The Journey of a Sweet Little Boy and His Special Heart

Monday, February 21, 2011

My neighbor asked me the other day if I was mad at God for not fixing Logan's heart, because she was.  I told her I wasn't mad at God, but knew He must have a different plan for Logan.  She wasn't convinced, she said she was still mad.  I have thought a lot about this.  I wanted to be mad at God when things didn't go how we had hoped, but I couldn't.  How could I be mad at the God that is blessing me with the opportunity to be this little boy's mom?  When it comes down to it, really I should be thankful I was trusted to raise such a special little boy, and we will take all that comes with raising him- rain or shine (or more like sleep or no sleep!)
I started this post back on January 29th, and for some reason never posted it.  But last night I read this scripture and thought back to what I had written here.  "I know that God loveth his children; nevertheless, I do not know the meaning of all things."  (1 Nephi 11:17)   I don't know why we have the trials we do, but I do know God loves His children and there is reason for everything.

Tuesday, February 15, 2011

Pictures and Heart Day (aka Valentine's Day)

(I am not by any means a photographer, but my sister wanted to see some recent pictures of Logan, and I wanted to show off his new shirt and blanket so we had a little photo shoot in his room the other night.)
 A fellow heart mom and life long friend, Caryn, made this shirt for Logan.  I am overwhelmed with the support and love we have gotten from the heart community.  They are the most amazing people with the biggest hearts. 
Logan was also given this beautiful blanket from another fellow heart mom, Elizabeth (someone who I have never met), in honor of her son Jake that passed away from CHD.  I feel honored to have one of "jakey's blankies". (check out his button on the side of my blog)

Logan loves his blankie.
Logan with all his soft and furry friends.  Every animal given to him by someone who loves him.
Look at the chub coming back on his tummy.... he is kicking CHD in the rear end!

Now that you got to see all the pictures of my handsome little dude you can choose to read or ignore the ramblings of his mom!  With yesterday being Valentine's Day I had a few thoughts.  Hearts mean a lot more to us this year.  Logan is teaching us so much- in every aspect of hearts; the physical heart, the emotional heart, and the spiritual heart.  And I am sure there is still so much for us to learn. 
We were able to go to Paul Cardall's concert last night (well at least most of it, that was the longest we have left Logan (since surgery), and Brad's parents were awesome, but his limit was 3 hours so we had to skip out a little early).  I was overwhelmed listening and watching Paul Cardall play.  It is surreal seeing him as an adult and knowing the odds he has defied.  Logan is taking a similar journey, but 37 years later when medicine has advanced so much.  There is so much hope for these heart kiddos- even if they are only functioning on half a heart. Paul shared a quote that I have been trying to find online, but can't find it, but it said something like,
"God is closest to the broken hearted."
It is so true... I am grateful this Valentine's Day more than ever for HEARTS.

Sunday, February 13, 2011

How Are We?

I get asked this question several times a day by people who I know genuinely care... how are you?  My answer, "good."  "How is Logan?" my answer, "good."  What else do you say?  For the most part we  really are good... considering!   I have friends and family asking how they can help, and I wish I knew how to pass stuff off- it is hard, but I am trying.  My brother called and offered to come watch Logan today so I could go to the first hour of Church.  Initially I said we were okay, but I am learning to let people help.  I told him that would be great (my mom has been coming every week, but was out of town this week).  So he came with his daughter, and Logan did great (but was really ready for me to be home when I walked in the door), and I got to go to church.  Thank you!  We have been SO blessed by those around us.  My parents still call every morning to see how much sleep I got and if they need to come out so I can take a nap.  85% of the time I feel like I have things under control, the other 15% of the time it feels like my life is complete chaos!  But we are figuring things out.  A roller coaster is the only way to describe it.  Some times I feel like we are on top, other times I feel like we are screaming down another hill out of control (mostly in the middle of the night or when I try to go somewhere by myself). 
Logan saw his pediatrician this week, and has gained 12 oz. since we have been home- that is remarkable.  If he keeps gaining weight his ped. said we might have to try the cry it out method at night to get him to sleep more... I don't know if I will be able to do that.  He has some nights where he will do really well (3-4 hr stretches), but we had SEVERAL nights this week where he was up every single hour.   Exhausting!
I still think he is adorable even if he wakes me up all night, and I can't bare to let him cry.  I went to run some errands last night and I got a phone call from Brad to see how much longer I would be.  Logan was hysterical.  I sang to him on the phone as I drove home, and that calmed him down some, but this boy is a mama's boy...makes it hard to ever leave him. 
I have been so overwhelmed trying to figure out what to do with my job.  I LOVE, absolutely LOVE teaching at the gym.  It gets me out, gives me social time, and best I get paid to exercise, but it has been a bit of a challenge working that back in with Logan.  I have a great neighbor that has been watching Logan for me since he was born a few mornings a week while I teach, and she is still willing to watch him.  So she watched him for me this week while I taught 2 of my classes.  He did okay.  The first day I was gone just over an hour and he did fine, the second time I was gone almost 2 hours and he was crying when I got there.  Bless her heart she did everything, and she is so nice to deal with the oxygen and all that comes with caring for him.  But is so hard to leave him, for both of us.
 Enough about me though, most of you read to see how Logan is- he is "good."  He is gaining weight and is eating more solid foods every day.  He started rolling from his tummy to is back the last 2 days (he hates tummy time), but still won't roll from his back to his tummy.  But he is making progress.  I asked his ped. if he would need therapy, and he feels like Logan is right on developmentally so we won't jump on that yet.  We are still weaning him off his morphine, but hope to be done with that in the next week and a half.  We have also been able to turn his oxygen down to 1/4 liter during the days... all progress!  He is a happy little guy (when mom is around)!

Monday, February 7, 2011


There is an incredible amount of awareness and education surrounding adult heart disease, but very little about the number one birth defect or leading cause for birth-defect related deaths.

Did you know:
  • Congenital Heart Defects (CHDs) affects approximately 1.8 million families in the United States
  • CHDs are the most common birth defect and the leading cause of birth-defect related deaths worldwide
  • Nearly twice as many children die from CHDs as from all childhood cancers combined, yet research for cancer receives five times the funding
  • There are currently 35 distinct CHDs recognized
  • There is no known cause for CHDs and there is no cure. Only treatment, such as medicines, numerous surgeries and heart transplants.
  • Each year an estimated 1 in 100 babies are born in the United States with a congenital heart defect
  • 1 in 10 of those are born with a fatal defect

If you would have asked me a year ago what CHD was, I probably would have said congestive heart disease (thinking Congestive Heart Failure).  I was well aware of adult heart disease, but had no idea about Congenital Heart Defects in children.  And then my little Logan was born in May 2010, and I am now very aware of what CHD is.  You see Logan came home from the hospital with a clean bill of health.  It wasn't until he was 4 days old and we took him in for a billiruben check that his pediatrician heard the heart murmur. 
 That heart murmur was a combination of a small right ventricle (Hypoplastic Right Heart Syndrome), a very large VSD (Ventricular Septal Defect), an ASD (Atrial Septal Defect), and a small and deformed Tricuspid Valve (similar to Tricuspid Atresia). 
At a young 8 months old Logan has undergone 3 major open heart surgeries.  The Pulmonary Artery Banding at 2 weeks old in June '10.  A VSD repair and PA band take down Dec. '10-  this was an attempt to allow him to function on both ventricles, but his body did not tolerate this repair and he went into severe acute heart failure New Year's Day 2011.  He had his 3rd surgery Jan. 10th 2011 the Bi-directional Glenn (just 11 short days after his 2nd surgery).  He has also had 2 Cardiac Catherizations and more echo's than I can count.  With yet another major surgery needed in the next year or two.
This is more than any Mom would ever want to have her child go through, but I am thankful EVERY day for the doctors who dedicate their life to giving babies like mine a chance at life.  Logan could not be here if it wasn't for the research and dedication of these great people. 

Friday, February 4, 2011

A teaching post and clarification

Before Logan was born I thought I knew the "basic" anatomy of the heart; after all I took anatomy and physiology in college and am a fitness instructor, but I realized I knew NOTHING!  Now,  I feel like I should have some sort of honorary mom Dr. degree because I know more than I could have ever been taught in a college class.  I can be having a conversation with a mom in the cardiac waiting room and know more about her kids diagnosis than she does because I have read everything I can about CHD.  I have searched the web over a million times trying to find exact information on Logan's diagnosis, and it doesn't exist.  It was a little unnerving at the hospital hearing the doctors explain Logan's anatomy to the students each morning on rounds starting with "We have never really seen Logan's anatomy before, this is an unique case so we will spend a little extra time here explaining it."  Logan is definitely a unique little boy in every way.
Anyway, today I found this information on Tricuspid Atresia It is the closest thing I can find to Logan's new anatomy.  This picture of the heart is pretty close to Logan's heart now.  Really the main difference is Logan was born with a tricuspid valve (tricuspid atresia is not having the valve at all) but Logan's valve was small and deformed so they sewed a patch over it making it non-functioning (so pretty much not there).  If you read through this article, Logan was born too "pink" and had the first surgery for that called the Pulmonary Artery Banding, and is now following the rest of the steps as a single ventricle heart.
CLARIFICATION:  I know in an earlier post as I was describing the plan for Logan's future I did mention Heart Transplant.  That is WAY down the road as far as we are concerned.  We are hopeful Logan will be able to function on a single ventricle for a long time.  Paul Cardall made it until he was 36 functioning on a single ventricle before needing a transplant.  So he is not on a transplant list nor are we thinking he will be any time in the near future.  The single ventricle solution is still relatively new and evolving every day as the doctors learn and discover more, but the doctors have no exact time line or data on how long they last or what other complication can come with a single ventricle.  But we will remain hopeful and grateful for those who dedicate their lives in researching this and giving our son the chance at life.


That we are making.  Today I feel like we are living life and not just surviving.  Logan is becoming more and more like himself every day.  He is smiling and laughing all the time now.  I slept in my bed for the first time last night since we have been home.  I am finally getting comfortable enough with his numbers that I know the alarm will beep at me if they drop too low, and I don't need to be staring at them all night.  On a good night he is sleeping in 3-4 hour stretches, on a bad night he is still up every 1 1/2-2 hrs.  We usually have 2 good nights to one bad night so we are managing.  I just feel like he is a newborn again!  He would probably sleep longer if he ate more baby food... the kid only wants to nurse, and he wants to do that 24/7.  But at least he is eating something, right? 
I took these pictures Saturday... Just one week of being home and he looks like a different kid!
 Ashlyn and Tanner have loved him being home and take great care of him.

 Look at those 2 new teeth (and the drool mark to go with them)!
 After a month of laying in a hospital bed he lost all the strength in his legs and refused to stand on them- we are just getting him to stand on them again (it makes it hard to help him stand up when you can't hold him under his arms).
 This is all the medication Logan came home on... yes, all that crammed into his tiny body.  No wonder he hasn't wanted to eat any food.
 We are now down to 2... just a week and a half later.  We took him back for labs again on Monday and his potassium and sodium levels are better.  We are still having to wean the pain meds slowly, but he is doing so much better with that. 
 And in the next week we should be down to just 1!
He has come a long way in just 2 weeks. 
I look at this picture taken the morning we left the hospital

and I am reminded that even though we didn't get the miracle we wanted we still have a miracle.  He is still with us first of all, and to see him transform from being so depressed and sad to my happy boy laughing and smiling again- that is a miracle in itself too.  The other stuff is minor and will come with time.  We can deal with oxygen, not a lot of sleep, withdrawal, scars and meds- as long as he keeps on smiling!