We are asking for faith and prayers.

With this next Sunday being fast Sunday we are spreading the word and asking all those who want to be involved in a special fast for our little miss as she goes into open heart surgery on the 8th.
For those for you who are not aware of what fasting is...we believe as members of the Church of Jesus Christ of Latter-Day Saints that as we combine going without food and water with sincere prayer we allow ourselves to draw nearer to our Heavenly Father and be more prepared to receive blessings from Him.
Click here to learn more information about fasting and the blessings it can bring.
We truly believe that with a combined effort of so many, that our faith with pull Darla Jane through. As we put our trust and faith in the Lord we will see miracles happen. We will witness the work of angels pulling our daughter through and guiding the hands of those who we trust to care for her. We will learn that Darla Jane has a plan and purpose on this earth and she will be able to live long enough to fulfill that purpose.
The ability we have to turn to God for help is real. And if we but put our faith and trust in Him amazing things can happen.
As you take the time to turn to our Heavenly Father in prayer for our little one, also take the time to be aware of the blessings and miracles that you witness in your own lives and in all ways thank Him who gives us those blessings. He is aware of all of us and our needs, and turning to Him for strength and peace can and will pull us through.

thank you all for the continued thoughts and prayers you have expressed in behalf of Darla Jane. our family has truly been blessed by all of you.

back on the roller coaster we go.

it's on again. surgery. and the cath.

friday, september 2nd we will have the cath procedure to place a stent in our little miss's aorta. which requires an over night stay. then back home again until the next week
on the 7th of september we will be at the hospital for pre-op appointments and home again for the night...
and thursday, september 8th we will be back at the hospital for surgery. the GLENN...

bring it!

let me tell you what's up.

things around the house are crazy. all the kids, except for me are going to school now. i am working on getting over this cold, praying that those kids don't bring home any new germs and that i will get better and move onto surgery. i have an appointment with my good friend, dr. mart on thursday morning at 9:30. i'll have a little chat with him and see what the plan is.
...then i will let you know.
till then i'm just trying to keep this house in order.

*canceled*

the cultures came back, saying our little miss has a cold. boo on that cold. the cardiologist I talked to at the hospital said that it could most likely push her surgery back 2 weeks. I'm not sure if they will be able to do the cath before that or not. They just want to make sure the bug's completely out of her system.
cardiology will call me on monday to schedule an appontment with darla jane's cardiologist on friday or the following monday. and we'll go from there.
now we just have to hope that the kids starting school next week won't bring in something else to get her sick.
ugg...

she holds my heart.

here i sit. in the hospital. which is something i had wrapped my head around. but not for this reason. a cold, i think. the culture is in and we will know tomorrow. tomorrow, the day i was planning on coming into the hospital for darla jane's cath procedure which is now not going to happen. it is too risky to put them under anesthesia when they are sick so the cath has been canceled. and maybe even the surgery for next week.
yesterday darla jane was super grumpy and needed almost 2 liters of oxygen at times to keep her saturation up. i was on the phone with the on call dr. last night who told me to call if she was still satting the same in the morning, which she was. she needed almost 1 1/2 liters most of the day to keep her at 75-80% oxygen saturation.
HOWEVER...right now. she's asleep. only on 1/2 liter and is at 82%. silly girl. and not sounding congested at all. which is good.maybe it was just caused by allergies or something.
i'm going to talk to the dr.s in the morning. if the cultures come back negative and she stays clear until next week maybe we can still go ahead with the cath on monday instead and still have surgery on tuesday.
i will definitely keep the blog updated.

"call from cardio"

when my phone rings and I see that the call is from "cardio" my heart always skips a beat. today it happened. Dr Mart was calling to tell me about how things went in surgery conference today when they talked about our little miss. They are still going forward with the bidirectional glenn on tuesday. They also discussed the concern they had with her aorta narrowing. That can be fixed two ways. One is during surgery but is makes things much more risky and the other is by placing a stent, to hold open her aorta, that will stay with her through life. It is a little wire mesh piece that is expanded by a balloon. They feel that the stent they will be able to place is an adult size that will be able to be expanded as she grows. Often they have to place a smaller one that she will outgrow. With the adult stent however, they will be able to slowly expand it over time with periodic cardiac caths every year or so until she stops growing. For the cath she will be sedated but it is a very noninvasive procedure.
If down the line this doesn't work the option of a surgical repair is still possible.
We will most likely be going in for the cath procedure on friday, with an overnight stay and then hopefully come back home on saturday and be home until the surgery on tuesday.

it's time.

soon. next tuesday. august 23rd. we will be handing over our little girl into the able hands of a heart surgeon. we have confidence in him and his abilities. but prayers. please. please.

this picture was taken of darla jane at her cardiologist appointment.

can you believe that many wires can get attached to such a small little body?

prayers.

Little Darla Jane is doing well.
We just have a cardiologist appointment tomorrow.
and I'm anxious...
so maybe it's just prayers for her mama ;-)
update tomorrow.

4 months.

and definitely doing ok with her weight gain now... check out those gorgeous cheeks!

She is just over 13 lbs now...which is in the 45 %tile!

She is 22 inches though (what she puts forth in weight isn't the same for height)...she's just in the 3 %tile.

And her head circumference is 15.5 inches...which puts her in the 11 %tile.

She is 'talking' to us a lot now and gives us the cutest smiles.

She is reaching out and playing with toys now.

She can do pretty well sitting in the bumbo but only likes it for a little while.

She likes to roll from side to side but hasn't rolled over on to her belly yet, or her back from her belly...but she doesn't get much tummy time. Because she REALLY doesn't like it and she gets mad and her oxygen saturation goes WAY down. So this girl isn't getting much of that.

Speaking of oxygen saturation, she has been staying pretty consistent on her needs at 1/2 liter to keep her saturation at around 80%. Her next cardiologist appointment is scheduled for the 15th. I am thinking we'll talk surgery date then.

The last week her sleeping at night has gotten better. She will go to sleep really easily around 9:30 and sleep till around 6 or so!

We are SO happy with how she is doing now. With the challenge that our little miss has been given she is doing remarkably well. We love her more and more each day!