2 Weeks Old

Today was Ivy's 2 week birthday. She is awake a lot more now, and is doing really well. She is down to just 2 medications and 2 flushes, and got her last drainage tube taken out today. She was also extubated today (breathing tube removed), and is doing really well breathing on her own. They put a little oxygen tube in her nose, but it is basically just blowing air into her nose to help her a little bit, but that should be removed tomorrow. She still has the RA lines in her heart, so we can't hold her until those are removed but it is definately getting close. They also told us that her surgery on her intestines should be next week. We happened to be there while they changed her linens, and they also wanted to give her a bath, so they asked if I wanted to help, and I was delighted. That was fun, it made me feel like I really am her mom. It was another good day for all of us.

We also realized today that we never really said exactly what conditions Ivy has. We have found when we are vague about what she has (i.e. heterotaxy) everyone says, "I know someone who has that and they lived to be 80 years old!" It gets a little irritating. Ivy actually has five different defects and the odds of anyone knowing someone else with the same exact five defects is very rare, especially since some aren't even related to each other. Okay, so here are her conditions, the first 2 are heart related, although unrelated to each other, and the last three have to do with the heterotaxy, which is unrelated to both heart defects.
1)partial hypoplastic left heart syndrome (this is when the left pumping chamber, the one that pumps blood to the entire body, is under-developed.)
2)Coartation of the aortic arch (which is a significant narrowing in the aorta, causing blood flow blockage)
3)asplenia (no spleen)
4)liver is on the wrong side
5)malrotation of the intestines

So she has already had open heart surgery to re-route the way blood is pumped by her heart, but she will need two more surgeries to complete the reconstruction. One when she is about 6 months and one between 2 and 3 years old. At the same time as the first surgery they also fixed the coartation of the aortic arch, and that shouldn't require any future procedures. Before she gets to come home she will have to have one more surgery to fix the malrotation of the intestines. The liver being on the wrong side doesn't really pose a problem and the asplenia means she will be more susceptible to illness and infection and will have to be on some medication for the rest of her life.

So now you know, I hope you feel more educated. Have a good day!