Baby Pearl update

** Note: Just before posting this update, there was a new update from Eric that reads, “Back at the ER, hoping to be re-admitted to the NICU. Still not breathing well.” Please take a moment now to pray for Pearl, her doctors, and Ruth & Eric. Thank you. ***

Hi all,

I am updating for Suzanne this weekend to give you the latest on Baby Pearl and how you can support the Browns with your prayers.

Suzanne’s last email explained that Pearl had multiple seizures Thursday night, subsiding after hospice came to administer seizure meds. Friday was a much better day, with very few seizures and a lot of rest and recuperating for Pearl and her parents. It was also Pearl’s one week birthday!

Some of Eric’s tweets/photos from Friday:

“Pearl has slept all day. Her body is recovering from last night. That didn’t stop us from celebrating her birthday!”

 
“Such a peaceful day. We are overwhelmed with gratitude.”
 

“Still no seizures tonight! Praise God for this. We’ve had a surge in hope that Pearls symptoms can be managed. First bedtime without fear.”

And then on Saturday:

“This is what the morning after a night with no seizures looks like.”

Saturday evening, however, was another very difficult one. Pearl had difficultly breathing, presumably a side effect of the seizure medication which relaxes her brain. Hospice and NICU doctors are unable to advise Eric & Ruth in these type of HPE-specific situations due to their limited understanding of her condition. Eric was able to connect with a couple of folks late last night – through Twitter, amazingly enough – who could offer some HPE insight and help them better understand how to help Pearl.

Eric’s updates from Saturday night:

“Thank you community for not giving up! You all are amazing. We’ve got some answers and a quasi game plan. Please continue to pray for Pearl.”

“Friends. You moved in amazing ways tonight and people responded. Pearl is breathing better an we have figured out what was happening. We are so grateful for those who responded. HPE is understood by so few people and those few people showed up tonight. We feel like confused kids most of the time, not knowing how to respond to all of Pearls misadventures. Thanks to you all for carrying us.”

And then, “I must sound like the boy who cried wolf. This is just tough and confusing. God is answering the prayers you all pray.”

 

Ruth and Eric still very much need your prayers and support as they continue to care for Baby Pearl and for Brennan & Abbey. Please pray for wisdom as they learn more about Pearl’s condition and how to manage her symptoms, for wisdom regarding difficult decisions that must be made along the way, and for peace and tangible assurances of God’s presence to cover each moment of their days.

Thanks be to God for Pearl’s life and for the growing list of specific answers to your prayers. The Browns are incredibly grateful for you.

If you’d like to follow Eric’s twitter feed for current updates, you can do so at twitter.com/ebrown_photo. (His account is public, so you do not have to have a Twitter account to view his updates.)

With hope,

Amanda
Advertisements

One thought on “Baby Pearl update

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s