St Jude: Day 1, Morning

8:30 am

Wow. This day is more than I could have imagined. It’s jam packed with appointment after appointment and Demi can’t have breast milk after this point. I woke up ready to “top her off” and she really wasn’t interested. So now I’m all in a tizzy about the hours to come and her being so hungry. I have pedialyte and she can have that for the next 2 hours if need be. All you breast feeding mommas definitely know my struggle with this. I currently need to pump and don’t really have a plan for that so I’ll wait a little bit.

We are waiting for lab work then we will head over to her clinic to start her day. I’m heartbroken looking around and just crying tear after tear as I see each child roll by. This is literally a sight I could have never witnessed. I have always been unable to read stories of sick children because emotionally I haven’t been able to handle it after losing Sawyer. I do however pray for each and every child’s story I see. I just can’t get over involved in details.

I’m hopeful for good news today and to be released from St Jude. I know God has a special purpose for me seeing all of these children today and I welcome that as hard as it may be. Every single child is so precious as they roll by in their wagon, wheelchair or walk by.


IV attempt failed. CBC clotted. They will know do her IV once she is asleep. The plan is to put her to sleep to look in the eye for a proper diagnosis and plan for her


She drank some pedialyte very happily. Mommy’s sweet baby is so tough.


Waiting for anesthesia to discuss pre-op information and her exam under anesthesia. Beau and Mimi are running around playing on the property.

Wow… talking with some other parents in this waiting room. Overwhelming. I’m at a loss. My God. Praying hard for these children. Praying for my baby.

3 Comments Add yours

  1. Leah Richard says:

    There are no words that anyone can say to make any of this better for you. I’m so sorry you are having to deal with this, but God definitely has a plan. Your sweet Demi is already so tough, and you are such a strong mama. You have so many people praying and sending positive vibes. Hang in there and take one task at a time. If there is anything we can do to help, we are only a phone call away. 💕

    Liked by 1 person

  2. Dwana says:

    Your little angel is in my prayers.

    Liked by 1 person

  3. Denise Soto says:

    Jordyn, I’m so sorry to hear about the struggle you are facing. God will give you strength and courage. There is a light at the end of your journey. My nephew had retina blasting, he is now 22 years old. I’ve seen the journey. He is a happy, adjusted man. I will keep you, your precious baby and family in my prayers. Love , Denise 😘❤️

    Liked by 1 person

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