Big news.

I can update the details later. But I thought I'd at least post the most important thing... If X-ray looks good tomorrow and the doctor is comfortable with darla jane's food intake we will get to go home!
She's been up, walking the halls and even walking up the stairs! I can't even believe how she's bouncing back.
Thank you for all the prayers!


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today has been a busy day

We got chest tubes pulled. There is still too much fluid but the tubes weren't draining any of it. So instead they've increased her lasix dosage to hopefully take most of it off.

She is eating a bit. We had a cup of yogurt and half a cup of applesauce!

Little miss had an echo done without ANY help from meds...and did SO well! And answer to prayers for sure! And Bonnie said it looked good. 

AND the icing on our cake...little miss not only stood up but also took 2 baby steps!!
It's all about the baby steps in the right direction! Go darla jane!!

on to a new day

Today little miss woke up not feeling so well.  She hasn't eaten anything and has been throwing up quite a bit.  We were able to give her an anti-nausea med and hopefully that kicks in a helps her to feel better.  We are just keeping her on clear liquids for now, but so far she's only wanted water.
Her xrays looked ok.  There was a bit of fluid around her lungs which also shows by the amount of drainage still coming out of her two side chest tubes. The middle one isn't draining too much so there is a chance we may get to pull that one this afternoon.
She does have an oxygen saturation of 85% on 3/4 liter of oxygen...and it even got up to 87% for a little bit!
So far we are keeping our morning pretty low key with sleep, and cartoons on tv.

Hi everyone!

We just wanted to let you all know how thankful we are for all of your prayers...and happy juju dances!
xoxo

she's SO got this

Just over 24 hours post op and we are up on the recovery floor little miss still has 

her chest tubes in but got two lines pulled and seems a bit more relaxed. She really hasn't eaten much but is tolerating formula and clear liquids really well.
#darlajanereallyisarockstar

Our agitated princess.

Sorry for the lack of updates. From a heart health standpoint she is doing well. The challenges we've had have been trying to balance her pain meds and sedation to her "happy place". Where she isn't too sedated and she isn't up, mad at the world throwing herself around. Through the night we got the balance pretty close. She was still up quite a bit but was much easier to calm down. Nathan was up with her throughout the night. What an amazing dad he is.
I think the day with be spent trying to keep that balance as she still has all her lines and tubes in.



She has been doing a good job as slowing working through clear liquids without and throwing up.



Please keep the prayers coming.

#doctorburchisarockstar

We were able to talk to Dr. Burch...the man of the hour! She did really well.  There were a few little things that weren't "perfect" per Dr. Burch standards so that means 100% for everyone else... We will be able to see her within the half hour and update more later tonight.
Please don't stop the prayers now though...the next little while is still critical to see how her body will respond to the new blood flow and the change in pressures.

I do want to say THANK YOU all soo much for all the calls, texts and continuing stream of pictures on facebook and insta from so many of our favorite people all day long.  It helped us more than you will know, getting through the day, with that visual representation of all the support that is behind us.
WE LOVE YOU ALL!

by by bypass!

Darla Jane is now off the bypass machine!  when we got the update they were just finishing up the echo and so far everything looks good.  Dr. Burch will finish up and then hopefully be in to talk to us in a little over an hour and within and hour and a half or two we will be in to see our baby girl!
thank you. thank you! for all the prayers and good juju being sent our way.  with the combination of that and a fair amount of delicious food we are making it through today.  I'm sure it had more to do with the prayers and faith than the red vines and chocolate.  though it didn't hurt the process...

the heart lung bypass machine

update: little miss is now on the bypass machine...and the "real work" can begin.
update on mom:  I've already downed a package of red vines and have started into the chocolate.

scar tissue.

about two hours after we got the update that the incision had been made, we got another update...still working through the scar tissue. little miss is still doing well according to the update from the nurse.

ready go.

Dr. Evans has all the lines placed, and she is doing well.  The first incision has been made and the surgery is on its way.
prayers.

checked in.

We got here at 6:00 this morning.  Darla Jane was great, and never once asked for her bottle...poor little thing hasn't had anything to eat since 9:30 last night.  She did ask for some gum and licorice but thankfully we were able to distract her.  We got to visit with Dr. Burch the surgeon and Dr Evans the anesthesiologist...and then they took her back.

It was around 7:45 when they took her and said for us to plan on 6 or so hours. We got a little bit of breakfast and settled ourselves down in the waiting room.  We will post updates as we can.

#darlajaneisarockstar

tomorrow. tomorrow.

Tomorrow.  May 7th.  Lucky 7...right??  We will be headed to the hospital bright and early for a 6:00 am check in.  Surgery is scheduled to start at 7:30.  We will try to do posts as we can here on the blog.  Feel free to leave comments of encouragement, humor, and distraction as we go throughout the day to keep our mind off of things.

And if all these cards from Katelyn's 2nd grade class aren't able to help our little miss get better I don't know what will!  Sweet Katelyn organized her whole class to take some time out of their day to make these beautiful, heart warming cards for Darla Jane.  Love them.  Love her.

3 days.

The time is so soon.  
As you know Darla Jane will be going into surgery on Tuesday  
We are asking all who would like to, to participate in a fast for Darla Jane on Sunday the 5th, and also for the doctors and nurses assisting her and for her long term recovery.  The surgery itself is a big one and often these little one's bodies have a hard time adjusting to the new blood circulation which is why we ask for prayers for her recovery as well.  

I wanted to take a minute to explain to those who may not know what a fast it, just what it is and how it can bless us.

A quote from the mormon.org website says...
"When we fast and pray with faith, we demonstrate our devotion to God by sacrificing an earthly desire, becoming more humble and open to His divine guidance."
A fast is where we go 24 hours without food and water.  Putting our faith that as we make that sacrifice that we will be blessed by God and have help in answering the prayers we are pouring out to him.  
to quote again from the web site "We pick a specific need or question we have and pray for help while we fast. Moses, David, Esther, Jesus and many others fasted in order to be closer to God and more receptive to His guidance. We find that when we fast and pray with faith we are more humble and more able to feel God's love and understand His will. Fasting also shows that we are willing and able to control the desires of our bodies, which can help us when other trials require that kind of strength."

I know that as we ask for help she will be blessed.  Along with prayers we are taking any good juju, happy dances, healing vibes...what ever you can send our way.


Thank you all so much for the love, support and thoughtful things you have sent.  

We love you all and appreciate, more than you know, the blessing you are in our lives.

We will be doing most of the updates on Darla Jane and her surgery on the blog so check back here through out the week.

Hugs to you all.