The Journey of a Sweet Little Boy and His Special Heart

Sunday, January 9, 2011

Another Surgery

I am riding the emotional roller coaster today.  I cried when the doctor came in to talk to us even though we already knew what she was going to say.  Logan will be having another major open heart surgery tomorrow.  They will enter in through the same incision (for the third time), and the surgery will require him to be on bypass again.  My heart is torn.  I am devastated he has to go through more, but at the same time I know this is what he needs.  He is not his normal self, part of that is being in a hospital, some might be teeth, but the bottom line is his body is not tolerating the changes in his heart's anatomy.  He is not able to keep his oxygen saturation's consistently above 80% here and we are at sea level.  So when we come home to 4500 ft. he would be even lower.  If we kept things how they are his lifestyle would be so limited. 
I feel selfish complaining about how I feel because it is Logan that has to go through everything.  But until today I was really holding it really together.  But I really miss home.  I miss Ashlyn and Tanner like crazy.  We have been gone 2 weeks now- that is by far the longest I have ever been away from them.  I want a real shower, a real bed, and normal food.  Hospital life is exhausting.  And I don't know if I can handle holding Logan down anymore while people poke him and cram medicine down his throat.  He is getting feisty now and pushes anyones hand away that comes near him.

As I was sitting here in the hallway outside Logan's room complaining (he is napping) I struck up a conversation with a mom I have seen wandering the halls with her baby and his IV pole.  Now I feel like I don't have so much to complain about.  Her baby was pre-diagnosed with HLHS and when the dad found out he skipped town.  So she is here alone, and will be for at least the next month.  Her baby has coded (heart stopped) twice since she has been here and he is only 3 months old.  I am humbled.  I have Brad sitting right next to me- I have always known he was a good dad.  But these last 2 weeks I have found out he is an incredible dad.  And he is my very best friend.  I am humbled.  But I still wish my little Logan didn't have do go through this at all.  I want my happy boy back.

If I could write your story son,
(Oh how I wish I could)
I'd pen for you a journey,
That held nothing but good.
Wouldn't it be perfect?
If that job belonged to me?
I think I'd change a thing or two,
While writing your story.
I'd write of lasting happiness,
The storms would stay at bay,
I'd write your story carefully,
I'd have so much to say,
You'd know not of a hospital,
Or days in ICU,
You'd only know of simple things,
Like other children do.
The sun would rise...Yes everyday,
And shine to make you smile,
You'd never know a day of pain,
You'd never face a trial.
You'd dance to music all your own,
While watching Sesame Street,
I'd tuck you into bed each night,
And life would be complete.
I'd write of picnics in the park,
And winters in the snow,
I'd write of laughter,joy and love,
I'd sit and watch you grow.
I'd proofread till my eyes grew tired,
Each line and paragraph,
And let my pen fall to the floor,
Then stop to hear you laugh.
And never would I question,
What sick children must face,
Never would I have a need,
To ask God for his grace.
I'd likely live oblivious,
Of what it means to be...
A member of this "special club",
I call my heart family.
If I could write your journey son,
Perhaps I'd not convey,
The message that HE longs to share,
"We must live for today".
Your story has been written,
Each stroke penned with great care,
He knows each thought I have of you,
He's numbered every hair.
No, I can't write your story,
Although I wish I could,
I must heed what HE says to me,
"All things work for the good".
If I could write the life you'd live,
I'd fail...don't you see?
I'll leave it in much better hands,
He'll write it perfectly.

~Stephanie Husted

As emotional as it is, I really believe this is Logan's Journey.  Brad was researching every possible "repair" for the heart on the Internet last night and all the outcomes.  Then today he said, "You know, we were lead here for a reason, and we felt good about that decision.  It isn't our job to fix Logan's heart and to have the knowledge to do that.  We need to trust the doctors we were lead to to do that."  So we will again hand him over tomorrow and trust that he will be in the care of great doctors, but also a loving Heavenly Father.  I know he has hundreds of people praying for him.  This sweet baby has a way of getting into other's hearts.  Thank you for your support, prayers, and love.


  1. my goodness, I have to dry my eyes just to type this. My heart is torn, on one side i feel so fortunate for my kids good health after reading this and I feel it breaking for Logan's heart troubles. I know another surgery wasn't what you or Logan wanted but hopefully this fixes what needs to be fixed at this time. We miss you and your beautiful family and hope that all gets better so that you can come home soon. You're in our prayers always!

  2. Oh, Heidi, I am so sorry that you and your family have to endure another surgery. Please know that you are all in our thoughts and prayers. Hang in there!

  3. Hey Heid......I have been thinking of you a ton over the last few days! I have cried for you and wondered how you could be holding up. I am so sorry for everything you are having to endure right now. I can not even imagine how torn you feel as a mom right now....being away from ashlyn and tanner....and being there to see your baby being put through soooo much! Just know that we are praying for you constantly and we will be praying extra hard for all of you tomorrow! Hang in there! We love you!

  4. Heidi - I don't have anything new to say, but I know how much I appreciated people's comments and support when I was in your shoes (sort of) - so I'll keep saying the same things over and over again. We love you, we pray for you and Logan many times a day. I wish I could be there with you, for you - I wish I could hop in the car and bring your kids to you. I wish the ache I feel for you could take some of yours away. You're amazing, and stronger than you think!

  5. Heidi, I'm so sorry Logan has to go through another major surgery. When my little boy, John was born he had some challenges and had to have IV's placed in his head. I remember how difficult it was as his mom to have to watch that. And now as you watch Logan go through these things, I know it must be heartbreaking. Two weeks away from home and away from your kids has got to be so hard too. I'm so glad you have Brad and I admire your strength. Hang in there. Logan and your family have been in my prayers and I will be praying extra hard tomorrow. I hope it all goes well... I truly believe Heavenly Father guides those doctors and I know He will tomorrow for little Logan. He is such a sweet little thing. I guess I feel a connection because I have a little boy just a few weeks older than him. Lots of love!

  6. Oh Heidi, how my heart aches to want to help lighten the burden of emotions you are feeling right now; however, I feel your faith and testimony coming through strong. That you know Heavenly Father has a plan in place for you, your family and sweet Logan. I know you are being watched over and loved!
    My prayers and faith will go to Logan and his doctors for an effortless and successful surgery, and to you that you will have the strength needed to endure the emotions that must be faced as you plow through this challenge.
    Love, hope, prayers and belief!

  7. Our thoughts and prayers are with you and your sweet Logan. God is mindful of you and will bless you with added strength and comfort. We are praying for you! Keep the faith!

  8. Oh Heidi,
    I am so sorry that Logan has to endure another surgery tomorrow and that you and Brad have to sit and wait for the outcome. I can't possibly imagine how hard this is for all of you, including Tanner and Ashlyn. If there is anything that I can do for you please let me know. Lots of love and prayers from us.

  9. Oh dear Heidi! You, Brad, and Logan will continue to be in our prayers! I am so thankful you and Brad are there to lift and remind each other of the strengthyou have and can call on! <3

  10. Adding my prayers to yours for Logan and the Doctors today. What a roller coaster ride being a heart parent is!

    Hugs & Prayers,
    Heart Momma to Jacob

  11. Caryn Beck gave me your blog address and I wanted to come by and say that you are all in our prayers today!! Our son is almost 3 with HLHS and getting ready for yet another surgery.

    You are on an amazing ride, although tough, you are going to be blessed beyond measure. You already know that I'm sure.

    Please feel free to email me anytime if you want to chat. We live in Phx, but I grew up in So. Jordan. We actually travel to Lucile Packard at Stanford for Owen's surgeries now. I know that CHOP is amazing and actually know quite a few moms from there that had Dr Spray just do their kiddos' Glenn as well. I'll pass your blog along.

    Heart hugs and know that there are many thinking of Logan and your family today.


  12. Heidi and Brad,

    I heard of Logan's journey through Andrea, a fellow heart mom here in Arizona. Zoe, our HLHS warrior, was diagnosed in utero at 19 weeks gestation. We flew from Arizona to Philadelphia for delivery and her Stage I and II surgeries. As you've learned, Logan is in VERY CAPABLE hands at CHOP. Dr. Spray is the absolute best (and, yes, one of the fastest around.) Dr. Rome is amazing as well. Zoe's cardiologist at CHOP is Dr. Szwast and she is top-notch. I never, not once, regret our decision to have her care and treatment directed and performed at CHOP. You just have peace of mind knowing you're in the right place for your kiddo. Logan is a doll.

    Please let me know if you have any questions about CHOP/Philly. My husband and I lived there for a total of 2.5 months (one month pre-delivery, one month post-delivery while Zoe was recovering from her Norwood and most recently in September post-hemi-Fontan.) We learned some of the ins and outs and pointers around CHOP and University City.

    Take care and let me know if there is anything you need. I have several heart mom friends that I met in the area with CHD warriors who would love to help you out in any way.

    Stay strong, stay positive.

    Heart hugs,
    Stacey Lihn

  13. What more can I say, this heart community never ceases to amaze me. Perspective is always a humbling experience. Just endure.