"it could be days"...

awesome. so...little miss is doing ok. she is definitly happier than she was yeaterday. Which, of course, is good. However, they are still needing to deep suction her every 4 hours and she it still on 2 1/2 to 3 liters of oxygen (at home, she is on 1/2 liter). The doctors today on rounds told me that "it could be days" for her to get over this. What is days though? All it means to me is that it's more than 1. So let's set our eyes on 2 days from now...

She needs to be down to her home oxygen levels and not needing deep suction any more for us to be able to go home.

home away from home.

So here we are, at the hospital again. Little miss was not able to keep her saturation up on a safe level of oxygen at home, so last night we were admitted to the hospital. At first there was a worry that it was a heart issue, but thank goodness it isn't. She has an upper respiratory infection (aka a cold). I'm not sure how long we will be at the hospital, unfortunately there is never a time line with a heart kiddo. We will be here as long as she is on increased amounts of oxygen and needing suction. With a heart healthy kid, they have more of a reserve. When they get sick they have a bit more in them to keep up. Darla Jane, however, is peaked at what she can give when she is healthy so any little bit of sickness takes it all out of her.
There isn't a whole lot more to report other than that, I will be sure to keep you all updated on her though.
Looks like we will be buying lots more hand sanitizer this winter. It is even making me contemplate home school...although the mental health of our household might be at risk then. :-)

update

On Friday the 28th we had a cardiologist appointment. Our Dr. felt over all she was doing well...except he would have liked to see her ready to be weened of the oxygen. Which she isn't ready for. Otherwise all else looked good. He scheduled us to see him again in 3 weeks, with an echo being done. Sometimes the inability to get off the oxygen is an issue of heart function and he just wants to be sure that's not the case...
Fast forward to the next evening... little miss's oxygen saturation is going down, we are turning her oxygen up, and off to the emergency room we go. They took a viral swab and sent us home...with some reservation. Continuing on through Sunday, she needed 2 liters to keep her oxygen up...and not even really up. She hit into the high 60s but stayed pretty consistently in the low 70s. We got a call from the emergency room on her cultures, she has "parainfluenza type 1" which is a fancy word for a virus that often causes croup symptoms and also causes restriction in the trachea and upper airways (hence the low oxygen levels) We went into the pediatricians office today to get a steroid shot that will hopefully open up those airways and allow little miss to get better O2 flow, and keep her out of the hospital.
I then wondered if her oxygen need at the cardiologist was from the start of this virus. I'm not sure...I don't really think so because leading up to this she was still needing the oxygen...just not as much as she needs today.
We will see on the 18th what the echo shows. But until then...pray that we can get over this "parainfluenza type 1" QUICK!

PS..the picture is during dinner. as you can see little miss gets food ALL over her face. and not much in her mouth these days. good thing her bottles are keeping up with those cheeks.

happy october.

from our littlest pumpkin.

tube free

...just for the picture.
darla jane still needs the oxygen but when I give her a bath and change her tubing and cheek stickers she is tube free. this time I though I'd snap a couple pictures in her cute outfit.
she really is such a happy girl, and a great blessing in our life. little miss brings out the softer, and best side in everyone in our family. I can't imagine our life without this little girl in it. could you?

well...

we are trying our best to get into a routine. with 3 kids in school and trying to keep little miss in, for at least 6 weeks post-op, it's a bit of a challange. days go by and I try my best to keep up with them. i have to say that i have never felt more out of control than I have this past chapter of my life. i know this is a blog to update on darla jane but part of my feeling of craziness is because of her condition. i can't help but worry about her future even when I know that what ever happens it will be ok.  There are just so many variables that I feel like i could get swept away at any time because I am not grounded. i think that because I'm not so busy with all the things I used to be in regards to taking care of her i have the time to think about our situation.  which, at this point in time, is not helpful at all.  I dont mean to complain or be a debbie downer.  i just am needing to get this out.  This post actually sat, mostly written,  in the draft box for over a week.  to post, or not to post was the question. but because I haven't been posting I felt like i needed to explain why.

but guess what happened...Darla Jane turned 6 months!

She is 16 1/2 lbs...58%tile!!! Which for a CHD baby is AMAZING!

But she is still on the shorter side, 24 1/2 inches...11%tile

and her head circumference is 16 3/4 inches ...46%tile.

:-)

The other day we gave little miss a bath, and let her be tube free for a little while. I hooked her up to the monitor and guess what!  She was 81%!  It only lasted about 5 minutes and she desaturated and we had to but her oxygen back on, but she could do it.  Go Darla Jane!
(also...I don't want to say it out loud to jinx myself, so this is just a secret between you and me but two nights in the last 3 little miss slept from 8:30 all the way until 4:30ish. shhhh. but yay!)