Tuesday, December 29, 2009

Some of the Things We Can Expect

Granted, we'll be adding a lot more to the list as we get closer, but this is what we've learned thus far.

When she's released from the hospital:
  • She'll require oxygen.
  • She may have a feeding tube. Babies who aren't fed via mouth for the 1st weeks of life lose their ability to suck. When she is out of the PICU and on the surgical recovery floor, I'm allowed to start spending to the night with her. At that point, the nurses will teach me how to teach her to feed. If she has trouble by the time she's ready to go home, they'll keep the feeding tube in.
  • We can't take her to public places, and visitors to the house will need to be kept to small numbers. Anyone with a cold, cough, or flu can't see her.
  • We will have to be crazy diligent with the hand washing -- Cate included (and is that gonna be a challenge!).
  • She'll require a number of medications.
  • She'll be slow in making the typical baby milestones, like rolling over, sitting up, eating solids, etc. They tell us it's because her heart won't be at "full function" ...so her development won't be at full function either.
  • She'll continue to have the bluish tone, even after her 1st surgery. Once she has the 2nd OHS between 4-6 months, the blue tone should go away and we'll finally have a nice, pink baby (until she's in need of her final OHS).
The long-term stuff:
  • Any cold or respiratory infection could easily turn serious. Heart kids have many trips to the ER, and/or hospital stays when they get sick.
  • She'll tire easier than other kids.
  • As her heart grows, and she outgrows the shunt, she'll start turning blue again. That's our biggest sign that she's need the next surgery.
  • We'll have to monitor her oxygen saturation for a long time to come, even after her surgeries are done.
  • Keeping weight on her will be a challenge. Heart babies tend to have a very difficult time maintaining weight (if only I could take that problem from her!).
  • She won't be allowed to play a number of competitive sports, but not all of them will be ruled out.
  • Trips to high elevations may be difficult for her; she may need additional oxygen.
  • She'll have to see a Cardiologist for the rest of her life.
  • The Fontan procedure will hopefully be her last OHS, but that's not definite. A few kids in our Support Group have needed other procedures later in life, like pacemakers.
  • Any major complications, or if problems develop with the left side of her heart, she may become a transplant candidate. Thank God, the Cardiologist told us that the odds of that happening are slim.

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