Eric’s most recent update

Baby Pearl update at 4am from Eric on twitter (@ebrown_photo if you want to follow):

“I feel as though I should take advantage of being awake at 3:49am to let you know how Pearl is doing.

She’s doing okay, but continues to have moments when it appears that her brain has forgotten to tell her body to breathe. So far, her body continues to resolve these episodes, though we have been informed that this is what usually proves terminal for HPE babies.

I wish doctors would stop saying that their main goal is to keep her comfortable and to make sure we are happy with what they’ve done. They do have her on a feeding tube and hope to pull her off of the IV today. That’s good news!

Knowing how little effort it takes on his part for God to heal her, yet watching him execute seemingly different plans is so hard. But he has been so good to us. Pearl has been with us outside the womb for over 24 hrs so far! It’s been beautiful and we are so thankful.”

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2 thoughts on “Eric’s most recent update

  1. Pearl is just beautiful. I love how she’s looking right at the camera for her pic! Amazing amazing amazing. Rejoicing with you for your day with her. Praying. with much love.

  2. I don’t know much about HPE, but I do know about premies and apnea. All of my babies were premies, the smallest weighing in at 2 lbs 3 oz. and the largest 4 lbs 6 oz. Apnea is scary for parents. Two of mine were on apnea monitors at the same time. Seems that apnea is pretty common for premies. All of mine had feeding tubes for a while, one had a complete blood transfusion, one had a semi permanent iv surgically inserted into her jugular tube so that she could be given a richer iv. Hang in there. Above all else, pray and let Pearl know you are there for her. Give her as much human contact as she is allowed. I believe that is so very important to these tiny ones. Praying for you and her.

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