HAPPY BIRTHDAY SWEET REAGAN!!!!

I cannot believe, even as I'm typing this, that my baby girl is 4 years old today.  What an adventurous 4 years it has been!  She has definitely proved to be our strong-willed, go-getter, never give up child and for that we are truly thankful as that spirit has gotten her here today.  I know no better way than to reflect on the past 4 yrs. than to show you some pics.  There were so many, I had a hard time deciding but think it shows her journey quite well.

Meeting Nolan for the first time at 10 days old

After 1st heart surgery (4 mos. old)

What have I gotten myself into?

Not always happy about the situation....

But goes with the flow, nonetheless!

Happy for family times...

And thankful for home times!

Putting up with the hospital time...

And hospital baths...

Maybe that's why she makes the most of her time when not in the hospital...

We have so many to thank who've helped along the way

It's been a wild ride, but they've been there from day to day.

Ronald McDonald House Charities

Wilsonart International Inc


Our Lord & Savior Jesus Christ
Early Childhood Intervention Therapists & Staff
Hope Therapy Therapists & Staff
Donna Ingram, PT
Temple Independent School District Homebound Teacher,  Melissa Prather
Dell Children's Medical Center PICU & IMC Attendings, Nurses, RT's & Staff
Lucile Packard Children's Hospital CVICU & 3West Attendings, Nurses, RT's & Staff
Dr. Frank Hanley, miracle worker and renowned heart surgeon
Children's Cardiology Associates & Dr. Gregory Johnson
Austin Children's Chest Associates & Dr. Jordan Scalo
Dr. Rebecca Riser, Pediatrician & Nurse Shannon
Wonderful Del Norte Neighborhood Family
Excellent School Family at Kennedy-Powell Elementary
Church Family At Temple Bible Church
Open Range Cowboy Church

Family & Friends who encompass alot of you 

(Don't think for one minute you're any less important because you fall in this category... for you are the ones who hold us up in prayer, leave us encouraging messages, take care of Nolan & bring us meals during the crazy times)

And last but not least, our extended heart family we've come to know through this all...thank you for your support, suggestions & first hand experience at all this...You all know what it's truly like to go down this road and we love & pray the best for you all!

Thank you Lord for this day.  For you have truly taught us ... 

Do not worry about tomorrow, for tomorrow has enough troubles of its own. 

The Waiting Game

Well, it's Wednesday evening and I am actually typing this post from home.  No, Reagan is not here with me.  She is still in the hospital but doing well enough for me to come home for the evening and hang out with Nolan.  MiMi & PawPaw are on hospital duty tonight in Austin.  Reagan's lungs are starting to sound better and she is now down to 1L of oxygen.  Although we do have home oxygen setup the doctor would like for Reagan to be off of the oxygen this time before leaving the hospital.. just more as a sign that hopefully she has conquered this bug this time.  Today they switched her i.v. antibiotic to oral to be able to watch her the next few days on an oral dose to ensure she does ok. No one has officially said, but I am thinking we may be able to go home Friday or Saturday.  Today I brought her shoes to the hospital and let her get out of bed a little and walk around the room.  She mainly wanted to climb on the pull-out sofa in the room to look out the window and her and MiMi made up a fun game of swinging the oxygen tubing around like a jumprope.  Reagan thought it was the funniest thing!  Oh the things you do to entertain when stuck in a hospital room.
**Not the best pic but gives you an idea

Well, I better get some rest in my own bed while I can...it's back to RMH tomorrow night.

Deja Vu....

Well, unfortunately, I'm here again to report that Reagan is back in the hospital.  Our time back home was short-lived but long enough to enjoy a snow day with Nolan & of course the Super Bowl.
Monday afternoon Reagan began vomiting and looking weak and pale again.  When I put her on the pulsox her oxygen levels were 78-79 so I immediately put oxygen on her but had to put her on 2L to get her levels above 90.  She had goosebumps up and own her arms and had labored shallow breathing.  Upon arriving in the ER Monday afternoon, she had 102.3 temp.  She got a chest xray which I've heard looked worse than the one last week.  Not sure if the oral antibiotics at home weren't strong enough or if she caught something else.  They did however get an i.v. started with i.v. fluids, because she also had not wanted anything to eat Monday, as well as another round of the i.v. antibiotic Rocephin. Late last night, once we finally got moved to a room in the Intermediate Care Unit (IMC), she had perked up and began eating a little jello and drinking small sips of juice. We finally got to bed about 1am and Reagan slept in until 11am this morning.. much needed rest, I'm sure.  It's 1:15pm and I am over checking into our room at Ronald McDonald House.  Even though Reagan is sick, there are so many kids much sicker than she so the doctors have actually not even rounded on her yet so I'm not sure what the plan of action is this time.  We totally are fine with waiting as Reagan has been that baby before that needed "all hands on deck" in emergent situations so we sit and wait our turn.  I will update as I know more.  For now, she is feeling and acting much better.  Sitting up, eating, coloring and asking to go outside and jump.  Unfortunately though, her lungs sound like a washing machine full of mucus and junk that needs clearing out & she's still requiring 2 L of oxygen.  She is getting breathing treatments every 4 hrs. with the vest.  We are hoping this time it will knock all of that junk loose so she can get over this.  Next week, Reagan will turn 4 yrs. old-- such a miraculous feat indeed and we are anxious to be able to get home and celebrate it the right way instead of in the hospital!
Thank you all again for your support and prayers & thank you to Aunt Kay, MiMi & PawPaw, Miss Katie and Mrs. Debra for helping out with both my babies.  It takes a village and I couldn't do it without all of you!

Answered Prayers

We made it home about 9:30pm last night.  Reagan was discharged home on 1/2 L of oxygen and she still has a week of oral antibiotics she has to take.  She is back to herself as far as playing and personality but still has a bad cough.  Hopefully, that will clear up in the next week.  We are so thankful to be home and that the blood culture ended up negative after all so she did not have a blood infection only pneumonia.  We still will be checking in on her blood clot next Friday, Feb. 11.  I will update on that as we know more.  Thank you all again for all your prayers.  The doctors said we really have to give Reagan credit for fighting this off so well which is true but we also know the Great Physician played his part as well.
While waiting for discharge on Tuesday, Reagan enjoyed a Music Therapy session

and some much needed rest.