My Visit with Wrenn, by Lisa M - June 21, 2010

It's been over a month since I've paid Wrenn a visit at Winnie Palmer. I was sick for a while, then my kids were sick, then I went out of town on a business trip, and then I had surgery. But finally, I was able to be at the hospital this afternoon while Nicole was there with Wrenn. We had a great time!



It's rare, I'm told, that Mom lets anyone hold Miss Wrenn. Perhaps I was lucky because Nicole had to go use the ladies room and then pump some breast milk for Wrenn, but whatever the reason, I was fortunate enough to score an hour of Wrenn-time. I was fascinated and amazed by this little girl, and fell totally and hopelessly in love with her once again.

My first observation was that she had grown so much. The last time I saw her, Wrenn was about 5.5 pounds and quite scrawny, to be honest. Her little legs were very thin and you could see every rib on her chest. I wouldn't say she is now a chubby baby, but at just 8 pounds she has a very healthy look about her. I next noticed that although she still breathes quickly much of the time, her breath rate has slowed down quite a lot since last we met. There were even times while I was holding her that she seemed about to doze and at those times, her breathing was close to what you'd expect from a baby without a surfactant deficiency. It was encouraging to see her doing so well. She was thrilled to lay in my lap. I rubbed her head and her legs, and she loved the touch. She especially seemed to enjoy watching her mommy's every move as she went about her motherly ministrations - folding Wrenn's clean laundry, brought from home, and packing up her dirty clothes.

I even got to change a dirty diaper, which was neat. I've changed plenty of little girl diapers, but this was the first time I had to do so around three monitor wires, an oxygen tube, and a feeding tube.

Let us make no mistakes. Wrenn is a perfectly healthy child in all ways but one very important way. She cannot breathe without being hooked up to oxygen. Although there are days when her oxygen percentage can be lowered to 40% or so, she was above 70% during my entire visit, and this was a fairly good day. Wrenn will not be going home any time soon, and she will most likely never go home without an oxygen machine.

As we sat and talked, Nicole told me how difficult it is to remain upbeat all day, every day. I don't think anyone expects her to do so, but she feels that this is the best thing for Wrenn. She does not want to share with you in her posts the difficulty she experiences every day, going into and out of the hospital, watching moms being wheeled out holding their little pink and blue bundles of joy - none of them hooked up to oxygen machines.

I had not given this a thought as I breezed into the hospital, in such a rush to get up to NICU and maximize my time with Wrenn and Nicole. But you'd best believe I could think of nothing else on my way out. As I walked by a new mommy being wheeled out with her pink bundle, tears welled up in my eyes. So many people have been helping the Parris family in so very many ways, but this family is far from being done with their crisis and they still need so much help.

What can you do to help? Here are some ways you can donate to Wrenn's uncovered medical expenses:

1. Visit NTA Fund and search for Wrenn Parris. You can make a single donation or set up a monthly payment plan.

2. Participate in Wrenn's Golf Tournament at North Shore Golf Club on July 17. Details can also be found on Wrenn's NTAFund page (see #1). There are over a dozen teams already signed up to play, but we have room for 30 teams and there are still $100 hole sponsorships remaining. If you can't play but you live in Orlando, come out and help! Shotgun start at 7am and I will be there.

3. Check out the amazing original artwork of Marshall English. A portion of each sale of North Shore art work goes directly to the Parris family.

Also, if you are a friend of the family, contact Nicole and set up a visit. Nicole spends most of every day at the hospital and loves some company. Wrenn also loves to listen to and see new people. She is incredibly alert and enjoys interaction.

At the very least, please keep the positive thoughts and prayers headed Wrenn's way. Thank you to everyone who is helping - for me, you've renewed my faith in the goodness of people.

"A baby is God's opinion that life should go on." - Carl Sandburg

(A not-so-private message from me to Nicole - you are truly an amazing mother to both of your children, and an inspiration to us all. Never forget that! I love you!)

Golf Course Landscape Artist Marshall English Helps Wrenn

Golf course landscape artist, Marshall English, specializes in original oil paintings of signature and famous golf holes. Please visit his website. A portion of all proceeds from the sale of the original or any prints of North Shore Golf club will go to benefit the family of Wrenn Parris. These are gorgeous works of art and North Shore is a golf course near and dear to the Parris family. They live in the North Shore neighborhood in Orlando, FL and before Wrenn, Jason played the course every weekend with his golf group. In fact, one of the members of the group is organizing the July 17 golf tournament - information about that tournament can be found here.

Please take a look at Marshall English's work and consider adding a print or painting like this beautiful North Shore landscape to your home. Thank you!

A Message from the Parris Family

Hi Everyone,

Just wanted to attach a few pictures from my visit with Wrenn today. 3 days ago they got rid of the fortified mix they were putting in my breast milk. She was frequently spitting up but still gaining weight pretty fast. Now she is losing a bit but is enjoying her feeds MUCH better and keeping them down. I'm not sure what they will do but I can tell you that the fortifier was making her throw up at every meal.



St. Louis checked in last Friday to see her status but gave us the impression that despite weight gain at this point she is just not in NEED of a lung today. She would continue to be bumped from the list since it goes to the person who is MOST sick.

Once she reaches 8 pounds the doctors in St. Louis will take another look at her and decide to either transport her (which they really don't want to risk doing for fear of not getting her off the vent) or let her stay at Winnie Palmer allowing her to grow stronger.




Over the last three weeks she did catch Tanner's cold (the Rhino virus). She had a very bad wet cough but did very well. She never needed medicine (most healthy newborns need Albuterol or meds for that condition) nor did she need to be vented, which often happens to babies with respiratory issues. (Yes, she is very strong and a fighter).

I really think the doctors have underestimated her. I really feel she is going to surprise us all...

Keep praying!
Hugs

Nicole and Jason

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. :)