12.01.2009

Are You Ever Ready?

Are you ever ready to hear that it's time for surgery?

Ready to hand him over for surgery...wait...open heart surgery? For him to be put on heart-lung bypass?  Are you ever ready to sit and wait to hear if your little boy is ok...that they've closed his chest and his heart is beating on it's own?    Ready to walk into the PCICU and see his little bandaged, swollen body for the first time after surgery? Are you ever ready to face the inevitable?  The surgery that he has to have to save his life?

Are you EVER ready?

The lump in my throat, the churn in my stomach, the squeezing in my chest...those things all tell me no...but guess what?

It's about that time.

Derrick went to see Dr. Shuler today and had an echo.  We were both  kind of nervous about this appointment.  I couldn't tell you how many times we've been to the cardiologist...a lot...but this time we were nervous.  We knew it was getting close.  Kids usually have the Bi-directional Glenn when they're between four and six months old, and Derrick is seven and a half months.  He's been 'bluer' and sleeping more.  He gets tired when he plays for a while and he takes breaks when he takes a bottle. 

Yep, it's about that time.

We had prepared ourselves to insist on Dr. Shuler giving us a plan.   We have been in limbo for months...waiting.  We were armed with questions and ready to demand answers, knowing that he couldn't truly give us much of a plan because well, Derrick doesn't really seem to follow the 'typical' path.  

We didn't have to insist, we really didn't have to say anything.  All of the signs were there, and Dr. Shuler said that he was going to call MUSC and schedule a heart cath before Christmas.

Yep, it's about that time.

Justin and I were talking last night about how we were ready.  We're ready for surgery to come and go so we can have some time where surgery isn't looming around the corner.  I realize that we'll never be out of the woods with Derrick.  We know that.  But we're ready to have a little time off from waiting, expecting, wondering if we can make plans for the next month. 

While we're ready to get it over with, we're not ready for it to come. 


Are you ever ready?

Our prayer was that Dr. Shuler would see any signs that he needed to see, and that he would make the right decision for Derrick.  We didn't have to insist on answers because he gave us an answer before we ever asked any questions.

It's about that time.

D's heart function looked good on his echo today and he sounds good.  He really seems to be in the ideal place for surgery, which is definitely where we want him to be.  We should hear from Charleston sometime this week for the cath appointment and we'll go from there.  Dr. Shuler is thinking D will have surgery before the end of January.

You know I can't resist pictures of this guy, so here he is performing his own echo.  (The arrow must have been on the wall...it looks like we're pointing at D, but we know you know who he is! Ha!)

 

And this was his reaction when he heard his heart was looking good!



One reason Dr. Shuler thinks it will be before the end of January is because D needs it, but the other...this is scary and sad...Dr. Hsia, D's surgeon, is leaving MUSC and going to England at the end of January.  Going to England is a huge career move for Dr. Hsia, but we hate he's leaving.  He knows D's 'complex little heart' and we're comfortable with him, but we know that God has a plan for Derrick and his doctors, and we trust that.

When we learned that Dr. Hsia was doing Derrick's first surgery, I have to admit that I was nervous and disappointed that Dr. Bradley wasn't doing it.  I had heard so many people talk about Dr. Bradley and how wonderful he was, and I wanted him for Derrick.  I was nervous!

When Dr. Hsia came to talk to us before surgery I prayed that God would give me a sign that he was the right surgeon to do the job.  I knew that Dr. Bradley was a strong Christian, and I really needed to know that Dr. Hsia was too.  I needed to know that he trusted the same One to guide his hands that I did.

That talk lasted a while and I have to admit that I couldn't follow a lot of what was being said.  It wasn't that I didn't understand, it was that my mind wasn't there.  I knew Justin was paying attention, I was really just trying not to cry.

As Dr. Hsia was talking, I heard him say one thing.  He said, "...how GOD made the heart."  I don't even remember the whole sentence, because that was all I needed to hear.  God had answered my prayer and given me a feeling of peace as I looked at the man that would touch my son's heart.  Justin and I both hope that since it hasn't been very long since D's first surgery, that Dr. Hsia is able to mend his 'complex little heart' again.

No matter who does it, we trust that God will put Derrick in the hands of the right surgeon at the right time.

This is not easy, and no, we're not ready.  But it's about that time.



P.S.  Please keep Parker, his family, and his medical team in your prayers.  He is having surgery tomorrow (Wednesday) morning, and I know his family would appreciate your support.   I can't tell you how much comfort it brings to read messages of encouragement and prayer as you wait to get your baby back.  During D's surgery that's what Justin and I did, and we hope you can share that love and prayer with Parker and his family.  After all, we have the best prayer warriors around! :)
 **Prayers little guy.  You're going to amaze everyone!!**

20 comments:

  1. Praying for Derrick, you and Justin. I hope you can get this behind you so you can move on and stop waiting as you said. At least you know it is finally around the corner since you have been waiting on it for a while now. My thoughts and prayers are with the three of you.

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  2. Oh Shan, I can't believe its time already! Please keep me updated! We need to get together soon and get some stuff done! (I will email you soon.) Keeping D in our prayers and sending you hugs!
    Lo says Hi!
    Love, Jess

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  3. Shannon,
    Sounds like we both got news that we weren't ready for! {{{HUG}}}

    I know exactly what you mean about having a new surgeon. We went through that. After Logan's first surgeon left to take a job at Mayo we were in limbo until the new surgeon started. We were extremely nervous since Logan was facing a much more complex surgery than the first. However once we sat down and talked with him our minds were put at ease. He was so willing to explore all of the options before the surgery to make sure that he was giving the best chance possible at a better quality of life for Logan. He is a gift and I know that he was placed right where he was meant to be.

    It is never easy when you hear it is time. It is never easy to see your baby hooked up to so many machines unable to open their eyes. None of this is easy but we get through it because we have FAITH and some pretty amazing heart mommy friends there to support us.

    Stef, Ryan, Wyatt and Logan
    http://www.whenlifehandsyouabrokenheart.blogspot.com

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  4. Oh I am so sorry to hear this news. I am keeping you all in my prayers. I hope you can all just get through the surgery and put it behind you and move forward. I know D will be just fine because he is such the little fighter. God Bless you all!!

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  5. I love seeing all the pictures you post of little D, he's such a ham! It's amazing to see how seemingly unphased he is by it all. From his smiling face, you'd never guess that he has a complex little heart. I'll be praying that your holidays are enjoyable and UNEVENTFUL, and that D's surgery will go smoothly!
    Love,
    The Bradleys

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  6. Little D is such a cutie! You will never be ready, but now is the time to prepare-you got the word. The anexity seems to kill us until you hear those words, he did well! Prayers that it will go smoothly and he will be healing and home quick. ((hugs))

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  7. Shannon,

    I know it is never easy to hear that it is time. I've never been in the CHD parents shoes, but I've been the child and that is tough. I've heard what my parents went through and I know it's not easy and it's the hardest thing ever. I understand your anxiety. Hang in there! It sounds like this new surgeon is wonderful and is meant to be D's new doctor. Your in my thoughts and prayers, especially your Little Man Derrick.
    Sending you LOTS of **Heart Hugs**!

    With LOTS of Hope, Love, and Faith,
    Lauren (22yr. old w/Tricuspid Atresia aka HRHS)

    Blog: www.laurensheart.blogspot.com

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  8. Shannon,
    I can't believe that news..I tell you today I read your post and Stef post and I just want to cry. These babies are precious to me, like my own. I will be praying for all 3 of you. Keep us updated on the surgery date. I don't think you can ever be ready for something like that. I know I am not, I can't even fathom it. Just know that we are here ..praying and believing. Give little D a big hug from all of us! I hope you feel the love ..across the miles..we are sending much of it ..your way!

    Rhonda Lyle & Family
    www.lylefamily5.blogspot.com

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  9. I can't begin to imagine how nervous you guys must be! I'm nervous too just thinking about it. If there's anything that I can do to help you guys just let me know! I'm going to give Justin a call here in a few minutes.

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  10. Twenty-five years have passed since the morning of Jessany's surgery and I still remember so clearly sitting in the windowseat at Vandy all night holding my baby and dreading to see those green paper shoes appear at the door. It is the worst wait imaginable and my heart aches for you as you prepare for Derrick's surgery. We will be praying specifically for God's hand to rest on every aspect of Derrick's care to the most minute detail for an uneventful, smooth procedue done perfectly and an amazingly fast recovery so that your sweet baby is back at home safe and sound ASAP. You guys are always, always in our prayers!

    Kati, Rocky, Evan and Brycen Dunn

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  11. Awww Shannon! It's like we talked about last night...I'm so happy and sad to hear this! I love you guys, and I'm sending up extra prayers for Derrick! Let me know if I can do anything to help!

    Stephanie

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  12. Shannon,
    The feeling of a surgeon change is scary. Before I had Ethin I had met with his surgeon Dr. Hirsch I asked her if she would pray with us before surgery and all was set. Then I had Ethin a little earlier than expected and she was on vacation. The day of surgery I met the surgeon that would do his surgery Dr. Ohye. I looked at him and said will you pray with us before you take him? He came back right before they were going to take Ethin and all I remember was right before we began to pray Dr. Ohye stood there with his hand on my shoulder and one on Ethin's head! I knew it was going to be OK. I hope that by the time D has surgery I will be able to make it down. We are never fully ready, but God will prepare you and keep you and Derrick. Love the pic of D doing his echo that is to funny!!! LOL Lots of prayers, Heart Hugs, Love, and Blessings, Jessica

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  13. Shannon,

    All I can say is, we've been there too. The new surgeon, the scary feelings when you know time is approaching (Andrew's 2nd surgery was supposed to be around 6 months of age, and he had it at 7 mos). It is SOOOOOO hard. Esp when you've had them at home, seen their personality. I just understand all of it. After Andrew's surgery we have had a nice break- he'll be 3 in another month and I know our time is coming soon, too. It is so helpful to have all of us here supporting each other!

    Sending prayers!
    Jen, Craig & Andrew
    http://www.thehuegelfamily.blogspot.com

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  14. Hi. Not sure how exactly I found your blog but I really liked your post. I am also heart momma to heart baby going on her second heart surgery soon. Seems like a lot of us will be traveling down this path soon. I agree, it is hard and we could never truly be ready no matter how much notice we get. The dread of surgery is looming over me as well. I hope to follow your journey with your beautiful son Derrick. Feel free to stop by my blog and visit.

    www.withallmyhearts.blogspot.com

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  15. Just read your blog after Jess told me this morning. Wish I could say it gets easier once a date is given. When we got Loreleis date it was like time stopped. I do not think you are ever totaly ready. The weeks leading up to surgery went to slow. Every thought possible crossed my mind, but I took comfort in knowing she was going to be in very good hands. I would not trust anyone else except those at MUSC. When the day finally arived surprisingly I found my self at total peace that day, even more when they took her back. God has a plan for our little ones, its funny we were at lunch last year after Lo's surgery around November, and the waitress asked about her scar and we told her. She looked at her and said shes going to be special , shes goign to be the President one day. We kinda laughed it off. But it is something our kids give off. If you two need anything just ask.

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  16. I don't think as parents that are EVER ready. I remember getting knots in the pit of my stomach every time we pulled into the hospital parking lot.(Not good when you have so many appts. there)We are praying.

    ~Stephanie and Braeden(HLHS)

    http://braedensheartjourney.blogspot.com/

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  17. Hi Carter family - I found your blog through Owen's and had to comment =) Our son, Luke, also has single ventricle and mitral atresia. His heart is a little different from Derrick's since he doesn't have TGA, but our boys have pretty similar hearts! Luke will turn three in January and we are most likely coming up on the Fontan this summer. Facing surgery is not in the least bit fun, but what a blessing that Derrick is going in to the Glenn so strong. Our Luke was 7 months at the Glenn as well.

    Derrick is such a sweetheart and we will pray for him ... In our family's experience, God is never so present as when we're in the rough parts of life.

    Take care!

    Jesse Smith
    http://smithfamilyjourney.blogspot.com

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  18. I am so glad you commented and shared that you had found our blog when you were pregnant ... that blesses me so much. Besides having a record of Luke's journey for Luke when he grows up, my desire is for our blog to be an encouragement to other families, so thank you again for commenting! And I don't think in the LEAST that it's weird that you followed our story, I did the same thing when we were waiting for Luke's birth. I just needed to see some strong heart kids that were thriving.

    I'm excited to continue to follow your family's journey and will definitely put sweet Derrick on our heart prayer list ... especially as he nears the Glenn.

    Heart hugs!

    Jesse

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  19. Hello,
    You don't know me and I don't know you. I just saw your blog today. I have a little boy that just had his Glenn done in June. He was at Primary Children's Hospital in Salt Lake City, Utah. It was a miracle to me that he stayed in the hospital less than one week after open heart surgery.
    Parents are never ready to hear that your little one needs surgery. Joshua looked so much better after surgery. The Glenn did wonders for him. By the way, Joshua has HRHS, TGA, VSD and stenosis. He is a few months older than your little guy. Maybe we could be a good resource for each other. I will pray for your Derrick. I hope Derrick's stay is as good as Johsua's was.

    Sarah Waite, Powell Wyoming
    neilandsarahwaite.blogspot.com

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