for adults and kids. It was an indoor tri, and I was in charge of the biking segment. It was so fun to see people achieving things they never thought they could. I saw so many people do something for the first time, the kids actually made me tear up as they rushed from the pool, jumped on their bike and pedaled their little hearts out. My first thought was Logan will never be able to do this, but then I thought.... why not. Maybe he will be able to do this, he might not be the fastest, but I will let him try if that is something he wants to do.

Which leads me to the title of my post.... No more sitting on the side lines. Yes, Logan is still young, and there are lots of things he can't do. But I am tired of him having to sit on the side lines because of his heart. Ashlyn is off track right now, and is such a good sport about being okay with being home. We don't go many places because we don't want Logan to get sick, or he is constantly taking naps! But last week the kids asked when we could go swimming again. In one of my moments when I was thinking I was superwoman I decided we could go swimming. So I attempted to take all 3 kids swimming by myself. I usually will leave Logan with his babysitter when we do things like this, but I thought again how unfair it is. He is either at our house or his babysitters house ALL the time. The poor guy is bored and never gets out! So I brought him along. He was in total awe just walking into the rec center. Looking at all the people and things. He got really nervous and made me hold him. When we got to the pool he stared with his mouth open. He was so scared. I couldn't get him off the bench. I didn't push him, and we sat and watched the kids play for a minute. I kept asking if he wanted to go play and he would aggressively shake his head no! After about 15 min. of watching I convinced him to venture to the edge and just splash the water with his feet. Anyway, the whole hour we were there he never dared venture into the water unless I was holding him. I know this is "normal" for kids... water is frightening. But the whole experience left me feeling the "unfairness" of his heart defect. He was more nervous than normal because he NEVER gets out. Then when he finally got wet he turned so blue from the cold I had to wrap him in a towel and try to bring some color back to his lips and limbs. All the while his brother and sister where running around crazy completely oblivious to any kind of discomfort. As we sat by the side of the pool I realized I don't want Logan sitting on the sidelines his whole life. I want him to be able to live and run around crazy with his siblings. Brad and I talk all the time trying to figure out how to make this happen. How do we protect him, but at the same time not make him afraid of everything.  We want him to know his limits, but at the same time we don't want to make him paranoid and scared of trying anything new. When someone has that answer will you please share it with me!

As for now we will keep him in the game as much as possible.
Here he is playing the X-box Kinect- he won't let you think for even a minute he is too young to figure that out. It is a riot watching him jump and mimic what his siblings do.

And the car slippers were a gift from his babysitter... he insisted on wearing them ALL the time when he first got them!  He walks around the house saying "vroom vroom" holding a little match box car almost constantly! 

CHEESE!!  Look how big I am getting!

We took this picture on the 3 year birthday for a little Heart Angel Jake (his blanket is barely showing, but he was displaying it!  That is what you get when you have your 7 year old take the picture).  His mom started an incredible service of giving "Jakey's Blankies" to heart warriors.  Logan LOVES his Jakey Blankie.  To donate to this awesome service visit the button on the side of my blog for Jakey's Blankies.

A month of Celebration, Anniversaries, and Blessings

December/January are full of all sorts of Anniversaries for us. 

Last year before we left for Philadelphia we took the kids to build a bear.  To be honest, it sounds a bit cheesy.  But I was so heart sick about leaving Ashlyn and Tanner at home I was trying to think of anything I could do before we left to make our absence easier.  So we let them pick out an animal at build a bear and Brad and I kissed the little hearts that went inside the animals and told them that when they missed us or were sad they had our love in their stuffed animals.  Ashlyn has kept track all year of her bunny's birthday- the day they were put together at the mall.  December 20, 2010.  So this year on December 20th we had a birthday party for all of their animals.  Ashlyn's bunny, Tanner's dog, and Logan's bear.  Complete with birthday cake, singing and presents.  The kids were adorable they planned it all out, made the gifts and everything.  It was such a cute/fun night. 

This was last year when they were making their animals.

Christmas was absolutely delightful this year.  I loved it all (minus the few times the kids were so high on sugar there was no control!)

Christmas Eve we had our own little Nativity.

Ashlyn took her role as Mary very serious.  This is the only benefit in her eyes of being the only girl (she really wants a sister) but there is no debate on who gets to be Mary!

 Tanner as a Shepherd. 

This kid cracks me up- he has something against wearing costumes.  I couldn't get him to dress up for Halloween and he refused to wear the robe to be Joseph so we finally found a happy medium of a shepherd holding a lamb!

 Ashlyn really wanted Logan to be baby Jesus... look how big he is!  He is not a baby anymore!

 He made a pretty cute Shepherd when we could get him to hold still long enough to get his costume on!

Christmas was chaotic and so much fun!

 Tanner can never have too many puppies!

 Logan has a bit of an Elmo obsession that my sister Tiffany feeds more than anyone!

 Ashlyn rockin' her Rollerblades even in a skirt!

Brad and I were the crazy college students that crammed a wedding in between semesters.  So we celebrated our 11th Wedding Anniversary on the 27th.  Last year we spent our anniversary flying to Philly.  Our date consisted of leftover casserole at the Ronald McDonald House- which neither of us could stomach because we were so nervous.

This year we got to have dinner at Rodizios.  It was a lot better tasting and a lot more relaxing! 

December 30th last year

And this year... 

You've come a long way baby  BIG Boy!

New Year's Day we held our annual scones and bacon feast.  (Despite my paranoia of germs and Logan's anxiety in large groups- we had a huge crowd here.)  We have scones because it is a Gunnell family tradition.  Bacon because it literally saved our lives New Year's Day 2003 from carbon monoxide poisoning.  The smell of my mom cooking bacon woke me up just long enough to crawl up the stairs and pass out.  What a story!  But what a reminder about how lucky we are to be alive.

I was warned not to even look downstairs with all the chaos and kids... I didn't!  But it was great to celebrate with our family.  We love and appreciate all of their love and support.

We obviously didn't have our New Year's Party last year, instead we learned our little Logan was in heart failure. It was those instincts you get as parents that even though the numbers on the monitor are "okay" something wasn't right.  Thankfully the nurse didn't brush off our concerns because really there were no obvious reasons to be worried.  But we got the doctor in there and they did an echo and learned his little heart couldn't handle the repair that had been done.  This was devastating news, but we were so grateful to have caught this before we came home. 

(pic. New Year's Day last year)

And this year...

(who needs a Dr. he has it all figured out)!

 I have thought so much lately about the answers to prayers we have had this year.  And the blessings we are able to recognize sometimes only in hindsight... 

The other night Brad said seriously out of no where (it wasn't something we had been discussing)... it can't be coincidence that I just happened to get a job out of college in dental underwriting (we didn't even know what an underwriter did when he applied for the job, we were just desperate for a job)- which led to his job now in medical underwriting; which happens to be with one of the only insurance carriers in the state with a national network that allowed us the option of traveling out of state to CHOP.  Heavenly Father has a  plan and it was in motion long before we ever knew or recognized.  I don't believe it is coincidence.  And beyond being able to go to CHOP his job in the medical industry has been such a blessing.  We both comment to each other all the time how confusing insurance is.  Sometimes it is downright messy and a pain in the butt.  Bills not being paid right, codes not covered, things not being authed right.  Dealing with insurance can be a parents worst nightmare, and it has been such a blessing having a little more than normal knowledge in that regard.  He has spreadsheets of every procedure and bill for Logan that he matches to EOB's and claims paid.  This has saved us so much money and headaches! 

When the first surgery at CHOP was a bust... I was devastated and I really questioned why we felt so impressed to travel all that way.  I didn't have my answer until months later when we received all the medical notes and charts from our stay there.  As I read the transcripts of the doctor's notes from surgery( for both of his surgeries there) it was very clear to me that the right doctor operated on Logan for his particular circumstances.  We followed HOPE out there, and we never have to question if we did what was best for our baby.  Dr. Spray tried every means possible to save the right side of Logan's heart and make it functional.  He didn't give up at his first attempt.  One of the scary things about open heart surgery is the longer you are on bypass the more likely complications emerge.  For the amount of things Dr. Spray was able to do and try for Logan, he was on bypass for less than half the time he would have been with most other surgeons.  This brought me so much comfort knowing everything that could possibly be done had been done.  I couldn't be at peace with it otherwise.  I am okay with the limitations and things Logan will face and is facing in his life, but I find peace in knowing we tried to make those a little better.

Brad and I have both been blessed in our jobs.  His work has been so accommodating with Dr. appointments and time off.  Also offering the much needed insurance coverage.  Hitting our out of pocket max. in January was a blessing too... it made the millions of Dr. appointments throughout the year a little less stressful!

  My job teaching at the gym always seems to work out with the schedule our family needs.  I teach enough to keep me sane, but am not away from home very long.  We have a great neighbor that watches Logan while I am at the gym (and so we can have a date night every once in awhile).  She has been one of our greatest blessings this year.

We have family that never tires of hearing about oxygen levels, Dr. appointments and petty concerns.  We are so blessed. 

Ashlyn LOVES school and is healthy and happy.

Tanner also loves (not enough to capitalize every letter though) school, is healthy and happy.

I could go on and on and on.  I don't ask why us anymore.  I know Logan's heart is a gift and it has made our family better, closer, and so so grateful for everything.

Happy New Year!!

Look Who's Walking!

I know it has been awhile.  I keep telling myself these happy times are the times to be documenting.  We don't want to only remember the hard times of sickness and hospital visits, but the good/ fun times too.  Logan started walking the DAY after he got his tubes.  NO exaggeration.  We were all standing in the kitchen eating grapes and he decided he wanted one so up he went and walked right to Ashlyn to get one of her grapes.  The kids and I just sat there with our mouths open all wondering if that really just happened.  Then we screamed and clapped and made a huge deal of it.  We sent pictures to Dad at work, and got the video camera out.  It was a happy day.  Although after this he COULD walk, he still chose to crawl for the most part unless we made him walk.  Then about 2 weeks ago he finally decided walking was cool, and is now all over the place. 

I missed posting all of our fun Halloween pictures, and fall outings... maybe I will catch up soon.  We have LOVED not having ear infections.  The tubes have made a world of difference.  I think we have only been to the doctor for synagis shots and follow ups for his tubes.  His balance and equilibrium seemed to improve drastically by the tubes, we were hoping to see some improvement with his speech also, but that is coming a little more slow.  He signs and makes animal noises, but doesn't have very many words.  It will come though, and he seems to be improving each week.  He is at the tantrum stage because he knows exactly what he wants, but doesn't have the words to tell me. 

We are excited for Christmas this year, and have really enjoyed time together as a family.  I often find myself thinking back to Christmas last year.  We were preparing for our trip to CHOP for his surgery,  leaving 2 days after Christmas.  It added a whole new dimension to the stress of the holidays.  But it also added a different feeling to the season.  We weren't worried about presents and parties, we were 100% focused on family.  I would never want to relive this past year, but upon reflection I would never trade the experiences we had for anything.  I have the most tender feelings when I think about all of it. 



I love this picture of Logan with my Mom.  He absolutely adores her, and she is pretty fond of him too!  She has come out to our house EVERY Sunday to watch Logan so Brad and I can go to Church with Ashlyn and Tanner.  (We tried taking him for a few weeks, and he ended up sick every single time).  Today when we got home from church they were sitting on the couch together, and my mom said, "He didn't eat his lunch very well, but he wanted a cookie so I gave him one!"  No wonder he loves her so much!

He has a way of finding trouble and mischief anywhere he goes.  And by kid #3 I think I have learned to not freak out and maybe laugh about it and grab the camera.  I will be cleaning up messes regardless so we might as well have a memory to laugh about.  We have plenty of these.  He is constant entertainment (and a constant mess maker)!