Friday, January 24, 2014

Being a Mom Can Be Heartbreaking

It seems as if last Friday our lives just stopped. On Friday we were notified that our little Jack's newborn screening came back abnormal for Cystic Fibrosis. We took him to a Children's Hospital on Tuesday and received the news that Jack is positive for Cystic Fibrosis. 

Cystic fibrosis is the most common, potentially lethal genetic disease, occurring in one in 3,000 births. The disease is a multi system condition that leads to progressive lung failure, pancreatic failure and gastrointestinal obstruction, or blockage. My perfect little angel only 2 weeks old now has to deal with this. We are left with little answers to the questions we have. Our specialist believes Jack's symptoms could be on the milder side but there are no answers to what "mild" could be. We hope that he shows minimal symptoms in the future.  He will visit the specialist every 2 weeks and be monitored closely for any symptoms. The one hopeful thing for me to focus on is he is gaining weight. There is just a lot of hope going on around here while dealing with the hand that we've been given. We hoped and dreamed for him. It was so difficult trying to conceive Jack. He makes me so happy. He is the most perfect angel. I love him so very much.  
I can't express the scary sadness that has taken over our home. We went from pure elation to the lowest of low. I've cried all day every day. I'm trying to be a new mom, take care of myself and grasp what this diagnosis means for our son. All I know is I'm barely holding everything together. I'm so stressed I can barely nurse him. I'm probably so dehydrated from crying all the time. I've been forcing  myself to eat because the thought of eating makes me sick. I'm really trying to be everything for him but I feel like I'm failing at everything. All I want is for my baby to grow up big, strong and healthy. I just wish I was coping better than I am. 
Does anyone have experience with Cystic Fibrosis? 
Any words of wisdom or encouragement would be greatly appreciated. 


Jen said...

Oh sweet friend!!!! I have 2 cousins that have cystic fibrosis and it is scary but your sweet boy can live a happy and long life! Sending so much love and support your way!

Olivia Driver said...
This comment has been removed by the author.
Olivia Driver said...

Ferris Joye has a little girl with cystic fibrosis - she blogs at I hope that helps a little! I am praying for your sweet boy! Psalm 91 has been bringing me a lot of comfort & encouragement lately if you want to go check it out! :)

Brooke said...

Many many prayers for you sweet girl! One of my very best friends has CF, is 24, has finished college and is completely functioning! There is tons of hope!

Blubtrflygrl said...

This was one of my sorority's philanthropies in college. I know that they have come a long long way in terms of treatment. I am so sorry that you are dealing with this but know that you have a ton of support out there. xoxo

Kristin said...

I am so sorry to read this, praying for your little guy

Laura said...

I am thinking and praying for you. I can only imagine the emotions that must be running through you right now. You are a strong, strong, woman (esp. after reading that birth story!) and I know you will be a great mom and will get through this. Jack will be fine, he is lucky to have such wonderful and caring parents.

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