One Year Ago

Sent in by Nicole on 7/21/2011

This week in particular, a year ago, was a huge turning point for our family. 

Where most couples are focusing, remembering and celebrating those common dates like birthdays, anniversaries or a first date with that special someone we recall this week in July, 2010.

On July 4, 2010 I had a bit of a screaming match with God in the parking lot of Winnie Palmer Hospital.  I was frustrated, angry, sad, desperate, guilty and becoming impatient.  It was also the day I realized I wasn't pulling the strings.  And that the almighty miracle wasn't going to happen.  It was a day I asked for something to happen, anything.  I needed to move forward and see how this situation was going to play out for our family.  We had spent 3 months in the NICU in Orlando and went up and down on the oxygen like a yoyo.  But it was clear from that day forward God heard me. 

For the next three weeks Wrenn steadily went downhill and needed more and more oxygen.  On Sunday, July 18th, Wrenn was intubated and the gate opened to qualifying for an evaluation in St. Louis, Missouri.  Things moved fast and even though I had been told what would come, I wasn't prepared, mentally or physically.  I wasn't even sure Wrenn was stable enough to make the flight.  Four days later, the team from Children's flew to Orlando and took my baby away and from that point on, we were all entering the unknown. 

We left that morning just before the team arrived (on the advice of Wrenn's doctor) and started out on a 17 hour road trip. Tanner was snuggled in the back seat with Buzz and about 10 DVD's.  I nervously held my phone and spoke to the doctors as they updated us on Wrenn's condition when she landed in Missouri.  It was the most nerve-wracking drive of my life. 

Being told by the transportation team that Wrenn was a 'memorable' patient because she had been blue for the entire trip wasn't the welcome we wanted to hear but now that I reflect a year later, I am amazed as much as everybody else is with my daughter's progress. 

"Do you want more, Wrenn?" I asked my little princess tonight at dinner.  She crinkled up her nose and used the 'more' sign signal and gladly took another bite of yogurt.  When she was done eating she got herself out of her high chair and then took her walker over to Tanner, smiled at him and started playing with a toy that he was playing with.  "Mine," Tanner snapped.  I do as I always do and watch and teach and thank God for what I'm seeing in front of me.  Two great kids.  Two miracles.  And a happiness that I feel almost every moment of each day because I know it could have gone either way. 

Wrenn's bronc results yesterday were the best news of the year!  No rejection.  I don't think anybody could believe it, even though she's doing awesome, she's still such a feisty little mystery at times.  I watch as her transplant coordinators and doctors shake their heads in Clinic in her amazement of stomping her feet on the table, giggling, signing, and throwing everybody kisses.  The entire story is mine to tell and I really have times that I don't even believe it. 

Last week Wrenn had her six month evaluation with her therapists and I couldn't believe how much progress she has made in that short of time.  I remember when I was in the hospital all those months thinking that I was missing out on seeing her develop and it saddened me.  What I realized at that meeting was that I didn't miss a thing!  I watched her roll over, sit up, smile, coo, learn to eat, get new teeth, toss a ball, crawl, laugh out loud, steal her brother's toy and run off, and walk.  I've seen it all and in a very short time.  Day to day I don't analyze her progress; I just live each day. 

I can tell you, a year ago this week, Tanner got his first Buzz doll and now he's got at least 12 more in some form.  His Toy Story collection ranges from blankets, book bags, and videos to Halloween costumes.  Toy Story was a huge comfort to him and I don't think we'll ever forget how his buddy was there for him during our crisis.  I'd be naive to say he wasn't affected by everything he's been through.  A recent therapy session at Children's revealed he's very stressed and needs more security in his life.  Some stress comes from a sibling arriving and some from being uprooted over night to a new place with new people.  Kids are resilient as Wrenn has shown but often times the trauma comes out later.  So we are take him swimming on the weekends and trying to do more one on one time.  Overall he's doing great and is a wonderful big brother.  It's hard to believe when Wrenn was born, he was just 2.5 years old. Such an impressionable age.  Now he's 3.5, nearing four and challenging us in all the normal ways right now. 

I realized at one point that things were starting to turn around for our family and I thought about how to give back.  Like... telling friends and family to donate to their local Ronald McDonald house to help other families in need.  There's nothing worse than living the hospital life away from home.  My friends have been there for me since the beginning and sending us DVDs, care-packages, cards, emails, and toys for Tanner was just the most awesome thing in the world.  Especially when you're out of sorts and in a new surrounding. 

I have made so many new friends here in St. Louis.  Many people continue to ask how Wrenn's doing.  They of course always want to see how Tanner-Bug is doing as well.  Each person asks and genuinely wants to know how we're doing in general. 

I am told that Wrenn won't have another bronc until late October, early November since this last one came back clean.  This is a relief to know she's doing great and to know we don't have to do another one for several months.  Hopefully she'll continue to grow, thrive and stay healthy! 

The New Normal

Sent in by Nicole late on 6/6/2011

At our March appointment, the transplant team told us to go out and live life away from the hospital. And so that’s what we’ve been doing. (Minus the labs Wrenn gets drawn once a month to measure her levels) We’re still trying to figure out our ‘normal’ but feel we are almost there. So many great things have happened since March and we finally got to a point where we could catch our breath.

For an entire year I’ve taken care of my family and now, finally, I’m getting myself back in order. I eat sitting down and I can enjoy fruits and veggies again. I do Yoga, Pilates and cardio four to five times a week and sometimes sleep for almost seven hours a night (give or take a day or two). I have a lot more energy and the stress has shrunk to a manageable level.

For our family, spring came just in time. We were tested with the Missouri winter, which had plenty of snow and temps in the teens. With flu season and the threat of Wrenn catching RSV past us now we are enjoying the outdoors every day. Tanner was a complete angel when Wrenn came home and I couldn’t have asked for a better big brother. He has, however, had enough of the apartment and needs to get out that ‘boy’ energy.

We take advantage of the evenings and shady areas at local parks, which are abundant in St. Louis and very well thought out. It’s great for Wrenn to get out, stroll around the beautiful scenery and get shot with some good ole’ vitamin D. Some of the parks have water fountains Tanner can run through, cool slides, monkey bars, swings and jungle gyms. The Missouri winds allow for great kite flying days as well. (Yes, with a Buzz Lightyear kite of course!)

When Wrenn was first diagnosed we knew we’d be challenged in keeping everybody safe from getting sick. I’ve told the transplant team, we will live in a bubble but with one foot out. The one foot out is Tanner and I have to allow him to live as normal a life as possible so that he doesn’t feel like he missed out on a ‘fun-healthy’ childhood. But Wrenn doesn’t have to miss out on life either. During the summer months the chance of getting the flu is decreased and the same goes for RSV; two really bad things to catch if you’re a double lung transplant recipient. So we are LOVING summer!

A while ago, we joined the YMCA and the one here in St. Louis has a huge outside water complex; four pools, a lazy river (which Wrenn loves in her little float) and fountains for the kids to run through. We go in the evenings a few times a week from 6-8pm; a time when most families are gone and the area is shaded. I think we are all feeling much better for being outside and feeling a bit more ‘normal’.

After being inside for six straight months we get out once or twice a week for a real meal at a restaurant. I bought Wrenn a traveling highchair so she’s only touching her own germs and the area around her is sterile. 99% of the time we eat outside, however the transplant coordinator told us today that it is fine for her to eat inside since the virus season is dormant. We try and sit far away from other people and go at times when it’s not as crowded like on Sunday nights or weekdays. The coordinator told me that right now, she can do everything Tanner is doing and that made me smile. She said to let Wrenn live her life because you never know how long she’ll be with us. She told us that Wrenn could look perfectly fine, healthy, oxygenating great and still have severe rejection. There is no real way to know what her body is doing until she’s tested and then they attempt to treat it. They suggested to react to WHAT IS and not to what MIGHT BE. Jason and I are on the same page and we choose to just wait until we have something to worry about and then attack it head on. We can’t control her body and neither can Wrenn. When you’ve only done 87 infant lung transplants, the bell curve is skewed and the data is lacking. The scary thing is, they just don’t know why some do better than others. They did however, say that the younger babies tend to do better in avoiding rejection because their immune systems have not had time to develop and the body is more accepting of the organ. It’s all a leap of faith.

Wrenn is progressing like lightening. She’s feeding herself solid foods like pasta, veggies, fruits, meats and cookies. She has four teeth up top and two below. She crawls fast and chases Tanner all over the house, which he loves. She is his #1 FAN! She walks fast with a baby walker and stops, picks it up off the floor, then places it in a new direction and heads somewhere else. Obviously, she’s very strong. She is close to walking on her own but because she spent so much time with her ankles turned outward in the hospital, is stiff in those muscles so it may take another month to where she has perfect balance and is walking on her own. (Which is fine, because I can barely keep up with her little legs now!)

Wrenn says Mama, Dada and bye-bye. She gives and receives high fives. She kisses on request and imitates our facial expressions. I often find her playing in Tanner’s toy box more than her own and she claims Buzz Lightyear for her favorite toy. She takes Tanner’s binky and plays keep away by using both hands. She giggles when Tanner giggles and loves playing with Lincoln Logs. When she’s in her swing and drops a toy Tanner hands her a new one. She giggles and drops another one. The two are a good team and it’s the sweetest thing watching them interact. Probably my favorite moment to share is mealtime. Tanner is not the greatest eater but Wrenn loves to try his food. If anything is left on his plate, Wrenn makes her way to his table and helps herself. She has a healthy appetite and Tanner often says ‘No Wrenn’ when he sits down to a meal. She stands next to him like a little puppy and watches him. It’s adorable!

Our wonderful family from Winnie Palmer gave Wrenn a very special birthday gift for her birthday. A silver box engraved: “The Best Thing About Miracles is That They Happen.” In the box was a beautiful silver bracelet with an angel pendent. Wrenn’s name is engraved on one side and then on the other side it is signed, “Your WPH guardian angels.” The gift brought tears to my eyes. You’ll never know how much they thought about and supported our family from afar all these months. They have no idea how much they did for us and I’m sure they’d all say, ‘we were just doing our jobs’. The biggest thank you and hug comes your way WPH for taking such good care of our daughter and you all know what you mean to our family.

Today Wrenn had her nine-month tests. It was a little different; they allowed us to hold her and even sedated her in my arms. It was strange—she was crying and then her voice turned silent; her eyes fought the medication and her body turned limp. It was an eerie moment and it was hard leaving her but I knew she was in good hands. They conducted a High resolution Chest CT and CXR, Ventilation Perfusion Scan, Echo, and Infant PFT’s. This tells the transplant team how those new lungs are doing and if she has any infections. On Wednesday she is having her nine-month Transbronchial Biopsy, which checks for rejection. The results should be in by Friday or at the latest next Monday.

Wrenn will have these tests done every three months until she’s almost at the two-year mark or until her doctor feels comfortable with her progress. Once she has a true history with bloodwork and routine tests, she’ll only have them done every six months but always here in St. Louis.

Today, we pray everything comes back great and that she has an uneventful bronc on Wednesday.

I will update everyone on her results as they come in.

XOXO Nicole

As always... in Wrenn Time

Yesterday Wrenn visited the Immunologist.  The doctor said that Wrenn’s levels are great and felt that the only reason her immune numbers were so low previously was because she was so sick going into transplant and had a really rough/long recovery.  The good news is that she doesn’t need any more monthly infusions and doesn’t need to be seen again by the Immunologist until September.  Thankfully, Wrenn’s still heading in the right direction and we’re happy to see the bumps only in the rear-view mirror.

During Wrenn’s journey in the NICU I was introduced to Dr. Rosenbaum.  She specializes in how parents want their children cared for, especially those patients who are high-risk or near the end of their life.  She was involved in Wrenn’s care concerning her sedation medications and visited us many times during the week and even on the weekends.  She wanted to make sure we understood the methods used in keeping Wrenn comfortable. 

I’ll admit, there were days I thought we were going to have the discussion of where our limits were with Wrenn’s care as we neared the end and I’m glad the new lungs arrived ‘just in time.’  Things could have turned another corner at any given moment.  I was thankful Dr. Rosenbaum was involved and that she cared so much about Wrenn’s well-being, but also made sure we were all on the same page. My biggest concern was that Wrenn wasn’t suffering. 

Working so closely with Dr. Rosenbaum we formed a bond of mutual trust, which didn’t happen overnight. But as we built our relationship she asked if I would one day be interested in speaking to her first year medical students to share our story.  At the time (back in mid-August) I remember thinking, “Oh my God, I’ll never get through it!”  But then I figured as time passed and things got less crazy I’d have no problem sharing Wrenn’s story. Immediately I was on board!

Well….Sometimes tasks sound so much easier than they really are.  Over the last twelve months I’ve shared my story with several doctors, nurses, friends and new acquaintances and there’s one thing that’s always consistent; when I begin talking about how it all started, I get choked up.  EVERY TIME!  It’s starting at the beginning that’s the hardest and I don’t know why, especially since things have turned out, as I wrote in my previous entry, ‘perfect.’  (As perfect as life can be under the circumstances.)

Finally, last Monday, at my speaking engagement with Dr. Rosenbaum’s students, history repeated itself.  I opened my mouth and immediately felt a lump in my throat:  an overwhelming feeling of sadness and darkness grabbed my breath. I couldn’t talk.  I was frozen in time and then I realized that even I couldn’t believe that this was our story.  It’s been a year now. ‘Shouldn’t it be easier to tell?’ I thought.

After what felt like twenty minutes of dead silence I finally composed myself and began; but shakily, sadly and I kept whispering to myself that I was there to speak so… KEEP SPEAKING! I then yelled at myself to pull it together and to keep going as the students stared me in the eye. I dug deep and then I found myself angry because I appeared weak.  For all those months of waiting, watching and wondering, I was strong for almost all of it. I wonder now if maybe I should have been more emotional to really get it all out. Maybe then I’d have an easier time talking about the life we lived for 365 days. 

I imagine my reaction is similar to how some people have reacted tp the death of a loved one.  At the funeral there are no tears and then a couple of days later, it hits them like a ton of bricks.  I believe this is what happened to me.  I guarded myself for the ‘what if’s’ and now I feel most vulnerable when telling her story. To be honest, I don’t think I’ll ever be able to tell Wrenn’s story without shedding tears.  Those first few weeks were the most painful and as I’ve said many, many times, I hate going back.  Mentally it’s so painful.  I lived it! I don’t want to relive it.  So why did I put myself through a speaking engagement?  I want to—need to somehow give back.  I have a wealth of knowledge and feel I can pass that on to others in whatever capacity it might be.  They will understand how a husband, a wife and a sibling got through it all.  

As I spoke to the students about Wrenn’s initial diagnosis I asked them if they’d ever known anybody who needed or had a transplant.  They all said no.  I then realized that there was no way in a million years I’d ever be able to explain to these first year medical students what’s entailed in receiving a double lung transplant; at least not in ninety minutes.  Transplant in itself is complex.  It’s life changing.  It’s not a cure.  It’s expensive.  It’s unknown.  Statistically, it’s not favorable.  Yet, it’s an opportunity.  And all of it is a leap of faith. 

I did my best.  I gave Cliff Notes but to be honest, the two-hour visit felt very unfinished. I didn’t feel like I gave it my all.  I didn’t feel prepared.  I didn’t feel like they totally understood; how could they? I went through it and I can barely grasp the reality of our situation.  I then thought back to those first few breaths when I froze with tears and realized that my emotions probably said it best. It was hard and still is. 

My hope is that each student went away inspired by just one thing I said.  No matter how much they actually consumed, I pray that they remember a single aspect of our story. Maybe they’d remember how I made them laugh when talking about my son’s pacifier habit, which has obviously brought him comfort.  As a matter-of-fact, if I thought a binky would cure my baby blues, I’d have sucked one all year long!

I hope as time goes on that I’m able to talk about our story with more joy than sadness.   Wrenn's story is so amazing and I want to tell it with an inspired tongue and with happy tears.  Maybe Wrenn will be better at telling her story than her mommy.  I guess I’ll just have to keep on doing it until she can do so herself.  Then I know the story will be told perfectly.  As always, in Wrenn time.  

One Year Old

(Sent by Nicole late on 4/14/2011)

A year….

After typing those two words, I sat back in my seat and it hit me:  It’s been an entire year. How’s that possible?  A year ago today I was wondering why I was already 5 centimeters.  I had no idea that on Wednesday, April 14^th, I’d be giving birth to my baby girl four weeks early.  The same baby girl who, I'd been told by my high-risk doctor week after week, was perfectly healthy and whose lungs were completely developed. He said not to worry; she’d be fine. 

He was right!  They were developed... just lacking an important protein called Surfactant.  Something everybody needs in order to live.

For WEEKS, I blamed myself for going to that last minute yoga class thinking I had caused all of her respiratory issues by giving birth too soon.  That’s it!  “I was the reason she couldn’t come home,” I told myself.  

So many times I told the nurses at Winnie Palmer that I wanted to go back in time to Wrenn’s original diagnosis; Pneumonia.  It was such an easy problem to solve; antibiotics; home in five days; case closed. I still try to comprehend how one goes from pneumonia to a double lung transplant.  To this day it still sounds insane!

I recently stumbled across Wrenn’s baby journal.  I wrote throughout my pregnancy so she’d one day be able to read all my thoughts and wishes on paper.  I made a journal for Tanner and it has all of his milestones up to age two.  In Wrenn’s journal however, the last entry was, “The doctors MUST be wrong!!!!!”  That was written ten days before the results of her genetic diagnosis. And unfortunately, the doctors were so right.  

I’ll admit, I wish I had had the strength to write down everything I was feeling and going through from that moment on but I felt at the time that writing it all down made it REAL and I wasn’t sure I could deal with that just yet.  In fact, when Lisa H and Lisa M first put the blog together on that Friday afternoon when the final test results had come in from California, I wasn’t sure if I could even participate. 

Putting my life on the Internet for all to see at my most vulnerable time seemed horrifying.  I told Lisa M I didn’t think I’d be able to write about anything going on at that moment. She said she’d write all the blog entries as I continued to update her on Wrenn’s progress. So at that point it was out there for all to see.  I couldn’t comprehend my own thoughts and it was barely possible to put them into words.  But she knew I needed the support and said she’d handle everything until I was ready. Finally, in St. Louis, once Wrenn was put on the transplant list, I took the wheel.  Lisa has been a super Godmother to Wrenn and Tanner and I couldn’t ask for anything else from her.  She has been more than a best friend.  She’s the sister I never had.  

(Note from Lisa - Thank you. Naturally this has me in tears.  I love the Parris family - all of you.  You are MY family.)

Over time I found the strength to write longer entries, which included emotional outpours. The feedback I received was so uplifting that I found even more courage to keep going.  I think a lot of it was because we were finally moving forward instead of standing still.  The mystery was over but the timing was still unknown.  In my mind I could finally see the target. 

There were, however, some things that I thought would stay with me for life.  At the Ronald McDonald House I must’ve heard the Children’s Hospital helicopter fly overhead twenty times a day.  My body always tensed up as I prayed they were Wrenn’s new lungs.  Then, it was eerie hearing the helicopter actually deliver her lungs at 5:30am on September 22^nd.  Rumor has it they "traveled far", which in transplant-speak means "from the coast".  Jason, Tanner and I were on the 6^th floor awaiting her surgery and heard the helicopter land.  This one time -- finally -- it was for us.  I can’t even tell you what that moment felt like.  One of her doctors from the NICU retrieved the new lungs. To be honest, I haven’t heard the helicopter since that morning.   

Yesterday I bought Wrenn a new baby journal.  Tomorrow, on her one-year birthday I’ll write the first entry: 

 “Happy Birthday, Miracle Baby.  Find a reason to laugh and smile every single day and you’ll live a long, happy life. Your Guardian Angels will be with you forever!  You are the bravest little person in the world and your journey has just begun.  Always surround yourself with people who love and respect you and are genuine in nature.  Love, Mommy, Daddy and Big Brother Tanner.”

After a year, I’m finally ready to record what happens from here on out, no matter what. And I feel that writing the memories down makes the moments timeless.  Our story or as some might label it, our journey, will never expire. 

Over the last seven months I did made a scrapbook that documents Wrenn’s entire year.  It includes snapshots and various gifts that friends and strangers had given to both Wrenn and Tanner.  It includes all the cards and emails we received as well as photos of the charity golf tournament Lee held for us back in Orlando.  

Over the last year everyone watched Tanner grow from two to three years old.  He’s gone from an only child to big brother status and has also formed quite the following.  But he’s still the same sweet, loving child he was when we left Florida.  One day he’ll understand that he was my comic relief and that he made me smile even on the days I didn’t want to.  His hugs, kisses and snuggling moments kept me focused and refueled me day in and day out.  He made the painful days bearable and I embraced them through his innocence.

So what is the Birthday Girl up to on her big week?  She’s crawling!  Starting to say Mama and Dada and interacting with Tanner by stealing his binky from his mouth.  She acts like a normal baby; soaks up everything she can and seems to love every minute of her second chance at life.  She insists on standing and I’m betting she starts taking her first steps sooner rather than later.  She and Tanner are both very determined children -  thank goodness!

Last Monday, the nurses in Dialysis (where Wrenn gets her monthly infusions to boost her immune system) gave her a balloon, a birthday present and two desserts; chocolate cake and strawberry shortcake.  Wrenn liked the frosting on both very much.  It appears as though she’s going to celebrate all week long and you know what? We’re going to keep on celebrating much longer than that. 

Wrenn had a busy day today!  We were at the hospital this morning at 9AM and went to see a special person; Dr. Barb in the NICU.  She took care of Wrenn the entire month of August.  She’s a special lady and really took good care of us, ALL of us.  She last saw Wrenn when we were in 7 West back in early December.  Things were much better then but when she walked out of the NICU and saw me holding Wrenn this morning, who of course was smiling at the sight of a familiar face, she took a seat to regroup and shed some tears.  It was a sweet reunion and a special birthday gift for all of us.

This afternoon we sang happy birthday and Tanner helped Wrenn open presents.  He was very excited about the cake, which he eyed all day yesterday and I swear his last words before drifting off last night were ‘birthday cake’.  He especially liked Wrenn’s crown, which he tried to place on her small head several times but it didn’t fit, so HE wore it instead.  They both loved playing with the balloons and Wrenn couldn’t stop belly laughing as Tanner threw them in the air, entertaining her for hours.  

 

I never thought this day would come.  A year ago I couldn’t think past the day I was working through.  I also visualized a very different Wrenn back then.  I never expected her to be so bright, alert, feisty, healthy and free of oxygen, tubes and wires.  With what she went through there were very serious risks and somehow she escaped them all.  We are in a very different place than we were one year ago.  In this scenario, I wouldn’t want to go back.  Life-is-perfect!

Everyone Has a Job To Do

Sent by Nicole on April 1, 2011 (and none of it is an April Fool's joke!)

I used to be a nervous flyer.  Thoughts like, "Gee, I hope the mechanic who worked on the wheels was in a good mood today and tightened all the screws," would often run through my head.  Crazy as it seems I’m probably not the only passenger to hope that everybody did their job and did it beyond "okay". 

In the last eleven months, I have met more people than I can count. People from all facets of the health care industry.  My rolodex is ridiculous!   And it gets thicker every week.  In a single day, it’s not unheard of for my phone to ring ten times in a two-hour period.  Those days are always crazy and both children seem to know Mommy is juggling ten things at once and make it even trickier by vying for more attention.  (But that’s kids for ya and being a mom, right!)  If you could live with me for just one day your head would spin.  I deal (work) with so many organizations that my filing cabinet is about to get a sibling.  Luckily, I’m somewhat organized and usually on top of things but without Wrenn’s team of professionals I’d be having meltdowns. 

There are three facilities in the country known for doing infant lung transplants and those in Texas and Missouri are the top two.  (Meaning they’ve done the most).  If you have to have a transplant, you really can’t go wrong with either one, and what I can tell you is that here in St. Louis, the people working on the wheels of the plane go WAY beyond their job.  I know I’ve mentioned before how Wrenn has a team of professionals comprised of nurses, doctors, surgeons, social workers, a genetic scientist, financial coordinators, healthcare representatives and a dietician.  (I’m sure I’ve forgotten somebody, sorry).  But how they keep me and Wrenn’s information all straight amazes me daily. 

The thing is, Wrenn’s transplant team is now her, and our, extended family.  We will see them, forever.  We will phone them, as I’ve been told time and time again, NOT ENOUGH.  We will continue to visit them several times a year, for as long as she lives.  She will never go under the radar where St. Louis is concerned.  And I tell you this, because for everything we as a family have gone through, we NEED them.  I would seriously be nuts if it weren’t for the wonderful transplant coordinators who keep it all straight; faxing in her prescriptions, not to Walgreens but to specialty pharmacies who are approved to handle her special rejection drugs that are made with specific instructions. The transplant coordinators keep all her records up to date with the pediatrician; everything she has or is going through - the pediatrician is informed of the situation.  They also know if she’s gaining weight and thriving developmentally.  If Wrenn’s lacking in any area, they let me know what needs to be done and instantly we are enrolled in a program to get her caught up.  

I can’t tell you how perfect these folks are and if you were lucky enough to work with them, you would completely agree.  At check-ups for any reason, there’s no rushing us out the door.  Every word is heard.  Every issue is examined.  Every question is answered and any issues with outside parties are fought, with their help!  If there’s an issue they can take care of to make my life easier, they help in any way possible.  They constantly tell me how good of a job we’re doing and that we will mess up and it WILL be okay.  What amazes me is that if there’s an issue at midnight, everybody on the team knows about it at midnight.  They all know what’s going on and although I feel bad about that 3am phone call, they sleep better knowing that everybody’s on the same page with Wrenn’s issues.  (And so do I).  I can’t tell you how comforting it is to know how in-tune everybody is with our daughter’s well-being.  I am impressed every day and no matter how many times I talk about them, you can’t possibly grasp HOW good they have been to us unless you’ve lived in our shoes for the last year.  My point is, I’m so thankful for everything at this moment in time and my friends will tell you, I’ve always appreciate everything I’ve been given or earned in my life.  Wrenn is just as important to them as she is us, and we all want her to beat the odds.

I guess when I saw Wrenn’s transplant surgeon last Monday he brought it all back.  This man, this fantastic surgeon gave my daughter a chance at living a normal life.  It was the first time he had seen Wrenn since she was discharged in mid-December.  He’s not a man of many words but he’s always upbeat and positive and has a great sense of humor; amazing considering he never sleeps.  He loves his job and is always ready for the next procedure and somehow does it beyond his human ability.

On Monday Wrenn had a chest x-ray before having her broviac removed.  During the procedure they had an ecocardiograhm monitor things incase she bled out.  It’s usually a pretty easy item to remove but it’s Wrenn; so everybody’s prepared.  She always keeps them on their toes.  

Wrenn was pretty upset when she came to.  She hadn’t eaten since the night before and had an IV running through her wrist.  She also experienced terrible gas that needed to be vented through her G-tube.  I’m not sure why but procedures that put her under always upset her digestive system, sometimes for a few days.  (It’s a mystery as to why but now I know, and am better prepared afterwards). So now it's out - and here is part of it.

Not having the broviac is wonderful.  She even seems to have a bit more kick and smiles and moves around like a little champ.  She’s starting to lay against my chest and fall asleep; something she hasn’t done since we were in the NICU in Florida.  I think the broviac kept her from doing that and now she has no restraints. I don’t miss telling her to leave it alone 20 times a day either.  The constant stress and maintenance is gone forever. The only piece of plastic left on Wrenn is the G-tube.  As soon as she’s a perfect eater I’m going to teach her how to take medications by mouth and then that item will be removed, too.  Oh, here is the last bottle of breast milk Wrenn will enjoy.  She is now going on soy formula.

Wrenn is getting so strong.  She’s no longer crawling like a wounded soldier.  I think the therapist called it ‘combat’ crawl.  I feel she’ll walk pretty soon after she perfects crawling. 

She’s such a ham; loves the camera, likes looking in the mirror and giggles without anybody cuing her.  She grabs at everything and continues to watch Tanner 24/7. 

Her hair is coming in thick and she loves eating by mouth.  I’m feeding every hour is seems like and in the last check-up with the nurse she’s gained weight. As of Thursday she’s 7.33 kilos ( 16.1 pounds) and 27 inches long.  She loves music and moves to the beat with her body, wiggling back and forth with a big smile on her face.  

Tanner gives Wrenn toys and then she drops them and he gives them back to her again. He doesn’t understand why she keeps dropping them.  It’s funny to watch the two interact. Once she’s walking his world will really be interesting.  As a nosy little sister she’s going to drive him crazy following his every move. 

Wrenn no longer has defensive hands with me.  She takes my hands, pats me and smiles.  She allows me to pull, touch and caress her hands without feeling threatened; definitely a positive change in her ability to trust.  So I now worry about monthly labs.  Every time we have blood drawn we can’t access the broviac anymore.  They have to stick her each time and baby’s veins often break down because of their size.  If she’s stuck too many times and has no more available veins she’ll have to get an under the skin port.  The reason she didn’t get one this time is because there’s a risk of infection; being a foreign object in the body.  Not good for transplant people. 

Her next bronc is scheduled for early June along with her nine month tests.  She is still getting monthly infusions (next one is mid-April).  The infusion will be different this time since she doesn’t have the broviac.  This is the day the nurse will draw all her monthly labs.  It’ll probably be harder for me to watch than it will be for her to go through but it’s necessary to keep her medications accurate with blood levels. 

Today she received a Synagis (RSV) shot and then in a few weeks she’ll receive another round of immunizations.  It’s vitally important that she be kept up with all health needs.  Like I said before, the transplant team keeps me organized and therefore sane.  So far, they haven’t missed a beat!  

The Big Week Ahead

Sent by Nicole Sunday 3/13

            Wrenn’s six month tests are Monday and Tuesday.  I told one of her transplant nurses on Thursday that I’m going to look at her evaluation as a ‘tell me how great my daughter is doing’ type of attitude.  I think it’s easy to say that these tests are done to ‘catch’ the bad (rejection and/or infection), but this is a very gloomy way to go in to a situation that I once again have no control over.  Anything less than a positive attitude isn’t fair to Wrenn or our family. 

Wrenn lives every minute of everyday with such a sweet innocence.  She enjoys exploring toys, craves and loves attention, cries for her meals and smiles and laughs more times than I ever would have imagined.  She can’t possibly understand why I look at her sometimes with tearful eyes that express great concern and sadness.  She doesn’t know how each test brings on new information and sometimes it won’t be information I want to hear or want to have to deal with.  I wonder every day if I will get better at this as time goes on. What part is going to get easier and are all the hard days behind us? 

           

            I’ve noticed the closer we got to Monday, the more Jason and I talked about the ‘what if’s’.  And I hate that.  It’s then that I run to Wrenn’s crib, place my hands on her little body and say the prayers I’ve said countless times but with more conviction.  I look at how great she looks and in the back of my mind I remember the doctors telling me that she won’t necessarily show any symptoms of rejection.  Rejection can be silent.  Like a spider.  I hate spiders.  I like warning. I like to know what I’m up against.  I want a little bit of time to get out my gloves and smash the evilness down if I feel I’m going to be bitten.  I’m a mom and I want to make it all okay.  ALWAYS!

Over the last few weeks one rejection drug has gone up and up and up in dosage.  I worry that with such low blood levels she’s in danger of rejection.  I think back to the manual and remember how important it is to balance her immune system.  I’ve done several labs over the last few weeks and just hope the medications have done their job well enough.

Wrenn had her 6 month checkup with Rebecca, the therapist at Children’s Hospital yesterday. She was amazed how strong Wrenn had gotten since their last session back in early February.  Since then, Wrenn has been free of narcotics, only takes one dose of lasiks and is standing with assistance.  It’s awesome seeing everybody’s face light up when Wrenn shows off, especially since so many of the ‘best’ were worried that she wasn’t going to get there. Wrenn had many people quite worried during her bumpy recovery.  She continues to be a mystery (like with the rejection levels spiking) but all in all she’s found her spot in this world.  And if there’s one thing I can tell you it’s that my daughter is NOT going to sit on a bench.  She is nosey!  She wants to RUN! And she is going to live a full life and see and do everything possible.  She has such a strong spirit and there’s no way I’m going to hold her back while she explores the world.  With caution, we will support her as much as possible to live a somewhat ‘normal’ life.  

            It hasn’t been easy living in a new city.  Our families are very far away and so that leaves little in the way of going out as a couple.  We take turns on the weekends seeing movies and order in, just to get a break from cooking and cleaning.  I had one local friend from Richmond volunteer to take the kids for a night so we could have a date.  I’m sure we will find the perfect night and take her up on that offer, especially since she’s an RN, which is wonderful since she will feel comfortable with Wrenn’s G-tube and unique lifestyle of staying as germ free as possible.  What a nice gift she has given us.   

Despite how hard and uncertain things are, the people at Children’s made certain to surround us with an array of support.  I have one volunteer, Amanda, who is finishing up her masters in psychology to be a family counselor.  She receives internship hours for helping us out but trust me, she doesn’t realize how valuable she has been to our family.  She is my right arm and is wonderful with the kids.  I feel so blessed that she was assigned to our family.  We will miss her when she leaves for Colorado in late May.  There’s no way we can replace her!

             Our nurse, Deanna, comes to the apartment once a week to weigh Wrenn, checks her vitals and sometimes help me with the monthly labs.  I like that she takes another look at Wrenn and answers my questions in-between clinic appointments. When Wrenn gets her new port for blood draws, Deanna will continue to help out. Deanna and Amanda came from an organization called WINGS, and from what I’ve been told, we are the first transplant family to try them out.  I think God knew I could do this but would need an extra pair of eyes and hands to do so. I’m very thankful for this service.

                       

            I walked by Wrenn’s crib yesterday morning and she was chewing on her binky, rolling all over the place and then five minutes later she was sitting up and had a big grin on her face.  I couldn’t believe it!  She also gets on all fours and rocks back and forth, which is one step closer to crawling.  I’m gonna be in big trouble very soon. 

            The other night Tanner was tossing something over his head again and again and Wrenn couldn’t stop belly laughing.  Luckily, I got it all on video.  Any rainy days will be sunny after watching that video.  It truly makes everything else in the world so unimportant. 

            On Monday morning we’ll have the monthly labs back.  This information will tell us if there are any issues and what we might expect from the bronc on Tuesday morning.  By the end of the next week we should have all the results.  On Wednesday Wrenn has her monthly infusion to boost her immune system. Please send us your prayers especially to little Wrenn, who has a very big week ahead of her. 

Peas, Blueberries, Chicken Soup, and the Unknown

Sent by Nicole late on 2/27/11

What do peas, blueberries and chicken noodle soup all have in common? Wrenn loves them more than squash or green beans. She has done another 180 degree tyrb and I just can’t explain how or why but apparently God heard me every time I connected her G-tube button to the feeding bag; “Please make this child love food and start eating,” I would chant.

Last week Wrenn made great strides and is now eating every two hours. It appears as though the breast milk is being absorbed quickly and that leaves Wrenn with a hearty appetite in between G-tube feeds. On average she eats 4 -5 jars of baby food a day and hasn’t had any issues. She doesn’t gag, has little to no gas, and quivers her lip if I take it away too soon. I’ve been showing her sign language in the hopes that she’ll communicate like Tanner did before he started talking.

The OT specialist was shocked when she worked with Wrenn last Friday. And of course, I’m always amazed week to week. Wrenn even munched on a Ritz cracker and did fine.

With such absorption, we are increasing her rejection medications quite a bit. The transplant coordinator told me it’s not unusual to be on twice the normal amount when a diet has drastically changed like Wrenn’s has with solid food. Once we run out of breast milk she will be on Ensure and so the digestive tract will again change along with the levels.

Wrenn is still not sucking but the therapist thinks she’s VERY close. That will be a huge day of celebration for us!

We chose to do the transplant so Wrenn would live as normal a life as possible. No cords, no plastic contraptions, basically no strings attached; that includes the G-button, which is GREAT to have while learning to eat but I want her to be all baby.

I asked the transplant nurse what she suggested about how Wrenn should take her medications once she is sucking and eating like a pro. She suggested that Wrenn take her medications by mouth as soon as possible so she gets used to the icky taste. Food and medications are absorbed differently when given by mouth as opposed to the G-tube and so it’s going to be a couple of months before she can take all of her medications twice a day. Once Wrenn proves she can eat, gain weight and swallow medications without any problems, the G-tube is history.

Right now we are down to eight medications in the morning and three medications at night. We have just three plastic cups holding the medications and I can draw them up in my sleep. Tanner is very helpful at pushing her medications through the G-tube line and is interacting with Wrenn more and more every day. He tickles her and even says, “No Wrenn” when she starts pulling on her cords. I love when they sit together and play. Everything seems normal and perfect. I want it to be perfect forever. Those are the times I ask for a guarantee. The sweet moments scare me because soon after, I feel this awful gut wrenching punch of the unknown and then I feel complete sadness. It’s so hard not going there and it will always be near the front of my mind. How could it not!

Wrenn is getting stronger in her trunk and can just about pull herself to a sitting position. I feel once she masters this developmental milestone she will be crawling very soon. The other thing she started doing last week is putting weight on her feet and even stands like a big girl for a second or two (with help of course!) All things she wasn’t doing a week ago.

Wrenn’s upcoming profusion test, X-ray, bronc, monthly infusion, CT scan, eco and labs are scheduled for March 14^th and 15^th. As soon as those results come back the team will determine when to take out the broviac and surgically insert the port.

A Plea for Emily

Can Wrenn's friends please do me a favor? There is a girl named Emily Wilson.

Emily was diagnosed with Ewings Sarcoma of the skull/brain in Feb. 2009 when she was just 10 years old. After 2 brain surgeries, 14 rounds of chemotherapy, and 6 weeks of proton beam radiation, she enjoyed one year of remission. She was recently diagnosed with a recurrence. We pray for strength, courage and healing for Emily. If you can donate, please do so here:

http://www.emilywilson.myevent.com/

And even if you cannot give, please learn about Emily and like her Facebook Causes page to help spread the word:

Emily Wilson: Strong and Courageous

Thank you so much!