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Monday, May 31, 2010

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.

Saturday, May 29, 2010

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.

Wednesday, May 26, 2010

Wrenn is Six Weeks Old Today

She's never seen her house. She's never slept in her crib. My heart breaks when I realize how long it will be until she does these things, even under the very best of circumstances.

Please keep Wrenn and her family in your thoughts and prayers tonight. They hope to find out tomorrow that they have been accepted for transplant at St. Louis Children's Hospital.

Tuesday, May 25, 2010

The Love Between Brother and Sister

Hold on to your heartstrings. Tanner paid a visit to the NICU a few days ago and was able to touch his sister Wrenn... for the very first time. In another reality, these siblings would have been together all day, every day, for the past six weeks. Instead, they are only able to share short moments together, once in a while.

Sunday, May 23, 2010

Sheridan Asks You to Help Baby Wrenn

What do you do when your 5 year old tells you she wants to help her friend Tanner help his sister? Here's what I do - pull out my video camera and start asking questions.

Friday, May 21, 2010

Wrenn's Golf Tournament

North Shore Golf Club in Orlando, Florida is hosting a golf tournament to benefit Wrenn Parris via the NTAF Southeast Lung Transplant Fund. The tournament will be on Saturday, July 17, 2010 - Shotgun start at 7:30 am. Each team of four costs $300. Hole sponsorships are available for $100 per hole. All proceeds will be sent to NTAF to go directly to Wrenn's medical expenses, and all donations are 100% tax-deductible. Thank you North Shore and thanks to Lee Siskie for setting this up!

Thursday, May 20, 2010

The Amazing Amanda Kern Strikes Again!

It certainly would have been enough if all Amanda Kern did was that gorgeous and moving photo shoot for the Parris family. It was more than enough that she did the photo shoot and a blog entry to get the word out about Wrenn. None of us could have asked for more.

But Amanda has done more. Much, much more.

Today she put up a blog entry offering a giveaway of two free photo sessions, each worth $650, to be given away in a random drawing to anyone who donates $10 or more to Wrenn's National Transplant Assistance Fund.

Thank you, Amanda!!!

(Please visit her blog for a complete description of the photo sessions and entry rules.)

Getting the Ball Rolling

Just a quick update to let everyone know that:

1) Jason and LisaM got the National Transplant Assistance Fund (NTAF) site up and rolling, so donations can now be made directly through their website. There is a permanent link on the sidebar to the right.

2) A Facebook page has also been set up. Please pass the link along to all your friends.

We'll continue to update you all as regularly as possible.

Many thanks to all of you who have helped out and who are sending love and prayers to Wrenn and her family.

Wednesday, May 19, 2010

Beauty and Hope

This morning I woke up to an email from LisaM (she wrote the first post here) with a link to the blog of a friend of hers who is a photographer. Her name is Amanda Kern, and she took some time yesterday to do a photo shoot in the NICU with Nicole, Jason, and Wrenn. She has posted some of what she shot on her blog and has written a lovely post about their experiences together. The pictures are incredibly moving and poignant (tissues are definitely in order), and Wrenn is looking amazingly pudgy and wonderful. Head over there and take a look.

In other news, an account is being set up with the National Transplant Assistance Fund (NTAF) for the Parris family. It should be ready to roll in the next 24 hours or so, and as soon as that information is available we will post direct links.

Please keep spreading the word about Wrenn--she needs all the positive energy the world can send her way!

Saturday, May 15, 2010

For breath is life, and if you breathe well you will live long on earth. ~Sanskrit Proverb

My name is Lisa Macon. Nicole Parris is my friend.

Lisa on the left, Nicole on the rightI met Nicole eight years ago in an online group on BabyCenter called “Trying To Conceive Again”. Most of the group members, including myself, were experiencing secondary infertility, struggling to have another child after having had one or more successfully. Nicole was one of the few members trying again after miscarriages with no children as of yet. We were part of a group of amazing women, many of us still in touch, far-flung around the U.S., although most of us, including Nicole, have gone on to have the babies we dreamed of when we met. Together we have weathered many storms including surgeries and the loss of one of our own due to an inoperable brain tumor. You’d think with all this experience with tragedy we’d be ready for the next one, but nothing could have prepared us for what is happening to our dear friend Nicole and her family.

Who is this pretty when they are pregnant! No one!On April 14, 2010, Nicole gave birth to her second child, Wrenn Elise Parris. Wrenn was a welcome addition to the Parris family, consisting up to that point of Nicole, her husband Jason, and their 2 1/2 year old son Tanner. Other than experiencing the exhausting joy of chasing around an active toddler while dealing with morning sickness and exhaustion, the pregnancy was quite uneventful. All tests showed a perfectly healthy fetus developing. Up until the moment Nicole went into labor 3 weeks before her due date, all signs pointed to a healthy, perfectly normal baby arriving to join this amazing family.

I need to tell you what kind of parents Jason and Nicole are to Tanner, and you need to understand just how wanted he was by his parents, who tried for over 9 years to have him, weathering unexplained infertility and multiple miscarriages in the hopes of one day holding their baby in their arms. Tanner is doted on by his mom and dad. He doesn’t miss a single experience, although his mom worries over every scrape and bruise. Even in times of economic struggle, he eats organics. He has the best of everything even if it means his parents go without. It would be difficult to point out a more secure, well-loved child. If you’ve struggled with infertility, you maybe overlook the red crayon your child smears on the walls of your home. It is impossible to forget the joy and relief that results when you hold that priceless package in your arms for the first time and realize, “We did it. He’s ours, and the nightmare of wanting is over!”

That was true for the moment when Tanner was born. The true nightmare would begin a couple of years later.

When Wrenn arrived, she was whisked to the NICU right away. She was having trouble breathing. The initial diagnosis was Persistent Pulmonary Hypertension of the Newborn (PPHN), a not uncommon condition in full term babies whose bodies just need an extra day or two to realize that they are no longer in the womb before their systems switch to “Hey, we are on the outside!” status. But after nearly a week of pumping oxygen into her lungs with no improvement, doctors began to wonder if there was a more serious condition causing the problem. Wrenn cannot breathe on her own. Even with 75-80% oxygen being pumped into her lungs, she still breathes like a tiny rabbit, and when the oxygen is removed or turned down too low, her lungs collapse immediately.

The doctors began to suspect a Surfactant Protein Deficiency. SPD is a very rare genetic disorder where the child cannot manufacture the protein surfactant that takes oxygen from the air we breathe and puts it into our blood to be circulated through our bodies. Without this product, we cannot get the oxygen we need to survive. Wrenn and her parents were subjected to blood tests to determine if SPD was the problem. After over two weeks of waiting for test results, we now know Wrenn indeed has ABCA3 Surfactant Protein Deficiency, and she will need a lung transplant. There is absolutely no other way for this beautiful, much-loved baby to have a chance at a normal life.

Nicole and Jason are both carriers of the gene that causes this fatal disease. Even though they had basic genetic testing years ago during infertility, this is such a rare gene for one person in a couple to carry, much less two, and the test was not performed on them at that time. Each of their children has a 25% chance of having this disease. Tanner is quite likely a carrier.

Even though the Parris family has a wonderful family support system and excellent health insurance, there will be costs that they cannot hope to pay. They will be relocated soon to St. Louis, Missouri, from Orlando, Florida to await and prepare for a transplant. There will be travel expenses, living expenses on top of the upkeep of their home, care expenses for Tanner (who is used to being home with Mommy every day), and of course with Jason unable to attend to his two home-based businesses with any sense of regularity, this will strain the family financially. Those of us who know and love them do not want them to worry about this on top of everything else they have to deal with, so we are pursuing all options at their disposal. Every little bit helps.

Nicole will be posting blogs here regularly as soon as she is settled in St. Louis and until then, her friends will keep this blog updated with news. Please keep Wrenn and her family in your prayers. Any form of assistance is appreciated. In the next few days, this blog will link to a site where you can support the family via PayPal if you’d like to help out.

Thanks for visiting.

If we have anything to do with it, Wrenn will make it to 99! ~ Lisa Holmes, another friend from the BabyCenter group, who created this site.

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