Blog 31 - FECS and Waiting for the Surgery Date

Our paediatrician told us about FECS at our local Disability Services centre so we contacted them and Jess was able to go to a group with other babies up to the age of one, with DS. This was confronting but also comforting. It was great to see what the other babies were doing and talk to the other mums.

Jess achieved her milestones e.g. Jess rolled from her tummy to her back at 12 weeks, she sat unaided at 7 months, she reached out to be picked up at 8 months, commando crawled at 9 months and she stood holding on at 9 months.

Each month we would take Jess to see the cardiologist. Each month the cardiologist would tell us that her surgery would be the next month. That month would pass and we would be told the same thing at the next appointment.

It was so hard to deal with. Everyday we would expectedly look in the mailbox for a letter from the hospital. We received an information pack about the cardiac unit but no booking. We read the booklet from front to back multiple times. There was a phone number of a nurse we could call. In desperation I rang her.

The nurse told me that it was not the cardiologist who made the decision, it was the cardiac surgeon. Each week/month he would look at all of the cases and decide who was the most urgent.

During this time people in our church were praying for the healing of Jessica's heart.

Each time the cardiologist put the ultrasound probe on Jessica's chest we expected him to tell us that a miracle had occurred and that she no longer had holes or her shared valve. But no that did not happen...

But what did happen was....God kept Jessica's blood separated by the pressure in her heart being at the perfect rate. This should not have been happening. The cardiologist was always amazed by this.
Because her blood was kept separate she was fairly well - no blueness and only a little fatigue.

Over the next 6 months we did see Jess start to deteriorate - mainly in her level of fatigue and amount of sleeping she was doing.

We got the hospital booking letter when she was just over 7 months old.

Oh no!

© 2012 by Jenny Woolsey

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