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Meeting his team: March 2, 2012

April 9, 2012

Worse news today at 21 weeks and 5 days. One of Dr Ryan’s fellows is from Belgium, a CDH centre, and he was able to get a better angle on the ultrasound than the fellow from last time. He discovered that a lobe of the liver is up in addition to the stomach and bowel and that his lungs are much smaller than first suspected. His new LHR is 0.78 or 30% of what it should be. This reduces his odds to 50/50. Hard news to hear. He is completely perfect in every other way and apparently has my nose 🙂
We met with his team. Dr Langer, who is my friend Jess’s dad and he used to work with Tim’s Uncle Dave who is also a CDH surgeon in Texas. Dr Langer will be repairing the defect after little man is born. It is a straightforward surgery, but it’s the time it takes for his lungs to function and the interventions that may be necessary that pose the risks. Dr Langer was amazing, totally honest and straightforward and comforting to talk to. It’s going to be a long, hard journey, but we really trust him. We also met with Dr Young, who is the neonatologist who will stabilize him after he is born and transport him to Sick Kids.
After that we met with Genetics. His amnio results came back normal and he is definitely a HE. They are going to send his cells to the States for a $3,000 test to make sure there are no other problems. Thank God for universal health care.
We met one more time with Dr Ryan. He is fantastic. He talked to us about an in utero surgery that he may or may not qualify for. It is called tracheal occlusion. We have to go for an MRI and another ultrasound at 26 weeks to see if he qualifies. It would be a mixed blessing. The surgery is amazing and makes lungs grow, but it has a 15-20% risk of early rupture of membranes so only the sickest babies qualify. I don’t want him to be one of the sickest babies.
We’re going to Blue Mountain this weekend with friends and then off to the Dominican with the Whales for March Break. Nothing we can do about the CDH so we’re going to keep trying to enjoy our lives. I am not eating chocolate for Lent though, trying to get God back on our side.

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