Ups and Downs

It is 4:55am and Bethany and I are sleepy yet up talking about Emma Kate. And we are only a few feet away from her because we are in the Step Down Unit! We left the CICU last night around 11:15 and have gotten around 3 hours of sleep since. But this is fine with us because Emma Kate knows we are here.

Yesterday was definitely an up and down kind of day. It started with good news that Emma Kate was going to have her heart lines taken out. This would leave only iv's and her chest tubes in. The nurses had to give her morphine before this was done for obvious reasons but also gave her Tylenol with codeine shortly after. This left EK pretty lethargic for the majority of the afternoon. Because of this, she wouldn't eat much. This caused the nurse to use the most dreaded term in our household. One that when mentioned, causes Bethany to cringe. The NG Tube.

The nurse mentioned those letters and we immediately tried everything we could to get Emma Kate to eat by mouth. Unfortunately, because she was so out of it, nothing would work. I will give the nurses and the nurse practitioner credit though, they kept the tube out for as long as they could to keep us happy. But Emma Kate has to have food. So the awful thing is in. This is just temporary and it does serve a good purpose. We just can't stand the thought of it.

Emma Kate's chest tubes are still in as she is still draining her lymph fluids. It has tapered off a good bit, but there is still enough to make the tubes necessary. We have been told by several people that this is a common thing with heart babies which is comforting. Not any easier, but comforting none the less.

Emma Kate's sats have been consistently in the 75-85 range which is great. We have been told by several nurses that she is one of the "pinkest" glenn babies they have seen. It is weird to see her when she gets upset though. She holds her breath and turns almost purple in the face. This will take a while to get used to. Pink is definitely a better color for her.

As for her attitude, Emma Kate is showing signs of her normal happy self. She is, quite understandably, in pain from the surgery and the headaches that come with the increase in blood flow to her head, but she is still so calm. She fusses when the nurses tug at various things but that is it. She is smiling again, which is a blessing to see, and she played with some links for about 15 minutes that made us feel like we were at home. And she is smiling at us. There is no greater joy that seeing this after seeing her so out of it for 2 days.

She also had the iv removed from her left hand giving her fingers to suck on. Emma Kate LOVES her fingers and it has been awful watching her bring both boarded hands to her mouth in frustration. She also enjoyed using the board on her right hand (the boards are used to keep the wrists straight so the iv stays in) to swat the links we were playing with. She is too cute!

As for me and Bethany, we are doing alright. These days come with so many stresses that sleep becomes just sleep, not rest. We try not to think about going home because that just makes us want it more. We miss our sweet Anna Brooke and can't wait to hold both our girls while lying in our own bed. We are so blessed with our family!

Thank you for the encouraging comments and emails/facebook posts. Sorry that we are bad about getting back to you. You all have made this journey a little more bearable. And I promised pictures and they will come. But it is now 5:40am and I am exhausted.