Tuesday, March 31, 2015

Our New Journey

If you've been following our story for a while, you know that we received Sawyer's diagnosis of HLHS at 24 weeks pregnant.  I had a lot of time to Google prepare to be the mommy of an HLHS baby.  I learned everything I possibly could before she arrived and once she was here I continued learning.  I wanted to know all of it.  I needed to know what every number meant, what every acronym stood for, why they changed these settings, what each new med was.  My poor doctors and nurses... I couldn't help it.  I just HAD to know it all.  I immersed myself in it because I was bound and determined to be a good HLHS mommy. And I am.  I really am.  I'm great at being a mommy to an HLHS baby. I know what every number of her blood gas means and what adjustments should be made to normalize the ones that are a bit wonky.  I know lots of other HLHS families, what surgeries their kid has had, which ones have been on ECMO, and who has a surgery coming up.  

Sawyer is 8 months old and she has been through so much... several codes, 2 open heart surgeries, a thoracotomy, 4 cath lab procedures, 2 ECMO runs.  It's been one crazy journey.  And now we're preparing ourselves for a new journey.  I'm preparing myself to be a new kind of mommy. 

A transplant mommy. 

We listed Sawyer for transplant status 1A on March 30th around 2:00 PM.  If you had asked me months ago, where we'd be at 8 months old, I would have told you we were preparing for Sawyer's hemi-fontan, the second stage of her 3 staged surgeries.  I would have been optimistic about a short stay, as the hemi is typically a quick recovery.  I would have told you that Sawyer's quality of life would be so much better after her hemi.  Well, life happened, Sawyer didn't follow the rules, she definitely didn't read the HLHS handbook, and we've landed here.  Listing for transplant is exciting, terrifying, happy, and sad all at the same time.  On one hand, Sawyer will have the opportunity to live her life with 4 WHOLE chambers!  Oh I can't imagine the energy she will have with 4 chambers considering the energy she already has with 2!   She will be PINK.  I won't have a panic attack every time she cries or even poops (seriously... just POOPING plummeted Sawyer's heart rate once).  But on the other hand, she will be on really intense meds for her whole life... meds that can cause other scary conditions... meds that will make her hugely susceptible to illness.  So I may not fear when Sawyer cries too hard, but if someone sneezes across the room... oh Lordy.  

And don't get me started on the fact that you have no idea when the perfect heart will come.  It could come in weeks or it could come in months.  It could come the second I hit publish on this blog post.  How the heck is this OCD, planning, control freak supposed to handle THAT?!?  

This has been an adjustment... one that I haven't even begun to really hash out in my mind.  I have known we COULD go down this road for about a month, but now that it's officially official, I have a chance to let it all soak in.  And you better believe, I will be Googling preparing as best I can... learning everything possible... taking it all in... just as I did when I became an HLHS mommy.

  Transplant mommy. 

I think I can do this. 


  1. Please give us an update. I have been praying for your little girl and hoping to hear some positive news about her.

    1. I'm so sorry. I was just thinking about how I haven't updated the blog in FOREVER and how I was totally leaving everyone hanging. What a cliffhanger I left off on! I will do a formal update in the next week or so, but for now... please know... Sawyer only waiting 39 days for her new heart. She was transplanted in May and has been doing really well! <3