C had two appointments with cardiology today.
Yeah, it was just about as fun as it sounds.
Since C developed the arrhythmia we get to see not only the regular cardiologist for all of the structural issues but also the EP (electrical) cardiologist. We were a little confused at first with all this as I was under the distinct impression after being discharged from the hospital that we would need to see both. However, when Kevin called to schedule the appointments he got completely run around and kept getting the answer that we only needed to see the EP cardiologist. Very frustrating. Finally got it all worked out but took some finagling so we were not too sure what to expect today.
We ended up being there for 4 hours.
At least C got the full treatment. She had her ekg and echo and got to see both cardiologists. Apparently she is doing pretty good. We are not scheduled to go back to see either cardiologist for one whole month. Wow. Kevin and I were a little shocked but at this point we totally understand that no change and no news is very, very good. We are still very closely watching C as her oxygen saturation at night when she is sleeping is still really low. We asked both cardiologists and neither seemed very concerned at this time. I know that should she still be doing this in a month then we have a problem and that will mean C needs another heart cath. Right now I am praying that she will behave and do as is expected (for once!) and have this issue with her lower oxygen saturation's resolve itself as her lungs and body get used to the new physiology with her heart only pumping mostly red blood with just a bit of blue blood. She is currently connected to a holter monitor (just 24 hours). I will mail the holter back tomorrow and we will get the results in about 2 weeks. Unless of course there is a problem. If there is a problem then we will get a call. I got the impression from the EP cardiologist that he does not expect there to be a problem. I will be praying hard that her arrhythmia medications are still working for her.
Other than our exciting day of cardiology C is doing pretty well at home. Been a little harder for her to adjust this time as she was in the hospital so long this time. She really was not wanting to return to her normal schedule of getting to bed at 8pm and really wanted to stay up to 10pm or later. I finally had to get a little mean with her and insist that she get to bed earlier :). I just took away her morning nap and now she only gets one nap in the afternoon. So far has worked pretty good.
C is loving being home. She is so happy to be here and see her brothers every day. Every time she sees them she just lights up and gets all excited. They can make her laugh like no one else. She so loves when they play with her. She is also really loving being back in her co-sleeper right next to mama and daddy so we can keep picking up her paci and putting it back in her mouth every time she loses it and fusses. I know, she really needs to be in her crib in her own room but between her feeding pump and her monitor going off like crazy all night because of her lower sats I just like having her close. Besides, I do not want to be the one running across the house every time the silly thing alarms. We already do not get enough sleep between the alarming and having to be up until midnight to give her one of her meds so I really do not want to add to it by running across the house all night long.
So, since everyone has asked. All we do now is wait. We all live our lives as best we can doing everything we can and we wait... and as her one cardiologist said today...we all watch her get fat! (which by the way is already happening thanks to her g tube...she is a whopping 14 pounds, 10 ounces and gaining everyday!)
Thank you all so much for the prayers and all of the help. So many of you have tremendously helped us and I feel so bad that we have not had the time to thank everyone personally. Even though we are very slow on that, please know that we truly do appreciate all that every single one of you has done for our whole family.