Thursday, July 29, 2010

Saying Goodbye To Orlando


Lisa M here - Nicole asked me to share some photos and thoughts about beloved friends and supporters left behind in Orlando. All of the following comments and captions from Orlando were written by Nicole. I've tried to organize them as best as I can.

Orlando - One week and a million years away.

Debbie surprised me with a visit shortly after July 4th to deliver Wrenn's beautiful sign. Not only did she make one for Tanner, she made several inspirational magnets for the nurses. It's a wonderful way to remember Wrenn and our family. I can't wait to bring Wrenn home and decorate her nursery, which will include her sign made from Las Vegas, artwork by Tanner and all the well wishes while in the NICU.


On the same day that Debbie delivered her beautiful signs, Nicole Neufeld stopped by and posed for a picture with Wrenn. It was great to finally meet. We both felt like we had been friends for many years and not just weeks!


The Amazing People at Winnie Palmer Hospital

Nurse Kristi and Respiratory Specialist Vanessa with Wrenn who is 13 weeks here.


Respiratory Specialists: Also known as my therapists and cheerleaders. They were great and really comforted us as we waited for the news of Wrenn's lung condition-- Ann, Micki, Julie and Perri

Ann's sister knitted a beautiful baby blanket for Wrenn and gave it to us the morning we left for St. Louis. Can't thank you enough for thinking of us-- God bless!


Two of Wrenn's night nurses: Aunt Carol and Theresa. I slept soundly knowing she was in your hands each night but the circles under my eyes never went away! Thanks again for the CD and onesies but for especially rocking my girl to sleep when I really needed to get some rest.


Being put on the vent pretty much killed Wrenn's therapy sessions for sucking on the binky. But I'm sure that all of Meredith's sessions left a lasting impression.

Patti, on the right, is on the transport team as a respiratory specialist. She rocked Wrenn many, many times when I was unable to do so myself. She also spent several moments holding my hand on really rough days. I miss our talks, Patti. HUGS!


A snapshot of Tanner, Chaplain Gail, Vanessa, Ann and Uncle Collin.

Gail baptized my husband as well as Wrenn in the first two weeks in the NICU. Gail's purpose in our lives was introduced by a higher power when she gave us Nicole Neufeld's phone number; the six degree type of intervention will forever give me goose bumps on how we all happened to meet. One day it will be a great story.


Back to St. Louis


We now return to St. Louis.... where Tanner is adjusting well, playing with the play kitchen at sibling day care:


We never forget the reason for this blog... the one thing that has brought us all together. Here she is: Wrenn asleep.


Wednesday, July 28, 2010

St. Louis Day 7


This post was sent in by Nicole Parris.


St. Louis Children's Hospital has done a wonderful job in making us feel at home. There are several retreats throughout the hospital that allow us to get away without actually leaving the hospital. On the same floor as the NICU there is a Ronald McDonald Room; we can do laundry, watch TV, play games with Tanner or visit with other families over a cup of tea. In many ways we already feel settled even though our future residence is still unknown (we are on the list for the Ronald McDonald house but the list is long). On the 8th floor there is an outside area to get some sun and take in the view of the city. Since most of our time is spent indoors, this is a place I visit often to help catch my breath.


The flight was bumpy for Wrenn but the doctors at the NICU did wonders getting her stable those first 48 hours. I was unsure about how she'd do on the trip and say what could have been a real goodbye back in Orlando. I think it will take a lot more than that to knock down my little firecracker. She is still fighting hard and is making us proud at how well she has transitioned to her new home.

As our roller coaster ride continues, I am thankful that we are surrounded by such wonderful nurses and doctors here in St. Louis. They have already learned that Wrenn is feisty, which I am told is a good thing if you are in need of a transplant. I'm sure the nurses will be experts on Wrenn's personality very soon! :-)

Wrenn was switched back to the ventilator this morning and is stable. She is still on minimal sedation but continues to open her eyes and memorize new faces and voices. She listens to her CD's, some familiar (like the one Aunt Carol gave her back in Orlando) and some new (a CD from Jaimie; a nurse we had the first few days Wrenn arrived). :-)

If possible, I hope to hold Wrenn in the next few days. I am cautious and don't want to do anything that will upset her. I rely on the nurses to advise me on this when the time is right.

Tanner is enjoying his time in the sibling daycare room and visiting his sister's new private room. One of our new friends, Liz and Dan, based here in St. Louis, brought Tanner some books and toys to our hotel. I cannot thank them enough for taking the time to do this. You guys are awesome. :) HUGS


Wrenn received your cards and letters this week. As usual, the prayers and kind words always come at my darkest moments. Please keep praying for her lungs to heal, answers to come our way, and of course, the perfect set of lungs, should that be her path.

Jason and I feel the love and support from everyone involved and we thank you for carrying us through this difficult road. I will update as you as time permits. :-) I want to again thank Lisa M. and Nicole N. for everything they have done for our family and this blog. ((((HUGS))))

Sunday, July 25, 2010

St. Louis: Day 4


This post was written by Lisa Macon.

The first few days in St. Louis have been very busy for the Parris family. Nicole has kept me up to date via text messages when she gets a chance. I will share some of them, as well as some photos she sent me via MMS.

July 25 3:17 AM
Wrenn had a rough flight as do most surfactant babies. Their lungs are heavily affected by changes in altitude, which make it difficult for the transport team to keep their CO2 levels low.
Once Wrenn arrived in St. Louis, the medical team had to stabilize her. Her hemoglobin level was low and her CO2 level was the highest it's ever been. She was placed on an oscillator, which is a large machine, more powerful than a ventilator but gentler on the lungs.

The medical team has done a lot of blood work on Wrenn, but first they put in a Broviac line for easy withdrawals. She did great during and after that surgery. To help raise her hemoglobin level and lower her CO2 level, Wrenn was given a blood transfusion. She will receive more transfusions during the transplant process.

The NICU team has been very methodical in how they've treated Wrenn. Their goal is to take a critically ill baby and bring her to a stable condition - keep her comfortable, stable, and make sure all her other organs are working well. This includes her heart, which now beats at a much slower rate (90-140).

The goal of the NICU team is to wean Wrenn from the oscillator back to the ventilator, and if possible, back to the Camula flow like she had in Florida before she needed the ventilator. However, the odds of doing this prior to transplant are not good because during the trip she once again developed Persistent Pulmonary Hypertension of the Newborn (PPHN). This often happens during a traumatic experience. I am told this is due to her lung problem as is her enlarged heart. Post transplant, both conditions will hopefully disappear.

Liz, a wonderful woman, and her husband Dan, met Wrenn today and also delivered some toys to Tanner to play with that their two boys enjoyed when they were little. I met Liz through my friend Pam who has stood by my side throughout this entire ordeal. Liz's father is a transplant surgeon in Houston,, so she knows about what we are facing. I want to thank her for taking the time out of her schedule to visit us at the hospital, and for thinking of Tanner who is also struggling to adjust to his new environment. (Lisa's note - just take one look at his face. It speaks a thousand words.)


July 25 9:12 AM
I'd like to say a word of thanks to Nicole Neufeld, who had a Fay's Friends gift bag waiting for us in Wrenn's room. I'll take a photo so you can post it later. I also owe you material about Debbie's beautiful signs and Nicole's visit to Orlando. I haven't even cracked open my laptop yet but I will in the next few days.

July 25 9:53 AM
Everything is so methodical here. It takes the emotion out of it somehow. All business with one common goal. It's crazy.

July 25 11:50 AM
News flash. Just met a dad two doors down whose daughter is being tested for a surfactant deficiency. I'll give you more information as I hear. It's a freaking epidemic.

July 25 10:02 PM
The photographer took pictures of Wrenn today. They do this for parents when kids enter and leave NICU. I'll load those tomorrow. Wrenn had a better day today. She is moving around her. 90% oxygen. Not as swollen and doing well with feedings.


I hope Nicole doesn't mind my posting her texts. But I think it's important for people to realize what a typical day is like for her. Finally, I'd like to share some photos of Wrenn's present world with you. Welcome to her room.


And now, please observe a moment of thoughtful silence, prayer, and/or communion with the universe to appeal for help for what rests peacefully, for the moment, inside.


Rest well, sweet Wrenn. We love you so much.

Friday, July 23, 2010

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

Friday, July 16, 2010

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!

Thursday, July 15, 2010

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

Friday, July 2, 2010

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.

 

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