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. :)

Priceless moments with Wrenn & Tanner

Today I had the opportunity to visit Wrenn again. Last time I visited it was late in the day and there was very little light so once I heard their trip to St. Louis was delayed we schedule a time so I could come visit again. When I first arrived Wrenn was resting with Nicole after getting her ready for her photos.



Nicole mentioned a nurse had made a beautiful flower headband for her so we took a few photos of her with her flower. Something tells me that as she grows older we'll see many more photos with her precious little flower hair accessories.



It was so cute to see Wrenn all dressed for photos today. I think it was an uplifting moment for Nicole to have with her little girl. Nicole spends several hours a day in the hospital with Wrenn but I imagine it's not every day that she gets to dress her up like she did today.



A few minutes later she woke right up. I can tell she's grown in less than two weeks since I last saw her.









I knew the nurses at Winnie Palmer were great. As challenging as things are we can all be reassured that Wrenn is getting the best care. Her nurse, Colin, was amazing today. After seeing her flower he joked about wearing one with Wrenn for a photo. Funny thing is, he wasn't joking - he was very proud to take photos with Wrenn and her awesome flower hair accessories.







While I was there I noticed they had the "congratulations" sign that is typically posted just after birth in the hospital. As I saw it posted to Wrenn's crib in the NICU I realized she's been in the NICU for 47 days.



I know the crib she's in at the NICU isn't quite the same as the one she has waiting for her at home but it's the only home she's known for the last 6 1/2 weeks. I admired seeing Nicole comfort Wrenn through the bars of the crib.



On the outside of Wrenn's crib I found her big brother, Tanner's awesome artwork.



I admired Wrenn just a little longer as we awaited Tanner to return to the NICU to see Wrenn.



Today was my first time meeting Tanner. He greeted me with a smile and told me he was back to see Wrenn.



He's such a happy little guy. I suppose knowing how much the Parris family has been through and how much is ahead it was uplifting to see Tanner in such great spirits.



Tanner had so much to say to me. He said his ABC's and 123's and told me how he got to see Shrek this afternoon.



Of course we wanted to try to get a few photos of Tanner with his sister but because she's still attached to medical wires it wasn't the easiest. Jason lifted Tanner up to her crib for a few photos. Tanner was happy to see his little sister again.



Yes, Tanner had fun being lifted up to see Wrenn. This moment was priceless to be a part of.



Unlike many other two year olds, Tanner was not shy of the camera. He gladly smiled for me. He has the most amazing green eyes.



We tried for a couple more photos of Tanner with Wrenn but instead decided to have Nicole hold Wrenn. Yes, priceless moments.





Wrenn's family must now wait until she gains more weight before they head to St. Louis to prepare for the lung translant she requires. Unless her condition worsens or she makes it to 8lbs they'll remain in Orlando. She's just under 7lbs right now so our fingers are crossed that in the coming weeks she'll be ready so that she and her family can move forward to helping her build the strength needed to someday be home.

Videos from my visit with Wrenn & Tanner

It was a pleasure to visit with the Parris family today in the NICU. I will have some great new photos of Wrenn & Tanner to share soon. While I continue to get the photos together to share online I thought I'd share these two cute impromptu videos of Wrenn and Tanner.

As I mentioned to Nicole that I'd like to take a video she said that things have just been so crazy that they hadn't been able to take a video of Wrenn yet. So it made my day to be able to capture a first for their family and to see this beautiful little girl smile.



Before I left the NICU Tanner returned and I got to meet him for the first time. He's such a bright little boy. He proudly said his ABC's for me a couple times.



I'll have a few more priceless pictures to share soon.

Still in Orlando

Hi everyone! Lisa M. here. I know you're all wondering what's going on. Well, Jason, Nicole and the kids are still in limbo. The transplant team in St. Louis is willing to take a look at Wrenn, but they'd like her to be a little bigger before she flies. She weighed in at 6 pounds 10 ounces on Thursday and they'd like her to be at least 8 pounds. In addition, she is fairly stable - her oxygen levels are fairly constant and she has not yet needed to be put on a ventilator. In that sense, she's doing fairly well compared to many other babies with her disease. They'd like to wait and see what happens. If she takes a turn for the worst and needs the ventilator, she may be sent to St. Louis quickly. However, if she is able to continue to do well with the supplemental oxygen and no vent, she may be in Orlando for a couple of weeks, growing bigger and stronger.

The fact that Wrenn is doing so well without a ventilator is great news. When she flies, she will have to go on a ventilator, and it's unlikely that she'll come off before transplant. The longer she stays off, the better the chances of something surprising and miraculous happening. On the other hand, this is difficult for the Parris family, not knowing what tomorrow brings.

Nicole and Jason are working on a post to share with you. I can tell you that they are extremely grateful for the outpouring of love and support over their very special little girl. You are all so amazing.