…or rather, the day before the big day.
This morning I traveled to Children’s to get my blood work done in preparation for the c-section tomorrow. I was also scheduled to do a meet and greet with my OR nurse who is in charge of my care tomorrow. In and out, that’s what I thought. Down in the morning, back by lunch. However, as I’m learning, there is never a quick visit to Children’s!
In addition to the above, I ended up meeting with the cardiologist, one of the pediatric surgeons who will be attending baby boy, and the inpatient social worker who will be our family’s hospital liaison. All good people to meet with. Dr. Donofrio went over some last minute tweaking to the birthing plan. In a nutshell, Dr. Jonas (the head surgeon) decided he wants to not only be present at the birth, but also wants to cover baby boy’s heart tomorrow directly after birth. This is something they were thinking of doing several days after birth, but he feels it gives baby boy better protection from infection and other complications that can arise from having the heart exposed. So, the meeting with the surgeon today was to go over the process of that type of surgery, the risks and benefits, etc.
Dr. Donofrio also asked Henry and I to consider allowing Children’s PR department to document our family’s story. Ectopic Cordis, especially our baby’s type, is rare. Only 2-3 babies are born like this a year (I think worldwide) so there isn’t much information out there for the general public. This would raise awareness of congenital heart defects in general as well as (if the Lord wills) give a positive story on Ectopic Cordis. I prayed early on that I wanted God to be glorified no matter the outcome and this seems like one more way we can share what God has done for us and our baby. We aren’t sure what it all entails, but it is on the table and we are contemplating our options.
So, with all that being said, I finally made it home late afternoon to a quiet house. Henry dropped the girls off this morning at my sister’s house where they will stay for the next week or so while Henry and I focus on baby boy and his plan going forward. This will also lessen the anxiety felt by Natalie, who is very aware that baby boy is coming (although she doesn’t know it’s tomorrow) and that he has a boo boo on his heart. It was hard for me to see them go, but I know it is better for them not to be in the middle of this stressful event.
As far as logistics, people have been asking for some specifics so here is what we know for the 19th:
1) The c-section is scheduled for 7 a.m. EST
2) Baby boy will immediately be whisked into an adjoining OR, a breathing tube inserted, and a small surgery done to cover his exposed heart.
3) Mommy will be wheeled to Washington Hospital Center for recovery and will stay the normal post-partum length of time, while baby boy will be stay at Children’s in their Cardiac ICI (CICU) where he will be assessed and treated as needed.
4) A friend of a friend graciously loaned us an air card so we will have internet access and can update the blog from the hospital. Yeah!! So, we will get the information up as soon as we have it…
That’s it for now. Thanks to everyone who has reached out to us, offering practical help and prayers. We appreciate the network of friends and family God has provided for us, especially as we face the unknown. We’ll keep you posted!
(c) 2016 Leighann Marquiss
Comments (9)
thanks for the update!!! praying, praying, praying!!!
Yes, we will be praying for all of you! Especially baby boy, and Daddy and Mommy in their decision making.
We are praying for you and Baby Boy from the other side of the world!!!
We love you beebers. I think it took all 7 kids about 2 minutes to fall asleep. Your kids are cute. I will be praying the entire day for baby boy. Walk, Walk, Walk – that is the key for your recovery. Will be anxious to read your updates.
You and your family are in my prayers. I am planning to wake up before 7 and spend some extra time in prayer for you. I know God will be glorified.
Be strong, and know that your family’s story is touching people hundreds of miles away!
God is good!
Thank you so much for your updates. We are continuing to pray for you and your family. May God be glorified tomorrow and throughout your journey.
Love you! I will keep you, Henry, and baby boy before the Lord tomorrow!
God is so great, I am just now reading your post…the exact time you are in surgery for your c-section. Our whole family is together and we prayed as a family for you all and will continue to do so! Hugs from afar!
praying for you!!!!