Tuesday, September 7, 2010

Baby and Cardiology Update

Once again, I meant to post much sooner. Life has been CRAZY! My time seems to barely allow me to do the things I HAVE to do, no time for extras. Blogging is an extra. Between Kaidence and myself we have doctor appointments 3-4 days a week. To tell you the truth, I have had to take some time to deal with my emotions and fears with regards to Kaidence's future. In fact, it took me crying myself to sleep a couple of nights. However, all I can do is my best to care for her, love her and teach her life's lessons.....the rest is out of my hands. What is meant to be, will be. Sometimes that is so hard to deal with and at other times it comes as such a relief.

A quick pregnancy update. I have Non Stress Test 2 times a week for the baby. Fluids have been up and down. However, more time spent being down. Last week I had my last progesterone shot, so we will see what my contractions do. I will be 35 weeks and have made it past the time I delivered McCaden. Hopefully, I can make it at least 2 more weeks. The kids are getting excited, especially Kaidence. So that is the baby update......now for the Miss Kaidence update!

As far as her heart goes, things are still the same. I am a little frustrated that her heart is not recovering quicker. It really hasn't made any improvement since coming home, but it hasn't gotten worse either. I am worried that her heart rate is still high, the vessels in her neck come and go. Her heart is still big and therefore her valves are still leaking. However, her heart is functioning (squeezing) well and so that is a great BLESSING. Cardiology wants to keep Kaidence on her steroids and heavy drug doses longer than originally planned, because her pressures in her heart are so high due to the rejection. It looks like she may be on these for the next couple of months. Longer than originally thought. They are also starting her IVIG treatments next week in hopes that things will start to move along with regards to recovery and treating the antibodies and rejection mor aggressively. So because of these treatments Kaidence is no longer able to get her flu vaccine for this year (scary) and she is very immunosuppressed. We will just have to stay home, keep germs away and hope for the best. Please be understanding if I get a little more freakish about sickies as flu season approaches. Just remember that a virus is what started it all and is the reason she needed a new heart to begin with. So yes, it scares me.

Kaidence is flying high on her steroids. I know most others have the opposite problem with grumpy kiddos on the roids. Kaidence seems to be very hyper on them. As usual they make her hungry and I think she has gained about 3 pounds since being home. Her face is very round and she has a cute little double chin. She seems to think she is the luckiest girl in the world. She is so upbeat and full of herself. She talks non stop and has the funniest little giggle. She misses going to primary on Sundays. I think that is when she is reminded most that her heart needs to get better. She understands the whole germ thing. She has spent time outside painting with her brothers (she loves art stuff right now). She has also spent time in her playhouse. I feel bad because the neighbor kids usually play in it with her, but for now its just for her and her brothers. She also loves to go out and ride her bike. This girl just goes and goes. When I nap, she lays in bed next to me and watches movies. She will spontaneously grab my hand and kiss it or lean forward and kiss me on the cheek while I sleep. She doesn't know that I know she is doing it, she thinks I am still sleeping. Its those moments that I just savor the sweet tender spirit and personality of this little girl.

I am grateful that she IS so happy, crazy and full of life. She is such a sweetheart.

Our hope is that Kaidence can continue to stay healthy and that her heart may start to heal and recover if that is what is meant for Kaidence.