The Journey of a Sweet Little Boy and His Special Heart

Wednesday, January 12, 2011

I don't know if it is harder for us to be away from family, or for family to be away from us.  I apologize for not answering the phone calls, I know everyone cares so much.  I know there are so many of you willing to jump on a plane to come out here.  I am thankful every minute to have Brad here, and to have so much uninterrupted time with Logan. Logan's doctor, Dr. Rome, is a VERY tall, quiet man (he reminds me of my Uncle Mark) he comes in several times a day to check on Logan.  I can tell every time he sees me he wants to offer some sort of comfort, but isn't sure how.  This morning he just hugged me.  It is comforting to know he genuinely cares.
Logan is having a rough time.  I have been holding him for the last 24 hours.  He is most comfortable in my arms.  If I leave to go to the bathroom he cries until I pick him up again.  A nurse tried to hold him last night so I could get some sleep, but he cried (more like moaned) the whole time.  So I sit in the rocking chair with him as long as I can, and even then he is still miserable. 
He ate on Monday after surgery, but then went on a hunger strike again for the next 36 hours.  I think saying he has been miserable is an understatement.  They tried to bring down his sedation a little yesterday to see if that would help him eat, but that made things worse.  Pain meds don't seem to do much.  He refused to swallow anything for those 36 hours (wouldn't even suck on his binky)- we have been pretty scared.  They did an ultra sound on his brain today, an echo of his heart, and an x-ray and have no idea why he is having such a hard time.
About an hour ago we finally got him to eat a little bit.  This is the first time he is resting somewhat peacefully in his crib.
My mind has a lot of time to think.  I am so up and down in my emotions.  Why in the world are we so far away from home?  I keep trying to figure that out.  I might never know, but I hope we get to bring our son home soon.
We have a new reality to come to grips with.  A single ventricle heart is a miracle, but it does not come without challenges.  I know there are a lot of babies thriving on a single ventricle- please keep giving me hope that they can and will live a normal life.  And that MY Logan will return to me soon.  Not this baby covered in medical wires, IV's, chest tubes,  that hits away anybodies hand that comes near him, and who hasn't smiled in days.  I see older kids here in the hospital, and the thing that got me through the first 2 weeks was thinking we were here to save Logan from having that life.  Now who knows.  It is a hard time to be positive.  It is also hard not to feel like we are taking steps backwards.  Before surgery Logan was so happy and healthy.  His oxygen saturations were always in the 90's, and there were no physical signs of his heart condition.  So to see him so "broken" is unbearable.  His saturations are in the low 70's and he doesn't even look like himself.  I wish there was some way to take it all away.
But he ate, and he is sleeping.  So for now that is progress.


  1. Oh Heidi! I wish I knew what to say or do to put a smile on sweet Logan's face or to lift the burden of emotions you are going through right now, but I don't. All I know, you already know: the Lord is with you and Logan and I'm sure you've felt his sweet hand of comfort many times these past weeks. Faith and hope is all that we can go on during times like these, and I know you have and exercise an abundance of both!
    Please know that my heart and prayers are with you right now! I hope that Logan's eating is indicative of a continued progress and that you and YOUR Logan can come home soon!
    Faith, Prayers, Hope, Love and Belief,

  2. I had to go and re read Severins journal. Because it is all a blur. My handwriting is bad and all over the place. I remember why.. I was holding him, rocking and trying to write in it while it was on the table next to me. Severin didn't start to come around until 7 days post op. I know that isn't what you want to hear, keep in mind he had the infection going on also. But here we are 8 weeks post op, better then ever! Just hold on Logans day will come, and you will be so thankful that it did. For now try sitting on some pillows, standing and rocking. Maybe on day 5 or 6 he will want to swing and watch a cartoon. This time is just crappy to say the least. So sorry!

  3. This was on the wall in our room at the RMH.
    "Promise me you will always remember...
    You are SMARTER then you think,
    BRAVER then you Believe,
    STRONGER then you seem."
    -Christopher Robin to Pooh

  4. Sweet, sweet Heidi ... I have been reading your blog posts and crying! I can think of little else but you, your sweet angel, Logan, your wonderful husband, and your other two angels missing you at home. My prayers are constant. I appreciate your willingness to share this journey with us. It goes without saying that my silly little struggles and problems seem so insignificant compared to what you're experiencing. I wish so much that there were something I could do or say to help. I know there isn't. Please just know that I love you all so much and that you're in my prayers. Love, Aunt Debbie

  5. Sheesh.....I am so sorry about how this is all happening right now! Have they given you any estimated time of when you guys can cone home?
    Keep hanging in there....we will continue to pray fervently for all of you and hope for a speedy recovery! You are strong and are handling all of this so well! Tour love for Logan and the lords love for all of you will carry you through. Love you guys!

  6. I have been thinking and praying for you daily. I know this is such a hard time to go through. But you prayed and knew this was the right place to take him; try not to second guess that. ( though I know it's hard right now). Ash wasn't smiling until we left the hospital. Now, 3 1/2 months later, he is the happiest sweetest guy. But it was hard at the hospital, he wasn't himself. Your sweet Logan will return, it will just take more time.

  7. Heidi,

    I empathize with your pain. As I read your words, I see myself sitting and rocking my precious baby girl day 2 and day 3 post-hemi Fontan. Day three was the absolute worst. Her head swelled and she was miserable. I looked at my husband with tears rolling down my face and said, "this is not our little girl." Please, have faith knowing that this too shall pass. Keep the hope in your heart and mind. Seeing your child suffer, really suffer, is unbearable. You feel absolutely powerless - the worst feeling for a mother.

    If you have time to walk around, take a stroll down the CHOP hallway leading to the CPRU. There are some quotes and photographs hanging on the walls that I found inspiring during my trying times after Zoe's Glenn.

    Give that sweet boy a kiss and know that he'll be back to himself sooner than later. Visit and view "our inspiration," all single ventricle (HLHS) babies who are post-Glenn and some post-Fontan who are happy, smiling and thriving babes.

    Heart hugs,

  8. Heidi, I hope you don't mind me following your blog now and leaving comments. I just had to say that reading your post brought me right back to the time I was in the hospital with my Kyson after he had the Glenn. It was so extremely hard. He cried non-stop, refused to eat, and I was so exhausted I was a mess. I am only saying this to let you know that what your son is going through is not abnormal for the Glenn surgery. I'm praying that as he was able to eat a little and get a little sleep this afternoon, maybe he has turned a corner and will start feeling better soon. I know you don't know me, but you are in my thoughts and prayers.

  9. Heidi, I also hope you don't mind me following your blog either.

    Kylie is a single ventricle kiddo, she had her glenn two years ago today. To be honest at first it was very overwhelming, yes we had been through the norwood, spent 3 weeks in the hospital, she was only 4 months old and we were back again. Seeing her so sick, she also just wanted to be held ALL day long. She also didn't want to eat they gave her IV fluid for a couple extra days to see if she could do it on her own, but ended up NG again. I look back at the pictures and feel the same way, thats not my baby girl, but a very sick baby. The difference a couple days make are amazing, she finally started looking like Kylie again, it did take a couple weeks to get that adorable little smile back, but she did it.
    With Kylie she was born a single ventricle (HLHS) plus other defects that come with HLHS, we knew before hand that she was "going to be very sick" (from the cardiologist mouth). I knew she would need 3 surgeries as she grew older and one day a transplant. As her fontan slowly creeps up so soon, makes me ill. I am not going to lie, Kylie is not like other toddlers I have seen, she has more, she has a spark in her eyes, she has a very contagious smile, she is very very in love with the world and everyone in it!! There is nothing like the love of a heart baby!!
    Yes, she slows down faster than other toddlers, yes her O2 is around 83 and that is good for her, yes her sweet fingers and toes are blue as she grows older, but you look at her and you would have no idea she is a tender little 1/2 hearted kiddo! She is our hero. I am so sorry you are having such a rough emotional time!! It's so NORMAL!! I promise, the emotions, the not being able to get away, the missing family. It's not fun but your little Logan knows, he knows Mommy and Daddy are there for him, he knows his family at home loves him. He knows what he needs to do and is showing us all what a strong brave heart hero he is!!

    Please know we are praying for you and your sweet family!! Thank You for letting us share your story!!