Monday, June 24, 2013

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 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. 

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

Sunday, June 23, 2013

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 

Saturday, June 22, 2013

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! 

Thursday, June 20, 2013

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.  

Tuesday, June 18, 2013

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  

Sunday, June 16, 2013


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

Saturday, June 15, 2013

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)

Fishes and Loaves

You must trust me, it is not lost on me. 

This time three weeks ago, on June 7th, I waited with anxious anticipation to learn if my daughter would get her second chance at life. We had lungs!.... But we also had bad weather and the procurement team could not travel.  Ugh. We didn't have lungs after all. So I prayed and cried all night long hoping that the lungs would still be viable at first light. I mean after all if our team could not get there in a reasonable time frame, they must move to the next waiting child. 

The Texas Children's Lung transplant team worked all night with the LIFEGIFT team to maintain the donor lungs. It is absolutely mind boggling to consider all of the details that must be worked out to procure one single organ. Everything must be set on the donor end with airport take off/return flights, surgeons, operating room times, and the procurement team from LIFEGIFT.  In addition, all of that must take place on the transplant recipient end as well.  I watched and waited as nurses hustled to give pre surgery meds, draw blood tests, coordinate with doctors, doctors coordinate with anesthesia, anesthesia coordinate with the OR team. It is amazing to me that the details can ever be coordinated effectively. Somewhere at the donor hospital, nurses are gracefully caring for a child and family that have suffered immeasurable grief and tragedy. The nurse/doctors are also working to coordinate with the organ donor organization to procure the organ. (In our case, the lungs). And there could be so many more people involved if there are more than one organ involved. 

With the work of the Texas Children's lung transplant team and LIFEGIFT, our miracle arrived on June 7, 2013. 

One week later, I saw a miracle unfold from the complete other end of the spectrum.  A two year old little girl was admitted to the ICU in the room next to Parson. She was the victim of a "NAT" - non accidental trauma. She was essentially brain dead on arrival but the team would work to save her life if at all possible. When all efforts failed, the family was approached about organ donation. The family decided to donate her organs and LIFEGIFT began the process of transforming this tragedy into a miracle for three waiting children. Her heart, liver & kidneys would be the miracles that three families were waiting anxiously to receive.*

I approached the LIFEGIFT team and invited them in to see what donor lungs looked like one week later. They were appreciative and thankful to see Parson SO alive as she kicked her legs in the air nonstop. I asked if any of them were involved directly in our miracle and I was so fortunate to meet Corey Franklin the donation recovery specialist who recovered Par's miracle lungs.  He explained that he spent the night in the airport waiting in constant communication with our transplant coordinator. They talked off an on throughout the night and made arrangements to procure Parson's lungs as soon as weather permitted.  Corey then made the flight to get Par's new lungs.  Wow - this guy leads a wild & crazy life.  He has spent the past two Friday nights as a real life miracle worker. ("Donation recovery specialist"  and "transplant coordinator" just do not seem to be proper titles - I am thinking "miracle worker" is a better fit for both.)   

Really, I was an emotional wreck watching it all unfold. Thanks to the amazing gift of a donor family, there I was  sitting watching my daughter's chest rise and fall with the blessing of her new lungs -- while in the next room a precious little girl was being prepared to go to the operating room as a donor. 

While completely lost in my emotions, I watched as surgeons, anesthesia & LIFEGIFT coordinated the miracle in the room next door. My mind kept going to the story in the Bible when Jesus fed the five thousand. I know it is a crazy connection, but so VERY real to me in this moment of a miracle unfolding. I went to the scripture in Matthew 14:13-21 to read it again. So fitting. This is fishes and loaves happening right before my very eyes!  I especially love the fact that the disciples tried to tell Jesus how to run the show in vs. 15, but Jesus said "hold up" I have got a greater plan. He fed the multitude with a little boy's lunch AND had leftovers. THAT is what I am talking about. Fishes and loaves. Here lies a little girl who has suffered at the hands of another, but God says, "hold up" I have got a greater plan. For the firsttime in her little life, that child may have felt peace and three other children will live because of her. THAT is fishes and loaves. 

The disciples told Him that they didn't have enough food to feed five thousand. I told Him that there was no way the donor lungs would still be available that next morning. But He said "bring them here to me" I have got a greater plan. [Deep Breath] Whew, three weeks later, I am sitting here by Parson's bedside as she sleeps staring at my real life miracle breathing easy. THAT my friends is fishes and loaves.... AND the good news is that there is plenty of left overs for you too. 


Now when Jesus heard this, he withdrew from there in a boat to a desolate place by himself. But when the crowds heard it, they followed him on foot from the towns.  When he went ashore he saw a great crowd, and he had compassion on them and healed their sick.  Now when it was evening, the disciples came to him and said, "This is a desolate place, and the day is now over; send the crowds away to go into the villages and buy food for themselves." But Jesus said, "They need not go away; you give them something to eat." They said to him, "We have only five loaves here and two fish." And he said, "Bring them here to me."Then he ordered the crowds to sit down on the grass, and taking the five loaves and the two fish, he looked up to heaven and said a blessing. Then he broke the loaves and gave them to the disciples, and the disciples gave them to the crowds.  And they all ate and were satisfied. And they took up twelve baskets full of the broken pieces left over.  And those who ate were about five thousand men, besides women and children. -- Matthew 14:13-21


Main characters AKA "Miracle Workers":

Corey Franklin, Donation recovery specialist of LIFEGIFT

Erin Wells TCH transplant coordinator that was "on call" and worked all night/day for Parson's new lungs

* Donor information mentioned above was provided through the little girl's Aunt. 

Friday, June 14, 2013

My face hurts.

Woohoo.  Today was another great day. No need for vecuronium (paralysis) overnight.  No episodes of vent dis synchrony. Got the last 2 chest tubes out. Weaned IV meds again with no signs of withdrawal. And went back to bolus feeds today.  The fierce one is making great strides.  

Parson sat up for the first time post transplant today. The "Happy Feet" are back and she has partied like a ROCKSTAR today. I am so stinking pleased with her progress, my face hurts from all the smiling.  

Par working with PT

Par working with OT. 

I am pretty sure that the weaning of  meds is gonna catch up with us soon and we may have a bad day coming, but in the meantime I am gonna party with my ROCKSTAR!  

:) Coming Soon ... Check FB  (Jennifer Sheffield Herrington)  for a video clip. 

Thursday, June 13, 2013

Happy Baby = Happy Mommy

Another good day for Parcy. First thing this morning, she had about 50 minutes of a pressure support trial where she did all the breathing on her own. Wow!  Her blood gas after the trial looked bad (high co2) so she is back on the vent in pressure support mode for now.   It was a really good start, but she is just not quite ready.  Given a little more time and less sedatives, she should do great. She got rid of 2 more lines today -- the Foley catheter is out and she also got her central line out.   The BIG news is progress on weaning her IV pain/sedation meds. The docs made a big step down on those and she seems to have tolerated the wean just fine without any withdrawal. Yes! 

With each day,  Parson is showing great improvements.  It is so exciting. Today she was much more alert and awake. She began to play for brief periods and even gave us a few tiny smiles.  Happy baby = Happy Mommy

Stay tuned... the smiley baby is coming soon.  (I just know it!) 

Wednesday, June 12, 2013

Parson Blue Express

Well, I was given a "gentle" reminder about patience and giving up control from our friendly pediatrician yesterday. He told me to "quit driving from the back seat"-- (Dang it --How does he know me so well after only 11 months?). Anyway, he told me to slow down, be patient and let the doctors do their thing. In time, he said that things would begin to progress very quickly.  Well, guess what???? Dr. Fidone was right again.  

I am once again back on a runaway train --but I am liking the the return trip much better than the one we took getting here. I like where we are headed and I am enjoying the stops & sights along the way. Parson is doing great - -I'll take a day like today - any day. I certainly can't drive a train, but I make a great passenger.  (If you see Dr. Fidone, make sure & tell him you saw me riding in the backseat - looking out the window - not driving.)

It has been a great day to be on the Parson Blue Express. It started early this morning with Dr. Mallory and Dr. Heinle agreeing that 2 of 4 chest tubes could be removed. They also said the catheter that had been in her belly for dialysis could come out as well. The surgery team said all of these are pretty painful, so this should provide some relief. (After seeing just how far the tubes were down in her little body -then sutchered, I can bet she is feeling better already!)  In addition to removing those 3 tubes, she also got to get rid of her femoral arterial line that had been in her groin. Small victories. Woohoo. The team was also able to take the first step toward weaning the heavy doses of IV drips. They were able to wean her fentanyl & versed today - first BIG step toward detox.  But better than all of that, Parson has not had a single episode where we had to bag her because her SAT's dropped. Guess she has realized that the new lungs are working!  

Choo choo - ALL ABOARD -- Parson Blue is coming thru!!  


The following is a guest blog from Darby and Parson's daddy.  He has been my SUPERMAN over the past 11 months....

Hi friends and family. Some of you out there we don’t even know, but we are so thankful for you. I’m sure you have heard about the amazing news of Parson successfully undergoing a full lung transplant on Friday June 7th. Words absolutely can’t describe what it was like when on Thurs night at 10:30 pm the transplant was called off because of bad weather, the dejection Jennifer and I felt, and then the elation at 6:30 Friday morning when our doctor said it was back on. And miraculously, the donor lungs had improved overnight, God knew what he was doing when he turned on that rain. The biblical metaphors of storm, light and dark are so appropriate here, it feels like these last couple of days are bright and brand new, full of hope and promise where those behind us were long, gray, and lifeless.


We are far from done with Parson, doctors are telling us it will be tough weaning her from the 9 or so controlled pharmaceutical cocktails she’s been taking daily. In addition, the shelf life on a set of baby lungs is around 7-8 years so we will more than likely do this all over again. And as much as we look forward to the day we can parade her around town and have all her fans over to the house, doctors are warning us that she will be immune deficient her whole life. This may sound like a downer, but for us it isn’t -- Our daughter is alive!!


I honestly don’t have the words to thank you all for the gifts, support, and time you’ve given to us over the last year. I’m deeply touched by those of you who took Darby, gave us money, gift cards, gift baskets, sent texts to Jenn to keep her from being lonely in the hospital, or helped us in some way without asking. And if I have said no to you when you asked I probably really meant yes but pride got in the way. Sorry, I’m working on that. God has really worked me over in the area of giving and receiving. I’m probably like a lot of you who are embarrassed to receive and like to give but don’t want to intrude or get in the way. I am not a good receiver of resources and time especially because I don’t want to put anybody out. So let’s call a spade a spade, this view on giving and receiving isn’t humility on my part, its pride.


So I’m learning to receive with grace, because that allows you to extend your hand (and the Word says that you are blessed for that), and hoping that I will be challenged to give of my resources and time without asking you for permission. And I’m also learning about vulnerability. I don’t have to be a super hero. I don’t have to be Happy. I can be human, with all its frailties. So if I told you we were doing fine anytime within the last 3-6 months I was probably lying. Pride again. I don’t want you to think that I’m weak. Strangely, that’s how we get closest to the Father. And I’m cool with that. I let him remind me all the time of my weakness. I don’t mind being frail around him. But I don’t want you to see the tattered edges of my  Superman cape. Working on that too. 


A cute little kid with lung issues will teach you more than just patience and faith.


And finally, we have most felt your generosity through prayer. Even in the time Thursday night when we both figured that this just isn’t God’s time yet, we weren’t really comforted to be honest, but in a strange way we felt propped up. We didn’t smile through the pain or sing a hymn, but just kept on going, kind of like that ol verse in Isaiah about those who hope in the Lord. Trust me, there was no soaring on wings like eagles, much less any running on Thursday night. We just walked, sloooowly through that night, propped up by prayer. And though thousands were praying that night, Jennifer never slept but endlessly talked to God and pleaded on Parsons behalf. My friends, a mother’s prayer is steadfast and more powerful than any army on earth. If you’re a mother, God bless you.


Thank you doesn’t seem like enough. But thank you all the same. And love and blessings on your family, you have blessed us.


Superman & the Girl Wonder

Monday, June 10, 2013

Breathing Over the Vent

Oh Happy Day! For the first time since transplant, Parson is breathing "over" the vent. I guess she woke up and finally got the memo that she got her new lungs. Rodney & I are standing on either side of her bed watching her take deep breaths for the first time in her life. When we take our eyes off of her breathing - it is only to watch the vent display showing that she is taking spontaneous breaths on her own. Pinch me. New life & new breath is SO very powerful -- I absolutely LOVE IT!

"The Spirit of God hath made me and the breath of the Almighty hath given me life." - Job 33:4

Today we made the big move out of Cardiovascular ICU back down to Pedi ICU. It was a three ring circus to transfer with 4 chest tube drains, an arterial line, a central line, an IV pole with 9 med pumps, 2 catheters, a ventilator - oh, and a baby with new lungs. (And a partridge in a pear tree) 

Baby steps. The docs discontinued dialysis because her kidneys are working great. They resumed physical therapy.  Discontinued nitric oxide. Discontinued TPN. Gave a round of IVIG - immunoglobulin and upped her feeds a teenie tiny bit. Still a great deal of work to go in the coming weeks to get her off of her intense pain/sedation medication regimen, but all in all a great day to be Parson Blue. 

Par & Dr. Heinle -lung transplant SUPER surgeon!  I love a man that can sew - (His sewing skills put mine to shame.) He knit the tiny connections back together to give her NEW life!   

Ventilator display screen shot -- The little red peaks are Parson's first baby breaths she took on her own.  Amazing!  

The PICU welcome crew getting Parson settled 

I saved the best for last.... But since I cannot post a video here on the blog --  I am going to post a video of a BIG DEEP breath on FB. The video shows a spontaneous breath - one Parson initated on her own. You just gotta see it for yourself - it is AMAZING!  

Now, take a deep breath - you will be glad you did.