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
- A MIRACLE.
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.
(photo credit Jared Fincher Photography)