Tuesday, June 1, 2010

Before the Morning

"Let us not become weary in doing good." St. Paul to the Galations

Most of you have been keeping up with my short "what's on your mind" facebook status updates, but I wanted to share more about Cooper's health right now.

This past Tuesday I took Cooper to the ER for trouble breathing, lack of appetite, and being overly lethargic. It turned out my gut instict that something was wrong was. His blood oxygen level was low and he needed oxygen to help him breath through whatever virus his small, small body was fighting. 2 days later things were improving, he was eating well and back to nearly "normal." Over the weekend his health made a turn for the worse. He again stopped eating and slept almost all day. When he was awake he would have such terrible coughing spells that he would need chest PT for them to stop. On Saturday into Sunday he started vomitting with each feeding making us concerned that he wasn't gaining weight, but losing weight.

Sunday night was the breaking point. I simply was exhausted from watching my newborn struggle through feedings and then when he finally did eat, throw most of it back up almost immediatley. Without thinking twice we called the CF doctor on call and took him back to the ER to be admitted as inpatient. This time, his chest x-ray showed fluid in his lungs and a blood draw confirmed the diagnosis of pnemonia. The virus Cooper had been fighting took a turn for the worse.

Today, Cooper began IV antibiotics, nebulizer treatments for his cough and chest therapy. At this time, the doctors expect him to be admitted for 7-10 days. Maybe more. Our family priest who has baptized all three of our other children was able to come and baptize Cooper today in the hospital. His "real" baptism wasn't scheduled until June 12th but we know he can use all the more grace now to fight through this!

This is not the norm for an infant with CF to be hospitalized. Neither Cayden or Trinity were hospitaled as infants so it worries us to think that he is starting out in this world already with lung infection. And of course there is no way of knowing if Cooper will have a harder time with CF or not. There is just no way to predict the future. I am confident, however, that because Cooper has the same genes that his older siblings have that like them, he will do remarkably well and have more digesitve problems. As a mom, my heart is breaking. I just want to be able to enjoy having a new baby and even that seems impossible with so many disruptions right now. As a person who tries to do everything perfect, I am judemental. What could I have done to stop this? I feel like if I had only taken him in sooner or done more treatments he would be home with us right now. Pnemonia is a scary thing and I am so fearful for his life. But we continue to pray for God's healing. And we know that we have already been through a long hosptial stay but this feels like too much.

I know I share a lot of songs, but being a musician they really speak to my heart and give me sooo much encouragement to hold onto my faith when life is just too much. Somewhere in all this pain and suffering there is much greater joy coming. I will share more updates on Cooper as they come. We are so grateful for your prayers!

If you like the song, you'll love to hear the story behind it. We have to trust that whatever God is doing in our life right now is for a greater good. And it is simply just that. We have no other choice.

1 comment:

  1. Hi Tiffany,

    My name is Josh and I was sent to your blog by a friend of mine who knows my passion for CF kids. I am 31 with CF and write a blog called "Welcome to Joshland" that has a little more grown up content about my life with CF. My YouTube channel on the other hand, features mostly kid focused videos starring my puppet Moganko. He teaches children about cystic fibrosis through humor, love, and honesty. I hope you'll take a moment to watch them and...if you like them... perhaps share Moganko with your children.

    Since you are a musician and a fan of music I thought I share this as well. I was also a part of the Breathe Song Event which is a tribute to Matt Scales - a CF musician who passed away in 2007. Please take a moment to watch the documentary and listen to the moving song created by this young man.


    Peaceful things and lots of love to your family..especially those little peanuts. :-)