When you least expect it…

As we get closer and closer to Bailey being 1 year old AND 1 year post Kasai surgery, I’ve been in the mindset that “we’re in the clear”. We had a follow-up with Bailey’s liver doctor today, Dr. Sonny, and he thought she looked great on exam (as did I), and she FINALLY gained enough weight since the last visit to make mom, doctor, AND dietician happy! Bailey and I celebrated a successful lab draw (successful meaning she didn’t puke all over the floor this time) by getting Chick-fil-A together and then visiting my co-workers. I was feeling really good about today’s appointment while driving home. I was stopped at the light on Holman and Louisiana when I get a phone call from Dr. Sonny that Bailey’s conjugated bili is elevated to 0.6. My heart dropped. Wait what? What do you mean it’s elevated? I haven’t noticed any extra yellow in her eyes, or seen a decrease in appetite, or noticed any extra fussiness, and there’s zero fever. She’s been a little more sleepy lately but it’s 30 degrees outside and even I just want to lay cuddled in bed a little bit longer.

Of course denial sets in first… Are we sure those are Bailey’s labs? Could they have mixed up the blood with a different sicker baby? No no. Of course they’re her labs.

What could I have done differently? I picked up overtime on Tuesday to be there for a baby I’ve been taking care of for a while in the NICU. Have I been working too much? How did I NOT notice this bili increase in my own daughter!?

All these thoughts have been flooding my mind since I hung up the phone with the doctor. I feel like it’s all my fault. The guilt sets in as I’m rocking Bailey to sleep tonight, and I just lose it. Tears stream down my face as she’s fast asleep in my arms. I just wanna hold her forever because she’s safe right here in this moment with me right now.

I can’t help but wonder if this is the start of Bailey needing a liver transplant sooner rather than later, or just a fluke thing that will normalize in a few days.

We’ll recheck labs on Friday. Until then, I’ll be watching F.R.I.E.N.D.S on repeat and cuddling with my sweet baby.

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2 thoughts on “When you least expect it…

  1. Tiffany! Do you want the mom comment or the dad comment! Lol! Dad puts it right where it is. She’s your baby and she has BA. This is what will happen all along her life! Me. I know far too well exactly how you are feeling. Your life verse should be my life verse! You will hurt when she hurts and feel what she feels! And you will retrace every step trying to make it change! Only we aren’t the ones who controls all of that. But that doesn’t keep us from trying! Continue to give Bailey to Him. He made every intricate part of her sweet body and everything she will go through He already knows. Stay Strong!!! And when all else fails remember what your pediatrician always said: when you hear hoofs don’t look for zebras: it’s usually only horses! We love you sooooo much!

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  2. My heart is aching with yours. You are an awesome mother! Please never doubt yourself. It’s not worth your time or energy! As your mom reminded you, God’s got this. Bailey is His and He will be with her and you throughout this precarious path. We love you and will continue our daily prayers!

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