Good Morning to you all out there is "Ava Update Land!" She really has been very sick (pukey) sick since the GI test yesterday. She was up all day yesterday until finally at 10pm she dozed off to sleep ville. She slept about 2 hours and then she woke coughing and throwing up. Her heart rate has been really high as well. In the 150's while she is sleeping and the 180's when awake. It feels miserable to be stomach sick. There is so little that helps the nausia go away. The have been weaning her Ativan and her Methodone. It was going well but I wonder if it is too much too soon. My theory is that her tummy hurts because of the GI test. (Well actually she started throwing up Sunday afternoon.) The test just compounded it 10 times! When she coughs it hurts pretty bad.
So another night with little to no sleep. I feel very tired today. I was doing our laundry in a few rooms down this morning and I thought to myself, "When is this going to end?" Our lives are so "up in the air" right now. Brian is going to have to return to work this next week. He has taken off all the work he can take off. He's burned all his vacation. The sad part is he just got it in September. I'm not sure what we will do when it comes time for her closure surgery. I try not to stress over money and bills. I know that God will work it all out. I have faith. He did it the first time with this "cdh monster" and he will do it again, I'm certain.
So the title of the post, well this is one of Ava's favorite songs. See the "cowgirl" rides the hardest and the longest. That is what I feel she is doing. She is such a strong and tough little girl. I know she is tired. Yesterday we had our daughter back. Today she is drawn back once again. I had them give her pain meds this morning. I know when she is in pain. Her tummy hurts so bad to cough but she has to cough to clear her lungs. She is getting to be quite the expert on coughing now. We are really proud of her. She makes us know what life truly feels like. We have been through the bad times, the good times, and the amazing times. We miss Lexis and Emeline so badly. I crave our normal lives. I know we will find a new normal and I can't wait until the day I say, "Everyone is healthy and here we sit, content."
The good news is that I talked with the docs here about giving her the syniges injections. This helps prevents or lessen the bomb is she gets RSV. We don't need that right now or anytime this winter. Normally they stop giving it at 2 years of age. I feel it is a necessity and they do too. Our insurance will cover it if it is "medically needed." I just don't want to be back in a few months with the RSV virus. I explained to them that Ava is very sheltered form the public and germs. Heavens know how many disinfectant wipes I've used since she was born. (I've gone through 3 big tubs of them since we got here!)
Now the plan, if you can call it that, is for the team to get together and figure out what test would work best for Miss Ava. Her body is so fragile that she really can't tolerate very much at all. It frustrates and saddens me that I can't take this pain and discomfort from her.
She is finally sleeping right now as I type. (So is Daddy) He stays up with her all night long so I can rest. I love my husband so much. I don't know what I will do when he goes back to work. I need him here and so does Ava. I guess God will have to lead us down that path when it comes. I do know that I picked the right guy. He is such a wonderful man and a loving and caring Father.
"God help us today to be able to sift through the bad and find the good. I thank you today for giving our beautiful daughter. She has filled our lives with so much Joy! She has made us stop and ponder what this great world is all about. Be with all the parents, babies, families, doctors and nurses, that are going through trials of their own. God you know every situation there is out there and you know that even though I can't help everyone I sure can love and pray for them. In the midst of this horrible storm we do see your love and strength. We know you are here and that things will get better. Thank you for all the wonderful strangers we have met along this journey. I am humbled by their actions and kind words. We love our family and friends and know that this is very hard for them to watch as well. Please continue to watch over Ava and give Brian and I the strength we need to face another day. We hold onto your word and we treasure all three of our precious daughter. We love and thank you for all your goodness and mercy. In Jesus name, Amen."
I know that one day life will return but until then we take this journey, "One Day at a Time."