Pearl is home!

Eric via twitter: “Sweet Pearl is home. Hospice has set us up with all the gear we need. Our bedroom looks like a hospital room & we couldn’t be more grateful.”

Thank you all for your constant and diligent prayers for the Browns. Please continue to pray for Pearl’s healing, for the transition home to be relatively easy, for Ruth and Eric to have divine guidance in their caregiving.

Pearl is 2 days old!

Hi Everyone,

I must say, it did my heart good to see sweet Pearl in person yesterday and to hear the details of her birth and care. You should know her delivery was indeed quite easy (Ruth pushed for 20 minutes!) and that she’s scheduled to go home on Monday. More to come on that, but in the mean time:

from Eric via twitter 7/28/12:

“Friends, thanks for allowing us the freedom to continuously share updates with you. We see all the (re)tweets and love that you send though we don’t always to respond. We are blown away by the outpouring of love and privileged to have you walking/praying with us. Thanks for celebrating with us. How miraculous and beautiful the last 2 days have been. She’s almost 48 hrs old! Glory to the Giver of Life!”

and then…

“Last thing. When talking to Brennan about this miracle today he said ‘I didn’t hear him answer yes but I see that he answered yes.’ Amazing.”

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.”

Update on Pearl

Eric described Pearl’s first day like this:  “Pearl’s health is way beyond what we could ever have expected. She is thriving and engaging. It is miraculous. The docs don’t know what to do. They never thought she would make it this far….regardless of what happens from this point forward, we have all witnessed a miracle!”

In a more recent text (8:40pm) he shared: “Good day. Rough start to the night. She’s had a few spells when she stopped breathing for awhile. It’s scary.”

They are now in the NICU at the children’s hospital. Please continue to pray for miraculous healing and for God’s peace and love to supersede their fears.

Update: Baby Pearl is almost here

Hello Friends,

Here’s an update on behalf of the Browns:

Just heard from Ruth that her fluid levels are way down, and they are on the way to the hospital to induce labor.

Please pray for ease of delivery, for Pearl to come out fighting, for peace in decision making, for wisdom and grace in the medical staff, for Brennan and Abbey to feel unconditional love for their baby sister, for God’s overwhelming love to be thick in the delivery room.

Blessings,
Suzanne

Update on Baby Pearl: A Reason for Praise!

This morning, Ruth and Eric headed in for an ultrasound and midwife appointment as a follow up to the drop in Ruth’s amniotic fluid over the last couple of weeks. It’s my pleasure to report that the visit went well: Ruth’s fluid levels are holding and Pearl is stable. No need for an induction on this day–Praise the Lord!

Please continue to pray that Pearl can remain en utero for as long as possible. She’s 37 weeks now, and every additional week from here will foster her physical and neurological growth and strengthen her for delivery. Pray that she will come out fighting. Pray that Ruth and Eric will experience supernatural peace as they await her birth and in all of their decision making. Pray that the Lord will prepare Brennan and Abbey’s hearts, making love and compassion the foremost emotions they’ll experience when they meet their baby sister.

Blessings,

Suzanne

July 16, 2012: Important Delivery Update and Prayer Request

Friends and family,

It is starting to look as though there is a good chance Pearl may be coming a bit early.

We went in a couple weeks ago for what was supposed to be our last appointment with the specialists before delivery date (August 12), but Ruth and Pearl’s amniotic fluid measured a good bit low. They instructed her to drink tons of water and to come back in a week, so that is what we did last Thursday. Well, in spite of her efforts, her fluid dropped another 2 centimeters.

At last weeks appointment, they instructed us to come back again this coming Thursday to see where we stand. We’ve also been told that if things are low this week, then we will be faced with a few decisions that we are ill prepared to make.

After talking with her midwife this morning, we have decided that if we go in this Thursday and her fluid is not measuring as it should, we will probably admit Ruth and put her on an IV. The hope would be that an IV would help return her fluids to a good level, and that Pearl can continue to grow for a few more weeks.

If it continues to drop from that point, we may have to induce labor early, by about 3 weeks. I know 3 weeks doesn’t seem like an extremely early delivery, but Pearl is in the 3rd percentile in terms of size, so every day that she can stay in Ruth’s womb will help her to grow stronger, as she will need every ounce of strength for her delivery.

We are trying to avoid a scenario in which Pearl, due to a lack of amniotic fluid, would become distressed during labor, at which point we would have to decide whether or not to have a cesarean section.

These and many other decisions are coming rather quickly, and honestly we feel a little like deer in a headlight. We know that she can’t stay in there forever, though there is a side of us that wishes that she would. We aren’t prepared for any of this. We’ve learned to function fairly well within the tension of knowing what is likely to happen. We aren’t prepared for that to actually happen.

In a weird way, everything almost feels “right” like it is: 4 of us live outside the womb. 1 of us lives inside a womb. That’s just the way it is, and that has become the new normal.

We aren’t completely paralyzed by all of this, but I feel close to that. Her life doesn’t depend on the decisions that we make, but it sure it feels that way at times. Please continue to pray with us this week. Pray for wisdom and peace. Please pray for Pearl’s health. We want so much for her to be carried to term, and to be strong for her delivery.  Thank you all for being here with us now.
Eric Brown

 

Ruth’s Letter about her Daughter Pearl

Ruth has written a letter about Pearl which is published on her friend Amanda’s blog: life.edited. If you are new to Pearl’s story, you might start with this letter as it provides a beautiful summary. Or if you have been following this blog for some time, this letter will give you Ruth’s perspective.

Because I too have been integrally and permanently changed by this sweet baby girl, and because I couldn’t have said it better myself, I’m including Amanda’s intro to Ruth’s letter here:

Pearl Joy Brown: daughter of promise, giver of hope.

Today it is my great honor to introduce you my friends Ruth & Eric Brown
and the story of their precious, fearfully and wonderfully made daughter Pearl.
It is my hope that you will take time to read Ruth’s letter in its entirety. 
That you would hear Pearl’s story completely, painful as it is.
And that you would not flinch but look directly and deeply into the eyes of a loving God who cares fiercely and fully for his children. 
That you would see Pearl. That you would find hope. That you would be changed.
Pearl has changed me and I am so grateful.

Read Ruth’s Letter here: http://life-edited.blogspot.com/2012/07/pearl-joy-brown-daughter-of-promise.html

July 7, 2012

Friends and Family,

In a weird way, it seems that everything that needs to be said, has already been said. But in another way, I feel like there are so many nuances of life that I want to share with you all, as these emails that I write are serving as a quasi-journaling experience for me. Thanks for being patient with me while I attempt to get a few things in writing.

I hope somehow, by being as steeped in her story as most of you are, that you will be able to glean a good bit about God’s sovereignty and goodness. I hope that you are able to come to grips with the fact that like Pearl, you will never cease to exist and that you find yourself pondering what life will look like for you in 1,000 years. These perspectives change everything, and by God’s grace, maybe you can reap all of the benefits of having a baby like Pearl without having to go through the dark seasons of heartache that also come with having a baby like her. It’s been so worth it already, and we haven’t even met her yet. The joy we are experiencing is such a huge payoff to this temporal suffering.

It’s crazy to think that we are coming up on four months since that first ultrasound when we found that our baby girl has holoprosencephaly. That’s almost a third of a year and it still feels like yesterday! On the other hand however, I scarcely remember what life was like without her.  I don’t remember the naivety with which we used to talk and dream. I’m so grateful that we live in 2012 and we have doctors who can tell us at 20 weeks that our daughter is probably not going to make it. Without that knowledge, there is no way that we would have connected with her like we have. I never felt a connection this intense, or this early on with our other children. I assumed that we would connect on the other side of the womb. And we have.

We have been completely overwhelmed in recent weeks by our community.  We have been carried in ways that I never fathomed, and if I’m honest, the amount that we are being carried is almost embarrassing at times. Even that embarrassment has been good, though. Having your self-sufficient, anti-gospel pride be obliterated publicly is so freeing. None of us are self-sufficient. That’s a lie. We need each other, and it is amazingly beautiful to see this play out. I can’t imagine what it would be like to go through this without a community such as ours. The reality is that that happens all the time, though. You all have carried us in the truest form. All the little things you do that you may feel are trite and meaningless mean the world to us.

As you saw in my last email, there is a celebration for Pearl coming up on the 17th. It has been astounding to watch this come together. Again, friends and strangers doing things that if they didn’t do, I wouldn’t have thought any different of them for not doing. And I know it’s different. I know that people don’t usually hold celebratory events for unborn babies with terminal diagnoses. I understand why they don’t normally do these things. I understand why there has been a fair amount of head scratching surrounding this concert.

But we have sat at the table of God and feasted on his goodness and mercy. He’s been so good to us, and so good to Pearl. He has not only given us three amazing children, but he has given us himself. I don’t know how to say that in a less “Sunday School” way or a way that makes more sense. After spending so many years trying to learn about God, he has chosen to reveal so much of himself to us now. I’m not sure our hearts would have been as soft to his revealing of himself if it weren’t for Pearl. It is such a privilege to have her in our life, and to watch how God uses her to change us, and from what you’ve said, a lot of you have been changed as well.

That’s why we’re celebrating. That’s why we want to shout from the rooftops. There is a weighty joy surrounding all of her life, but to deny the joy and only focus on the sadness would be doing her a terrible disservice. Like all of us, there is so much more to her than her weakness. There may well come a time in the near future where heavy grieving will be appropriate, but this night we will be celebrating. Both of these things seem proper to me.

You have all been amazing. We are so grateful for all the times you randomly check in to see how we are doing. Even the times you stand there speechless, not having a clue what to say, so not trying to say anything, speak volumes about your awareness of how heavy this is to carry. We love it when you don’t know what to say. Most of the time, we don’t either. Please continue to pray. Please continue to petition Heaven for a miracle. We want so much for God to give us a little girl that can model to the world what it means to have no concept of self-sufficiency, and to constantly remind us all how handicapped we are, and how desperately we need to be carried by Christ. Whatever the outcome, though, we are grateful. Thank you for walking with us.

 

Eric Brown