Living Our Lives

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.)

August 2013 Update

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 1^st.  This blessing made her 3^rd birthday (April 14^th) 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.’

   

   

 

The Road to St. Louis

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

So Long September

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 23^nd)  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 7^th 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 1^st 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! LOL

Wrenn’s two year re-birth (when she received her new lungs from that wonderful donor) was September 23^rd.  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