When I walked in to the TCN today, one of Claire's favorite nurses had her sitting up in her boppy pillow like a big girl with her stuffed dog and bear beside her, listening to her Baby Einstein CD, and looking at her mobile. She was totally cute! She has her cousin Anna's mobile and her bestie Ava's outfit on today. She is one loved little girl!
The doctors decided to give Claire a daily dose of lasix and they started her on the EleCare formula today. She scarfed down her first feed for me. I looked at the clock when we started and it was 11:04. When she finished eating, it was 11:06. The girl loves to eat! That's one thing she got from her momma!
Then came the "H" word. I thought I would be so excited when the doctors started talking about sending Claire home. But today when they mentioned it, I got so nervous and had the same thought that I had during delivery - why did I think I could do this?!?!? Oh my gosh - we are going to eventually have to take her home. Home with no nurse watching her 24 hours a day. Home with no monitors hooked up to her little body so we know exactly what her heart is doing, how she is breathing, her blood pressure, and her body temperature. Home where there is no one to call over to her bed to ask "does this look right?" Home where we have to be responsible for knowing what to do it she has a tet spell due to her tetralogy. Home where we have no idea what the liver cyst is doing day to day.
But at the same time.....Home where we can be a family together. Home where Claire can see her room. Home where we can hold her for the first time without any wires or tubes. Home where we can hold Claire for the first time without having to scrub in for 1 minute and wear a beautiful blue hospital robe. Home where so many wonderful memories are waiting to be made. Home - the place we have wanted to have Claire all to ourselves. Home - a place that will never be the same and will be such a happier place with our sweet baby girl.
So obviously we know that in reality, Claire will probably not be home in a week like they said today. We don't want to get too excited because we know things can change at any time. We are having a family conference with some of her doctors tomorrow so we hope to get some good answers to Claire's short and long term plans. Unfortunately, I don't think any of the surgeons can be there to talk about their plan for her liver.
We were also told to go ahead and contact Claire's pediatrician. And to also contact local rescue squads to let them know about Claire's conditions and what they need to be aware of and be prepared for with her heart and liver. So be prepared to be educated!! :)
Tonight Claire pulled out her IV so she had to get a new one. She was very alert and doing good. Her weight was down a little due to the lasix - 5 lbs 12.5 oz. Her girth is still around 34 cm. Her nurse tonight (another favorite) said Claire "was disappointed with her meal plan" meaning she is not getting enough food! She has not had any stools yet since she started eating again, so we are not sure if there will be blood showing up or not. We are praying there is no more blood in her stool.
So we hope tomorrow's meeting is productive! Thanks again to everyone for all that you are doing for our family! Don't forget the BLAST dinner at Centenary UMC Wednesday night - home made lasagna! Yum! Thank you to the preschool teachers for thinking so much of Claire. Every one's kindness brings tears to my eyes every time we think of it.
Busy day ahead of us tomorrow, so goodnight!
The Scott Family