When God Tells You No (or is it “Try Harder?”)

Last week was hard. If you follow me on Instagram, you’ll have known that Addison’s second extubation didn’t work. I thankfully didn’t stay in her bed space when they tried again, and had my parents with me for moral support. Mathew had to work, and I definitely knew I couldn’t do it alone. The doctor came out and I KNEW her extubation had failed. It hadn’t hit me right away and I stayed pretty calm. We’d talked to the doctors prior to extubation and the words “tracheotomy” and “trach” were discussed as one option if the extubation failed. It truly hadn’t hit me though, until I’d come back to Addie’s bedside and a trach nurse stopped by to tell me about trachs. That’s when I lost it and realized God hadn’t answered my prayer right away like I thought. What do you do when God tells you no? Or is it..”try harder?”


A tracheostomy is a SERIOUS and HUGE deal. My older sister has two amazing daughters (the best nieces an aunt could ask for), and one of them had a tracheotomy as a baby. Trachs are a lot. They require possible ventilators, nurses 24/7 in your home, medical supplies, and more. Not only that, but there is a lot of learning and care involved, it can cause high stress in a household, and Addie takes longer to heal than most. I prayed a lot before Addison’s 2nd extubation. I prayed endlessly from the day her first extubation failed until the doctor came back from her 2nd extubation. When the doctor told me it didn’t go well a second time, I wondered why God told me no to my prayer. Sure, I’d always said God wasn’t a magic genie who granted wishes, but still, I’d hoped with all my heart that she would be able to breathe with the cannula. It was a punch to the stomach knowing that my prayer seemingly hadn’t been heard. But then I kept thinking…maybe God is telling me to try harder.


Is a tracheotomy the only option? Should we get a second opinion? Would going to Texas Children’s in Houston be what we needed to do?

I made the decision to ask the doctors to come together for a big round table meeting. Our meeting is tomorrow at 7 am. We are going to sit down with all the doctors, Addie’s nurse, the trach nurse, my in-laws (my MIL is a Speech Pathologist), the Social Worker, and the Chaplain and hash out every question we have about Addison’s care. Mathew and I want to make sure we’ve done everything in our power to get the best care and options for Addison, and this is how we’re going to do it. It’s not going to be fun, it’s not going to be easy, but I feel it’s where God is leading us.


I can’t shake the feeling that God told me “no” to her extubation so we could “try harder” for better options and truly advocate for our daughter. I’m not sure what our meeting on Tuesday will hold, but I’m hoping that we can work something out besides a tracheotomy. Being away from home will bring it’s own set of challenges including Mathew and Addie not seeing each other except on weekends, being away from Pearl, among other things. It would be insanely hard, but only temporary and would bring us closer to bringing Addison home to live a “normal” life.


Please pray for us today and tomorrow that Mathew and I will make the right decision for Addison’s next step in her care. I so desperately do not want her to have a tracheotomy (though I will if that is the only option). Please pray that other options will be available and that we will be able to do what’s best for her so that she may thrive and grow at home sooner rather than later.

When one door closes, another opens. God…I’m listening. I will try harder. Help guide the way.

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Comments

  1. Praying for you and your sweet girl. God will give you the answers you need my love. In the meantime, please let me know if I can do anything. Xo

  2. Thinking of you all! I’m glad your MIL is an SLP who can be part of the round table discussion. She will be able to share so much with the team and be there for support for you!

  3. Thoughts and prayers are with you, sweet friend! I’ve been following along on Addison’s journey through Facebook. She’s an absolute doll and I wish you and your husband the best of luck at tomorrow’s meeting.
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  4. You are so very strong in all of this. It truly amazes and inspires me! So many people would be feeling sorry for themselves and directing their anger at God. The fact that you are continutally picking yourself back up and praying harder and completely trusting in Him is such a beautiful thing. Mostly because I, myself, don’t know if I would react the same way. I truly believe that your faith will get you all through this and I know God has a perfect plan for Addie. I am praying for your family every single night. Stay strong, mama! XO
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  5. Praying! <3
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  6. Stephanie, I just wanted to let you know I am thinking of you every day. this is so incredibly hard. You are so so brave.

  7. Hey girl….just letting you know I nominated you for the One Lovely Blog Award!!! It’s on my blog today… :)

  8. Praying for your sweet family and your precious baby girl. Our son was in the NICU, and I know how hard it can be when you just want them to come home. I hope you find answers soon and that you hear God’s voice clearly about your next steps.
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