Update 10/24: The Email

On Monday, October 24, my wife received an email from a family member that instilled within us a spark of hope. 

Long after we chased through the email, which I’ll get to in a moment, this quote hit us, and we’d like to share it with you:

“It”, for us, is Baby O’s diagnosis. It is hard, and we fight back the tears and we get mentally exhausted more easily, and at times we feel emotionally spent. But God is still good.

But “it” for you may be a job loss, medical news, a political issue, a relationship break. Know this: your impossible position doesn’t have to stop you from moving forward. It just means you have to move differently, trusting in the Lord to direct your unknown (to you) steps.

Back to the email: Mary called me shortly after I got ready for work, excitedly telling me about this email about a congresswoman’s miracle baby.  Her hopes were high.

So she asked if I could “do my thing” and find out more (I’m pretty good at internet research).

Needless to say, I found the Congresswoman’s office numbers on her website and put in a message at her state office as well as spoke to an actual aide in her DC office. She assured me that Congresswoman Beutler would get back with me, but for safe measure I emailed their generic email as well.

Approximately 3:30pm that day I received a phone call from a Washington state number, and on the other end I hear:

“Hi, it’s Jaime Herrera Beutler. Is this James?”

I must have sounded like an idiot, tripping over “Uh yes, uh yeah, Congressw…”

“Jaime. Call me Jaime.”

We spoke about their story, and she asked about ours. During our 30 minute conversation, I heard her say to a girl near her, “No, you can’t have Coke right now, but mommy will give you a drink.”

I asked, “Is that Abigail?” (Her daughter who was also diagnosed with Potter’s Syndrome, and is the “miracle baby“)

“Yes, she’s 3 and smart as a whip.”

At the end of a hopeful conversation, she proceeded to say that the next step, if we’d like, is that she would contact some nephrologists and ask about one near us that does preemie dialysis, as well as connecting my wife to a woman in California that has also gone through this bit with two older kids at home (like us!).

She closed with that statement I shared above, “We share this (their story) because it (Potter’s Syndrome) doesn’t have to be a death sentence.”

Folks: share your stories. You never know who needs to hear it.

So, here’s the update:

Jaime is working on finding us a closer hospital that does preemie dialysis, because once we deliver, Baby O will need that immediately, for 2-3 months, and then for a couple years after that until Baby O gets a kidney transplant.

After finding that, we will cross check to see if there is a hospital nearby that performs the amnioinfusions, giving the baby enough fluid to build lungs.

Once we’ve nailed those down, it’s time to get started.

We thank you for your prayers and can’t wait to update you on the stories of who’s praying for us and where as well as stories of how people have encouraged us.


20 thoughts on “Update 10/24: The Email

  1. Oh James and Mary that is so encouraging….so thankful that you are finding answers and we will all continue to be in prayer for baby O and you guys as you continue down this journey!!

  2. Mary and James know that I will kneel and raise Baby O in prayer…. I will keep you and James close to my heart.

  3. What a tremendous testimony of God’s provisions.Know that the Long family will continue to lift your family in prayer.We look forward and expect to hear of the miracles our God is preforming

  4. James you know that you and Mary and baby O are in our hearts and prayers. Please don’t hesitate to let Chris and I know if there is anything that we can do. And remember that our God can do anything. We love and miss you guys.

  5. WOW—God works in amazing and wonderful ways—praying that He will be glorify in all of this and also praying for the peace, comfort and strength that can only come from the Lord.

  6. We are told and told that God is in control, and His miracles have no boundaries, this is a prime example. I know the doctors are trained and have keen intelligence, but I pray for your family to receive one of those miracles! Your story will be such a testimony and giving all of the glory to God. Praying hard for your sweet family.

  7. I’m praying so hard that this is God’s miracle for our Baby O! Whatever may happen, God is in control and I’m praying to that miracle or no, we can still proclaim, “My God is an awesome God! He can move mountains!” And heal our broken hearts.

  8. James& Mary this is so encouraging. I believe we serve an Awesome God that hears our prayers and knows our needs. I pray that through this journey God’s love and care for your family will be felt in a mighty way.

  9. Well God is on time, as usual. He’s led me to pray that he would perform a miracle in this baby since He’s still in that business today. He is already doing just that in giving you hope for a future with this baby. God truly is good. Love all of you very much

  10. James and Mary may the Holy Spirit be the wind beneath you, to raise you higher in faith. Continuing to pray with your beautiful family.

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 )

Google photo

You are commenting using your Google 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 )

Connecting to %s