Monday, September 19, 2016

Going Home!

This dark, blurry view means MANY things:

1. We've been discharged from the hospital! (Obviously lots of good things had to happen for us to be discharged!)

2. My body responded well to the heart medicine (that needed to get into Lucy's system to slow her heart rate)

3. Lucy's little body responded well and her heart rate has been consistently in the 130's.

4. We are on our way home!


Saturday, September 17, 2016

Update - September 17th

We have been blown away by the amount of support we have received from thousands praying for Lucy and for our family. I want to say a huge thank you to Kelly Stamps for featuring me on her blog and helping to get the word out about our story. In case you missed her sweet post, you can check it out HERE.

Yesterday was our big appointment that we had been anticipating for what seemed like an eternity. Everything was going well at the beginning of the appointment. We had a regular ultrasound, and then another tech came in to do the fetal echo (which is basically an extremely detailed ultrasound of the heart). Everything was looking the same and "normal" (Lucy's normal), and then the tech went to meet with the cardiologist for a few minutes.

About 10 minutes passed, the cardiologist and the tech entered our room (which is normal). They started looking at Lucy's heart again, and suddenly her heart was at a super rapid 250 beats per minute (not normal)!

We discussed a few things about the echo. The biggest highlight was Lucy's prognosis. They determined this by several factors they had seen in the echo. They rated her on a scale from 1 to 10 (the lower the number, the better). They gave Lucy a 3! I take that as great news!

There wasn't a whole lot of time to linger on this point, though. Lucy's rapid heart rate called for a quick change in the rest of our plans for appointments yesterday.

I have since been admitted to the hospital and put on medication to try and help regulate Lucy's heart rate to a "normal," safe range. We will be staying here through the weekend so they can monitor my heart and Lucy's as well. When things reach a safe and stable range, we should be able to go home.

However, if they are not able to regulate things and see that Lucy is not responding well or handling things well, at that point they would need to deliver and get things going and taken care of outside the womb.

Since we have been at the hospital, they have done a couple EKG's on me, and I was able to start the medication at 10:00 last night. So far, my heart has handled the medicine well. If my body continues to handle it well, they will increase and adjust the dosage so that it can help Lucy the way it needs to.

Specific prayer requests:

  • Lucy's heart rate to regulate to a safe range and for her to stay in my belly for as long as possible. I really can't emphasize this enough. The longer Lucy can bake and grow big and strong inside me, the better she will do and be able to handle all that is ahead of her when she is born
  • No complications with the heart medicine (for myself or for Lucy)
  • Dr. Bornemeier (cardiologist from Arkansas Children's Hospital), for wisdom as she is in charge of decisions on medication and dosages.
  • Dr. Warlord and the team here at UAMS currently taking care of me and Lucy. 
  • Anything else you want to add!
Again, we can't thank all of you enough for your prayers. Thank you for sharing our story and calling on prayer warriors from all across our nation and across the globe. We are truly humbled by all of the love and support. 

Sunday, September 11, 2016

Friday's Appointment - Sept. 9th

I apologize that I did not update sooner!

First of all, I can't even put into words how thankful, blessed and overwhelmed we have been by everyone's love and support. Thousands have heard of Lucy's story and are praying. Thank you to everyone who has shared our story and to everyone who is praying. We are truly blessed.

We had an appointment Friday, and finally, a normal, non-eventful appointment. Nothing new to tell! No fluid building up anywhere. Dr. Cummings was happy with everything she saw.

Next week is a big week with the echo, and we will be meeting with our neonatologist, Dr. Kim to discuss what we can expect when Lucy is born. Meeting with Comfort Care is actually not a for sure thing. All depends on what they see in the echo. But with Lucy's case being severe Ebstein's, we are preparing for the worst and expecting to meet with them.

But for now, we are so beyond thankful to have had a "normal" routine visit!

We can't thank everyone enough for praying with us and on our behalf.


Wednesday, September 7, 2016

The Latest on Lucy

I figure it's time to give a more detailed update on what we know with Lucy.

To catch anyone up to date who may just be jumping into the story, I am 33 weeks pregnant with our little Lucy who has been diagnosed with a severe form of Ebstein's Anomaly. This will require multiple heart surgeries before the age of 2 or 3 years old (one surgery before she can ever leave the hospital when she is born.)

This diagnosis is terrifying.

Not only are the heart surgeries terrifying, but with each doctor's appointment, the reality that Lucy may not survive when she is born becomes more and more apparent to us.

Other than a complete healing miracle, these heart surgeries are the best we can hope for. We hope and pray and beg and plead for life. We want to bring our baby girl home.

We recently found out that because of Lucy's condition, she is at a higher risk of developing hydrops (a condition that occurs when large amounts of fluid build up in a baby’s tissues and organs causing extreme swelling). I honestly can't remember what they said will need to take place if Lucy develops hydrops. All I know is it wouldn't be good.

We need Lucy to stay in my belly for as long as possible. We need her to grow big and strong so that when she is born her little body will be able fight for life. One, to be able to better handle being separated from the placenta, and two, to cope with the heart surgeries to come.

Friday, September 16th, we will have another fetal echo. At this appointment they will have a better idea what to expect when Lucy is born. Also at this appointment, we will meet with Comfort Care to discuss the worst. That when Lucy is born, if she isn't going to make it, what we want our few first and final moments to look like with her.

All I can say is this is a parent's worst nightmare.

I dread every single appointment that is coming up (which from this point forward is every Friday), but especially September 16th.

Specific ways to pray:
  • Lucy to stay in my belly as long as possible.
  • No hydrops - no fluid build up
  • All-around health for myself and for Lucy
  • Life - we beg and plead for life - we want to bring Lucy home
  • Wisdom for all doctors involved
    • Dr. Cummings - my OB
    • The cardiologists (Dr. Bornemeier is one of them)
    • Dr. Kim - Lucy's neonatologist
    • Any other doctors and nurses who may be involved
    • The surgeons
  • Every Friday from this point forward (for our appointments)
    • Peace, strength, grace, etc.
  • Anything else the Spirit leads you to pray
Thank you for joining us in prayer.

Please know that I am not strong. I am actually very weak and very weary from the past 4 years I have been walking as my mom was diagnosed with, walked through and taken from cancer. I do not know why God has chosen me and my family for this journey. I have to be totally honest and say it is not encouraging to me when I hear the words, "Jordan, you are brave and you are strong. You can do this."


I am not brave. I am not strong. I don't want any part of this story I am currently walking.

I am begging God to please relent. To please show His compassion and His favor. To please allow me and my family to enter into a season of rest and freedom from these horrible trials.

We covet your prayers.

Saturday, August 20, 2016

Not What We Had Hoped

After an exhausting day of appointments, I just needed to rest.. Thank you everyone for your prayers. We did not receive the news we were hoping for. All is still the same with our Lucy's heart. Plus an additional complication that will require me to go twice a week to have her heart rate monitored. Prayers for continued strength on this weary journey. Prayers for wisdom as we have some decisions to make concerning where we will deliver and where Lucy's care will be. Just prayers for grace and mercy. My momma heart hurts deeply. I want to hold my baby girl in my arms when she is born. To know that she is healed and whole. We are disappointed. We are human. It will take a bit to get back on my feet. Just continued prayers please. #prayforLucyLion

Friday, August 19, 2016

Ultrasound Day!

It's ultrasound day! We are on our way to Little Rock now. Our appointment is at 1:30. Would you please take a moment to pause and join us in praying these verses over this day.

"You have given him his heart's desire and have not withheld the request of his lips." Psalm 21:2

"Be exalted, O Lord, in your strength! We will sing and praise your power." Psalm 21:13

"May He grant you your heart's desire and fulfill all your plans! ...May the Lord fulfill all your petitions." Psalm 20:4-5

"He sent from on high, He took me; He drew me out of many waters... He brought me out into a broad place; He rescued me, because He delighted in me." Psalm 18:16,19

"Wondrously show your steadfast love..." Psalm 17:7

"The Lord has heard my plea; the Lord accepts my prayer." Psalm 6:9

"So the realm of Jehoshaphat was quiet, for his God gave him rest all around." 2 Chronicles 20:30

"In your hand are power and might, so that none is able to withstand you." 2 Chronicles 20:6

"...but only say the word, and my servant will be healed." Matthew 8:8

"Do not be afraid and do not be dismayed at this great horde, for the battle is not yours but God's." 2 Chronicles 20:15

"He who fashions the hearts of them all..." Psalm 33:15

"For He spoke, and it came to be; He commanded, and it stood firm." Psalm 33:9


Wednesday, August 10, 2016

What If He Doesn't

I don't have any updates on Lucy yet. Our next ultrasound will be next Friday, August 19th at UAMS in Little Rock. We are specifically praying that God will heal her heart and that we will see a miracle at that appointment and the doctors will be utterly confused and amazed!

As we have had more time to process Lucy's diagnosis, I find myself, for the most part, having peace and fully trusting God and His healing power. But I would by lying if I said paralyzing fear never creeps in. It is a daily battle. And some days, it has been a losing battle on my end.

This waiting period is so difficult. It's hard not to let my mind wonder to the moment when she is born and let all the scary, potential outcomes play out. I so desperately long for our baby girl to be born fully healed with a heart that functions at 100%. I believe God can do it.

My biggest fear is, "What if He doesn't?"

This is my biggest fear because this is the road I've been walking since December 2013 - when my family and I entered into the "What if He doesn't?" When we prayed and prayed and begged for healing for my mom from cancer. We knew He could do it. But He didn't.

My walk with the Lord has been a struggle ever since. Yes, as time has gone on, the day-to-day has gotten, I guess, "easier." But I still struggle with lies straight from the stupid enemy.

I would say that, yes, for the most part my heart has continued to heal. Truth prevails more than the lies. I know God is good. I know God is faithful. I believe and I proclaim that He works all things together for our good and for His glory. I know He loves me. I know He hasn't forgotten about me.

But sometimes, those truths are still so hard to proclaim. This road I have been walking without my mom still knocks the breath out of me at times. I still collapse on the floor (literally) at times and sob from missing her so painfully and so deeply. I'm not through the fire yet.

So this fear of "What if He doesn't" has the potential to absolutely cripple me.

I want God to show Himself powerful. I want Him to show that He is still in the business of miracles and healing. And I want this so badly because I fear for myself how I will respond if He doesn't.

I'm already so weary. So broken and tired. And to find myself in a place of praying for another miracle has the potential to open so many wounds (and at times it does open those wounds).

I cry out to God as His daughter. I beg Him to look upon me with mercy and compassion. To relent from this fire. I beg and I plead with Him to give me and my family rest from trials as He did for Jehoshaphat in 2 Chronicles 20:30 - "So the realm of Jehoshaphat was quiet, for his God gave him rest all around." He IS a good, good Father. He delights in blessing His children with good.

This may be a silly example, but just as I begged and begged and begged my parents to get me a puppy when I was 12. Even the fallen, sinful humans that they are, they gave me the puppy I so desired. I come to God in this same way. I beg and I beg and I beg Him, as His daughter, to heal my baby girl's heart. He is good - so far beyond what we can think or imagine. He is good. Oh, how I plead with Him to please heal Lucy's heart. This is our desire.

Please, as you continue to pray for healing for Lucy's heart, I ask you to pray for my heart as well. For strength each and every single day. For God to calm my fears. To rest in Him. To not let my thoughts wonder into tomorrow, but to stay in today.

Thank you for your prayers.