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.

may 7th

We have a date for surgery... I'm not sure if that makes me more or less anxious, maybe it's just a different kind of anxious. But nonetheless here we go, ready or not.
We know that we will be able to make it through with the love and support of all of you so we are asking all who want to to join us in a fast for Darla Jane and the doctors and medical staff that will be attending to her. We will be fasting on May 5th.
I know if the Lord has the strength to move mountains He can do anything.

tick tock...

I  had a really good talk with Linda, who is the one in charge of scheduling surgeries.  She told me that Dr. Burch, the surgeon, did need to review Darla Jane's case before it got scheduled and that is why I haven't heard from her yet on a date.  

He has a surgery all day tomorrow and so she probably won't have a chance to talk to him until tomorrow evening.  She will call me after she talks to him so it will be tomorrow evening or maybe Wednesday before I hear back from her.

I asked her what his schedule looked like though. I told her I was worried about getting a call on Wednesday that surgery would be scheduled for Friday.  She said oh no, that based on his schedule it is looking like, right now, it would be scheduled for mid-may.  

Which is good because it will give us a few minutes to relax and breath, or at least try too.  But it also means one more month until Darla Jane can have her surgery. 

Prayers that her oxygen levels won't go down too much in that time and prayers that she will stay healthy throughout the month.  

AND prayers that our little, active 2 year old miss will be patient with her tether.    

Thank you all for your support and love as we ride this roller coaster.  

no date set yet...

Why is it that when you want to know when something is going to happen, you have to wait SO long to find out when it will. Word on the street is that we will get a call on Monday with the surgery date.  \
In the meantime we went to Darla Jane's 2 year well-check and found out that even though she had been showing NO signs at all, she has an ear infection.  The nurse felt confident that it wouldn't delay surgery at all and should be cleared up by the time we go in.  Maybe the antibiotic will help clear up anything else that might pop up too and bust our groove.

Darla Jane was actually pretty good at her appointment, compared to how she used to be at the doctors.  And she is a healthy 28.4 pounds which is in the 82 %tile for her age...and given that her height is only in the 5 %tile I give her even more props for her weight.  Low weight is often something that kids with HLHS and many heart defects struggle will.  That is one thing little miss hasn't had to worry about.

News. and boy is it!

We had a follow up with Dr. Mart last week.  He expressed concern that they were not able to find anything in the cath lab to "fix" to help with the low oxygen levels.  He assured me that he had asked specifically for Dr. Day to do the cath because if there were collaterals or anything else that could be done, he would find it. We then discussed that the only way to bring her levels up at this point is to go ahead with the Fontan.  

When Dr. Mart said  "I am going to present her next week at conference for an "early Fontan" (bold and italics added for emphasis) I just about fell off my seat.  I knew she was going to need it eventually. And I knew that low oxygen levels were an indication that it was getting close to time. BUT I didn't think at all that he would have said that NOW. 

He also discussed the possibility of also doing an aortic arch reconstruction if the stents in her heart weren't going to eventually be able to be stretched out to an adequate size.  

Not only did he spring the "early Fontan" on me, but he also said that he was going to recommend it for APRIL.  As in this month. 

Hello. Let me introduce you to the rug that was completely pulled out from under me. 

He said that he couldn't see any benefit  for her, in waiting.  He said her saturations would go down along with her energy level, weight gain and overall health.  That for her, now would really be the best time.  

I was able to talk to Dr. Johnson on the phone today.  He told me that Dr. Burch and Dr. Grey, the final voices in the decision on surgery weren't at the conference this morning so a scheduling form wasn't able to be turned in.  But  he was fairly confident that the surgery will be in the next two weeks!  I was just getting my hands around the month idea and now it was two weeks.  We won't know for sure the date until they are able to run Darla Jane's case by those two doctors but we should know a date by the end of this week.  

He also said they discussed her aortic arch and that they don't feel the need to do reconstruction on that right now.  whew!  One less worry on our plates.

Let the prayers commence.  Ready. GO!

Happy Birthday little miss!!

I cannot believe this little girl is already 2!  The past two years have just flown by. She is growing into such a fun, smart, sweet, happy, beautiful girl. I know our family is not at all the same with her in it.  Happy Birthday little one.

the story of a girl and the cath lab.

7:30 Friday morning we jumped in the car to take Katelyn and Elli to school.  Right after we dropped them off we were on our way up to Primary Children's Medical Center for our 9:00 AM check in...you can see just how excited our little miss was about this idea. 

 We got all checked in and ready for pre-op.  Darla Jane cause all sorts of trouble for anyone who wanted to weight, measure, listen check or even get within a 5 foot radius of her. She LOVES the doctors office.  But they were able to get the information they needed, for the most part, and we were ready to go

After they take the kids into the lab they leave the parents with this little friend to make your wait even more exciting as you stare at it waiting to buzz and tell you your little one is done...I also learned, while waiting that they buzz it to call you down to the lab to ask you permission to run a bigger catheter and place a second stent. Thanks to the guided intuition of a dear friend, Jerai, who stopped by just in time I had to courage to walk down that hall and get the news.  But following her rock star status, Darla Jane did amazing in the lab.  Because of the stent being placed we got to spend the night in the CICU.

We spent a lot of time snuggling, Darla Jane spent a lot of time screaming at anyone who came close to her, and I spent a lot of time trying to keep her calm... unsuccessfully.  

Then we both spent most of the night in the chair because Darla Jane would have nothing to do with being put in the crib.  Next time we are requesting a bed so mom can snuggle WHILE laying down...

Luckily in the morning we were able to get a few smiles out of her...

Maybe it was because she received 3 new stuffed animals while she was there.

I am more and more amazed by this girl and the strength she shows despite the trials she has. We LOVE her so!

schedule for tomorrow

Tomorrow we go in for Darla Jane's cardiac catheterization.  Here is a link with a little information to help understand what the doctors believe the problem is and how they can fix it. We are hoping they are right and that it is an easy (for them) fix.

We are scheduled to check in at 9:00 AM.  The procedure is set to begin at 10:30. The charts have us staying over night for observation and then should be able to be sent home on Saturday morning.  Prayers, prayers and more prayers for this little girl. Although this seems minor compared to what she has been through, it's still kind of a big deal... to her mama anyways.

*update

I talked with Dr. Mart today.  He told me he had talked to Dr. Day who reviewed Darla Jane's previous cath.  Dr. Day had said he saw some places where collaterals were beginning for form so he feels like that is what we are dealing with.  If that is the case, it should be an easy fix for him.

Not the update you were expecting.

                                    

Instead of checking into the hospital yesterday morning, we were checking temperatures.  And Darla Jane's was 101.  She had a fever earlier in the week but we thought it was long since gone. Nope.  It was back and so I called to talk with the doctors to decide what to do. Anesthesia as well as placing the coils (or plugs) being sick, especially with a fever are very risky. So with a unanimous vote we decided to reschedule.   

Not only does she have a fever, but little miss also has been reunited with her dear friend Mr. McNaselCanula.  Who she really was not very excited to see.  She is needing around a liter to keep her sats up.  I'm not sure if it is because of the illness or her heart, possibly a little of both.  But it's back and will be around until she doesn't need it any more.

We took Darla Jane to the pediatrician to see if we could find the cause of the fever.  Official diagnosis from the doctor himself was that she has a "wicked bad ear infection".  We were given a prescription for Omnicef and were told she would be good to go for her cath which is now rescheduled for March 1st.  I just figure it gives us time to get some more prayers in.

It's been a while and now we're back...

Hello.  Were you starting to miss us?? I thought you might be so we decided to come back.  

Darla Jane had an appointment at the beginning of the month.  Dr. Mart wanted to do an echo on her, un-sedated.  Let's just say, it was UN-successful.  Which also pertained to the whole appointment.  Our little miss is realizing that she DOES NOT like to visit the Dr. or anything that has to do with the Dr.  

After the unsuccessful appointment and because of a concern we had with her tiring when exercising and getting a bit blue in the face we decided that a sedated echo was in order. Sedated echo happened, almost 2 weeks ago.  The echo looked good.  No sign that there was anything causing a problem. Dr. Mart asked us to take her blood oxygen level just after exerting herself, like after climbing the stairs.  I did. And I found the problem.  The average population has a blood oxygen level of 95-100.  Darla Jane's normal is close to 80-85.  When I tested her at the top of the stairs. 43.  43!  I freaked out. Called Nathan.  Asked him if I should have her go up the stairs and test it again. He told me no!  If that's what she was at we shouldn't be "testing her".  We decided to just have her climb the stairs once a day through the weekend and see what numbers we got.  So we did.  The highest she was after exertion was 54.  I called her Dr. last week and told him what we found.  He was concerned (and rightfully so!) and advised we get her into the cath lab within the next week or two.  His prediction was that she developed collateral veins.  Veins that form on their own and take the blood supply away from the places that it really needs to go.   In the lab they will put her under anesthesia, run catheters up her arteries to her heart, inject a dye so they can track where her blood is flowing... then hopefully see the problem and easily fix it.  We are scheduled for the cath lab on February 13th.  What a way to celebrate CHD awareness week right? She's excited about it....