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!)

A Mother's Perspective

A Mother's Perspective (by Stephanie Husted)

You passed me in the shopping mall...
(You read my faded tee)
You tapped me on the shoulder...
Then asked..."What's a CHD?"

I could quote terminology...
There's stats that I could give...
But I would rather share with you...
A mother's perspective.

What is it like to have a child with a CHD?
It’s Lasix,aspirin,Captopril…
It’s wondering…
Lord what’s your will?…

It’s monitors and oxygen tanks…
It’s a constant reminder to always give thanks…
It’s feeding tubes, calories, needed weight gain…
It’s the drama of eating…and yes it’s insane!

It’s the first time I held her…(I’d waited so long)
It’s knowing that I need to help her grow strong…
It’s making a hospital home for awhile…
It’s seeing my reward in every smile.

It’s checking her sats as the feeding pump’s beeping…
It’s knowing that there is just no time for sleeping…
It’s caths, x-rays and boo boos to kiss…
It’s normalcy I sometimes miss…

It’s asking do her nails look blue?
It’s cringing inside at what she’s been through.
It’s dozens of calls to her pediatrician…
(He knows me by name…I’m a mom on a mission)

It’s winters homebound…and hand sanitizer…
It’s knowing this journey has made me much wiser.
It’s watching her sleeping…her breathing is steady…
It’s surgery day and I’ll never be ready.

It’s handing her over…( I’m still not prepared…)
It’s knowing that her heart must be repaired…
It’s waiting for news on that long stressful day…
It’s …praying…it’s hoping…that she’ll be okay.

It’s the wonderful friends with whom I’ve connected…
It’s the bond that we share…it was so unexpected…
It’s that long faded scar down my child’s small chest…
It’s touching it gently and knowing we’re blessed…

It’s watching her chasing a small butterfly…
It’s the moment I realized I’ve stopped asking why?
It’s the snowflakes that fall on a cold winter’s day…
(They remind me of those who aren’t with us today)

It’s in pushing ahead amidst every sorrow…
It is finding the strength to have hope for tomorrow

This is a poem that I've seen on some of the CHD blogs and wanted to share it...

post-op check up

It has been 2 1/2 weeks since Darla Jane's surgery and she really is doing great.  She had her post op check up today and the Dr and NP were really happy with how she is doing.  She has gained enough weight on just 20 cal. milk, her incision is healing well, and her EKG looked good.  They did notice a little bit of fluid in the left lung on her x-ray but said that is really common post-op.  She is taking a pretty good dose of Lasix, which is used to reduce fluid retention so that should help.  They also decided that little miss is not quite ready to give up her favorite accessory and will be on oxygen full time for at least another month and then we will reevaluate where she is and how she is doing with that. The Dr said that it is not a surprise though with her rocky road, oxygen wise up to this point.  We figure if her needing oxygen is the extent of our worries, we'll take it.

We really would like all of you who have been following her story to know how thankful we are for your positive thoughts and prayers going out for her, and us. 
We would love to know all of you who are checking in on us...please post a comment, say hi, and leave Darla Jane a little note.  My amazing aunt is putting together a little book for our little miss and it would be so special to include your notes and for her to know how far the love and concern for her reaches.  Thank you, thank you to all of you.