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Monday, June 7, 2010

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. :)


Amanda Kern on June 7, 2010 at 3:25 PM said...

You're definitely not alone Nicole...give Wrenn big hugs for all of us. Hang in there!!!

pamabbs on June 7, 2010 at 3:35 PM said...

You are not alone but I do understand how you feel. It's good to know people who can totally get what you are going through. You are such a blessing and inspiration Nikki! I love you tons and I keep you all in my prayers. Thanks for the update!

Lisa Holmes on June 7, 2010 at 3:54 PM said...

Nikki, we're all still here sending lots of positive energy out to you, Jason, Tanner, and Wrenn!!

Janet Stuart said...

Thank you for the update, you are in everyone's thoughts and prayers!

Anonymous said...

I am Megan Eisel-Bowman's Aunt Susie and I live in Frostburg, MD. I have placed Wrenn on the Prayer List at my Church. There are many prayers happening lifting her and your family up daily.
I am also currently praying for the son of a friend here in town who through NTAF received a new liver on Wednesday of this week in Pittsburgh. Patrick lives in Oregon, but came back to this area for the transplant because his donor ended up being a teacher at our local high school. Both are doing well thus far. The donor is up and walking and Patrick is talking and joking as of this morning.
I have a strong Christian belief in the power of prayer. God is definitely wrapping his arms of love our your little Wrenn. Through Him and through prayer, I hope to read soon that things have started go better for her.
Keeping her in God's arms and in my prayers.
Susan Eisel
Frostburg, MD

Anonymous said...

Second time I am trying to send this!
I think about you guys all the time and hope and pray for good news anyday! You have a lot of positive thoughts to convey and you seem to be in a wonderful place which has become a second home! She is hanging in there so good! I am so very happy you have a mom to talk to that has been through this! Is there anything I could send you? All my love, Sandy

Just_Jennie on June 17, 2010 at 11:34 PM said...

Niki, thank you for your updates. You have a beautiful family! My prayers are always with all of you!

Love you,


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