The doctor spent over an hour analyzing my baby’s heart during the 31-week ultrasound.  This was our second child and I knew something was not right.  Turns out Abby had a congenital heart condition.   

Nothing can prepare you for that bit of news.  Nothing.   Don’t waste time thinking about the what ifs.  Save your energy for getting ready.  Decisions need to be made.   Which hospital to deliver at?  Which hospital would be best for Abby post-birth?  What level of care can its NICU provide?  Which OB should deliver?  My OB did not have admitting rights at the hospital of our choice.   So many decisions.  Don’t think about the what ifs.

I was afraid before the birth.  So many things can go wrong.  I knew they were going to take my baby from me.  Our three year old, our dog, our home all fell on my husband’s shoulders.  He is the more rational one.   Just be strong and patient.

Abby had an abnormality in her heart.  They had to stop Abby’s heart before they could operate.  She looked “dead” just laying there. Nothing can prepare you for that. Her chest was kept open for 24 hours after the surgery.  Nothing can prepare you for that.

Then you wait.  That’s all you do in the hospital.  Just wait.  Waited for 56 days in the NICU.  I wasn’t in control of anything.  I needed ownership of something.  I am her mother after all, but feedings and diaper changes were on the nurses’ schedule.  The nurses’ strength carried me through.  They were my rock.  They understood me as a person, and took the white coat out of it.

She has had three major surgeries.  This surgeon has never nicked an artery before, but he nicked one during one of Abby’s procedures.  She was losing blood as quickly as they were giving it to her.  They replaced her blood volume twice.  She made it.  She is a fighter.

The stress and aggravation had to go somewhere.  Small things can lead to big arguments, but our marriage survived.  We promised to be at church every Sunday.  Every Sunday.  Over 50% of couples with seriously ill children don’t make it.  That wasn’t going to be us.

Our story is documented on our Facebook pages.  One of our posts had over a million views.  We used that momentum to raise money and help the NICU get more sound machines.  

Have a late term ultrasound.  That’s our advice.  Just schedule it. Even if you don’t think you need it.  It will buy you time to prepare if something is not right.

Three operations and 10 months later Abby is fine. Abby should live a relatively long and healthy life.  

We are fortunate. We were able to bring our baby home. The biggest resource is other parents who have gone through something similar.  Reach out to us.

Social media links:

https://www.facebook.com/CHDad18/ – Congenital Heart Dad

https://www.facebook.com/AbbysHeartUpdates/ – Praying for Abby’s Heart

https://www.facebook.com/thepracticalheartmom/ – The Practical Heart Mom