A Message from Nicole Parris

I’m finally at a place where I can talk (write)… a little. When the doctors mentioned the disease they thought Wrenn might have four weeks ago, I thought… They must be wrong. They had said she’d be coming home in just five days once the pneumonia cleared up. Preparing for the worst, my husband started researching on the Internet. As he gathered more information on the surfactant protein deficiency I felt our world turn dark — very fast.

I remember in the third week telling my mom that I felt alone. It didn’t matter how many people were standing next to me in the room, I couldn’t control what was going on and that was new for me. I had always been able to make everything better or I at least knew that things would never be bad for very long. My friends will tell you that in my eyes the glass is always half full. I can usually find something good in most situations. This scenario has been hard to swallow.

After the shocking news, I prayed for a guardian angel to guide me through the unknown and he sent Nicole Neufeld. (Her daughter had received her double lung transplant two years ago after being diagnosed with the ABCA3 surfactant deficiency.) It was then that I told my mom that I no longer felt alone. I had someone else to talk to who knew exactly how I felt and what I was going through. God sent me a wonderful new friend who would help me through this tragic mess.

I also ask God for healing and that he shows us other options for Wrenn’s condition. I am told that sometimes the answer is YES, sometimes it’s NO, and sometimes it’s NOT NOW. I feel I am capable of being patient.

In the last two weeks I prayed for more guardian angels and that’s when God sent all of you. Your emails, thoughts, prayers… Jason and I feel the warmth and sincerity from each person following our journey. When I have a dark moment, I read your comments again and again and I remember that I am not all alone.

Many of you have asked how we are doing. For myself, I take life one hour at a time. I am lucky because I have a healthy two and a half year old son, Tanner. He’s my rock and makes me laugh and smile all the time. I also have a great team of nurses taking care of Wrenn. Some days I cry and the nurses comfort me with hugs and promise that they will help us through this. Many have shared their own struggles with sick family members and how they have coped. I don’t know how they do it but I always manage to leave the hospital uplifted, remaining positive and smile even though nothing has changed. It’s wonderful knowing that Wrenn is loved by soooo many people.

Again, the support of each person on this site just amazes me. I truly want to embrace each and every one of you. Wrenn will grow up and learn about the wonderful people who came into her life to show how much they cared. I am sure that both of my children will be inspired to help others.

I promise to update everyone on her condition as we progress.

As of today, Wrenn is 7 pounds 3 ounces. It’s hard for her to gain weight because she works so hard to breath on her own and burns twice as many calories. She is still on 8 liters of oxygen; the doctors do not expect this number to change. She loves her binkie, is very aware of her surroundings, and listens to her CDs. She likes her bottom patted when falling asleep and usually sleeps through the night. She is happiest when being held but seems most relaxed after her bath. Each night before bed we call the NICU so big brother Tanner can say, nite, nite Wrenn. :)