N Parris's Blog

Sent by Nicole on June 20, 2015
We took the advice of the transplant team: “Go and live your lives!” 


And that’s what we’ve been doing—finally, this year, putting down roots, making short and long term plans for our family; something I never thought possible five years ago.  


The truth is, the transplant team prepared us for the worst, not the best.  There’s always a dark cloud hanging overhead so I keep my umbrella close, just in case it rains buckets instead of a light London mist.  
“Five,” the transplant team told us, was the magic number—“Get to five, and Wrenn will have a good chance of reaching age ten.”  
One milestone met—many more to go! 


With staggering statistics lurking in the back of my mind it’s difficult to think about anything but the present, and so I have learned how to live day by day, having no expectations but gripping faith, and hope, and thanking God for all our blessings—of which we have many!
I never knew if we’d survive the nine tough months in the hospital watching Wrenn nearly die, then receive new donor lungs only to watch her agonize through an extremely tough recovery in the CICU for three additional months.  Her oxygen saturations were in the 30’s and 40’s for too long for her to be neurologically perfect and yet she is—smart, funny, witty, competitive, and right on target with normal development.  How, I asked, is that possible!
“She is a true miracle,” said the transplant coordinator at our last checkup in St. Louis June 14th.  “I’ve never heard lungs sound so good,” she added, making me feel both pleased but afraid of this statement. 







On September 22, Wrenn will be 5 years post transplant.  It feels like yesterday when the helicopter landed on the roof at 5:30 in the morning with a new set of lungs. 
Many followed our journey since the day she was born at Winnie Palmer Hospital in Orlando, Florida 2010.  Oddly enough, after a u-turn in St. Louis for fifteen months, then to Virginia for two years, we have relocated back to the scene of the crime, Florida.  Fate took us all over the map but angels remain close, keeping Wrenn and Tanner healthy, while they blossom into amazing little people.  
I often tell people, I don’t play the lottery because I know we’ve already won—many times.  




On April 14th, 2015, Wrenn Elise turned five, celebrating with a big swimming party in our neighborhood.  Her favorite part wasn’t the Olaf cake! Nope, just being with her friends and a balloon guy who told stories and juggled like a clown. God parents Lisa and Brian Macon attended, as well as new friends, and then some older familiar ones like Dr. Hardy (her NICU doctor at Winnie) and Perri, (her respiratory specialist at Winnie).  Life long friends who know we give her the best life possible and understand that some days are hard for us, even when everything is perfect, the unknown is a lot like walking a tight rope.


Wrenn is easy to describe—beautiful, fiery, feisty, fun, playful, competitive, eager, excited, giddy, graceful, energetic, ambitious, sneaky, silly, creative, artistic, empathetic, gentle, and blessed.  Pretty much perfect!
I’ve never seen a child so wiling to try anything and everything as if limitations didn’t exist in achieving her goals. What is she afraid of, you ask?  She hates the rain and thunder and lightning, instantly snuggling as tears trickle down her plump cheeks. 
She does everything to her best ability to please others as well as herself.  She loves life! Almost like she knows she is special.  She wakes up happy and goes to bed happy.  She is a social butterfly, craving friends and attention always!  
Wrenn recently performed in a ballet recital, dancing with her class on a stage to the song ‘Part of Your World’ from The Little Mermaid.  She glowed each and every time she danced but on stage she was at home—a true ballerina.  She performed every single move with grace to perfection—friends and family couldn’t hold a dry eye. 



Wrenn has many friends, attends playdates, swims, rides rollercoasters, takes dance and gymnastics, and loves having her best buddy Ava sleep over—something I never thought possible. They sing Karaoke, watch movies and play make believe in her kitchen. 
As always there’s a process in keeping germs at bay but our friends are so good at sanitizing, washing their hands and watching symptoms to make this all possible for both my children. Living with one foot out of the bubble makes life feel normal—our new normal, that is.
With the aid of a mask Wrenn frequents Disney World and the water parks, Trick or Treats, attends concerts, enjoys parades, goes to dinner (mainly where there’s a balloon guy), loves group functions at the library, rides her bike and scooter fast, plays with chalk on the sidewalk and loves delivering mail and homemade projects to her friends. 
Wrenn’s very special friend is big brother Tanner, now seven years old. He’s no longer into Toy Story or Buzz Light Year but an aspiring rock star/musician, architect, and heart surgeon.  I guess all those days in the hospital sunk in—he has mastered the human body and I mean literally—he’s extremely bright and tells me all the time that first grade is beneath him. 


I have been homeschooling Tanner for the last two years.  He’s entering second grade this fall.  His strength is science, history, and math but dislikes reading, writing and sitting—all typical of a seven year old I’m told!  He loves being on a bowling league with Wrenn and takes big boy gymnastics class once a week to get out his burst of energy. He’ll be taking Karate this fall.  
Tanner is a sweet boy but that long year in the hospital (and even the year after, where we all went through an adjustment period) took a toll on his early development.  We have been catching our tail still but feel we are finally getting him settled into a good circle that includes weekly speech, language and occupational therapy conducted by the local elementary school here in our town.  Putting Tanner on a dairy and gluten free diet made all the difference in the world for focus issues, enabling the school counselors to determine his underlying needs.  He is trying new foods (finally) and improving daily.  He’s an amazingly strong little boy and very protective of Wrenn.  
Wrenn will be starting kindergarten this fall, qualifying for hospital homebound where a teacher from the local elementary school will come to our home and teach her during the weekdays between two and five hours a week. We are part of a large homeschool group here in our town where the kids do five or more field trips a month, including musicals, play ground time, sports, historical events, etc.  If you ask me, they have the life! 
Wrenn’s check up last Monday went very well. This was the first time she did not need sedation for any testing.  It was scary having her try the VQ test at five years old but there comes a point where you have to bite the bullet and try! She has been sedated about fifty-five times since being born. After a while you forget the risks because she always does so well being under, but still there are risks! The transplant team said from this test forward she will not be sedated for any other tests. Another milestone!





Wrenn’s checkups are every six months in St. Louis for life.  She has the following tests done each visit:  Bone density, labs, one therapy session, chest x-ray, CT scan, VQ, echo, pulmonary function test (PFT’s), and clinic with CDC doctor and pulmonary.  Our Monday starts at 7am and ends around 2pm. (Used to be 4pm) I’m hoping she can eat and drink during our next visit since she’s sedation free. 
We have flown for three checkups and all went very well.  We are away from home for only 24 hours and I’m not complaining.  An eighteen hour drive is way more exhausting and time consuming for a family of four who needs to stay away from hospitals and germ ridden hotels.  I fly with Wrenn and that makes it easy to go from test to test and keep to a tight schedule.  She is such a brave girl, I was very proud of her this visit for trying the VQ and succeeding, enabling us to catch the early flight home! 
I want to thank each and every follower for your patience, emails, posts, continued wishes and prayers, which work!  Our family could not have survived these years without your support and this blog.  And a special thanks to Lisa M and Lisa L for starting and maintaining this blog.  You guys have been my rock! XOXO
(Lisa M and Lisa L want Nikki to know that she is amazing and we love her.)

Sent by Nicole 8/25/13

I apologize for my posts being so spaced out.  I know from the multiple emails I receive that many supporters continue to pray for our family and I know all too well how updates are comforting to read, especially when there’s good news to report. 
The reason for my lack of postings-- I’m superstitious and so putting things in writing makes me nervous and I’ll leave it at that!
We received wonderful reviews at Wrenn’s last visit in St. Louis on April 1st.  This blessing made her 3rd birthday (April 14th) even more special.  I really wanted to do something amazing for my little girl and with the help of my wonderful friend Trina, Wrenn, Tanner and cousin Tyson enjoyed pony rides on an adorable six-year-old pony named Buttercup in our backyard.  Wrenn wanted an Elmo theme and requested tons of balloons.  Our immediate family was present and we enjoyed watching our little princess celebrate her big day.

In early March, Wrenn was again having some GI issues and so the St. Louis doctors ordered several bowel tests. We finally figured out her issue, and just in time, because she had a few more prolapsed rectums and I thought--I cannot go through this again!
Apparently, Wrenn can’t digest high fructose corn syrup and is also lactose intolerant.  Once I made these dietary changes (which stunk, because the kid loves food in general and tries everything), she was a different child--no more gas pain, bloating, excessive bowl movements on a daily basis and overall a much happier kid.  I was surprised that certain fruits and veggies (such as tomatoes, cucumbers, grapes and watermelon) were bad for her--I always figured healthy foods were good for everybody.  After three long years the mystery has been solved and thank goodness our GI team in St. Louis figured it out!

Wrenn’s most exciting news this summer is that she’s starting to take her medications (they taste horrible) by mouth.  Now that she’s eating well on her own (drinking is questionable--it varies weekly), we are hoping she can get her G Button removed within the next six months.  If given the option I’ll probably have it removed after flu season--just in case. 
Wrenn has speech therapy but for only 30 minutes a week now, which is so short I’m not even sure it’s productive.  If nothing else, I find out what we need to work on and I’m the therapist.  (As long as I’m not pushing back in rectums, I can handle this easy task).  I’ve introduced flash cards to Wrenn and we do them twice a day.  Wrenn has typical problems that most preemies have, which is tightness in the lips and cheeks from not learning how to suck at the appropriate time.  She often repeats only part of a word--cutting off the beginning in most cases. Her communication has always been outstanding and so we’ve never had a difficult time understanding her desires. I know with time and practice she’ll be getting A’s. J
This past April Wrenn participated in a gymnastics class with ten other kids around her age, including Tanner. She loved it!  It was her first organized sport and she was the most energetic and eager one in class--always up for a new task, doing the best that she could and even through her mask we could all see her eyes light up with excitement and joy.  I had tears in my eyes watching. Although, as I finally witness a taste of normalcy something happened to bring me back to reality and I’m reminded to be cautious with where we put ourselves daily.  We were in the very last gymnastics class this past month and a mom at the water fountain mentioned that her kids were cranky from getting shots that morning.  I of course asked what shots they had received and as soon as she told me about the MMR (Mumps, Measles & Rubella), I grabbed the kids, their shoes, my purse and we ran out of there as if the building were on fire.  Wrenn cannot be around a person who has just been given a live virus (this would include the flu mist) or she could easily catch the virus, which would be VERY bad. I cried the entire way home in fear that Wrenn would get sick, even though she had a mask on and had had minimal contact with the two kids.  Prior to starting gymnastics I had told all the parents about our tender situation but shots weren’t on my mind and so in many ways I felt as if I had failed her--by putting her life in danger.  Luckily she was fine. No harm was done--this time.  What made me very sad was that it was the last day of class and they were to receive their gold medals with a small ceremony as if they were at the Olympics, which I was so looking forward to seeing and of course snapping photos of both kids. For a split second I thought about asking the owner if we could go back and recreate the moment but it wouldn’t be the same.  Instead we’ll remember how we were handed the medals as we ran from the building--my last memory of the event was sheer fear.



Through my conversations with others I’m realizing more and more that most people like to stick to structure and books with strict timelines.  With Wrenn’s immune suppression and Tanner’s lack of social exposure we have decided for this first year to home school Tanner for Kindergarten.  We’ll re-evaluate the situation in a year and see where our comfort level is during the summer.  At this moment he’d be attending a school with thirty other kids and according to our pediatrician, on average, five year olds are sick between 10 and 12 times within that first year of attendance.  First grade seems to be almost as bad for illnesses but things improve in second grade, which is where we feel we might begin public school for Tanner.  We feel by then he’ll understand the germ aspect and importance of following the rules for our family’s situation.  As always the plan is--there is no plan.  We make decisions based on the moment and believe in our choices without regret.
It’s been interesting actually, as soon as someone hears we plan on homeschooling they immediately freak out.  What if he’s not up to speed?  He has to attend school at some point!! You’ll have to find a group to join so he can have socialization!! The list goes on and on.  It’s overwhelming to think about how I would possibly control every single aspect of my son’s education and then while we’re talking about it--why don’t we decide what college he’s going to attend thirteen years from now. GEESH!  These worries tell me that people still don’t grasp our situation or our decisions and how we make them.  We feel we have a very good understanding about what’s really important in life.  The majority of kids who don’t speak until they’re three do learn to speak and then don’t stop talking.  Some kids speak at two and then regress because they’ve learned something else really cool. All facts from some of the specialists I’ve worked with over the last 5.5 years.  I’ve discovered that kids learn at different levels and within their own time period and you can’t rush it or make it happen simply because it’s what’s in a book that says what should happen.  No matter what, things always work out the way they are supposed to and freaking out about everything that may or may not happen doesn’t really get the job done.  If Tanner needs a tutor, he’ll get one.  We plan to keep him in social activities year round and so far he’s turned out to be a very sweet boy and a loving big brother who often says out of nowhere, “I love you Wrenn.”   Either way, Tanner will be fine--bottom line for this mommy--I pick my battles and worrying about school isn’t one of them.  I’m very capable of teaching my kid Kindergarten and I know Wrenn’s going to be right there beside him learning everything she can.
Believe me; deciding to home school hasn’t been so black and white for us. I took baby steps this last year and put Tanner in karate from September to September, which took place two to three hours a week.  I was so proud of myself for sticking it out during flu season considering it was a very BAD one but I know how important it is for him to get that type of interaction with kids his own age. He also attended gymnastics a few months prior to Wrenn joining his class.  In some ways I feel school would be so great for him and then when I have something like the live virus shot happen I think how bad I freaked out and worry I’ll be losing so much sleep and would be stressed all the time, which could seriously throw me over the cliff. If Tanner were already in school it would be different but the fact that he’s never attended means he has no idea what he’s missing.  In our case he’s missing out on a ton of germs and I’d really like for Wrenn to have two more years under her belt so she can continue to strengthen her immune system.  According to the St. Louis transplant team 50% of those transplanted make it to five and 20% make it to ten--getting to that five year mark is huge and our goal although, I’m hoping to steal several decades with God’s support.
Germs are everywhere and we do a pretty good job at staying healthy, however, we’re not perfect. There are risks when we drive to St. Louis every six months and this past April we had the shock of our lives--Three days after we returned to Virginia, Wrenn was diagnosed with strep throat.  I was suspicious that Tanner had something going on and when we took them both to the pediatrician (only 3 days after being back from St. Louis where she had a clean bill of health), Wrenn’s culture was positive for strep.  Tanner's was negative and the rest of us had negative cultures as well.  I guess it’s hard to be in a hospital for two days and not catch something.  Staying in three hotels within four days doesn’t help either.  I even wipe down every counter, drawer, faucet, and doorknob but sometimes it’s not fast enough for my little speed demon.  We’re going to figure out a more strategic way to keep her healthy on this next trip (scheduled for mid-September).
Strep was the first infection Wrenn has had (knock on wood) and I (being a superstitious person) worried that things would come in threes, which is why I didn’t update my blog at that point.  I had such great intentions for writing and had it all in my head but couldn’t bring myself to put it down on paper.  By the time I did decide to write we were again dealing with another illness. 
In early July Jason was not feeling very well and then Tanner had congestion and a wet cough. I took Tanner to the pediatrician and the doctor said the virus had to run its course but he went ahead and put Wrenn on an antibiotic to protect her lungs from a possible secondary infection. A week later both kids sounded horrible--coughed all night, Tanner begged for medication (a rare thing) and then Wrenn woke up one morning and seemed lethargic, which wasn’t like her at all.  I also noticed a strange rash all over her body.  This alarmed me and so we again went back to the pediatrician for more swabs and waited while the doctor had a conference with the transplant team on what to do.  Tanner’s lungs were a mess (bronchitis) and the doctor said that at the moment Wrenn’s were clear but would soon head in that direction.  The team decided on a Z-pack (antibiotic) for five days and within 24 hours both kids had finally stopped coughing and were on their way to recovery.  This was the first time Wrenn had developed anything close to a cold and I was on pins and needles with every cough and sniffle.  I checked her oxygen saturations every couple of hours, checked for fevers, and what was most on my mind was thinking that there was no way I could put these kids in school and do this ten times a year--maybe some families could handle it but I would be a mess 24/7!!! July was the month I decided I had to for sure home school Tanner.  This summer bug was very hard and stressful and we were lucky that Wrenn took that nasty sickness so well.  The pulmonary doctor in Richmond said that she was extremely lucky because many of his patients in her situation get mucus in their lungs that result in a need for oxygen, and many end up hospitalized.  I feel we dodged two bullets this summer and I don’t want there to be a third one. Ultimately the way the transplant team explained sickness to us is that some kids gets sick and do very well and life goes on but for others it is too hard on their bodies and the result is tragic.  I don’t want to test drive that path and so we continue to be smart in where we put ourselves and how we handle social situations by educating our friends (new and current) and staying in a comfort zone.
Heading to St. Louis this September I will be very cautious and I plan to keep Wrenn pretty isolated on our travels but will remind myself that I did everything in my power this spring/summer and yet she still ended up sick twice.  It’s good for her to be exposed to bad germs once in a while so her body can fight them and she can continue to build a good immune system.  The transplant team will have her IGG levels checked this September, which has to do with how her body builds up her own antibodies--the results tell us if she’s got a strong or weak immune system. 
With our upcoming visit to St. Louis, Wrenn will be doing Big Girl Pulmonary Function Tests where she blows into a tube to show off her lung capacity.  In order for her to prepare I have her blow a cotton ball across the table several times a week and then blow noise makers and she holds them out for a count of five.  For Wrenn it’s all very fun and exciting as if it’s a game.  She loves learning new things and so it’s not really work.  Wrenn’s an overachiever, of course.
Wrenn as I have said before is a firecracker, a sweetheart, is independent, stubborn, but full of life, love and a good prankster.  She loves being outside and has been able to spend a lot of time playing with our neighbors this summer--blowing and chasing bubbles, riding her scooter, bike, drawing on the sidewalk with chalk, tossing water balloons at other kids and giggling to the point where mommy loves hearing her belly laugh.  The fact that she’s doing all of this next to her brother is the best gift ever.  With home schooling I feel fortunate that Tanner and Wrenn will continue to bond and also have the next year to play together and make more memories.  When Tanner is at a movie or karate, Wrenn really misses her best friend and asks when he’s coming back. Watching them play and scheme together is amazing.  Hearing the two carry on a conversation in the backseat of the car is hilarious.  I never realized how great this part of having kids would be but it makes my day as we run errands or head to doctor appointments.  I’ve literally been there for every single day and that’s a true gift I never want to end!  
    
Our summer days were filled with such love from our nanny Chelsea.  She has brought so much to our family and over the last two years she has seen both kids blossom into their adorable little personalities.  Chelsea left us this last week so she could finish her last semester at Virginia Tech and will attend nursing school where she plans to become a NICU nurse.  You can see that her fitting into our family was innate.  We love her so much and already miss her more than you know.  She is newly engaged and asked if Wrenn could be one of her flower girls--that will be so fun for all of us to watch and share in Chelsea’s special day.  We have also adopted Chelsea’s fiancé Matthew, who we all adore and hope to get to know much better.  We can’t say enough about these two individuals and are very excited to continue our special relationship in the years to come.

We belong to an organization that has been a true blessing to us these past two years called Noah’s Children, which is the oldest (going on 16 YEARS), palliative care group in the country. They provide services of support to families who want/need access to a chaplain, nurses and doctors who come to the home at any time of the day or night. They provide financial assistance if needed, as well as a social worker and volunteers for a variety of purposes.  I had only worked a little bit with the palliative care group in St. Louis but while living in Richmond I really felt the full effect of what this type of an organization does on a daily basis. 
Noah’s Children was started by a wonderful pediatrician here in Richmond and it grew to new heights over the years and now has the full support of St. Mary’s Hospital.  Most people don’t realize how amazing this type of group can be until they need it.  It's always wonderful to see the great number of people who will turn out for a 5Kto raise money to help find cures, but this organization raises money all year round to help those parents and siblings who will be left behind.  These amazing individuals hold a special place in my heart for their support and I know one day I’ll be giving back in some way to ensure that they stay around and continue to grow. Each February Noah’s Children holds a silent auction gala at the Jefferson Hotel, which we attended this past year.  It was humbling to see the folks who came out to not only enjoy a great night of dancing and live music but also to participate in the auction so that these heroes can continue to help others.
A few months ago I wrote a thank you letter to the donor family who gave Wrenn the gift of life. It was a letter I had thought about for three years and had promised myself I’d write within a year of Wrenn receiving her new lungs.  Every time I went to write the letter I couldn’t put down one word, one sentence, or one thought. For whatever reason the timing wasn’t right--too close to Christmas, too close to school starting, too close to when she received lungs--I had more excuses but the intent never failed.  This past March I sat down at my kitchen table and within one hour had written that thank you letter and it felt as if every word landed on the page as though I had written the letter a hundred times.  I guess in many ways you always think of what you would say to a mom who had lost her child and gave the gift of life to another but how in the world to start such a letter……
I know if I had lost my child and donated and organ I would want to hear from the other family.  I’m not sure I’d ever write back but it would give me peace of mind in knowing that in some way life had gone on.  I allowed just one person (a chaplain I had never met in person who had come into my life by chance and happened to work with a donor organization) to read my letter before sending it out.  I wanted to make sure my message was clear, thoughtful, and respectful. He assured me that I need not change one word and that I had written a letter that truly came from the heart.  It was a letter I had to write and I’m hoping it gave some peace to the family that undoubtedly continues to heal from a terrible loss.   
I never lose sight of what’s really important in life--the fact that we’re all healthy, under the same roof each night and are together. No matter where we might be, it's all that matters.  Anything else takes a back seat to those three ingredients and so when people get bent out of shape that we’re not coloring within the lines I just smile and say with a shrug, ‘it’ll all work out and with the angels watching over our family--it always does.’        
 

Submitted by Nicole on 10/12/12


 As we drove past the Bush Baseball Stadium in St. Louis, Missouri, Sunday afternoon I recalled the time I attended a game on one Sunday in early September—Wrenn’s worst day—the day she had oxygen saturations in the 30’s and 40’s—the day she was put on the paralytic (two weeks prior to receiving her new lungs).  It was a day where the sibling playroom at Children’s was closed because of a holiday weekend and Tanner had to stay with us in the NICU—a task he hated and made sure everybody around the vicinity knew it. How did we deal with a sibling who was miserable and another one who was near death?  We made the difficult decision to walk away from the hospital for a few hours and let the people we had entrusted with Wrenn to do their jobs.

I looked at Dr. Hoft with tears in my eyes and said, “I don’t know what to do—please tell me what I should do.”  Tanner was screaming and throwing a fit and we were literally all sitting on the floor in the hallway of the NICU because Wrenn couldn’t stand any noise or people in her room.  Moments prior to speaking with Dr. Hoft I had entered Wrenn’s room and let her know that mommy was there and held her hand; her saturations dove from 60 to 30 FAST.  I wasn’t helping and I couldn’t bear to be the cause of her decline.  Holding Wrenn’s hand and being with her wasn’t even an option at that point.  I was completely helpless and it was the worst feeling in the world.

Dr. Hoft looked at me and replied, “If you can’t stand to watch her take however long to come back up to normal saturations, don’t stay.  You can call us as much as you want to check on her.  It’s okay to go—nobody’s going to judge you.  Whatever keeps you calm and sane right now is what you need to do.” 

Feeling empty and sad I nodded and decided to I had to do what was best at the moment.  So I did.  We did.  We left.  Nothing at that moment felt right or wrong—the sensation—I was numb.

The Ronald McDonald house had given us advance tickets to a Cardinals baseball game and we had planned on going that afternoon as long as Wrenn was doing okay.  I didn’t realize I’d be going as a zombie.  I don’t recall the team they played, or who won or lost.  My body was there but my mind was with Wrenn.  It was almost as if I were in two places at the same time.  It was the best I could do at the moment—praying, hoping and believing that it would all be okay.  We didn’t get to the game on time and we didn’t stay to the end.  It was about having something to keep my mind off of watching a monitor for those unknown hours—where we went really didn’t matter.

A couple of hours later we walked back into the NICU and Wrenn was sating at 100 percent. Perfect.  She wasn’t able to move now because of the paralytic but she was stable, breathing steady and pink again—no longer a Smurf! Several doctors and nurses had painfully watched that monitor over the course of those four hours—praying, hoping, believing she’d come back up and finally she did—VERY SLOWLY and I was told the emotion in the room was very somber, very silent and very tense— I felt I had made the right decision leaving.

The next day they performed a brain scan to make sure Wrenn didn’t have any bleed outs from losing so much oxygen to the brain.  Things were so close to going so bad and every day I felt my chest getting tighter and tighter as we waited for the perfect lungs. I don’t know how she passed that test but she was still perfect, I thought, I hoped, I prayed.  Only time would tell and it would be many months later when we’d know for sure if there was damage from those crashes in oxygen to her brain.

A few days ago, on Sunday afternoon, we drove by our old Loft’s in the city and I thought of all the trips in and out of the parking garage we took to the hospital—mostly good visits.  I like to think now when we return to St. Louis we’re just visiting our extended family of specialists—the medical team who helped all of us hold it together and who gave my daughter a fighting chance.

Reflecting is something I like to do to remind myself that merely one day of celebration isn’t really what it’s all about.  I prefer to eat a little piece of cake 364 days a year.  Everyday there’s a wonderful reason to celebrate Wrenn’s life. A reminder that we’re all given a gift each day we breathe in air.

This check-up was Wrenn’s TWO year post-transplant visit.  Two years ago, on that one horrible day, I never knew I’d be smiling on the way home from such a great visit with the transplant team.  As a positive person I had hoped to see only good things for Wrenn’s future but we were prepped early on to realize that it’s all a gamble.  I’m glad Lady Luck’s on our side and I truly hope she never leaves.

Monday morning in St. Louis was a busy day for Wrenn.  The lab tech took blood from three veins and filled more tubes than I’d ever seen in history—even the lab tech said Wrenn was getting a lot of tests done at one time. I knew that Wrenn looked great, had been acting great, sounded great lung wise and appeared to be super in every aspect of her being, but still, I worry the rug might be pulled from underneath of us at any given moment.

We had our first appointment with GI.  They were very happy that Wrenn had gained three pounds since April.  They asked me to submit a diary of her food and drink intake to make sure she’s getting enough calories to thrive and/or maintain her weight.  They were fine that we quit the g tube feeds and said as long as Wrenn holds her own, we can continue on this natural path with her meals. 

The CDC doctor asked a lot of questions about her shots and our schedule for the next six months with immunizations.  She will analyze test results and will work along the same lines as our immunologist in balancing Wrenn’s suppression and immune system.  She clarified a few things for us.  She said that they feel pretty confident that this year’s flu vaccination is good and should cover many strains of the flu.  She said that the ONLY thing that keeps Wrenn protected from getting the flu is a mask—but in other words, when it’s not flu season, (like in the summer months) a mask is pretty useless—germs in general are passed via touch and so good hand washing and sanitizer is our best friend!  We have a few additional vaccinations to get in the next three months and they will then test her antibodies to make sure she’s building up immunity to them.

The Immunologist said that Wrenn’s levels were 404—which is GREAT!  Wrenn is making her own anti-bodies from the shots (vaccinations) she receives and since she’s not been sick since before transplant (knock on wood)—she doesn’t need IVIG (which is a monthly infusion, takes about 2-4 hours to administer and is just a royal pain in the butt).  We will check her levels at our next visit to St. Louis in April.

The pulmonary team said Wrenn looked and sounded great!  They said all her cancer tests and levels looked wonderful.  Her VQ tests were spot on and so Wrenn didn’t need a bronc for this visit.  They all noticed she was very busy, talkative, bossy, and a climber—everybody cringed when she jumped off the chairs.

Wrenn’s Eco and CT scan looked great and so no further exams/tests were needed.

This was the BEST visit a transplant kid could ask for.  Leaving after a one day visit!!!  AMEN!

One of the things they are going to do is follow up with a few more stool tests for fat content and parasites—mostly to cover everything that could be causing Wrenn’s multiple diapers.  They said that because she eats so healthy the food could be the cause and as she gets older her body will adjust to control that better—this would be the best outcome, meaning no problems just mother nature figuring it all out.  I don’t feel the doctors think we will find an underlying problem/issue but they are checking all the tests from their list to make sure they cross everything off their list.

We were able to visit the NICU and nurse Beth—she had taken care of Wrenn a lot while we waited on lungs.  Dr. Barb from the NICU popped in to clinic for a while and we also visited with Dr. Hamvas, our genetic scientist who continues to research lungs and stem cell growth, which is one of his biggest projects. 




Tanner had a great time at the Sibling Playroom with his buddy Mr. Pat—who looked worn out from the day when I picked Tanner up at 6:15PM. We love seeing our Playroom family because they were such a big part of Tanner’s world while we were in St. Louis—and the fact that Tanner enjoys himself when he visits—proves that they did an amazing job.  Love you Pat and Rita!





Therapy for Wrenn was a little different this visit.  Rebecca, Wrenn’s ongoing therapist since the NICU, had Wrenn walk in a circle and monitored the oxygen saturations.  Wrenn did a great job and walked for six minutes, which the therapist said was amazing—most kids get bored walking in a circle but not my kid—she’s the little energizer bunny! She proudly wore her mask, held her purse in her hand and showed off her new Minnie Mouse boots while showing off those perfect oxygen saturations.



Rebecca had Wrenn climb up on the ropes, jump on the trampoline, slide down slides, show off her words and colors, toss the ball around, eat and drink while walking and laughing and skip to the next station as she sipped from a tea cup.   Developmentally, Wrenn is ahead and thriving.  Something I never ever thought would be possible on that one dark day when I attended a baseball game two years ago.  Oh, what joy it brings me to witness a daily miracle.  I always say we’re both cursed and blessed.  As long as we have both—I can’t really complain!




I love hearing that the continued prayers are still out there for our family and especially Tanner and Wrenn.  There’s a reason she’s doing so well and I have to accredit everybody for their faith—you have no idea what it means to our family and I’m so glad I’m able to share her progress with you all!

Xoxo nicole

Submitted by Nicole on 9/28/2012

Fragile
Labor Day weekend I was quickly reminded how fragile our lives are with Wrenn’s condition.  The reality: In the blink of an eye, things can go from perfect to tragic at any given moment.
It all started at our GI appointment in June. The doctor looked at her growth chart and decided that Wrenn (at 19 pounds and 26 months old) needed more calories to gain weight. I admit, she’s not a great eater and won’t drink a ton at one sitting but I don’t know many toddlers who eat that great in general.  Nutrition is important for Wrenn so she can grow with those large new lungs she received two years ago. (September 23nd)  So I do take her GI appointments very seriously. However, sometimes after trying what the GI doctor says, life becomes more miserable for everybody involved.  He wanted Wrenn to be fed for eight hours straight while she slept (continuous feeds) and then three additional feeds during the day.  What I found wasn’t surprising; she stopped eating solid foods during the day and at night, and woke up every hour because she was miserable.    
At our next follow-up appointment in July we were told that Wrenn had gained one pound from all of this, which I felt was great, but the GI doctor got out her growth chart again and compared her to everybody else.  He told me she needed higher amounts at night and increased her volume of formula during the day as well. Wrenn didn’t agree with either plan and so neither did Mommy. After trying this for two weeks, I cancelled our next follow-up appointment and regrouped.
Three weeks ago, I pulled the plug.  I decided to stop all G tube feeds during the day and see how much she’d eat and drink on her own.  I did keep the eight hours of feeds going at night to make up for any lost calories during the day.  She ate and drank a little more during the day but it wasn’t the result I wanted.  So two weeks later I quit the night feeds as well.  Wrenn’s therapist had said that night feeds can greatly affect their appetite during the day and so I went all the way with my new plan.  I decided Wrenn was capable in chewing and drinking—the two things she’d never experienced on her own was getting hungry, and satisfying that feeling to becoming full.  I felt it was time she learned this natural course of events.
The second problem we were having was that her labs in June showed Wrenn had very low magnesium levels and iron.  The GI doctor said she was anemic.  What I realized right away was that her new formula (not soy anymore since she’s lactose intolerant) contained a ton of iron, where her new formula (Neocate Jr.)—(the stuff I just quit) barely contained any iron.  The GI doctor tested Wrenn’s stools and one out of three came back positive for containing blood. (Sometimes you can’t see this and a test is the only way to know for sure). This wasn’t a good thing and so he introduced iron supplementation into her diet once daily.     
Of course, we don’t do anything without first contacting St. Louis to make sure the new plan works well with her rejection medications.  After a few weeks, everybody was on the same page and we went with the new program for the iron supplementation.
At first I was a bit freaked when Wrenn barely ate or drank without those tube feeds but within three days she showed more interest and enjoyed a few midnight snacks.  I counted the number of wet diapers and noticed her stools had changed form but still all over the map as far as frequency and consistency. 
Feeding time has always been the most challenging part with a kid who had to learn to eat and drink at ten months old.  It’s a long, frustrating process and it’s very important that the patient, the doctor and parent be on the exact same page.  This isn’t an area that St. Louis gets too involved in—they leave it up to us and our local GI doctor to figure it out.
I decided in the long run that it was worth Wrenn losing a pound or two for that first month or two to stick with the new program and see if she starts to eat bigger meals and more often.  So far she’s not lost any weight and seems to be much happier and less gassy without all the formula.  She’s sleeping through the night too, which hasn’t happened since we lived in St. Louis.
When Wrenn was having issues with her prolapsed rectum we watched her diapers very closely.  It’s not normal for toddlers to have 10 to 12 diapers a day and that was Wrenn’s norm for a long time.  Once she was on the Flagyl, we went down to three diapers daily and it all seemed better.  The GI doctor told me that when she starts having gas pain and several diapers to call him so we can have her come in or do the Flagyl again. 
Here’s the problem—long term use of Flagyl causes neurological issues. So it’s very important that I know for sure that she’s in need of this drug.  Last Thursday and Friday she was up to 12 diapers a day and there was no rhyme or reason but she was on the 7th day of eating at her own pace with my new agenda.  I was getting worried and on Saturday morning called the GI doctor on call and asked for Flagyl to be called in to the pharmacy.  This doctor said something to me that I had thought in the back of my mind but had kept in the back of my mind for obvious reasons.  He said, if Wrenn’s in need of Flagyl every couple of weeks, which isn’t the norm, she probably has an underlying issue that is masked by the drug we’re giving her.  The scary word came up and it made me realize how fragile our lives are with Wrenn’s condition. 
“I have seen this many times, parents think their kid is lactose intolerant and has a GI bacterial build up and what they actually have is an intestinal cancer—which is often caused by the two drugs she takes for rejection called Cellcept and Prograf.”
My heart stopped beating.  The doctor then asked me if the transplant team tested for cancers post transplant and I said yes but wasn’t sure if they tested for the one to which he was referring.  You can imagine my anxiety that this question was hovering over me on a holiday weekend. It was going to be a long three days until Tuesday morning when I’d be able to get any answers from the transplant team. My family and close friends were livid that the doctor on call (a doctor in the practice who had never seen Wrenn as his own patient) suggested this to me on a Saturday morning but I wasn’t mad at him at all.  When we signed on for Wrenn’s transplant we went over a thick booklet with our transplant coordinator stating every single thing that can go wrong with Wrenn post transplant.  We have heard it all and it just depends what path Wrenn is going to take.  Cancer was something I knew could happen but generally it happens with LONG term usage.  The odds are this wasn’t Wrenn’s GI issue but again, every kid is different and at that very moment in time, I didn’t have the answers to this doctor's questions. 
I’m almost certain my daughter was on his mind for much of the weekend. It’s not every day you have a double lung transplant patient at her tender age and it’s a call you don’t forget.  He was very eager to call the transplant team and did so first thing Tuesday morning.  
Unable to think about anything else that morning I got in touch with a few transplant mommies and they weren’t sure either.  This is the moment that you recall what your coordinator tells you: Worry about what is, NOT what might be.  I chanted that all day to myself.  Feeling the need to do something I sat down and wrote a very detailed email to my transplant coordinator, Laura.  I knew it was a holiday but prayed she’d see the panic in my words and reply, giving me something positive thoughts to get through the weekend.  After sending that email I hugged Tanner and Wrenn and realized how fast it could all go downhill. I spent the rest of the day not leaving their sides.  This was all part of the rollercoaster ride I agreed to and I was doing it without a seat belt. 
Even though my mind raced with good and bad thoughts I was on edge and the day for all of us was somber. Wrenn looked so good and although I couldn’t imagine this being a possibility, I couldn’t be certain.  It was an exhausting day mentally and I was tired so I turned in early and when I woke up on Sunday morning I had an email from the transplant coordinator in my mailbox.  I read the email to Jason and I again started to breathe without telling myself to do so.  The test the GI doctor on call suggested had always been negative for Wrenn and Laura said that Wrenn, in their eyes, has been great post transplant.  It was reassurance I needed and on Monday she confirmed this with the GI doctor.  All cancer tests so far have come back negative! J
It amazes me how level I remain when faced with things that are so out of my control.   I was so thankful my transplant coordinator wrote me back so soon and was so grateful for her compassion concerning my fears.  It is out of character for the team to write during a weekend and well, it just shows we have good people around us who care about our family and especially baby Wrenn. It’s such a life lesson sometimes to experience the reality check like I did.  It’s been such a wonderful summer and after a while you forget what you’ve been through and then something reminds you that life can turn upside down in the blink of an eye.  Life really is a gift and I feel God reminds me often and I am thankful for that. 

We head to St. Louis for Wrenn’s two year checkup on Monday (today). This will be the first appointment where a bronc is NOT required but is scheduled just in case.  Our day on Monday is packed—labs, immunology doctor, Infectious disease doctor (this is new to all transplant recipients), pulmonary doctor, transplant gastro doctor, then after lunch she will be put under and have her PFT’s done (infant pulmonary tests to make sure both lungs are doing well), cardio station, x-rays and CT scans.   Our day goes from 7AM to 5:30PM. 
It’s scary knowing we don’t have a bronc, because we leave wondering if her lungs are rejecting but unless they take a biopsy of the specific spot that is rejecting, the data is skewed anyway.  It’s nice knowing she might not have to have one and put her through the risks of infections or additional complications.
On a great note, we saw the pulmonary doctor at VCU in early August and he was very pleased with her and so we won’t see him again until January. 
June, July and August are the best months for our family and we feel the most normal as we blend in with the world—going out in public and doing fun things like Busch Gardens, going to dinner, playing in the pools at the water park, Water Country USA, shopping with Mommy and playing outside in general.  We rarely mask Wrenn in the summer because it’s not a high risk time for her but we are always aware of good hand washing and use bottles and bottles of hand sanitizer.  We change out Wrenn and Tanner’s clothes if they’ve been playing in a germy area like a park or with other kids (which isn’t very often) and they take showers right away.
As soon as September 1st arrives we are on high alert.  We’ll still go out to eat but will eat outside when possible and at odd hours of the week like 4PM, not 6PM.  We won’t visit too many public places and play dates will be less often.  Wrenn and Tanner received their flu shots in mid-September and we will get our shots in early October. Wrenn gets a booster in early January.
This summer Tanner took a hip hop class and I explained to all the parents our situation with Wrenn and asked as I handed out my phone number, to let me know if their child went home sick, or had been sick as a courtesy for keeping Tanner and Wrenn safe in our crazy world of germs.  Most people, I should say, ALL people we explain our situation to are compassionate with what we have to go through and have been wonderful in communicating. Obviously, summer isn’t high risk but as we move forward this will be a common speech as Tanner explores his own world with other children. Luckily, he won’t start school until next fall.  That’s a whole new blog J
Wrenn is a smart little cookie. She loves to finish off Tanner’s food. She loves fried eggs with buttered toast. She loves all fruit and salad and still prefers water to anything else for liquid. She loves shoes, hats and purses and is very into her baby dolls right now. She is a climber and wants to be around me at all times of the day, helping me cook, clean, eat, watch TV: she is my little clone. 
Tanner and Wrenn are so close and play well together.  When she takes a nap he wakes her up so they can keep playing (Grrrrr!).  They wrestle, play the Wii together, dance, sing, chase one another around the house, jump on the bed, giggle in the backseat of the car and fight over TV shows.  They melt my heart every day and I am soooooo lucky that I get to watch them as they continue to grow close.  There was one day in June I didn’t have a sitter available and I had to take Tanner with me to get Wrenn’s labs drawn.  He was sitting in the seat next to Wrenn and the two nurses tried to cover Wrenn so he wouldn’t see but he heard her cry and knew something wasn’t much fun for his little sister.  It was the time they had a hard time drawing blood and so that made it even worse for all of us.  When she was all done he came over to Wrenn and said, “Are you okay Wrenn?”  And he rubbed her head. Clearly, he was in tune to her pain and it put tears in my eyes.  Now when I mention I have to take Wrenn in for monthly labs he says, ‘That hurts Wrenn.”  SIGH!!!

Although, we’ve been lucky.  Wrenn usually needs labs drawn once a month and they are so good at this lab we go to that it’s just one prick and she’s done.  She doesn’t even cry anymore.  She spends so much time in the doctor offices that her favorite toy to pass along the time is playing with the latex gloves.  So when we finish drawing blood she asked for a glove as her reward.  The lab said they could only give her a stuffed toy, which she threw on the floor because she preferred the glove! LOLWrenn’s two year re-birth (when she received her new lungs from that wonderful donor) was September 23rd.  It is a bitter sweet day for our family and I’m sure still is for all those who were along for our journey as we waited daily for that one phone call.  We don’t throw a party on the anniversary of her surgery. In many ways I feel this is a day to reflect, thank God for her good health, and remember and thank our donor even if it’s through prayers.  I also feel in many ways that celebrating will jinx her good fortune and since I’m very superstitious, I prefer to celebrate quietly.  
I greatly appreciate the emails we receive from our cyber family. You guys are the heart and soul of Wrenn’s success and give our family the strength to get through the rough days.  I am so happy to say that things are going well for Wrenn and as we gear up for her major check up Monday in St. Louis, I hope to give you great news.
Xoxo Nicole

Sent in by Nicole 5/17/2012
“SERIOUSLY, God, I have my limits,” I mumbled under my breath.   I looked up at Jason in the Emergency Room as Wrenn screamed her head off while being tortured by the ER team.  They struggled to find a vein for an IV.  “I need those guardian angels back because I can’t watch this!”  The second team came in (veterans, they called themselves) and I hid my head as they tried a fifth and sixth attempt on her little ankles.  I looked up—NOTHING!!! I was so angry and just tried to hold my composure as I again looked away and caressed Wrenn’s sweaty little head.  Her veins were dry and the only liquid draining from anywhere in the room was from my eyes—I finally ended the torture.  
AS I write my blog entry I inhale deeply while thinking about the last six months.  A sigh of relief, finally, but I still feel the tension in my shoulders from all the events that took place.  When I signed up for Wrenn’s double lung transplant, I knew we’d be exchanging one set of problems for new ones but I’m the type of person where I do well if I know what I’m dealing with—then I can battle forward and ultimately conquer any obstacle in my way.  For the last two years, on more than one occasion, Wrenn has been deemed a ‘mystery’ child with a couple of curves that were thrown her way. I’ve had doctors in meetings throw up their arms and say, “I’m just damn scared of the girl.  I don’t know what to do.”   I’ve seen gray hairs appear before my eyes on some of medicine's finest.   I pray that we’re done with the mysteries for a while.
WHEN Wrenn was born she breathed REALLY fast.  She was on 8 liters of oxygen and she was fed a thick mixture of breast milk and milk proteins to help plump her up, so that the transplant team in St. Louis would accept her into the transplant program.  What I can tell you is that her system (Gastro) was a MESS back then.  Her digestive system was working just as hard as her lungs and everything in the body had a cause and effect, especially when organs are working really hard or not in sync.  Her body back then was on Fight or Flight and it reacted to keep her alive.   
ONCE Wrenn arrived in St. Louis in July 2010, her heart and lungs weren’t working quite as hard thanks to sedation and intubation but her digestive system struggled.  Wrenn had loose stools, daily vomiting, minimal weight gain— the list goes on. All signs of a very sick child in desperate need of a double lung transplant. 
EVEN though Wrenn received her transplant in September, her GI issues continued; Bloating, loose watery stools, cramping, discomfort with gas and frequent bowl movements confused doctors and baffled nurses.  To most, it was an easy diagnosis; every medication she took had terrible side effects; cancer, rash, loose stools, frequent stools, cramping, nausea, itching, sun sensitivity, stunted growth—the list went on and on to the point of us NOT wanting to finish reading the risks for fear of what COULD happen with long term use of the rejection drugs. 
IN December of 2010, Wrenn appeared stable when she came home but feeds were always a struggle with the G-Tube.  It was a guessing game for us to know how much was enough, how often, how to introduce food and when?  What would irritate her, would she choke while trying food or worse, aspirate into her new lungs?  It was a process where walking on egg shells became a daily routine.  GI wise, Wrenn had good and bad days but the loose stools were always a part of our daily life.  We chalked them up to the Milk of Magnesia she took 3 times a day to replace the magnesium the rejection medications depleted in her body.  She had some solid stools, but frequent ones for sure and her weight was at a plateau, which wasn’t good for her new lungs, which needed good nutrition to keep them healthy and strong.  To give you perspective on how rejection drugs affect a baby/toddler—Wrenn is the size of a 14 month old baby, even though she is 25 months old.  She is STILL wearing size 3 pampers (she came home from the hospital wearing the same size over a year ago) and as of 10 days ago, only weighs roughly 18 pounds. 
ONCE we moved back to Virginia things were stable and OKAY for Wrenn standards.  She hadn’t gotten sick, wasn’t constipated (that’s for sure), and we were in what we thought was a GOOD place. HAHA!  Never blink when it’s Wrenn.
ALMOST acutely, back in early February, Wrenn started having painful bowl movements, gas and diarrhea (yep, worse than before) and so I thought she had an intestinal bug.  I waited eight days and she didn’t seem to have fewer diaper changes.  I waited two more days and called the transplant team.  They ordered a ton of stool tests to be done to see what type of infection she was fighting.  Two weeks later her urine and stool tests came back negative.  She was perfect according to the tests, but still not doing well.  I tried for the next three months to take away foods that might have been the problem like milk, cheese, wheat, fruit, etc.  But nothing worked.  Then I thought that maybe she was getting too much liquid and her body was rejecting it (the colon wasn’t able to hold in the nutrition), but that wasn’t helping either and only made her lose weight for the lack of feeds during the day).
AFTER two more months of this nightmare routine of trying new things and taking things away, Wrenn was worse with nightly crying episodes of pain and struggling to let out gas.  The lack of sleep made both of us very cranky and I was very frustrated.  The ONLY conclusion I could come up with was that her antibiotic was bothering her.  She takes this broad spectrum antibiotic for life, Monday, Wednesday and Friday to ward off common bacterial issues like ear infections etc.  It’s a preventative measure and a MUST for her survival.  I knew that antibiotics were hard on the digestive system (they were on Tanner) and it didn’t help that she HATED yogurt.  In fact, dairy products only made her diapers worse.    
I wasn’t sure how but I knew her gut was done as far as good bacteria.  What I didn’t realize at the time was that I needed new eyes to help solve her issue.  I accept that sometimes it’s best to hit rock bottom so you can float back up to the top.  I feel like this is learning the hard way but sometimes it’s the ONLY way.  As long as we get to a better place, it’s all worth it.
HOW we finally reached rock bottom:  In early March Wrenn had two terrible nights of screaming episodes and we did everything possible to make her better but nothing worked.  Finally, Jason gave up sleeping and brought her downstairs.  He fed her some soy milk, hoping she might be happier with a little food in her belly and to help push out some trapped gas since her pain seemed to be in the lower intestines.  Well, it worked!  After that huge bowl movement, he came up stairs with Wrenn in his arms, turned on the light and said, “I think we need to take Wrenn to the pediatrician.”  I looked at him with tired eyes and assumed her diaper rash had gotten worse but what I saw was even more horrible than some minor irritation.  I glanced down at Wenn’s bare bottom and saw that a big red, blooming flower had erupted from her tushie.  “No,” I said, catching my breath and jumping out of bed like a crazy person, “get her dressed; we’re going to the ER!” 
MY first instinct was that she had pushed out her intestines, which I’d never seen in real life outside of a body.  Needless to say, I was freaking out! I didn’t even know where to take her since we’d not been in Virginia long enough to prepare for an emergency type situation.
IT was a crazy 20 minutes.  My cell phone was dead, Jason’s phone was missing at the moment, Tanner was asleep, and neither of our parents would answer their cell phones so we could tell them what was going on.  I finally found a cord, plugged in my phone and called the pediatrician, who told us to go straight to MCV/VCU Children’s ER.  They told us she’d be more comfortable in an ambulance and to keep the area damp.  (The ambulance was 5 minutes away but took 30 minutes to get to our house—still trying to figure that one out!)
MY imagination went to the worst places—when you live in a Children’s Hospital for a year you fear a LOT more.   I kept thinking surgery, possible infections; long term issues that would make her need more surgeries and constant pain without a cure.  I couldn’t stop worrying as I followed the ambulance to the hospital.   Once we arrived they took us back to a private room. 
WE described what had happened to the ER doctor and he kept asking if Wrenn had ever been tested for CF (Cystic Fibrosis).  I immediately assumed that CF was among the first test they had done when she was born with all her respiratory issues but they told me that a blood test isn’t as good and ONLY a sweat test is 100% accurate when testing for CF (a sweat test can’t be done in the NICU, at least it couldn’t be done for Wrenn in the shape she was in).  I started texting my friends at Winnie Palmer and told them what was going on; their support for our family continues to amaze me daily… hugs to them for being there for us through all of Wrenn’s ups and downs.
FINALLY, an hour later, the doctor was ready for the diaper to come off—apparently, the prolapsed rectum had gone back inside.  This was both good and bad.  Bad, because once it happens, there’s a better chance of it happening again and again.  Good, because she was free to go home; but what do we do if it happens again?  UGH!  The doctor told us if it doesn’t go back in within an hour to come back to the ER. Well, this sucks!  Hospitals aren’t a great place for Wrenn with her immune suppression.  She’s going to end up catching something and then to drop our lives every time this happens and rush to the ER isn’t an option.   So far we had more questions than answers.  They referred us to a very reputable GI specialist from MCV/VCU named Dr. Ted Williams. The appointment was set for that following Monday (3 days later).
WE consulted with Dr. Williams who ordered a ton of blood work to rule out allergens, Silica’s disease, immune tests, stool tests and anything else that hadn’t already been done.  He changed her intake on formula and stated his concern for her weight, which has always been a struggle.  I told him I didn’t think it was allergy related although I do see a difference with milk products. 
WRENN did okay for four weeks past that appointment but then, Sunday prior to leaving for St. Louis (mid-April) she had another incident, but luckily the prolapsed rectum went back in—no ER visit necessary.  Then the following Thursday it happened again twice and we couldn’t get it back in (April 19th).  We again had to take her to the ER and this time, she was so irritated that the ER team couldn’t get it back in either.  So, we had to have her wait for GI surgery to take a look.  Finally they decided to admit her to Peds and it wasn’t until 12 hours later that they got the prolapsed rectum back in. They had given her an IV and morphine to help; otherwise we’d still be there waiting.  The surgeons gave us a lesson on how to put it back in, but let’s face it, this isn’t the entire issue and how in the world was I ever going to have any one else watch her if this kept happening?  This is our child and our responsibility, if it means putting in rectums, then that’s what we’re going to do, but how dedicated is the rest of our family?  L  
MCV/VCU held Wrenn overnight for observation and taped her tushie shut to help with gravity.  They didn’t continue her feeds until the next morning (Saturday).  The doctors at MCV again said we needed to have Wrenn tested for CF, just to rule out Cystic Fibrosis.  I tried to wrap my head around how my child could possibly be cursed with not only the 4th diagnosed case in the world of a rare lung disease with a double mutation for ABACA3 but then, how could she possibly have CF on top of that?  WHAT A NIGHTMARE I was living at this moment!    
WE left the hospital around 2PM Saturday— unpacked from the hospital stay and then repacked our bags so we could head to St. Louis for Wrenn's 6 month check-up.   The 16 hour drive gave me plenty of time to rethink the last 3 days and I was still in a sheer state of panic.  What if this doesn’t stop happening? What if this is her life of being in constant pain and hating food and losing more weight?  The lungs seem perfect but the rest of her body is taking a beating.  I was so upset and all I could do is worry. 
DESPITE my anxiety the kids were great on the long trip.  The only incident we had was Wrenn’s G tube broke inside of her in Kentucky (luckily it wasn’t in West Virginia, where it happened before and added an extra 3.5 hours to our trip when we visited an ER).  I had a spare G-Tube, which wasn’t the right size but was perfect for a temporary fix.    
AROUND 6pm in St. Louis we had dinner and checked in to the hotel.   Wrenn was on limited food and water for the next two days, which wasn’t going to help her weight loss but we didn’t have a choice.  On Monday morning she had labs.  Sadly she was so dry they couldn’t get a vein or blood out of her at all.  It was a nightmare.  A true sign of all she’d been through and what we’d witnessed in the ER.  I wasn’t looking forward to the multiple sticks and two IV’s that were necessary for her procedures both days. 
NEXT we then headed to Immunology to see Dr. Ellis, who told us great news.  They had checked her levels and said that Wrenn’s body had more than doubled in building up her own immunity since last October.  We had stopped all the IVIG infusions throughout the winter, which meant less risk for infections and less doctor office visits. (Yeah)  This was great news and meant that Wrenn’s body was making its own antibodies and that she was thriving.  It certainly helped that she hadn’t gotten sick during flu season (knock on wood).  Dr. Ellis talked about Tanner going to school but it’s a conversation that will take place a hundred more times before he actually goes, meaning,  I just can’t say where—when—for sure.  We have to take our lives day by day and see how things are going to make such a big decision that affects our entire family. 
TRANSPLANT clinic started about 10:30am.  Both the doctor and coordinator said Wrenn looked amazing.  They were happy with the IGG numbers (From Dr. Ellis) and minus the prolapsed rectum incidents, said that Wrenn looked like a normal little girl.  Since they are a lung transplant program, (work above the waist) they wanted the GI specialist in Virginia to continue working with us on her GI issues.  I was sad that we weren’t going to get answers in St. Louis but would know all the results pulmonary-wise by Wednesday afternoon.
WRENN was put under for all her infant lung tests around 11:00am.  She came out not needing any oxygen and the results on her tests were great!  Both lungs were doing equal work and sounded great, looked great and worked great—all great news. J
AROUND 5PM that evening we met Wrenn’s old therapists from St. Louis (Kayla and Julie) for dinner at our favorite (well, Wrenn’s favorite Italian Restaurant) Zia’s.   It was so great seeing them and they loved visiting with Wrenn, who loved showing off and made them both smile.  



THE next morning we were up bright and early for Wrenn’s bronc.  Around 9AM they took her back to the OR and within an hour she was in recovery, snuggling with her puppy and blanket.  She again did great and didn’t need any oxygen post procedure.  We just had to wait for the biopsies to come back (24 hours) before heading back to Virginia. 
THAT evening we had dinner with one of Wrenn’s nurses from the NICU (Aunt Beth) and Jason’s former boss, Billy.  It was nice catching up, exchanging photos and celebrating great news with people we had shared so much with over the year and a half we had lived there.  Both Beth and Billy had seen Wrenn at her worst.  It’s great to show how she’s beating the odds so far and that God is keeping her healthy and well. 
IN between all the great news Wrenn had another prolapsed rectum.  The doctor on call told us to head to the ER and so we did.  When we arrived we checked her diaper and saw that it had gone back in. We returned to the hotel room and sat on pins and needles, worried about the long drive ahead as her GI issues continued.
WEDNESDAY morning we went to Wrenn’s last appointment at Children’s which was with her long time therapist from the NICU (Rebecca).  Rebecca evaluates Wrenn every six months to see if she needs more or less sessions (right now Wrenn has speech once a week in Virginia) and this is a nice way to make sure Wrenn’s on track developmentally.  Rebecca was amazed at how active Wrenn was.  She watched her climb up and down slides, walk over uneven surfaces, hop up onto the trampoline and jump, step down and chase and throw a ball across the room, pick out heavy toys and carry them to her own spot, giggle, smile, interact, sign, and act like a totally normal child despite all she’s been through.  Needless to say, Wrenn got straight A’s on this visit and our family couldn’t be more thankful. 
THE very next morning we got the thumbs up from the transplant team that Wrenn’s biopsies had all come back negative, NO REJECTION J  With this news we were free to head home.   
OVER the next 15 hours (in the car and the hotel we stopped at in West Virginia) Wrenn had two more prolapsed rectums that followed painful screaming episodes.  The very hour we arrived home in Virginia, we again headed to MCV/VCU ER.  (It was a week ago exactly that the exact same ER team had helped us before).  They were sad to see us back!
WHEN we arrived at the ER at MCV they wanted to put an IV in Wrenn so they could give medications and be admitted to Peds for possible surgery to fix her habitual problem.  The problem was Wrenn was so dry from the days in St. Louis from having missed feeds that the ER couldn’t find a vein again.  Jason and I held Wrenn down while they tried in each arm, wrist and then each leg.  It was painful to watch and I had tears coming from my eyes.  Finally I said, no more.  I told them to give her morphine through her g tube and end this madness!  Within minutes they had her relaxed and the surgical doctor came in and pushed the rectum back in. 
(I want to note that almost 99% of all transplant patients, especially kids, have GI issues.  These are very common issues for the most part because of the side effects from the drugs and the child’s overall health.  It’s easy to misdiagnose a real problem because of the medications and diet).
THE surgical team fed her Pedialyte during the night and chose to do the most non-invasive surgery possible that would temporarily keep the rectum from being pushed out, which would hopefully buy us some time to find out why her GUT had so much pressure.  
THE next day Wrenn was taken to the OR.  The procedure: the surgeon would inject sugar water into the rectum in three different places, causing the rectum to swell and scar so that it doesn’t easily pop back out.  The surgical procedure can last a day or a month or a year, it’s just up to how much better or worse she gets with the GI issues.  They could have done another procedure that staples the rectum inside but it had much more risk of infection and side effects. They don’t like to do that procedure on babies or kids because generally a prolapsed rectum is a temporary issue and corrects itself once the child is older.   
THE surgery took no time at all, in-fact putting her under and finding an IV spot took the most time.  Her arms were so bruised from the last ER visit and then the labs and IV’s in St. Louis; she looked so abused.  
THAT night after the surgery they started her on a drug called Flagyl.  This is a drug the GI doctor thought might help Wrenn if it was an overgrowth of bad bacteria in her intestines.  He said if the drug doesn’t fix her bowls, they’ll have to do a biopsy and test her large and small intestines for other issues. (I didn’t even want to go there but at least we had a plan to cross things off the list).  After dealing with this issue of mysterious pain, gas and crying episodes all night, I just needed answers.
WRENN came out of the surgery in a lot of discomfort but after I had demanded she receive some morphine, slept soundly for two more hours and then woke up thirsty and in a much better mood.  The surgeons ordered no food or water for 24 more hours to protect their work.
THE next day (Saturday) around 3pm she was given a huge lunch and boy did she eat.   Macaroni and cheese, chocolate milk (her new formula called Neocate), peaches, bread, mashed potatoes and pudding for dessert.  Now it was all about watching her for the next twenty-four hours to see how her system would take the food and see if the Flagyl would make a difference.  It was nerve wracking to watch and especially stressful each time she pooped but she did great!
AFTER twenty-four hours we were released from the hospital around 4PM Sunday afternoon.  It appears as though the Flagyl did wonders for Wrenn and so an overgrowth of antibiotics was indeed her problem.  When I think about all the times she’s had antibiotics in her short life it’s no wonder.  Her body was on overload with the stuff and needed something to wipe it out.  It seems easy now, but it’s hard to diagnose a child who is special and I think I have new eyes to thank for this cure. 
WRENN was on the Flagyl for 14 days and I’m so excited to say that she’s a NEW child.  She used to have 20 diapers in a 24 hour period, now she has 6.  She loves food now, sleeps through the night and it just seems like she feels so much better.  I just can’t imagine what she would have said if she could have talked about how much pain she was in.  I dare say she was probably miserable for over a year with these issues and they just went unnoticed due to the rejection drugs and history of GI issues. SOME kids stay on Flagyl, but we are going to see how it goes as a one-time dosage, now that I know what to look for (I believe I saw her progress to what was the WORST case scenario) and so we can literally nip this in the butt next time. J
WHAT a whirlwind we’ve experienced for the last 6 months.   You can’t blink with a child like Wrenn.  This is why I can’t work outside the home.  It’s impossible to know a child like Wrenn without understanding her daily and nightly routine.  Giving the meds at the precise time is life or death for her.  The amounts she is given are life and death and seeing any type of change with her physiologically is so important and a must to her survival and overall health. 
AT Wrenn’s GI appointment today in Richmond she weighed 19 pounds, 9 ounces, which is a GREAT weight gain in two weeks. (Better than a pound)  We are hoping that she’ll stay on pace and her body will start catching up. She is still at an 8 month old weight and a 14 month old body.  But I’m sure she is going to thrive now that she is holding in nutrients.  WE had such great news from St. Louis and they were so happy to hear that this wonder drug made Wrenn ‘perfect’ again.  We are in so many ways cursed and blessed.  I continue to ask God to put the right people in my path to make things better for Wrenn and for our family.  I have to say, I’ve learned more than my share about the human body and medical devices.  I have to say, putting a rectum back in place wasn’t anything on my wish list.  In the ER I felt the need to tell God I have limits—Obviously, I’m not the one pulling the strings.  So the best I can pray for is a DAMN good team to get me through the rough times.
I want to thank my Winnie team for answering all our behind the scenes questions while we were trying to figure out Wrenn’s issues.  You guys are the best!! I’d be so lost without you all. Perri, you’re Wrenn’s little guardian angel and mine, too!
UPDATE on Tanner:
TANNER was really looking forward to seeing his buddies in St. Louis and played every single hour he could in those three days at the Children’s Sibling Playroom.  He was exhausted at night and had the best time with his ole’ pals—Mr. Pat and Miss Rita.  The Sibling Playroom staff is such a wonderful part of our family and we really do look forward to seeing them every six months.  
I also want to thank all our friends and family who prayed for Wrenn when we needed answers and for coming to the hospital to see Wrenn (Mandy, Laura, her MCV doctors) and our parents for helping out with Tanner so we could take care of Wrenn.  Our lives take a team effort and it’s impossible to do it all alone, even though the sole responsibility falls upon our shoulders.  This is the type of support that gets us through the difficult/trying times and we couldn’t do it without you all.
On a personal note:  I’m thinking that someone should seriously present me with an honorary nursing degree because I’m pretty sure I’ve earned one at this point! J (Editor's Note: I agree!)
Xoxo Nicole

Our family has been in Virginia now for four months.  Finally, things are starting to settle and feel more ‘familiar’.  It really helps to see our friends, who have accepted our bizarre situation and are as expected, VERY supportive.  Wrenn’s doctors are great and we of course keep in close touch with our St. Louis team, nurse friends and surgeons when needed.
So far, knock on wood, we have had a GREAT four months into this flu season even though it started late.  Wrenn receives an RSV shot once a month (in both legs, and it’s very painful to watch) and will continue to get those shots during flu/RSV season (generally October-April) until age three.  She got her booster flu shot in late December.  The Transplant Team recommends she gets two flu shots per year because it’s not really known how long the vaccination actually lasts.  (Something to keep in mind if you get your shot really early in the season). 
Tanner has had to adjust to so much but after being near our family, friends and having more space to run around, he’s doing really well!  He was evaluated by a top notch doctor here in Virginia to see if he needed any type of services, such as speech, PT, etc.  What we found is that he’s very bright and tested at the 9-10 year levels on many tests.  The doctor said his ONLY concern for Tanner was the social skills he’ll lack due to the inability to be in a daycare/preschool type environment.  I told the doctor today I couldn’t tell him if Tanner would be homeschooled or not.  If I had to decide today, he would be.  But luckily I have another year or so to figure it all out.  The town in which we will be living will make a big difference and so will other factors, like how Wrenn’s doing and her risk to exposed germs.  As always, the bottom line is that we have to be able to LIVE with the choices we make for our family.  We have very hard decisions to make but have to do what is best for everyone. 
Tanner is a VERY good big brother.  If Wrenn knocks him upside the head with a toy he takes the toy and puts it in a place she can’t reach and says, ‘NO Wrenn’ in his mousy little voice.  He brings me her diapers, bottles, toys, throws diapers away, gives her hugs and kisses, plays with her, tickles her, chases her, hides from her and just loves her like he should.  I have started to talk to him more about Wrenn’s situation in kid talk but I’m not sure how much he really gets.  It’s more about, WHY he can’t push her down if she pushes HIM down kind of a talk; nothing about her diagnosis or future.  He continues every night to say a prayer for Wrenn, the prayer that God has heard since she was born:  “God, please heal Wrenn’s lungs, thank you, APEN.  (Yes, he’s always said, APEN)  J God understands.  

Wrenn, however, is such a little attention getter.  I don’t know if this is typical of a hospital kid but Wrenn constantly DEMANDS attention.  She is VERY jealous of any attention given to Tanner and has quite the temper when she gets mad.  (This is the fight inside that kept her going those first 8 months). The other day she was playing around the dishwasher, opening and closing the door, and then she fell and the lower lip came out and she then threw two plastic baby cups at it and I know cussed it out in baby talk.  I laughed so hard I was sorry I didn’t get it on video—it was the cutest pouty temper I’ve ever witnessed and she for sure takes after her great grandmas. J

Wrenn is an excellent communicator.  She makes up her own signs if we don’t come up with one fast enough.  She makes sure you know what she wants for ALL requests.  She is slow in speech but I’m guessing things will work when they are supposed to, just as they did with Tanner.  He took it all in and then one day had a conversation. As always, in Wrenn time. 
Wrenn has progressed amazingly with eating.  We figured out finally that she is drinking between 200-350 mls a day on her own through a straw.  This is HUGE and so we were able to take one of her G-Tube feeds away.  Because she drinks throughout the day, she is hungrier.  Her favorite foods are eggs, blueberries (really likes blueberries, have I mentioned blueberries?), Froot Loops, anything Italian, cucumbers, and believe it or not, anything associated with salads including lettuce.  She eats with a fork and a spoon and climbs up the pantry, then points or retrieves what she wants.  Routinely, she asks for either a marshmallow or M & M after finishing a meal (it’s her sugar fix). 
For play time she prefers either Tanner’s Transformer toys or super girly toys.  This morning she was running around the house in her pink pom-pom boots, while flying around Tanner’s toy with flying noises.  It was the cutest thing ever.  She claps at anything where people do something from beginning to end and loves Sesame Street and Dora.  She’s obsessed with shoes/boots and wears them all the time, preferably with just a shirt and a diaper.  I can’t turn my head for one second or she’s climbing a chair, reaching into a cupboard, or about to throw dishes.  Her favorite activity:  LEAPING head first from the couch to the ottoman full force.  The leaping gives my parents heart attacks when they babysit but there’s honestly no holding her back. She is something!

Wrenn continues to amaze the doctors with her progress both socially, physically and mentally.  She is so lucky to be doing so well.  Her oxygen saturations are 100 even at the doctor’s office and since she’s eating better, her coloring is beautiful.  She has plump pink cheeks but holds on to those little chicken legs I love so much and trust me, they can run REALLY fast after snatching one of Tanner’s toys!!We still get labs drawn at least once a month (sometimes 2 or more times if needed) but she does pretty well.  The nurse we work with is excellent and that’s always half the battle, getting it the FIRST stick.  I call ahead and make sure she’s there or we don’t go.  The lab is associated with VCU/MCV and I don’t know why, but I’ve never seen another soul in there.  This is GREAT because if you’ve ever been to a regular LabCorp, it’s wall to wall people. 
Our next trip to St. Louis is on the 23rd-24th of April.  We are hoping lung function tests come back so well on the first day that she won’t need to be put through sedation and a bronc the next day; making it a one day trip only.  So far, knock on wood, she looks amazing, sounds amazing and has escaped the flu and any viruses.  We’ve pretty much gone into hibernation during this late flu season but take all precautions to avoid any issues when we do go out or get near family.
The kids continue to make me smile, exhaust me and make me appreciate every day I have with them.  They are a handful but bring us so much joy.  Some days I’ll watch Jason hold Wrenn while she’s sleeping and he’ll have that look in his eye and I don’t even have to ask that he’s worried he’ll lose her one day.  We both well up with tears without saying a word because we can’t imagine our lives without her.  I pray every day that the genetic scientist makes a break-through in lung transplants for these kids to live for several decades.  I pray that God puts the right people in front of us to continue her health and longevity.  ABCA3 is the 2nd most successful for transplantation.  I’m hoping this holds true for Wrenn J
If there’s one thing I’ve witnessed among moms who face life-altering situations is the strength and desire they have coming out of the situation to help others.  My friend Nicole founded “Fay’s Friends”.  She not only talks parents through the entire process of infant transplantation but gives out beautiful bags to each transplant recipient under the age of 18 in hospitals all over the country.  Her bags contain tips of the area (case in point: I knew nothing about St. Louis and her maps, ideas on where to eat, where to take Tanner, how to get around, etc. were extremely helpful!).  She has gifts for Mom, gift certificates for places to eat and for grocery stores, and information on how to order supplies and tips on how best to keep medications straight.  She has items for surviving hospital days and nights and gifts for the baby.  (Wrenn still sleeps with her little monkey that Nicole gave us that first day in St. Louis.)  Nicole’s innate desire to help others is courageous and everything in that bag was the result of a LOT of research and a ton of work.  Not to mention she supports and watches everybody else go through the exact same situation she went through, which I’m sure is draining at times.  The entire situation brings up so many emotions, and the photos are so similar: infants waiting for lungs; all in rough shape and super sick.  I know for me, I picture Wrenn in all those photos as if it were yesterday and tears just flow for those families.  What I’ve consistently noticed is that parents like Nicole Neufeld, who are beaten down from a completely caught off guard type of situation, somehow find an inner strength to come back with not only a great idea but help hundreds of other families deal with the same challenges.  Not everybody has that capability to do so; her gift in helping others is priceless and has helped me on so many levels on a daily basis, I can’t even begin to tell you!
I know for me, I felt completely helpless those first three months when Wrenn was in the hospital at Winnie Palmer.  Day in and day out I watched people leave the building with their little pink-cheeked babies and I wondered at one point if I could start using the back door to enter because it made my situation so much sadder.  I sat in a chair for 9 months holding Wrenn, rocked her, read to her, cried for her and prayed—lots of prayers.  During those hours and days I constantly worried I’d accidentally pull out her oxygen cord or kink it and of course the alarm went off when I did.  But daily, those CORDS DROVE ME NUTS!  I felt like I focused more on those cords some days than I did Wrenn.  When she was in St. Louis waiting those last few weeks her bedroom looked like something you would see at NASA.  I decided early on that something needed to be done and that I wanted to find a way to help other parents both in the hospital and at home.  I already had the idea in my head on that first day that Wrenn was born… now I just had to get it on paper and so….
I started a clothing line in honor of my daughter:  Special Clothing for Special Babies—Inspired by Wrenn.  I guess you can say this is MY legacy for her.  This to me is something I CAN control and can make a difference.  My platform is to bring awareness to organ donation, the Ronald McDonald House and of course, give parents an option in clothing for their babies with special needs.  I have a price point for every scenario so families in all financial situations can own a special romper. (I know all too well what it’s like to be on unemployment and COBRA during a crisis)  So I offer heavily discounted prices to families who are currently in the hospital with sick babies, run periodic specials on Facebook and Twitter, have an Inspired by Wrenn Rewards program, a trade in program, a USED line for short-term usage and new rompers for grandparents who just choose to spoil.  I also offer specialty rompers for just hospitals with multiple combinations and in select gift shops at hospitals. My line accommodates babies with Ostomies, Tracheotomy, Gastrostomy Buttons (Regular and Post-Surgical), Central Lines, Heart Monitors and IV tubing.  If you’d like to see my site please visit: www.specialclothingforspecialbabies.com.  

If you know of someone who would benefit from one of these rompers, give them a special discount code: BLOG0414. 
I knew right away that a percentage of yearly profits would be donated to the Sibling Daycare Room at Children’s Hospital in St. Louis where Wrenn had her surgery.  Tanner as you all know spent MANY hours there and the staff became part of our family.  We would have been in so much trouble without this daycare center, which ONLY caters to inpatient siblings.  The daycare was started by the nurses at Children’s and then branched out to patient families.  I’ve never heard of an entity like this and I WANT to make sure it never goes away.  Just being able to pay one person’s salary a year or bring in twenty new toys or enable them to expand the room when necessary brings me great joy and purpose in having this special clothing line succeed.  I really wish that more hospitals had this great program available for siblings because it was an amazing blessing for our family during a VERY dark and challenging time when we weren’t surrounded with friends or family to help us with Tanner.
I’ve come to realize that when mommies are faced with challenging, heart wrenching situations, they tend to come back full force and make something great out of a not so great situation.  I really don’t know how I’ve done it all to be honest.  People who meet us for the first time often ask how we can look so happy with what we’re dealing with.  I guess it’s because they don’t see the sad moments… the unknown future and how things can change in the blink of an eye.  I guess that’s why I’ve created Inspired by Wrenn.  This project makes me feel like I’m actually making a difference in the world for those parents who try so hard to feel and act normal in a situation that is anything BUT normal.  As always, anytime I think that my situation is tragic, I see a more tragic scenario and thank God for my little Wrenn.  She’s perfect and there was always a chance she wasn’t going to be. 

On Sunday, just before moving back to Virginia, I took Tanner to Children’s to visit two employees at the Sibling Daycare Room. It was a place he attended for an entire year; some very long days when we were waiting for Wrenn’s transplant and then three months after. He also spent time there whenever Wrenn had an appointment at the hospital for checkups. All of the employees grew close to Tanner and to our family. They said we were the longest family to ever attend their daycare since opening. On Sunday I let Tanner visit for a while to say his goodbyes.
  
Pat, Rita and Tanner 

Tanner loved the day care when we first arrived but as the employees had warned us, coming too often burns a child out out and said we might have to find an alternative. We had no options and it always seemed as though he fought us on Wrenn’s worse days. The employees always did their best to get him excited about coming in—they went above and beyond for us and knew how hard it was balancing two children under the stress. I’d like to say Tanner said goodbye but really it was closure for us. I was sincere when I told them that we couldn’t have done the last year without their help and compassion. They were exceptionally attentive to our little boy who was thrown in the fire and lost while we all waited. I have a photo here of two of those guardian angels. Pat (who grew very close to Tanner and is his best bud—and Rita, who always smiled and looked forward to Tanner’s lit-up face as he pushed the doorbell upon entering. The employees made a beautiful scrapbook of Tanner's year and it was the most thoughtful memory any of us could have asked for--a memory of his good times and the people who took care of him while we were in St. Louis. I wish everybody could see how spectacular this memory book is; the photos show Tanner in halloween costumes, doing puzzles, sliding down the slide, interacting with the staff and eating snacks at the kid table. The words inside are just as touching and I cannot thank these wonderful people enough for all they did for Tanner. These are first class people who will never be forgotten! We look forward to seeing you every six months for Wrenn's checkups.

While Tanner visited for a few minutes I looked around the cafeteria and saw many families eating dinner; several kids were dressed in their pajamas and IV poles were parked next to the table as they ate. The coldness of the surrounding hit me and I wondered how in the world I lived that life for more than a year. How did I live the hospital life day in and day out and NOT lose it! Then I whispered to myself—I didn’t have a choice. I guess I did have a choice to not allow Wrenn to have the transplant but that wasn’t my choice at all. As long as she was fighting—so was I!

Spending the last seven months away from the hospital was surreal. I had become so used to a routine that seemed out of the ordinary to everybody else watching our family, yet for us it was simply the norm. Last March the transplant team let us loose from weekly appointments and then we only went every three months. Finally, I got used to NOT going to the hospital. Now, going back to the walls of Children’s feels odd—sad—depressing—lonely—tearful—quiet. As I look at those families eating together I don’t even need to know the diagnosis of their child to know that the parents are ‘doing their best to get through the day’. I know exactly how they feel every night before bed. I know the prayers they say at the bedside and when they wake up. I know their fear of getting a 3AM call that their child is extremely sick with an infection spiked fever or needing high oxygen or increased meds. I know what they think when it’s Taco Wednesday. I just KNOW and it’s something I understand because I’ve been there.

Wrenn had her last session in St. Louis with her Physical Therapist, Speech Therapist and Occupational Therapist. They told me she probably won't qualify for much in Virginia. This is GOOD news; less people coming to our home, less concerns for developmental delays and more money in our pocket. Wrenn’s therapists in St. Louis have also become a part of our extended family. People continue to amaze me as they opened their hearts to our family and it’s so touching to know that these three special ladies truly cared about my daughter and our family as a whole. They will be dearly missed.



Julie, Kayla, Wrenn and Julie

  
Tuesday before leaving St. Louis was a busy day. I took Wrenn to the hospital to see a long line of people who impacted her life as well as my own; doctors, nurses and over all care team who will continue to watch her for as long as she lives. Around 9:30AM we met Dr. Hamvas and Dr. Barb on the second floor. Dr. Hamvas (a genetic scientist) had confirmed and diagnosed Wrenn’s rare mutation that first week we had arrived in Missouri. He had also given me the greatest news that Tanner was just a carrier of ABCA3 and would never need a double lung transplant. He's smart man and a sincere person who works hard finding cures for these babies. So far his team has turned Wrenn’s skin cells into stem cells. His research is beyond my comprehension but I’m certain the next five years are going to show amazing improvement for these surfactant babies and hopefully lung transplant recipients. Currently, they plan to grow new lungs from Wrenn's DNA. 



Dr. Hamvas and Wrenn 




Next Wrenn visited Dr. Barbara Warner. She is an amazing NICU doctor and an individual who touched my heart in so many ways. In August, (the month before Wrenn’s transplant) Jason took a four day trip back to Florida to pack up our things with our friends, and the day he left, Dr. Barb (as she preferred to be called) had left several books for Tanner in Wrenn’s room. She wrote a note that said, "I hope these keep you and Tanner company while Jason’s gone this week, Dr. Barb". I couldn’t believe my eyes. I’ve known some pretty great doctors but none that had ever bought me a gift. Dr. Barb was the doctor who kept warning me that Surfactant babies always end up on osciliators and/or on a paralytic near the END while awaiting for new lungs. She prepared me almost every day for what was coming and I could see the pain in her eyes for what our family would go through when those days arrived. I’m sure she thought those books were just a small thing but she has no idea what that BIG gesture meant to me. I frequently email her photos of Wrenn and Tanner and she is impressed how well our little angel has grown. A mother of two, she understood how challenging it was to handle the ups and downs in the NICU. She commended me many times on how I handled the situation under the hardest of conditions. I look forward to sending her many more photos and videos before our next visit to Children’s in April.



Dr. Barb, Wrenn and me


Next we visited Laura and Donna from the transplant team. Our transplant coordinators are the nucleus of Wrenn’s survival team and keep us on track with all her labs, results, shots, appointments, general health concerns and inform Wrenn’s new Virginia doctors. Wrenn was the first double lung transplant recipient to come to St. Louis and NOT leave within those first three months. So the team really had a chance to watch her steadily heal and developmentally grow. Back in July, Dr. Michaelson had said that they weren’t yet ready to cut the umbilical cord and neither were we. Sometimes life gives you a push and you know it’s time to move forward. We all feel as far as Wrenn’s health goes that we are leaving at the perfect time and on the best note: Perfect. 



Donna and Wrenn 


Laura was the transplant coordinator we initially spoke to when Wrenn was diagnosed in Orlando. She also gave us the news that new lungs had arrived. Donna saw Wrenn in Clinic those first couple of months from January-March. She has watched Wrenn grow and thrive from each appointment and shakes her head in amazement as to her progress.


Wrenn and Laura. You can tell that Wrenn loves her team and is always smiling!

The next person we visited was nurse Niki. She is partners with Dr. Rosenbaum and the Palliative Care team for our family. Niki talked to me and baby Wrenn almost every day in the NICU-- ON weekends and weekdays. She was my (sanity) guardian angel and we got to know one another very well. When I was in Orlando I had so many people to talk to on a daily basis because Wrenn shared a pod with three other babies almost all the time.  (I had a respiratory special and two nurses to talk to at all moments of the day). I got to know everybody on the day and night shifts very well. In St. Louis Wrenn was in a private room and the nurses stayed outside of her room for the most part—so I found myself very lonely in a cold dark room. My visitors kept me sane and even if we didn’t talk about Wrenn or the hospital, we were TALKING and that made my days much better. I am thankful for Niki and so glad she saw Wrenn at her worst and can now enjoy Wrenn at her best!



Niki and Wrenn


Next we were off to 7 West. 7 West was a frustrating part of post-transplant but the people there were wonderful. Carol was our head person of the unit and I swear my daughter gave her some gray hair.  Carol was heavily involved in Wrenn’s care and did anything for our family to make things a little better as we waited for Wrenn to heal. Every complication was a rollercoaster we ALL rode and we ALL wanted off so bad. There were three babies total in the unit at that time all within a month apart in age and basically Wrenn was taking all of poor Carol's attention. And then some of the other babies would act up and poor Carol had to act fast—but always did so with compassion and empathy for the families. At one point Wrenn had two rooms; one at the CICU and one at 7 West. This was very confusing for Wrenn's visitors who would see an empty bed, only to be told we were currently on the other side—I used to joke that Wrenn had a WINTER home and a SUMMER home. Humor was the key to my sanity many days and you have to know how special your child is to have TWO rooms in a hospital after all.

The 7 West team taught me how to care for Wrenn when she came home, ordered all our medical supplies, taught me how to draw meds, charted out her medication schedule, and held our hand whenever we needed it. A special department that teaches families how to care for their special kids; What a great thing!

The last person we saw was Wrenn’s home nurse, who was probably the person who gave me the most confidence that I could care for my daughter without any additional help. She taught me how to draw blood, order supplies, check Wrenn’s oxygen levels and organize the medications. December to March was a HUGE learning curve and not everybody does well with new challenges. My biggest hiccup was NOT liking blood and/or treating fleshy things like Wrenn’s G-Tube. As a non-medical parent I could now probably talk my way into nursing school with all the knowledge I’ve obtained from Wrenn's home nurse, Deanna. Watching someone do things is one thing but when they DEMAND that you do it while THEY watch is a whole other kind of pressure. Nobody likes to do things they aren’t comfortable with and having to be perfect at it makes it even harder when this little person is counting on you to get it right each time. Too many mistakes and you can cause some serious issues. Deanna gave us the confidence we needed to survive those first three months after taking Wrenn home locally. We will miss her but know she’s just a phone call away.



Wrenn and Deanna


I started this blog entry the day before leaving St. Louis but now I sit in my bed at my new house in Virginia. It’s strange being back home and it’s even stranger being in a house. We lived in a two bedroom loft in the city for a year and the Ronald McDonald House for three months. St. Louis became my new home and I felt safe there. I was living in a bubble that consisted of going from my loft garage to the Children’s hospital garage. It was safe, routine and comfortable. It was just the four of us for everyday life and our medical team. No family—no friends. Now I have all these people involved in our lives daily and it’s a bit scary. Our kids are exposed to many more germs and people coming and going. We have new doctors and new offices to visit. We have to locate a new lab to draw blood each month. We have to teach our families how to feed Wrenn and react to a stressful situation should we leave her in their care. Even though our families have spent time with our kids over the last 4 years, they are new to our situation as we try to find a NEW daily routine in a place we only knew prior to having children. Tanner is still adjusting to a sibling, who takes up a lot of mommy and daddy’s attention. So despite the fact that he has family nearby he still demands attention from mommy and daddy. It will take time for him to trust new people in his life and will have to be given time to make his own choices when he’s ready to welcome them in. Wrenn loves people, despite all the torture she went through in the hospital, and so we have to continually hold her back from being such a free spirit at times and already find ourselves asking the virus questions. "Have you been sick, or around anybody who’s been sick….."

A new neighbor dropped by to meet us and when her child touched Wrenn’s hand I immiatedly panicked as I grabbed my pocket for hand sanitizer. I told her Wrenn had had a double lung transplant and was doing well but I didn’t give her the entire speal about our fear of viruses,etc. I was afraid my neighbor would never make eye contact again and I’d scare her off for good. As a family we have to learn how to survive as an un-normal family in a normal family neighborhood.  

All new people are coming into our lives and I find it soooo overwhelming. Wrenn may be ready to be here but I’m not sure I am. I felt safe in our little St. Louis bubble and now I feel like I’m losing control and can't keep up. Although I know we have support I already feel some pulling and tugging and I’m just not ready to deal with it all. It’s uncharted territory and my entire support system I knew is back in St. Louis. I have to learn how to work with my new support system and even though I’m sure in a few months it’ll all be great—today I feel very stressed as everything around us has changed.

After moving everything into our new home we had a week of downtime and doctor appointments (the pediatrician, the pulmonogoist and lots of paper chasing to medical companies). Luckily, we had some business to attend down in Orlando and our friends, Jen and Joe had given us their timeshare to use at a resort for the week. I have to say, this was something I needed more than anything else in the world. There was so much dust from moving and just stress in general while trying to get my 'act' together that I really just wanted to crawl under a rock. So, we drove to Orlando and I found a nice, sunny rock there. It was truly what the doctor ordered. My asthma is better, Tanner was given a week of pure fun and Wrenn got to avoid winter weather. We visited with our friends, went to the pool, saw a 3-D movie, walked outside and breathed in the air and just chilled.


Wrenn and Tanner with EARS. Doesn't her smile say it all?  




The family photo at Harry Potter : Thanks Uncle Art & Elaine for the awesome park passes!!!  


Thanks Lee & Dawn for everything--we really enjoyed visiting with you both!!! xoxo

Our Winnie Palmer angels got to see Wrenn for a quick visit. It's always great seeing these folks who continue to be such a support sytem for our family and Wrenn. They loved seeing Tanner who has grown so much but continues to challenge us each day. 


Julie from Winnie Palmer with Wrenn

If you've been following our blog since the beginning, you are probably upset Uncle Collin forgot his 'pretty flower head band'.   




Wrenn loved seeing Dr. Hardy.



Halloween: Although Tanner ended up wearing Buzz for trick-or-treating. 
Thanksgiving was such a strange day for me.  As I sat at the table with both our parents I couldn't help but recall that moment last year in the hospital.  We ate a separate times in the hospital while Wrenn had another challenging day.  I was so moved and thrilled to be sitting in a home, with my family, at our own dining room table with everybody under the same roof.  I found myself quiet at times as I stopped to reflect and remember.  As always, I don't want to go back!

Updates on Wrenn:  She is getting smarter everyday.  She climbs up and down the stairs like a champ.  She does more signs to communicate and DEMANDS attention like never before.  She actually gets jealous of Tanner now and lets you KNOW she's not happy about it.  She loves putting everything on and over her head like clothing, hats, glasses, blankets, etc.  She is a ham and loves posing for photos.  Her favorite toy continues to be the remotes.  She is getting better at eating and has discovered blueberries and salad.  She runs, dives and is fearless in everything she does.  (Stress I tell you!)  I am already scared about her teen years to come!!

Tanner is adjusting.  He was pretty freaked out when we started packing up his toys back in St. Louis and didn't understand why we took away the TV (moved it into the U-Haul) and so this change has been stressful on him.  Socially he's a bit behind and hasn't been exposed to normal things like a real neighborhood with other kids to play with.  And sidewalks.  And cars crossing the road where he plays.  He got used to a certain life like we did and so he's dealing with all the new like we are.  He plays very well with Wrenn but we have to watch him like a hawk.  He has a nickname for his little sister and I'm not even sure where he got it from but he calls her 'Candy Wrenn'.  It's his little name and so it's even more special in my eyes.  Maybe he feels she's sweet like candy.  Whatever the reason it's one for the babybooks. 

As we approach Christmas I find myself extremely blessed by the people who continue to walk into my life.  My little angels I call them and I have so many it's almost hard to believe.  I am so thankful every day for the good days and ask for so many more.  I noticed the other day when I was at my kitchen sink and looked out the window that there were several cardinals in my backyard.  I smiled and felt like a piece of St. Louis had followed us here and suddenly I didn't feel that far away from home.  As odd as that sounds, St. Louis has for many reasons stolen a piece of my heart.  It's nice to know you can leave a place, yet some things are just as familiar.
  
xoxo Nicole

A few familiar faces. 

  

As always we live in a bubble but with one foot out. Taking precautions is a must. 


Now THIS is the life! A little Butter Beer to make it all better! :)
 

Sent in by Nicole 10-18-2011

Today I spoke to third year medical students at Washington University. The class is learning about palliative care and our journey with Wrenn. I enjoy telling our story and answering questions but it’s always such an emotional roller coaster going back. And yet Dr. Rosenbaum prompts me to look into the unknown, which is, after all, the point of the speaking engagement—where we will end up and how our family plans on dealing with Wrenn’s long term care.

I did a better job speaking this time. I think it had to do with the fact that everybody in the room was wearing a white coat. I'm so used to communicating with doctors on both a professional and personal level that I felt more at ease. It could be that a couple more months have passed and I'm much stronger now--even though I shed a few tears it was easier to gather myself. I also felt better prepared and hope that each student took something away from our meeting. Unless these students have lived on both sides they can only imagine what goes on with a family when dealing with a chronic illness.

We were somewhat blindsided in September but we have rerouted our negative events with positive news: Last Monday Wrenn had all of her lung function tests done; her ONE YEAR post-transplant examination. 

The day started out at 7:30am-- labs, then clinic with the transplant coordinator and the pulmonologist, and then physical therapy with Rebecca. Her pulmonologist shook his head and watched as Wrenn jumped on the table. We all discussed where we were one year ago--facing issue after issue for 3 months straight. They are cancelling her physical therapy sessions because she is all caught up. We all knew at that moment how lucky we were to see her so healthy and thriving. She is one of the lucky ones. After a quick lunch we were off to the Ambulatory Procedure Center for an x-ray and then Wrenn was sedated her for her Bronch, High Resoluation Chest CT & CXR, Ventiliation Perfusion Scan, Echo and Infant Pulmonary Function tests. While she was under they stuck her in four places to find a good vein for an IV. She did great with the sedation and by 6:30pm was resting at home. Tanner spent the entire day at the Sibling Daycare Room so we could focus on Wrenn's busy day.

While we waited for Wrenn we saw so many people who had worked with our family. In a way I couldn't have planned a better goodbye to St. Louis. We ran into her surgeon, Dr Huddleston, who is leaving Children's and going to a nearby hospital. I already told our transplant team that should Wrenn need additional surgeries we'd be following him, especially since he's done so many procedures on her and knows her best. He is an excellent surgeon and we feel her care would best be furthered with his expertise. Dr. Huddleston saw Wrenn for the first time since the transplant Christmas party. He peeked into the stroller and she looked up at him and started to cry. I felt so bad but I smiled and said, "ahh, isn't that sweet, Dr. Huddleston, she wants you to hear how great her lungs work." Of course he smiled.

Her G-tube Surgeon, Dr. Segura is leaving Children's as well. Even though we usually do routine check-ups as needed, he is part of our 'original' team and so I'm sad to be passed on to another colleague. He worked with Wrenn closely on her feeding issues and is always accessible via email for questions or concerns. I'm sure he will continue to follow her progress. 









Throughout the day we saw her Occupational Therapist Renee from the NICU, some of our 7 west team, the chaplain who spent many days listening to my woes and a primary nurse who now works on the transport team. It seemed as though everybody from the beginning was there to see how well Wrenn was doing and to of course say goodbye. I have about 7 more people I want to hug before I leave and will do so in the coming weeks. 

The following day, we arrived at the hospital at 6:15AM for her Bronch. Again she was sedated but they found the vein on the first try-thank goodness. The pulmonologist, Dr. Michaelson used a large scope for the procedure like last time and retrieved good samples. We were hoping for a call later that afternoon but the results had not come in yet.

Wednesday morning we headed to Virginia and while roaming the mountains of West Virginia the transplant coordinator called with the results; "So far Wrenn’s bronch, lung tests and bloodwork looks phenomenal," she said. "All the important results are in--only a few minor ones left. Miss Wrenn is doing great!" Those are the words I hope to hear for many years to come. What happens now is that we won't return to St. Louis (knock on wood) for six more months. We will have labs drawn and check-ups in clinic but there's a chance she won't have a bronch done if all looks great in the lung function tests. Without a lung biopsy we are never sure if rejection is lingering but the transplant team examines blood-work and symptoms to conduct a biopsy. In a way having peace of mind is worth having the biopsy done, otherwise we're left wondering if her lungs are getting worse. In a way I'm losing my security blanket and that will be another mountain to overcome--trusting again that all is okay. I remind myself what the transplant team tells me at each appointment: React to what is, and NOT to what might be. 



There is one man I never got to hug and I wish I had while living here in St. Louis. This is a story I've told so many people over the last twelve months and now I'm telling it to my extended internet family. My husband had been let go just two weeks prior to Wrenn's birth--luckily he had another job waiting for him in Virginia; a GOOD opportunity but as Wrenn remained in the NICU in Orlando and then when we temporarily relocated to St. Louis, the job had quickly disappeared. We then became part of the 'system' and just prayed that things would work out and that Wrenn would make it to transplant sooner rather than later.

As we approached early September 2010 Jason was offered a job by a man he had never met.  A wonderful man who gave Jason an opportunity in an industry with which he was unfamiliar. Jason was given a salary, but with flexible hours to learn a new business while spending time with his family in St. Louis. This job came at a time when our family was unable to even focus on finding work. Through all the stress we could breathe a tad easier while we continued down the rocky road. I have called this story one of our blessings. This man who put my husband on his personal payroll will never know what his kindness meant to us in such a severe time of need where our entire lives were falling apart before everybody's eyes. He did for us what so many people couldn't do-HELP! I will continue to tell this beautiful story for as long as I live because it is a story worth telling--the humanity and selflessness of this person (along with his team) is uplifting to other families who need to hear a story as they hit rock bottom. I tell them just when you have no idea how you're going to do it--BAM an act of kindness makes a terribly stressful situation just a bit more tolerable. I've seen that when one door closes, another one is sure to open. Timing is everything and good people have continued to enter our lives at different times to help us along as we continue our journey. To this St. Louis man, one day I plan on giving you a big ole' southern hug for what you did for our family. I promise to continue to tell of your kindness and thank you from the bottom of my heart for what you did for us. You blessed our family and I owe you more than you know!

Another blessing I'd love to tell you about along our travels here in St. Louis was also back in September of 2010. I was having a very bad day at Wrenn's bedside and I looked up and asked God to just give me a sign that everything would be okay--that Wrenn would be alright no matter how horrible things looked at that moment. It was around noon then, and I decided to get some lunch. I called down to the cafeteria and went to the break room but it was full. I then headed to the waiting room of the NICU to wait for my food and while sitting there a woman approached me; she said my full name and knew exactly who I was from this blog. She caught me off guard and introduced herself as well as her then two and a half year old daughter who had undergone a double lung transplant two years ago at Children's. The little girl was bouncing all over the NICU waiting room while chomping down a bag of Cheetos. She looked fantastic! I couldn't even comprehend what the mom was telling me as I stared at her little blessing who was playing with her twin brother in the seat next to me. Was this the sign I had so desperately prayed for? I decided it was. Just moments after asking, I felt as though I had received an answer. Call it a coincidence if you want but it gave me the strength for the next couple of weeks to fight as hard as Wrenn. From that point on I kept my eye on the prize because of that chance meeting and continued to ask for more blessings.

It is time to leave St. Louis. We can always make more money but if we lose our health we have nothing. I'll continue to tell these stories that we experienced here in Missouri as well as those we encounter in Virginia. I hope to inspire people to believe that when the sky falls the sun does eventually shine through. The ride for us continues but as long as I hold on real tight I know I can get through anything.

While driving back from Virginia yesterday I realized that it will all be okay. Even answers I don't have yet will come in time. Questions I have now will have answers when appropriate. And people who come into our lives will enter with meaning and purpose. Nobody will ever know what we endured here in St. Louis--maybe only those families who share the commonality of receiving a double lung transplant will relate or fully understand. I will continue to thank God for every single blessing because we have received many of them.

Wrenn is doing great in every aspect of her development. Tanner has also come around and has become quite the little helper and really adores his little sister. I believe we have been catching our tails and will continue to do so until December. I see January being a turning point for our family as a whole and feel the new-year will bring us current.

Once we arrive in Virginia the transplant team wants Wrenn to be seen by her new immunologist, pulmonologist and pediatrician. They want the new Virginia doctors to see 'healthy' Wrenn so they'll know at each appointment how she looks compared to that first visit. Needless to say our schedules are already getting busy. We will have to find a new lab at the Children's hospital in Richmond and new therapists who will come to our home. Switching everything over and changing to a new pharmacy is a ton of work. Just thinking about everything I need to do paper trail wise, appointment wise and insurance wise overwhelms me. I’ve made a list and just cross off each one as I get it all done. I will of course post photos and updates on Wrenn as both kids adjust to a new normal in another but more familiar state. Our extended family in St. Louis (the transplant team) and our extended family on this blog are very important to our family as we move into the next phase.

Sent by Nicole on 9/23/11
Two nights ago the kids were so wound up. Almost as if they knew this was a night for celebrating.  They didn’t even go to bed until midnight.  They were chasing one another on the couch, down the hall, wrestling on the floor and giggling like two normal, adorable little kids.  What a difference a year made for our family.  And then again, in some ways, not one thing has changed. In some aspects, we are right back where we started.  September was by far the biggest yo-yo month of 2010 and it continues to be our ‘interesting’ month this year as well.





This morning Wrenn was crying at 5:25am.  I got her from her crib and took her to the rocking chair and we cuddled for a few minutes.  I looked up at the clock on the wall and couldn’t believe what I saw.  At 5:30am a year ago, on September 22nd, we watched the helicopter at Children’s land on the building; Wrenn’s new lungs had arrived.  She was in the OR ready for her rebirth.  It feels like yesterday and I’m sure you would all agree time has flown.  Oddly enough, Wrenn usually sleeps through the night and so to wake up at that very moment took my breath away.  It was God’s way of saying, remember and now appreciate; and so I did.  I said a tearful thank you and remembered every second of last September's events.  And I asked that these perfect lungs be with her for decades to come.  80% of infants make it past the first year after transplant.  One hurdle—GO WRENN!

I called my mom this afternoon.  She said she’ll never forget my phone call to her and reminded me what I said to her in tears that special day:  “They’re here.”  It was probably all I could get out at the moment and I’m pretty sure there was dead silence after that.  I think it was the first time in many months I had actually inhaled a real deep breath.  One thing I knew—we couldn’t go forward without new lungs.

Needless to say I didn’t sleep very well last night.  So many emotions funneling through my mind.  So much to be thankful for and so much to appreciate.  I remembered saying last year after her transplant  that on the one year anniversary I’d write the donor family.  I didn’t think the day would come so fast.  I didn’t know what to expect at all during this first year.  Level two rejection? NO.  Seven broncs? NO.  Three additional months in the CICU and 7 West? NO.  My daughter eating and walking and giggling? NO.  My kids running around and chasing one another as if I had dreamt the entire last year? NO.  With so many unknowns, how could I possibly tell myself I’d be ready to write such an unbelievably hard letter in just 12 months time?  I figured back then I’d have the words but I still don’t know what to say or how to even begin.  In a way I’d be opening Pandora’s Box.  I don’t know the other family’s situation. Was this an abuse case or a horrible accident?  Are they ready to hear from me?  How are they remembering September 21st? I was told by my transplant family that some donors become VERY involved in the family’s lives and feel a real connection.  In a way I’m scared about what I might find out.  I guess when the time is right, if it’s ever right, I will know and will draft that difficult letter. Needless to say, I pray for them often.

Getting to know Wrenn...  One year post-transplant she is doing AWESOME! J  She’s eating food, sucking a bottle, walking, talking, singing, dancing, jumping on the bed, wrestling with Tanner and growing like a weed.  She’s 8 kilos and 28.5 inches long.  Her favorite food in the entire world is Tortolini.  Her least favorite food is green beans.  She loves wearing dresses, taps her head for a bow and is the happiest little kid when she awakes in the morning.  Her favorite TV show is the Wiggles and don’t disturb her while she watching or she’ll growl in protest. She plays peek-a-boo and uses her cuteness for attention.  She climbs the couch and follows Tanner around like a puppy.  They are best friends and watching their relationship grow makes me both happy and sad. When I wrote my last blog I explained that sometimes tears follow laughs and that’s why.  When we first chose transplant I worried so much about Tanner’s reaction to her diagnosis one day.  I worry how that will change him as a person and know he will be in great pain like all of us.  We pray every day that Wrenn goes the distance and we see her old and gray one day.  The way it’s supposed to be.

A few months ago I was approached by one of the genetic scientists at Children’s.  He said they think they figured out how to grow stem cells from skin cells and that they wanted to use Wrenn’s skin cell samples in their experiments.  They are very interested in her genetic make-up and feel she could be a key in finding a cure for ABCA3.  I signed a release form back in May and felt that would be a hell of a legacy for such a special little person to fulfill.  I have heard from some amazingly smart doctors that stem cell research is going to do fantastic things for medicine.  To be surrounded by such brilliant people excites me and I hope that Wrenn benefits from what is discovered in the coming years.

Last year, the night of Wrenn’s transplant, we went with our friend Billy to an Italian Restaurant called Zia’s.  We knew it was going to be a long night and were told to prepare for the fast part of the ride. This week our good friend, Joe is visiting from Orlando.  He joined us for dinner at Wrenn’s rebirth celebration, which of course took place at Zia’s.  It was a wonderful night having us all together.  Wrenn had picked out her own dress (white dresses seem to be her favorite) and had fun high-fiving us at the table and showing off her sweet smile.   

The biggest news I have to share is that we are leaving St. Louis. In mid-November we’re heading back to our home state of Virginia.  We always knew we were in St. Louis temporarily and I guess with our lease being up this past July, everything finally fell into place.  We will be heading into the unknown as we work out certain details but overall, we are looking forward to having our first date since Wrenn was born.  Babysitters are hard to find when you live in the city where you know nobody. Especially when you have a child like Wrenn, who requires tube feedings and is immune suppressed.  Long road trips are very hard and flying commercial exposes Wrenn and our family to too many viruses. Wrenn’s next bronc is scheduled for October 10th.  If all goes well we won’t have another one for six months.  Mostly, we are excited to leave our two-bedroom apartment.  It was a great temporary fix for making trips back and forth to the hospital but we’re ready to be together in a house again, with a yard, some much needed space, and a neighborhood for Tanner to play with the same friends each day.  I don’t feel the need to have all the answers but it sure helps to be on familiar territory while trying to figure it all out. 

Sent in by Nicole 8/25/2011
I went to write an entry into the blog two weeks ago and after I read it, I deleted it.  It was so sad, so choked up, so not me.  I had met with Wrenn’s nurse that day and it was a ‘when it happens’ conversation.  Even though Wrenn’s doing great today, I have been mentally prepared by the transplant team that it won’t last forever and that nobody knows her timing.  I think about it every day.  Usually after I laugh really hard I get quiet and shed a tear or two.  This is my reality; Jekyll and Hyde.  Psychologically I live on two rollercoasters and one brings me enormous joy but the other brings me such sadness I want to die. 
With those thoughts in mind, I realize that when people look ‘in’ they only see the good news.  The strides she’s taking, the place our family is at today and where we’ve been.  They don’t think about where we will eventually go.  I’m usually TOLD questions rather than asked, like “Tanner will be going to school, right?” My reply: “I can’t answer that today.  I don’t know where we’ll all be in 3 years.  I don’t know where Wrenn’s health will be at that moment.  If Tanner goes and gets her sick every week, which could lead to rejection, then no.  He will be homeschooled most likely, but I can’t say for sure.”  It’s a conversation every transplant family deals with, and each family and deals with it differently.  If we’re living in a super small town by then it could make a difference, but then again it might not.  What I realize is that my answers will be uncertain at times.  I don’t know if he will be able to attend every family function, or every birthday party, or always HAVE a birthday party.  I am aware now that I will be heavily judged regarding these decisions.  I am ready to answer for our family whether people understand our decisions or not.  We are the ones who have to live with our decisions and the causes and effects of how they play out.  It’s a really tough place to be, but it is a place we accepted upon transplant and we agreed as a family to change our lives for Wrenn.  We understand this commitment but I’m realizing most people will never understand what it truly means.   
(Editor's Note - I totally understand Nicole, and I will never question your decisions!!  -- Lisa)
I hate that summer is ending.  Wrenn got her first round flu shot yesterday at the pediatrician’s office.  It means going back into hibernation in a way.  When the weather turns cold it means she’ll be wearing a mask indoors and probably not eating out when we’re forced to do so inside a building.  We try to live inside the bubble but with one foot out.  The foot is barely out during the winter months because colds are not kind to immune-suppressed folks. 
Wrenn had a bronc back in December and that showed NO rejection.  The one in March was inconclusive, as was the one in June.  July's results showed what we all had hoped for -- PERFECT - NO rejection and she had no real complications.  Having rejection in the first year of transplant as a baby is odd and since she had level 2 rejection, this keeps the transplant team on their toes.  I think everybody needed to make sure she was really doing as well as she looked.  I have to say, peace of mind is nice until the next three months roll around.  I do start preparing myself for the next bronc just days beforehand.  The larger scope is not used much on babies because it takes up 60% of their airway during the procedure. However, Wrenn did great, even though they clipped a vein and she had internal bleeding, she was suctioned and they went back in and continued the biopsy.  Seeing her coughing up blood was scary but the doctors and nurses said she’d be fine at home; and she was! My little trooper!  Something worth mentioning; it took three nurses to get her to lay down at put her to sleep for the procedure.  They said she’s a tough cookie and certainly puts up a fight!


There is so much to say about my little feisty girl.  She is walking like a champ! She is babbling and she is a pro at signing. She definitely WANTS to communicate.  When she was in the hospital, not a day went by where she didn’t listen to music.  I guess that worked out because she loves when anybody sings and it immediately calms her down.  She adores her little bunny and puppy and can’t fall asleep without hugging them, petting them and rubbing them on her face and mouth. It is a soother and she had them in the NICUs for months.  Wrenn loves to eat any type of Italian food.  She doesn’t like sweets very much but eats ALL the time.  She is finally asking for a sippy cup and doing great.  She’s still not able to drink enough to get all the calories she needs, but she loves water and now sucks, which is HUGE.  After I put an outfit on she taps her head, waiting for me to place a little bow on top.  She takes it off and looks at me like, “Mom, I want to put it on my own head, OK?”  I am amazed every day how much she has learned in her short time with us since December.  She dances to music, repeats what we say, fights for toys with Tanner and has proven without a doubt, she’s here to stay and WANTS to see the world. She is just like Tanner, FEARLESS!  She’s a climber.  She likes to stand on chairs.  She thinks it’s cute to do daredevil things and even if she falls, she gets up and does it again.  I have to keep the chairs hidden away in the other room (which isn’t easy in a two bedroom apartment).  She loves to ride the electric jeep with or without Tanner.  The photos and videos of them together are adorable.  They are a heck of a team and they basically give me heart attacks every day as I try keeping up with them. 
Mostly, I’m shocked at how happy Wrenn is.  She’s just approaching the world as if it’s hers for the taking.  She wakes up happy, plays happy and then fights going to sleep.  After all, she slept for nearly 9 straight months.  She’s raring to go! 


She has speech therapy twice a month, PT twice a month and OT once a week.  She’s a busy girl and excels. At our last clinic appointment, the day before the bronc in July, I held Wrenn on the table as Dr. Michaelson examined her.  I looked at Donna and said, “Is this normal?”  Wrenn was trying to jump, walk off the table, clapping, laughing, babbling, making goofy faces and just being a cute, normal and mischievous.  I got the impression from their response to my question that Wrenn is a rarety.  She is full of life, has done very well developmentally and that we are truly witnessing a miracle each day. 
Tanner is still adjusting to a sibling.  It’s not easy and we try to give him enough attention but sometimes it doesn’t seem like we’re doing enough.  What I have noticed is that everybody has been effected from the last 16 months.  For all of us time stood still in that one year.  Tanner was just over two and to be honest, I can’t remember much of his development from 2-3.  For me, turning 40 was a blur as well.  Life stopped and is finally picking back up.  Tanner was so good during those months we needed him to be an excellent little boy but now I’m seeing more of the terrible 3’s and the effects of everything he’s been through.  In a sense, we are chasing our tails right now. I am hoping by January we’re all caught up.  My pediatrician agreed that things like his pacifier habit and potty training are not important with all we’ve been through.  Right now he just needs attention and bonding time with Wrenn.  Everything else is just a chore and our family still needs down time. 
We took a quick surprise trip back home to Virginia to see our families.  During our visit I went to my parents’ church, St. Michaels, where Tanner was baptized and where many people have prayed for our family in the last two years.  We walked in and my mom announced that this was Baby Wrenn, the miracle baby that everybody had heard of and prayed for, for so long.  I turned around and had tears in my eyes, so excited for them to see her in the flesh.  I wanted to say ‘thank you’ but knew I’d lose it past that.  I think every day that I will be strong in telling her story without becoming so emotional but I’ve decided to accept that I probably never will. To that congregation, your prayers and support for our family has been amazing! Thank you!
I have met parents who were waiting on transplant and their babies did not make it.  It’s so hard to see them go through the wait and then the loss.  We could have been in their shoes very easily.  We were so close on many days and for them my heart breaks.  I hope they continue to heal and our prayers are with them!
Wrenn’s next bronc is scheduled for October 10th.  Until then, thank you for your continued prayers, emails and stories you have shared with our extended online family.  You’ll never know how much this blog has meant to me in our daily lives.
Xoxo