Friday, April 15, 2011

One Year Old


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



A year….

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

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

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

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

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

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

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

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

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

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

Yesterday I bought Wrenn a new baby journal.  Tomorrow, on her one-year birthday I’ll write the first entry: 
 “Happy Birthday, Miracle Baby.  Find a reason to laugh and smile every single day and you’ll live a long, happy life. Your Guardian Angels will be with you forever!  You are the bravest little person in the world and your journey has just begun.  Always surround yourself with people who love and respect you and are genuine in nature.  Love, Mommy, Daddy and Big Brother Tanner.”

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

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

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

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

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

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

This afternoon we sang happy birthday and Tanner helped Wrenn open presents.  He was very excited about the cake, which he eyed all day yesterday and I swear his last words before drifting off last night were ‘birthday cake’.  He especially liked Wrenn’s crown, which he tried to place on her small head several times but it didn’t fit, so HE wore it instead.  They both loved playing with the balloons and Wrenn couldn’t stop belly laughing as Tanner threw them in the air, entertaining her for hours.  
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I never thought this day would come.  A year ago I couldn’t think past the day I was working through.  I also visualized a very different Wrenn back then.  I never expected her to be so bright, alert, feisty, healthy and free of oxygen, tubes and wires.  With what she went through there were very serious risks and somehow she escaped them all.  We are in a very different place than we were one year ago.  In this scenario, I wouldn’t want to go back.  Life-is-perfect!

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Friday, April 1, 2011

Everyone Has a Job To Do


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

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

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

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

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

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





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

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

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


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


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

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

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


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

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

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

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


 

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