Thursday, December 08, 2005

PRS 101

It's time now to explain a little more about what exactly was wrong with Jairus.

Pierre Robin Sequence is a little known genetic birth defect that caused a few problems for Jairus: his jaw didn't grow in utero (micrognathia), he had a cleft soft palate and a few other anomalies. I'll list them because you never know when someone else's baby might have been born the same way and then we might discover more about our wee boy.
~huge soft spot
~hypospadius (I'm not getting into that--if you know, then you know)
~sacral dimple (Thank God no spina bifida)
~ear tag (Again, Thank God no inner ear deformities)
~contractions of the hands (no way would they open up...)
~ulnar deviation (Oh the medical terms we learn...his fingers slant outwards)
~low set ears

Overall, he had what I've heard referred to as 'midline' issues. When the two halves of his little body were coming together during those early weeks of gestation, they...had difficulties, I guess.

When the doctors first told us what he had wrong, it didn't seem all that urgent. So he'd have a small chin. I had no idea what was coming...

"He'll have problems breathing" is vague doctor language for his tongue couldn't fit into his mouth because of the small jaw. This is what caused the cleft and then after birth his tongue was forced back into his throat, cutting off his airway. A tracheostomy was a possibility, but thank God that didn't have to happen. Sick Kids in Toronto sent a breathing tube that went down his nose, to the back of his throat and kept his airway 'patent'. However, when I was expecting him to need a little oxygen at birth to kick-start his life, breathing tubes for the next four months of his life were entirely unexpected.

"He might not be able to nurse" is also doctor code for he couldn't even suck on a bottle. Don't get me wrong, the doctors (McMaster University Hospital in Hamilton, Ontario) were amazing. They just couldn't say for sure how little boy would do until after he was born. The small jaw they saw on ultrasound could have been anything from PRS to Trisomy 13--a fatal birth defect.
But back to feeding--he couldn't. IV for a few days, and then a nasal-gastric tube. Ever the hopeful new mom, I pumped milk and he was tube fed. At 6 weeks they tried a special bottle and while he sucked, he couldn't get nearly enough to keep himself alive. 10 months of an ng-tube and months of reflux later...we had them put in a g-tube (right through the wall of his stomach). Any mom dealing with anything like this LISTEN UP: Don't wait. The g-tube is way easy and would have prevented years of feeding issues I believe. DO IT NOW.

5 weeks in the NICU. 2 months total in hospital--and that was 4 months less than what Sick Kids said it would be. We came home to our tiny Stoney Creek house with baby in my arms...and every conceivable piece of equipment in daddy's arms. Feeding pump, suction pump, breast pump...

Can I just stop here and say how awesome Canada's medical system is? It's been a rare thing over the past 4 and a half years to have been in need for anything our son required. I am completely grateful. Grateful to the cardiac specialist who came to my tiny boy at 10 o'clock at night (all was well). Grateful to my mom who was there every day with me and her firstborn grandson. Grateful that through all this, I learned what it meant to rely on God's strength. I was not strong enough put tubes down my baby's nose, or suction out his airway or watch him struggle to breath. Only He who is in me could do that.

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