One Year

July 3, 2013

As I sit here at Texas Children's Hospital waiting for discharge orders & paperwork, I could not help but go back in time to one year ago today. Right about this time, I put on my make up and checked in to the hospital to welcome our 2nd little bundle of joy. Was it a boy? Was it a girl?  We didn't care just as long as the baby was healthy and happy. Well, we got HAPPY!  As for healthy, we quickly shifted gears to begin life smack dab in the middle of Plan B  -- Who knew?!?!?  It has been quite a year of blessings and here are a few things I have learned. 

 

A few things I have learned in one year...

If you and your gallbladder get crossways - evict said gallbladder at the first chance you get. 

Take a multivitamin everyday. 

There is no better hometown on earth than Jasper, Texas. You are full of amazing people with BIG hearts. I am SO proud to call you home. 

You never get too old to need your Mom.

Music is good for the soul. Turn it up and sing loud. 

Even at 40 years old, there is still a lot left to learn. 

Sisters know what you need - even when you don't know yourself. 

Put on your boogie shoes & dance a little everyday. A dance party will make you smile everytime. I Promise. 

Talk less & listen more. 

You never get too old for your faceto break out with zits. 

Get some chickens - they are just plain fun to have around. 

Be more honest - you owe it to yourself and others. 

Life IS complicated at 6 years old. 

Country life beats the city life any day. 

You just can't beat a tall glass of sweet tea. 

Trust your "mother" instinct. When you think something "just isn't right" - chances are you are right. Go with your gut. 

It really is a small, small world. 

I love him more after 16 years of marriage than I ever dreamed I would. Rodney, thanks for asking me to play ball 17 1/2 years ago. This life has been better than any world series game. 

You never know how strong you are until you fight for your child's life. 

Write down your thoughts - it is therapeutic. 

Be real. Be transparent. Be present. 

You can do things you never dreamed you can. 

Cupcakes make everything better. 

What cupcakes can't fix - good friends, good family, good nurses & good docs can fix. 

Sometimes life stinks...so get a good deodorant. 

There are amazing people in this world that you have not even met yet. 

Wear comfortable shoes. Life is too short for blisters & bad feet. 

Take good care of yourself - somebody is depending on you. 

I have missed the river & the river has missed me. 

Breathe deep. Really deep. Really often. It clears away the fog. 

It is ok to be alone. 

Don't be afraid to share what you are thinking, even if you can't find the right words. The person listening loves you and knows your heart even without the right words. 

Recycle yourself - become an organ donor. 

Friends and family will meet needs and show love to you in a way that no one else can. The oldest and dearest friends return when you need them the most (even if you have done a crappy job being a friend to them). 

Plan B is not always a bad thing. In fact, the  "Plan B crash course" has taught me a lot over the past year. 

God is greater than any fear that you may have. When you think you don't have what it takes, He shows you that HE is more than enough. HE is able. Trust Him. 

And last, but certainly not least ...

You can be happily at peace in the midst of Plan B. 

³ You will keep him in perfect peace,
Whose mind is stayed on You,
Because he trusts in You. - Isaiah 26:3

Happy Birthday PARSON BLUE

Super Sunday

We had a great day today.  A Super Sunday. Parson is still making steady progress. Sometimes pictures just capture a day better than words. 

Big sister came to visit today and fed Parson some yummy carrots. 

Big sister is SO silly. 

Daddy's girl

Happy baby, Happy Mom, and Happy socks. 

Par & her nurse - Sheba

Cousin Tori & Darby excited to be headed on a mini-vacation

Who ate a whole jar of baby food today? This girlie right here!  Mmmmm pears. 

Par likes to "Keep Austin Weird."

Par & her BFFnurses Adrienne & Nicole

Good night Austin, Tx. It has been fun!  

Give thanks in all circumstances; for this is the will of God in Christ Jesus for you. - I Thessalonians 5:18 

Two weeks out.

Two weeks out from getting new lungs and this kiddo is making great strides. 

She has been on a trial for over 36 hours now where she is initiating all of her own breaths. They have weaned her oxygen support down to 25% (room air is 21%) and she is getting oh so close to weaning from oxygen and ventilator support. She has accepted all challenges with smiles so far. 

Parson had a BIG day yesterday as doctors and occupational therapy agreed that she could try baby food for the first time.  The trial was an amazing success and so far bananas, applesauce, peaches and carrots are Parson approved. 

Mmmmm Carrots.   A glorious mess. 

Doesn't every girl wear gold beads when trying baby food for the first time. Thanks for the food Cara & thanks for the beads Amanda. It was a great day to be Parson. 

As the doctors rounded this morning, I asked them to repeat a phrase that just never gets old "Parson is an 11 month old female with Filamin A deficiency that is status POST TRANSPLANT."  It is the "status post transplant" that gets me every time. Because for so many months of rounds before it had been "awaiting transplant." What a difference two weeks makes. 

"Rejoice in The Lord always; again I will say rejoice. Let your reasonableness be known to everyone. The Lord is at hand; do not be anxious about anything, but in everything by prayer and supplication with thanksgiving let your requests be made known to God. And the peace of God, which surpasses all understanding, will guard your hearts and minds in Christ Jesus"- Philippians 4:4-6 

Because of the amazing gift of our donor, Parson is breathing easy and so is her Mommy. Patience has never been my forte' but I gotta give full credit where it is due. I wasn't patient in the flesh - not one bit - it was only possible through prayer and the presence of God in my life. Now don't get me wrong, I will never forget the long nights waiting and watching as Par struggled to breathe.  Thanks to Him, He allowed me to get pretty good at the patience thing.  I have experienced peace like no other - only from Him. Now that we are on the other side "post transplant", I have enjoyed a different peace. The peace of progress. The peace of meeting new milestones daily. The peace of a happy baby that can now breathe. These last two weeks POST TRANSPLANT have been, oh so sweet and peaceful. 

Peace I leave with you; my peace I give to you. Not as the world gives do I give you. Let not your hearts be troubled, neither let them be afraid. - John: 14:27

My other little warrior, Darby, survived sight words & kindergarten and is enjoying her first real summer. She hasn't slowed down yet and has traded in her school clothes for a bathing suit. She is most happy underwater. 

Darby gives a thumbs up to summer 

 

Another glorious mess. 

Darby & O'Riley are loving summer

Par's buddy, John the firefighter, sent her this cute onesie and she is repping for the Houston Fire Department today.  We love those brave men in uniform. 

Get ready Peachtree, we will be bringing our "Peace Love and Parson Blue" show  on the road soon. Peace out! 

The Little Engine

I think I can. I think I can. I think I can. 

This little engine CAN!  It is crazy how fast Parson is progressing and you gotta know that this Momma could get used to days like this.  

She slept all through the night last night. Can I get an Amen? (Maybe these new lungs have gotten her out of her newborn sleeping habits!) Woohoo. At 8 this morning, the team deflated her trach cuff and she is able to make sounds again. They also started her on a cpap trial and the little fierce one made it 12 HOURS. She did all the work breathing on her own. As I write this, she is snoring up a storm and I am enjoying the sweet sound of her little voice - (even if it is snoring).

If all goes well, the plan is to decannulate (remove the trach) next week. Then possibly discharge sometime the following week.  We will remain here in Houston until the end of July for sure.  During that time, we will move to the Ronald McDonald house just a few blocks away from Texas Children's.  I absolutely cannot believe we are talking about going home. Can I get another AMEN? 

This is my "Auntie Super Sheena".  She is the respiratory therapist that came to my rescue in the ER back on the night of Sept 27. She is a baby whisperer. Me and Sheena go way back. 

This is Erin, the transplant coordinator who was "on call" and literally worked night & day to get my new lungs. Erin, you did a GREAT job!  We love you  - best wishes on your new journey. 

My GeeGee came to see me today and I had lots of smiles and even sang along with her silly songs. 

It is bedtime for me -- I am going to turn in early so that I can rest up to keep up tomorrow.  

Broken Record

I sound like a broken record, but you all must indulge me. I gotta say it again -- Parson is doing GREAT!  She is smiling non stop & kicking her feet non stop too. I just cannot believe how quick she has improved. She feels SO SO much better. I have a feeling the fierce one is going to be making up for lost time very soon. (I am about to be really busy and I can't wait! )

Parson had a bronchoscopy this morning     where the physicians send a teeny tiny camera down into her lungs to check on things.  It was very cool to see -Everything looked GREAT. The new lungs are healing well and all pink & healthy looking. Yes!   We have one little hiccup - Her PICC line that is used for medicine infusion & blood draws is not working properly, so we will address that tomorrow when she can get on the schedule to go downstairs and have it rewired or replaced.

It was moving day today.  Late this afternoon, we took a field trip back upstairs to PCU (progressive care) to reunite with our old friends. We were so sad to leave our PICU family, but very excited that things have improved to the point for us to make the move. I have got the cutest roommate around since I get to room-in with Parson.  Oh, happy day- Momma also gets my own bathroom and shower. 

Thank you so much for the prayers that have carried us thus far. God has been so faithful day in and day out.  Please add a prayer that Parson's mom will be able to keep up with her. :) 

"I have loved you with an everlasting love; therefore I have continued my faithfulness to you." - Jeremiah 31:3

Working on some new teeth

Sitting up like a BIG girl (with assistance)

Parson loves it when Ola (respiratory therapist) brings his song & dance show to town. She is crazy about him. 

Darby with Parson's "medicine bouquet"

Just can't get enough of this pic - All smiles here  

Facts

I know for a fact that he was called by the critical care team 4 times in one night, (when he wasn't even on call). I know for a fact that he has met us in the emergency center twice when my child was in crisis. I know for a fact that he worked 8 weeks straight without a single day off -and saw my child EVERY one of those days. I know for a fact that he answers his personal cell phone anytime I have ever called. I know for a fact that he has stood at my child's bedside and adjusted ventilator settings for hours at a time. But even beyond all of that- I know for a fact that he saved my child's life. 

Our family first met Dr. George Mallory on October 2, 2012. I will never forget the meeting that took place in PICU bed 19. Just a few days before, we had arrived at the emergency center with our 2 month old daughter, Parson, who had a cough accompanied with respiratory issues.  In those few short days, her condition worsened and the brilliant team of physicians went to work to determine the source of her problems. The team made quick work out of testing to determine that she had periventricular nodular heterotopia with a genetic mutation of filamin A. Bottom line is that her lungs did not function properly. Before the diagnosis had even sunk in, Dr. Mallory introduced himself as the head of the lung transplant program and explained that we would be spending a great deal of time together in the future. 

Boy was he right. In a very short time we quickly learned about the role of a pulmonologist, about PVNH, filamin A and without a doubt that we were in best hands possible with Dr. George Mallory.

Parson's disease progressed rather quickly and we were so very fortunate to have Dr. Mallory on the case. He quickly built a great relationship with our child's pediatrician and both worked tirelessly to answer every question and provide information about day to day care and what to do in the case of an emergent situation. 

The timeline of Parson's life from 2 months to 7 months was a very long, stressful period with many fearful moments. Dr. Mallory provided careful and confident instructions about her care. At 7 months of age, she was readmitted to PICU in respiratory failure. The Kangaroo Crew flew us from our home emergency center back to TCH. Since that time, Dr. Mallory has orchestrated every move related to her care. On June 8, 2013 he led the TCH team in performing a bilateral lung transplant for Parson. He along with surgeon, Dr. Jeffrey Heinle, and his surgical team were modern day miracle workers who allowed my daughter to breathe easy for the first time in her little life. 

Parson is now 4 months post transplant and at home for the first time since Feburary. As excited as we were to leave Houston, it seems so bitter sweet to leave a very important part of our family behind at Texas Children's. Dr. Mallory, we are so honored to have met you one year ago.  Thank you for orchestrating the precious "gift of life" for Parson Blue. I know for a fact that we consider you a special member of our family.  

Dr. Mallory,  "I thank my God in every remembrance of you." - Philippians 1:3

Life is Good

From Parson...

They weaned my IV meds again today - I am doing SUPER. I smiled ALOT. I played with my big sister. I kicked my happy feet nonstop. I smiled alot. I had a 40 minute CPAP trial where I breathed on my own and I showed off a little bit. I smiled alot. My Texas Children's fans all keep dropping in to see how good I am doing. It makes the nurses and doctors SO HAPPY to see me smile.   Oh, and I never took a nap all day - naps are for sissies.   Life is good. 

Another great day 

Darby giving Parson her medicine

Daddy's Girl

Ah yes - All together now !

The Blue (eyed) Crew

Hey kids...

Brushing my teeth.... I got this. 

Silly girl & silly nurses 

Giving Kari a makeover - (drawing on the glass door)