Shine Bright Firefly!

Dear Friends,

I know our family has consumed so many of your prayers lately (and we are forever grateful for that:), but I would really appreciate prayer for a very good friend of mine's daughter who is battling an aggressive cancer.

I taught with my sweet friend, Denise, for 7 years.  She has always been like another mother to me and she got me through those grueling first years of teaching.  Denise is an amazing, Godly woman and I truly think the world of her.  Her daughter, Sarah, is just as amazing.  She has been through SO much these past few months and cancer has really taken a toll on her body.  They have decided to stop chemo right now to allow Sarah to enjoy some time at home.  Sarah is just a few years younger than me.

Sarah has had her blog for quite awhile and at the end of each post, she always says, "Shine Bright Firefly, Shine Bright," as a friend once told her that phrase and it stuck.  Sarah always shines so bright during her video blog posts and she has shown such courage, grace, and strength during her battle.

http://sarahchidgey.blogspot.com/

Thank you for lifting up Sarah, her husband Eric, her mom and dad, and the rest of her family in your prayers.  I know they appreciate it.  :)  And I know you will be encouraged and inspired by her beautiful blog posts.

Sarah...keep shining bright!  We love you!

Post Op - Day 19

When we left Texas Children's after getting the "go ahead" to head home to San Antonio, I yelled out "we did it!" once our feet hit the pavement outside the hospital.  Field busted out laughing as if he totally understood what I meant when I said that aloud.  Therefore, the rest of the trip home we would yell, "we did it!" and he would look at us, smile, and start giggling.  We tried to get video of it the night we arrived home to San Antonio, but we didn't get the hysterics that we were able to get off camera.  This video is just a small glimpse of Field's sweet, precious giggle.  Please excuse my annoying high-pitched voice!

In case you are wondering, Field is in the baby bjorn with his daddy.  He got so used to being held while in Houston that he cries when we put him down.  Uh oh, we are in for it, aren't we?  We got the ok to put him in the baby bjorn and it really helps when our arms are tired from holding him all day!

We continue to do very well at home.  We have settled back into our routine and we are working on getting caught up on sleep.  We are still up at all hours of the night which is pretty exhausting, but compared to what we went through in Houston, this is nothin'!  Field wants to eat every 3 hours (almost like a newborn) - while this is a good thing for his weight, it's not so good for those dark circles under my eyes.  But again, compared to our Houston shenanigans...this is a piece of cake.

Hangin' with Daddy

Daddy looks concerned, he's just watching football, no worries!

Bathtime 

Yes, he always has something in his mouth - can you say teething?!

Each time we are out in public we have many, many people come and say hello and that they have been praying for Field, which is so nice and such a blessing - but many also want the full run-down on how we are doing.  It gets pretty exhausting retelling the story every time so if you see us out and ask questions - we might just tell you to check the blog.  :)  And on that note, don't be surprised if you see us out.  We are back to reality and back to life - so yes, we are doing normal things like going out to eat, running errands, playing golf, and exercising (well, Brad is anyway).  We've gotten a few "deer in the headlights" looks as I suppose people just weren't expecting us to be out and about already.  Have you heard how quickly babies recover from open heart surgery?  I can assure you it's much, much faster than our 80 year old grandparents did. :)  We are so happy and thankful to be back to the normal Johnson family life.

Post Op - Day 12, Home Sweet Home!

Today we had a follow-up appointment with Dr. Fraser and his team.  Since it was a holiday, the TCH Heart Center was closed but the sweet nurses for Dr. Fraser came in anyway to do rounds and to see Field so we could go home.  The appointment went very well and we got the thumbs up to head home.  Wahooo!

Field and Brad standing in front of our room on 

the cardiac floor before we were discharged on Saturday, January 15th.

Field and mommy waiting to be discharged.  

We are sitting in the chairs in front of our room on the cardiac floor.  

We called this our "front porch" and sat out there each 

evening to watch the action in the hallway.  Ha!

Discharged, loaded up, and ready to get out of there!

Our time in Houston was blessed for so many reasons, but I have to say we couldn't get out of there fast enough!  I think Field felt the same way as he was cranky until we hit I10 and then he passed out for almost the entire trip home.  All is well with Field and he continues to amaze us at how quickly he has recovered.  What a hero he is!

One last check-up with the wonderful nurses Amy and Jennifer.  LOVE them!

This is the man - Dr. Fraser.  We are so thankful for him.  

Goodbye TCH Heart Center!  See you in a few years!

We are so thrilled to be home and back in our own beds again.  Just 2 weeks ago, we weren't sure what the next few weeks would look like and we surely didn't expect Field to recover so quickly and so well.  But we trusted in Him and we gave our fears to the Lord.  He is good - all the time.

But those who hope in the Lord 

will renew their strength.

They will soar on wings like eagles;

they will run and not grow weary,

they will walk and not be faint.

                                  Isaiah 40:31

Our wonderful family and friends decorated 

the house and stocked the fridge and pantry 

with snacks, drinks, and a home cooked meal.  Thank you!

Field at dinner tonight.  

Happy to be back in his usual routine again!

Home sweet home feels oh so good!

Post Op - Day 10

Just a quick update on how the Johnsons are doing here at Texas Children's in Houston.  We continue to travel the positive road to recovery.  Feisty Field has chilled out a bit and is much happier.  He is eating SO WELL which is a huge milestone for us, considering we struggled so much before surgery.  In fact, we can't keep up with his eating desires.  He wants to eat every 2-3 hours and so we are going through my milk like crazy.  We met with a dietician and she helped us get started on fortifying bottles again so that we can fatten our little boy up!  Everyone has been wonderful with us and we just continue to praise God for bringing us here for surgery (and the many doctors and friends that encouraged us to seek out treatment here).

Dr. Fraser and his team are all very pleased with Field's recovery.  All of his vitals remain very stable and he looks more "pink" than they suspected.  We are on quite a bit of medications, but we will slowly wean these down as time goes on.  

Field and Amy, Dr. Fraser's Nurse Practitioner.  We LOVE her.  She rode the rollercoaster with us these past 10 days.  She is the one that updated us during surgery (called us into the consultation room 7 times to update us) and she checks on us each day.  She is the one that told me there would be bumps in the road and that she would let me know if/when I needed to worry (which fortunately, I never did.).

We have great and really exciting news...we are being discharged TODAY!!  We are awaiting our discharge papers and then we are outta here!  We will go stay with the Loocke's through the weekend and then we have post-op appointments with Dr. Fraser and his wonderful nurses on Monday morning.  If all checks out ok, then we will get to head home Monday afternoon to San Antonio.  We would SO appreciate your prayers for Field's smooth and positive recovery to continue and that we will get to go home on Monday.  We are certainly ready.  We miss our home!

What mom?  I get to see the sunshine again?  I am so excited!  

We continue to be so very thankful for the love and prayers that have surrounded us these past few weeks.  If you hadn't believed in the power of prayer before this, I hope that our circumstance showed you how great His love is for us and how He is so faithful when we let Him be.

Be joyful always; 

pray continually; 

give thanks in all circumstances, 

for this is God's will for you in Christ Jesus.

                             1 Thessalonians 5:16-18

And one more thing, Happy 7 month Birthday, sweet baby Field.  We love you!  

Feisty Field is on the up and up

Field is doing amazingly well.  We are so, so thankful.  Today we moved to a regular room on the cardiac floor.  The ng feeding tube was removed and all IV's and lines are out except for one last IV in his right arm.  The IV is not being used - just there in case we need it.  He is eating wonderfully and he is back to his happy, smiley self.  Go Field Go!  

Field made a name for himself during his last days in the CVICU.  Yesterday was a day of exhaustion and tears from our sweet boy.  Field hadn't slept much in the last 3 days and he was just at his wits end.  We don't blame him one bit. His feistiness was in full force and he let us know he wasn't happy.  In fact, he let the entire ICU floor know he wasn't happy, hence the nickname "Feisty Field."  He gets ALL the grace in the world for being cranky, but we are so thankful to be on the regular floor now where we can all get some rest.  

Daddy and Field hanging out in between 

Feisty Field's meltdowns yesterday

When we left the CVICU we got an excellent report on Field's progress.  His last echo showed continued improvement in his heart function and his blood pressure has stabilized with good numbers.  His sats are perfect for him and he is the happy, healthy baby that we love.  The doctors are VERY pleased with Field's recovery.  And they also mentioned how happy they are for us, yet how much they will miss him.  They are especially going to miss his smile.  :)

Getting his incision checked by his lovely nurses

We feel so thankful and so very blessed.  I am in awe at how quickly Field is bouncing back.  I keep asking when he will get Physical Therapy and Occupational Therapy and from what they see, he doesn't need it yet.  He is just doing so well.  Thank you, God.  We give all the glory to God and we praise Him for allowing us to witness a miracle this past week.  We will continue to keep you posted on our status but it looks like we will be here through the weekend and then possibly be discharged early next week.  Then they would like for us to stick around Houston for a few more days.  We miss home, but we will do whatever we need for Field to have the best recovery possible.  

Field went from this on Wednesday, January 5th, 2011

To this (one week later) on January 12th, 2011

God is SO faithful!

Give thanks to the Lord, 

for he is good; 

his love endures forever.

                                1 Chronicles 16:34

Thank you for your love, support, and prayers.  Without you all, we wouldn't be where we are today.  

Praise God 

and 

Go Field Go!

Post Op - Day 5

Whew!  What a day.  It was a great one, but ended with a huge meltdown from you know who.  As I said before, the ICU isn't the best place for a very curious baby boy.  Field slept very little all day so by tonight, he had a complete meltdown.  After a bath, new sheets, politely asking those around us to talk using their "inside" voices, and lots of rubbing of the head, Field is sleeping soundly.

Today, the smile returned fast and furiously.  Praise God!  Thank you BB and Nonnie for helping Brad and I make him happy again.  It was certainly fun during rounds today when Field flashed that awesome smile.  A few have even nicknamed him "Gerber Baby."  So sweet.

The ENT checked out Field's throat and vocal chords today and all checked out great.  He has a little irritation in his throat from the intubation, but that is expected.  We got the go-ahead to feed by bottle, and he drank some tonight.

I love my feisty Field and I am beyond thankful that he is back to his old self.  One minute he is giggling and smiling, the next minute he is a hot mess.  It's been a busy day, so I haven't had my time to praise God yet, but heaven will hear my rejoices soon enough.

There is talk that we will move down to a regular room tomorrow.

Until next time, thanks for checking in and please keep the prayers coming!

Love to all,
The Johnsons

Post Op - Day 4

Today the chest tubes were taken out.  Yahoo!  We believe Field is much more comfortable without the tubes - wouldn't you be?!  They also took out the catheter, so let the diaper changing begin.  We are still giving the belly some more time to rest and recover from surgery so all meds and nutrition are given through the ng tube.  Tomorrow an ENT will visit to assess the throat and vocal chords and if all checks out ok, we will begin feeding by bottle again.  Blood pressure is still a bit elevated but much better than yesterday.  Field was also moved into a crib so we are definitely making progress.  

Sleepy boy

Nurses Josh and Jill getting Field set up in his new crib

The crib, and if you look carefully there is 

a picture of Field's heart attached to the crib

Some have asked if B and I are getting any rest.  We have slept at the hospital for the last 5 nights, and surprisingly we feel somewhat rested.  The CVICU is much like the NICU (I realize not too many people have experienced the NICU but hey, these places are home away from home for us) in that the nurses take care of only 1 or 2 patients at a time.  They are very hands-on and very qualified.  We still don't feel comfortable leaving Field without a parent.  We like to know what meds they are giving, we participate in "rounds," and we want him to see our face when he is awake.  So we have a system and take shifts throughout the night.  We try to take time for naps during the day when the grandparents are here.  I can assure you that BB and Nonnie are happy to watch Field so we can rest. :)

Today I got to hold Field for the first time since Wednesday.  I was starting to get emotional as I hunched over the crib trying to get as close as I could to my child.  Sweet Nurse Jill came over to check on me and within minutes I was in a comfy chair and he was in my arms.  Thank you, Nurse Jill.  I know it was an inconvenience with all of the tubes and wires, but it meant the world to me.  The paparazzi (Brad) snapped a bunch of pictures and I remembered today was the day I decided not to fix my hair - ugh.  :)

Happy mom!

 Us with Nurse Jill

The Johnson Fam

Your prayers are at work.  Thank you for showering us with your love and prayers.