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.