Won't be getting rid of the O2 quite yet

So the eating still is back to what I would like it to be but she is at least eating a little bit. This morning I checked her pulse ox when eating – cause she was not eating well and hardly willing to put food in her mouth – and she was running in the low 90’s. I decided to give her a little O2 and immediately she calmed down and stayed in her chair for 10 more minutes and ate a bit more. It seems to me that she gets irritable and does not want to eat when her sats drop below 94. It’s almost impossible to get her sats when she is playing so I just took her off the O2 and continued our day. We went to see Aunt Lissa, which was nice to get out of the house for awhile. She seemed fine, ate a little bit of macaroni and cheese while we were out, then on the way home she refused to drink her milk. She cried herself to sleep in the car (this is still SO hard for me to see, but I can not give in every time and stop the care like I used to) and when I got home I checked her sats while sleeping and they were at her usual 91. After 30 minutes I heard her alarms going off and she dropped to 87 but came back up to 90 after a minute. The weirdest thing I’ve noticed is when she lays on her right side her sats are lower than when she is on her back and when she is on the right side they get even better. I’m no doctor but I’m curious why this is. I was beginning to second guess myself about having these tests done but to be honest I really want to know what is going on and finally put my mind to rest.

I did speak with the pediatric nurse at our primary clinic and she is going to bat for us with the insurance company to get us approved for on more synagis shot. Thank God! The fact that she is going to be having tests done in the hospital is enough reason to make her want Arianna to have these shots. She is supposed to call me next week and let me know what the insurance company decides. I’m so happy…not like I want my daughter to have shots but its for the best.

Well…let’s see…that’s pretty much it I think. I’ve been staying pretty busy with the support group stuff. I’m meeting with UMC’s NICU manager on Monday and will provide them with material about the group to have available for families in the NICU. I’m still working on the other wards. I remember how scary of an experience it was to have just given birth to my daughter who had several heart defects and not know what the future would hold. I want to make sure these families have the resources available to them when they need it the most. I really wish there was something in place for us when Arianna was born. I have built such wonderful relationships with all you heart moms in cyperspace and want to offer the same kind of support to the local heart families.