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.