I had hopes that life with Audrina at home would settle down fast, and we would all get back to feeling like ourselves again. But I'm sure you can gather from my lack of updates, that things have been more stressful than we imagined.
Audrina came home and began to have episodes where she would turn blue, and it got increasingly more frequent and harder and harder to get her to come back out of it. Some of them were lasting close to a minute and I was questioning whether or not I would have to call 911. We knew she had been having minor apnea's with feeding, but this was getting out of hand fast.
Our pediatrician ordered a pnuemogram study for 12 hours to better assess how to treat these episodes during feedings. Two hours later I got a call that caught me off guard.....
They reported that Audrina had 135+ episodes in 12 hours. :( They wanted her to start on a continuous flow of oxygen immediately. After some phone calls to coordinate, they showed up and start unloading all these oxygen tanks into our living room (where Addison is busy dumping out the contents of my diaper bag onto the floor) and we quickly realized how overwhelming this was going to be.
Both of us just assumed that since she hadn't needed oxygen when leaving the NICU, that they would just hook it up to her and the episodes would stop. Flash forward to last night, continuous oxygen running, and her alarms are STILL going off periodically, and she had one episode where she just got so blue and lethargic she looked dead. Scared us really bad because the monitor never picked that one up. So we called the infant monitor at the hospital and they told us we should come to the ER.
Saw a fabulous doctor we have met before and he said that she would need to be watched closely and admitted. After admission, nurse heard a heart murmur and they have ordered an echocardiogram. I am just praying there is nothing wrong with her heart and that its just preemie stuff going on. I feel too calm... and not the good calm. Its like everything with Addison has messed me up to the point where my baby is laying there blue in my arms and i'm just thinking "Oh, this will pass.... no big deal."
Anyway, sorry if this is rambling, I am so exhausted and we came in about midnight so no sleep last night at all. I will post an update once we get some idea what is going on. Thanks for praying for our little one.