Saturday, September 12, 2009

The Adventures of NICU Nyx, The Finale

First of all, huge thanks to all the family, friends, and even strangers who have called/texted/emailed/commented/smoke signaled their best wishes and even offers of help when it's time for Nyx to have her surgery. You have no idea how amazing it feels to have such a wonderful support system available to us and the knowledge we won't have to go bankrupt on hotel fees while she's at TCH.

So Nyx is home. She was seen on Wednesday morning by a pediatric cardiologist out of Austin who moved around his schedule to drop by the NICU. Apparently she's the first baby in the St. Jo's NICU he's ever gone out of his way to examine. Yeah. Our kiddo is super special. You wouldn't believe how popular she was among the TAMU medical and nursing students, Blinn Nursing and EMT students, and even flight medics/nurses. Dave and I allowed them to listen to her heart (she has a hellaciously loud murmur) when she wasn't fussy. You could tell it really helped them quite a bit to see/hear this condition, especially the flight nurse.

Anywho. Back to Dr. Schaeffer. Nyx has what he describes as "garden variety TOF." She's not the very worst nor best case scenario. She's sort of pink Tet most of the time. The biggest issue Dr. Schaeffer discussed with us is Nyx's size. She's small. Like tiny for nearly 40 weeks. She's 18 inches long and just reached 6.5 pounds on Friday. It's the double whammy of that two vessel cord and the wonky heart.

Her size rules out most of the heart surgeons except for two, one in Houston at TCH and another in Dallas. We've opted for the Houston surgeon because he's close so we can control costs and because he does a lot of these surgeries. Dr. Raju (one of our neos) describes these repairs as the bread and butter of Dr. Frasier's team so that's comforting in an odd way.

The plan for right now is to keep Nyx at home as long as she's stable to grow. She'll continue to trend down (deteriorate) over the next few weeks or months until our hand is forced for the surgery. Fingers crossed she'll reach ten or twelve pounds before she her oxygen saturation levels drop to the high sixties. If she's still too tiny for the open heart surgery, we can try a temporary shunt until she's bigger. At this point, it all depends on the size of her pulmonary arteries. We won't know about those until we meet with another pediatric cardiologist on Wednesday.

Yeah. We're seeing a lot of doctors and planning on lots of tests. I'm trying not to think about costs but I figure we have a million dollar baby on our hands. Christ only knows how we're going to pay for all this but we'll figure out something. We always do.

Oh, and if you ever need heart medication for an infant, be prepared to lose your effing mind before you find a pharmacy able and/or willing to compound it for you. For fuck's sake, I thought I was going to blow a pupil Wednesday afternoon trying to get Nyx's propranolol prescription filled so she could be discharged the following morning. We finally, FINALLY, found a Walgreens with the medication in stock and the willingness to compound it for us. I almost wept with relief. Now I have to be hyper vigilant about keeping the 'scrip filled.

1 comment:

kacie said...

Glad to hear that your lil' Nyx is home. Now you can try to merge into what is suppose to be "normal"...well, your new "normal". Just try to enjoy her as much as you can and not the heart defect. She doesn't know she has it. She just wants you guys:). Isn't that awesome. Didn't know if you knew of the Angel care monitor at babies r us. It has an alarm that goes off if it doesn't detect a heart beat or movement in 20 seconds. I loved it...gave me some peace of mind at night cause of the whole oxygen thing. It is funny and ironic your doctor's name is Dr. schaffer. My little man's name is Schafer that has Tet. Well hang in there. And seriously...if you need to vent to someone that completely gets it or have any questions about stuff...don't hesitate to email.