Yes, I feel like I am running on empty (you know you just sang that song in your head). I am still able to smile and enjoy conversation, but I am sooooo tired. Not physically tired, although my body is exhausted. I am emotionally tired. This is totally the post that I am sure I will regret posting later, but I have never felt so much pain in my life! Things took a downward spin on Thursday during the night. I was sleeping in a sleep room when I got a phone call from the nurse. They told me her line hadn't been working and then had to get access for her medications. She told me they had to shave her head. Suddenly I wasn't sleepy AT ALL. I felt like I had been kicked in the stomach- not that I have been kicked in the stomach before in my life, but this is what it feels like I'm sure. If I had been paged, I could have told them that there was no use trying to access her veins in her head. Needless to say, her line started working again, and the beautiful hair that had once adorned my daughters head was removed for nothing. The line had issues and was replaced the next day, which is a huge deal all in itself, but the hair being gone truly broke my heart. She never looked like a sick baby, and now she does. It is difficult because I find myself holding onto the little things and when they are yanked out from underneath me I don't recover well. That day I held her for hours on end and pretty much cried the entire day. Four days later, I still look at her and get teary. My emotional breakdown isn't entirely about the hair, but is a manifestation of how heart broken I am. I love this little peanut and she is going through so much. I feel like I have been holding up so well, and I just don't know how much more I can take.
They replaced her line and she is now intubated, which makes it difficult to hold her because she turns purple when we get her out of bed. Seeing her cry and not be able to breathe is so heart wrenching- as much as I have seen her go through this it is just as alarming as the first time she was intubated.
I am sorry to sound so down, and I do know we will get through this and Mia will be running around in no time. I just need it to happen soon. Ellie cries daily for her momma, and I can't heal her heart either. I always thought that we would get a heart and be home, and now I am forced to think about spending more time at home for my other kiddo's sake.
Please pray hard for my little Mia, that she will be stable until her heart arrives. And that the rest of her family will make it to her transplant.
As I rocked her today, a song kept popping into my head. The Michael McLean song "hold on" is a great song for someone in my situation. All I have to do is hold on... (listen to me give myself pep talks). I have to talk myself through a lot lately. The light will come- I know it will. We are just having a rough minute and could use some good news.
Mia did receive a blessing today which was wonderful! One thing is certain- she has a loving Heavenly Father who has blessed her so much. She has so many guardian angels, and a wonderful Savior who has helped us all through this. Hold on Mia!