Welcome to St. Louis Wrenn Parris, and Golf Tournament Recap

(This post was written by Lisa Macon)

The past week has been an emotional roller coaster for the Parris family. I'm sorry that I haven't posted more regular updates. I feel as if I'm always waiting for good news, and by the time there is more news, good or bad, the old news seems really old. But I hound Nicole and Jason for news constantly, so that I can pass it along, and I do want to share the details.

Here is the sequence of recent events:

Preceding weeks: Wrenn's breathing began to deteriorate slowly. At one point she'd been on 7 liters and about 78% oxygen, but her need for oxygen began to increase to the point where she was back up to 8 liters at 99 percent.

Saturday July 17: Wrenn's Golf Tournament was held at North Shore Golf Club in Orlando, FL. It was a resounding success and some pictures are displayed at the end of this post. Over $10,500 was raised to help pay for Wrenn-related expenses.

Sunday, July 18: Wrenn's breathing deteriorated to the point where she could no longer breathe without the help of a ventilator. On this sad and difficult day, Wrenn was sedated and strapped down as the breathing tube was inserted down her throat. No longer can her parents hold her or see her smile. On the plus side, her color is much better and finally her poor little lungs can rest and let the ventilator do the work for her. Here is a picture of Wrenn, very different from the ones you've seen posted on this blog up until this point.


Tuesday, July 20: The St. Louis Children's Hospital Lung Transplant team approved Wrenn for evaluation. Wrenn's Lear jet was scheduled to leave Thursday morning. Her parents quickly threw their necessary belongings together and planned to leave as soon as they saw her in the morning to say goodbye. Here are some photos of the card the medical team at Winnie Palmer Hospital lovingly made for Wrenn. We are pretty sure just about every hospital employee signed it!


Thursday, July 22: Nicole, Jason and Tanner left in the morning for the 16+ hour car ride from Orlando to St. Louis. Wrenn's jet took off in the early afternoon. The Parris family stopped around midnight at a hotel. Here is Tanner and Buzz watching Toy Story in the car. (Tanner, by the way, was an excellent traveler!)



Friday, July 23 (Today): Jason, Nicole and Tanner arrived in St. Louis at about 1pm. They are currently meeting back up with Wrenn and, I'm sure, getting to know doctors and medical staff at the new hospital, as I wait anxiously for news.

Please stay tuned via the Facebook page (link to the right). I will try to post regular blogs every couple of days with details, but breaking news is easy to put up quickly on Facebook, anytime, from wherever I may be.

"I met my husband 17 years ago. We have played together in many a charity golf tournament. Never in a million years did we think we would be on the receiving end of one." -- Nicole Parris

It is easy during trying times like these to feel nothing but despair. But I don't. So many people are helping this incredible baby - it's enough to restore anyone's faith in the kindness of their fellow human beings! At Wrenn's Golf Tournament on July 17, nearly 30 teams of golfers came out to play in support of Wrenn. 22 local business sponsored holes on the course, and over $7000 worth of goods and services were donated for raffle prizes. Jason and Nicole both gave emotional speeches of thanks to the golfers at the luncheon/raffle after the tournament. Here are just a few snapshots of this wonderful, inspirational day.

The players enjoy lunch, donated by Nature's Table, following the tournament. In the background, you can see some of the many prizes that would soon be awarded:


Jason played in the tournament with his many, many friends. Here he is with some of them (Bob and Carey, plus Tanner):


Another team of golfers (Dean, Greg, Joe and Dave):


The Red Bull team, a big donation giver for the day:


And yet another team. I don't know who that second guy on the right is, but he sure is cute! (Just kidding. It's my husband Brian with his teammates Mark, Mike and Rob.)


Marshall English customized a "Wrenn" painting of a hole at North Shore during the raffle drawing. Please see his website (http://marshallenglish.com) to purchase one of these gorgeous works of art! Remember that a portion of all proceeds provides assistance to Wrenn's family.


Jason and Manny, who I was told "gives Jason and the other guys my money every week!"


My kids and I working the raffle ticket sales as final team scores are posted in the background:


There are many more pictures from this wonderful day, and I will sprinkle others in the posts in upcoming weeks. For now, I would like to send out a HUGE THANK YOU once again on behalf of the Parris family to Lee Siske who organized the tournament and to everyone else who helped in any way big or small. A charity golf tournament is a great way to raise funds but even by usual standards, this tournament was a huge success, and that is no surprise to me. Wrenn is a very special baby and she and her parents are well loved in our community. While it saddens us that the tournament took place on the last day Wrenn breathed without a ventilator, it was a very special day and the proceeds will help her parents make it through the next few months.

That being said, the road ahead is still long for the Parris family, and even this great fundraiser won't support them throughout the entire journey. Please pass on word about Wrenn to everyone you know so that they can help in whatever way they can. Thanks for reading and for keeping Wrenn in your thoughts and prayers.

"I would like to tell you a little about Wrenn. She is a very special girl. She has never known any life other than the one she has lived in the hospital, but she smiles at us all day, every day." -- Nicole Parris

Got Milk?

From Nicole Parris...

GOT MILK? I’m giving back to the entire NICU!

No, not really….but it sure feels like it some days. I wanted to share with you a photo of my refrigerator freezer. I pump every three to four hours so that Wrenn can benefit from my breast milk but as you can see, my freezer has had enough! I’m always excited when the milk tech requests 30 to 40 bottles. I can only imagine what the Winnie Palmer NICU freezer looks like. Haha!

St. Louis

An update from Nicole Parris...

It is very difficult trying to make decisions for Wrenn when her condition is so unknown. Her degree of severity, I am told, is the worst because she has a double mutation. It really makes sense for her to be seen by the experts so we agreed to have her flown to St. Louis. We will know the date within the next few weeks. The doctors there can perform their own tests and will hopefully put her on the list for a transplant, which is what she needs to be able to function in this world as a normal baby. As with any transplant, there are always risks of complications, infections, rejections and death while waiting. The unknown is so scary and I battle the ‘what if’s’ every single moment of the day. I question every decision I make and already wonder if flying her to St. Louis is the right choice. Wrenn’s doctor told me that I’ll live a life filled with guilt if I try and question every road I take should the outcome not be favorable. I wish I could just flip a coin but as one good friend recently said, “I know you won’t!”

Wrenn at 11 weeks with Mommy



Wrenn on the Fourth of July

Update from Nicole: July 1, 2010

Hello everyone,

Wrenn's doctor finally had a chance to sit down and talk to St. Louis about our situation. And here is what they said.

They are waiting for Wrenn to declare herself. Dr. Sweet has seen babies get worse over time and some get better. They can't give her a new lung until she is in NEED of one. What they can't tell us is how long we might have to wait to find out how her particular mutation progresses.

What they did say was that some babies who were worse off than Wrenn got better. Those babies were vented and came off the ventilator and could be weaned down on the oxygen and liters. This information amazed me because if you are born with limited surfactant protein, I can't imagine growing it or getting it later on in life. The doctor had a hard time explaining this to me but in a nutshell, as she grows she uses less of the surfactant protein and more of her lung capacity. So asking you all to pray that Wrenn's lungs heal or better distribute surfactant protein is NO joke. There is a possibility that she won't need a lung transplant ever, IF she can get weaned off the oxygen and liters. Right now she is still at the highest levels but stable, which is great!

For the time being, we are not going to send her to St. Louis to be evaluated because she would still have to be shipped back to either Orlando or VA. It's risky and could hurt her in the long run. She is NOT on the list for a transplant until she declares needing one.

We have chosen to keep her in Orlando for now. Within the next two months she might be transferred across the street to Arnold Palmer Children's hospital where she will continue to grow and receive therapy to keep her developmentally up to date.



The hard part is that she is still in the hospital on HIGH levels of oxygen and on 8 liters. The only way she could come home is to be trached and vented and would require 24 hour care in our home by a nurse. NOT an option for us right now. She needs to get down on the liters. (We need to pray for her to go from 8 to 1 or zero!) Time will tell if she is the baby that will improve or decline.

Please continue to pray for her condition to improve. I really picture her leaving the hospital in her car seat with her lungs intact. I would love for all the nurses and doctors to witness a miracle and I totally believe that with this disease, anything is possible!

Today she looked right at me for several seconds and then smiled, twice... it was the best day ever to see that.. I took it as a sign that all will be okay... it's been a while since I've been able to say that. For now, I am going to just believe.

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