It’s been a month…

Hello Friends,

Please forgive the delayed communication. My goal is to post weekly updates on Baby Pearl from here out, so I’m sorry it’s been two weeks since the last one.

Praise the Lord, Pearl is nearly five weeks old! She continues to shock and amaze the Vanderbilt medical professionals and to bring joy and hope to her family. Recent developments in her medical care include the introduction of an ENT specialist. Not only has this doctor prescribed medicine and placed a nasal stint to help Pearl breathe, but he’s also advocating for her LIFE care. Up to this point, Pearl’s primary medical attention has come from hospice providers, and Eric and Ruth have been tremendously grateful for the support hospice has given. For so long, they anticipated saying goodbye to their sweet baby at any moment, so it made sense, as strange as it seems, to have assistance in helping Pearl die well. But now that she’s been alive for over a month, her ENT has referred the family to a pediatrician, a neurologist, and home health nursing care—assembling a team of professionals to treat Pearl as a child who’s future is life rather than certain, impending death.

Interestingly, Ursula Hennessey covered Pearl’s story in her http://www.ontheculture.com blog entry entitled “On doctors, faith, and the power of love.” Take a moment to read what she has to say about medical opinions in cases deemed terminal and about miracles like Pearl.

Pearl has grown a pound since birth and she is very healthy and more than stable; she’s even made strides in her eating habits—adding the occasional bottle to her tubing. Eric and Ruth are actually going through the first purge of Pearl baby things—she’s outgrowing stuff and that’s amazing!

The Browns are still adjusting to life with three kids. Needless to say, they are exhausted. Eric and Ruth try to sleep in shifts while covering Pearl’s feedings every three hours. Given her continued breathing difficulties, though, they rarely actually sleep soundly. As Eric recently tweeted, “No one here sleeps at the same time anymore. Ever. If Christ can raise bodies from the dead surely he can refresh bodies that are just tired.” Add to that new schedule the occasional evening when one or both of the other kids is up too—say vomiting or just bouncing off the walls—and meaningful rest becomes more than elusive.

While rest is the most significant need the family has, they also really could use a vehicle that would transport all of them at one time. Recently, this cause was championed by the fundraising site lovehoperevolution.org (LHR), but the family found that friends and family have been somewhat confused by the difference between LHR and the support efforts of this blog.  To avoid that confusion, the LHR campaign has been closed after raising $810 toward the van. A big thank you to David Kiggins and LHR for their help.  We are working out the details of how you can contribute further to the van cause and will update the support page here with developments.

Eric and Ruth are exceedingly grateful for your persistent prayers and celebrations of Pearl’s milestones. Please continue to pray for God to provide her medical team with wisdom and hope and Eric and Ruth with deep and meaningful rest. More generally, pray for the whole family to experience peace and joy even in their exhaustion. Let’s also continue to praise Him for Pearl’s life. What a miracle it is!

Blessings,

Suzanne

The new normal…

Hi everyone,

Last Thursday Ruth’s mom helped welcome baby Pearl home.

Since then, she’s celebrated her two week birthday.

She’s also been to the Tomato Fest and to church.

She’s eating, crying, pooping, and staying up all night!

And she’s getting presents! New socks and a sweet letter from 5 year old Pearl at church.

God is great. Life is good. Your prayers are working!

Love,
Suzanne

Test results are in…

Hi Everyone,

Yesterday Pearl finished up an EEG and had an MRI, and the results have been encouraging. The MRI confirmed what the 20 week ultrasound indicated about Pearl’s brain development—which is, as Eric puts it, “only bad news, not worse news.” The tests revealed that Pearl can indeed breathe unassisted, which is great news. Pearl’s MRI will be sent to the Carter Center, a leading researcher for HPE and will hopefully help inform medical practices for HPE diagnoses in years to come.

Pearl will likely always have small seizures but they have a care plan that should minimize their frequency and severity and have adjusted her medications such that she will be less groggy and lethargic. God is working in the hearts of the team at Vandy, who are now on board for medical support.

If you’ve wondered, the seemingly giant pacifier has been helping keep Pearl’s tongue from obstructing her breathing. They removed it earlier today and are watching her reaction over night. If she appears to be breathing well without it, she’ll be headed home tomorrow.  Given the 24 hour schedule Ruth and Eric have maintained between Pearl at the hospital and Brennan and Abigail at home, they are exhausted. While home offers the comfort of a bed for sleep, it also presents juggling challenges and additional caregiving responsibilities. Please pray for them to experience deep and meaningful rest.

As always, pray for Pearl’s continued strength and healing and for God to grant Brennan and Abbey patience and understanding beyond their years even as they fully enjoy being kids. And one last request from Eric, “The baby across the hall is in bad shape. He’s not been stable and his family isn’t from Nashville. They could use prayer too.”

God has granted so many of our prayer requests thus far. Praise him for all the big and small miracles and changed lives that are already a part of Pearl’s story.

Thank you for your ongoing care and support.

Love,
Suzanne

Baby Pearl is back in the NICU

Hi Friends,

After some inspiring conversations on Saturday night (one via twitter with a dad of a 10 yr old girl with alobar HPE, and one via phone with the founder of an HPE support organization called HoPE for Families), Ruth and Eric were encouraged to fight for care for Pearl. Since then, she has been readmitted to the NICU at Vanderbilt. Following are bits of correspondence and photos from Eric over the past couple of days:

Yesterday afternoon:
“So thankful for Vanderbilt. We’ve got an amazing team of pros in our backyard. Pearl’s got so much fight and is stable.”

Yesterday: “Pearl is getting an overnight EEG. I’m so grateful they want to figure out what’s going on. They are ready to fight for her.”

And earlier today: “Sweet girl just got fitted with her new EEG helmet. Her brother would be jealous.”

At this point, Ruth has gone home to rest, and Eric is at Vandy with Pearl. The EEG will last until tomorrow morning, after which they will evaluate what comes next.

As always, thank you for your prayers. Please continue to pray for positive and effective medical staff, for Pearl’s strength and healing, for Eric and Ruth to have wisdom and peace in decision making and rest in between. Please also pray for Brennan and Abigail during this tumultuous and likely confusing time.

Blessings,
Suzanne

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

Prayers for the Browns

Hi all,

Yesterday was a tough day for baby Pearl. Later in the day, she began to experience seizure activity that lasted well into the night—she had 50 seizures non-stop before hospice came to administer medication at 1:30am. Pearl is now stable and resting with her mom.

Eric and Ruth said goodbye to their baby numerous times yesterday, when it seemed the end was near, and started really considering and embracing the joy of her being wholly in the presence of Christ. That said, they are struggling with how best to pray for Pearl at this point: “I don’t know if we should ask God to give her strength or if we should just ask him to be merciful towards her. She’s weak and exhausted.” Eric via Twitter last night

Personally, I’m praying for both. It feels a little weird, but I’m asking Him for miraculous healing and for a magnificent homecoming simultaneously, whichever is His will. I am praying for Ruth and Eric to experience more and more fully the peace that passes understanding and to feel His hand on their shoulders as they make difficult decisions. And I am praising Him, thanking him for every moment of Pearl’s life.

However you feel led, please pray for Pearl, Ruth, Eric, Brennan and Abbey.

In Christ,
Suzanne