This is Ridiculously Hard

This is so very hard. The heaviness and reality of the situation is really weighing on us tonight. Earlier this evening, Dr. del Nido himself called us to review his surgical plan. I won’t go into the details of that whole conversation, but it’s mostly good. He still feels that Savannah is a strong candidate for a bivent repair, but so much of this will come down to game time decisions in the operating room.

In preparation for the surgery, we had to give Savannah a bath. The bath involved washing with chlorhexidine, which was extremely traumatic. She screamed through almost the whole bath. Then after we got her dressed, she still screamed. At that point, all she wanted was her Daddy. I laid down on the bed and laid her sweet head on my chest, wrapping my arms around her. Within about a minute, she peacefully fell asleep.

As I held her, all I could do was cry. Cry for the pain and stress that she’s about to endure. Well in reality, she’s going to be so drugged that she won’t feel much of anything. Lori and I will be the ones experiencing most of the pain and stress I think. I’d imagine Savannah will mostly be scared and frustrated, because she won’t know where she’s at, what’s going on and why she feels this way.

On some level, there’s a feeling of responsibility for my child’s “birth defects.” It’s as if in some way it’s my fault she was born this way. After all, I did play a role in conceiving her. But all in all, no one knows why babies are born with heterotaxy. It’s not like Lori or I did something wrong! There’s just that unavoidable parental responsibility that weighs on my conscience – rationally or irrationally.

Then there’s the voice that constantly asks, “What if?” What if something bad happens? What if they can’t do the bivent? What if she has a stroke and has brain damage? What if she doesn’t make it? What if this is the last time I get to hold my precious little girl? I think these are valid fears, concerns, or questions – whatever you want to label them. Frankly, it’s okay to be scared! Being scared or afraid are sincere and real human emotions. I think it all comes down to how we deal with them.

Regardless of the outcome, I know that I did my best. I advocated for her in the best way that I knew how. I took her to the best doctors, and I traveled hundreds of miles to get her to the best hospitals. And with that assurance, I can take solace in the fact that I did everything humanly possible. The rest is up to God. He created Savannah, not me. It’s His plan, not mine.


  1. shelley boruff says:

    Those last three sentences are the key to hope, peace, and miracles. Rest in HIM there is no better place to be. May you have a testimony after all is said and done to HIS great glory. Praying for all of you!

  2. Cherise says:

    Hello Ryan and Lori
    Sweet savannah will absolutely be in my prayers. And prayers for you two.God us in control and will take great care of the whole situation.

  3. Pam Smith says:

    you and your family will be my thoughts and prayers, i know your family and you all have a strong faith in God and he shall be healing your little girl, God Bless You All

  4. Grace Edwards says:

    Ryan and Lori,,
    I will be praying for all three of you today and the days ahead. I am sorry you have to go through all this, may you feel peace in the midst and may God’s will be done.

  5. Rick Possemato Your Super Shuttle Driver says:

    Ryan Lori…… Little Savanah WARRIOR is in my thoughts and prayers as with many of the Super Shuttle family. i will read your blogs every day. My heart goes out to you and your wife. Stay strong my friend. We need to get her back in my Blue Van so she can go back home. Be we my thoughts and prayers… Rick your Super Shuttle driver in Bawstin

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