go team darla jane!

The support group that has been helping us through everything with darla jane is called Intermountain Healing Hearts. They do different events throughout the year to raise money, and awareness for congenital heart defects. They are having a Walk for Healing Hearts this September and we would like to get as many people as would like to participate with us to walk to support the organization, heart defects and our little miss.

here is the flier with the information. (you can click on the flier to view it larger)

We also thought it would be fun to all wear a team shirt... this is the design that I came up with. The shirts will be light blue, with pink design...

if you are interested in walking click here to register. <3

and if you would like a shirt, whether you are walking or not, let me know what size/sizes you would like me to get. The shirts will be around $13 the more shirts we order the price will go down. Or you can just plan on $13 and any extra I will just donate to Intermountain Healing Hearts.

a little hello.

from a cute girl. we got pictures taken in june...pre-nose tube days.

we need to get updated ones. she is growing up too quickly.

slow days of summer.

so darla jane's next 'scheduled' appointment with the cardiologist isn't until august 15th. So as long as we don't have to continually have her on high amounts of oxygen before then, we will just stay away from the hospital.
she hasn't needed 1 liter for most of today, and I even had her off the oxygen machine for a little while.
The next month we hope to have lazy, uneventful summer days.
Here's to that!

1 liter.

Darla Jane has needed 1 liter of oxygen for a good part of the morning and early afternoon to keep her at 80% saturation. I was just able to turn in down a bit to just in between 3/4 and 1/2. But it makes me anxious.

well...

4 days on room air is better than nothing.
Little miss decided that she needed the extra oxygen and we had to put her back on the oxygen machine today. 1/2 a liter to keep her at 80%. Let's pray she does not desaturate quickly. I'm not ready for surgery just yet...

Sedated again on Wednesday...

There was supposed to be a complete echo cardiogram done on Tuesday while little miss sedated for her cath...HOWEVER, there was a miscommunication of some sort and it wasn't done. so...we will be back up to good 'ole primary children's hospital again on Wednesday. Darla Jane will be sedated and they will be able to do a complete echo. It is always so scary when they need to sedate her, even if they aren't opening her up and doing heart surgery.
They are wanting to get all their ducks in a row, a complete view of her heart. Then, when it is time to have her surgery then they will know, completely, what they are working with...and on.
We need to be there at 7 am. I'm hoping we will just be there for the day. As long as she recovers from the sedation well, the day is all we should need.
We will also be getting chest x-ray (which is a standard procedure with every visit) and we will also visit with her cardiologist Dr. Mart. Hopefully there will be good things to report...or at least nothing bad. :-)

heart cath.

so it was back to the hospital for darla jane. we were scheduled to check in on tuesday, july 5th for her heart catherization. she got anxious and her oxygen saturation went down even lower on monday the 4th so after talking with the drs. we decided it would be best for her to come in then just in case the levels went down even more over night. So...darla jane and her mom spent 4th of july at the hospital. She went to sleep just in time for me to see the fireworks across the utah valley from the hospital window. not a bad view actually. She stayed stable throughout the night and was lined up for a heart cath at 11: We stopped formula at 4: am and she was able to drink pedyalite until 8:. Then she couldn't eat anything. The cath. before her ran long and we weren't able to take her down until 12:30. She was HUNGRY and mad. When she wasn't crying she would give us this face. LOVE it... her "you better not mess with me if you know what's good for you" face.

and here she is, i'm sure thinking "are you really sending me back into one of those rooms again?"

the cath was successful. There actually ended up being to areas that needed attention. An area in her aorta that they were able to stretch with the balloon and then a kink in her sano shunt that they fixed with a metal, mesh stent. The pressures in her heart went down to around 50 from up over 100. Providing a much better blood flow through the heart and into her lungs. We were able to keep her around 80 on her oxygen saturation on just 1/4 liter of oxygen at the hospital. She responded well throughout the night and the next morning so on Wednesday, July 6th we got to go back home.

AND through out the night at home and all of today we actually turned the oxygen OFF. and she has stayed, for the most part, in the low 80s and just a bit in the high 70s!! We are SOO happy about that.
We are hoping that with her oxygen levels up where they are we will be able to hold off surgery another month or a month and a half. The dr. did say that because her body is now more prone to the narrowing that he doesn't think she will make it much longer than that but little miss has proved them wrong before why not now?!

A month from now she will be 4 months old though, which is within the range of when the generally do the surgery (which is 4 -6 months)... so we feel ok about that. She would even be ok, the dr. felt, if she needed to do it sooner since she is doing so well on her weight gain now. She is just over 11 lbs and 11 lbs is the bottom end of where they really feel comfortable with going ahead with the surgery. We are happy with things.

I also saw this quote at the hospital. I thought it was great because there are so many who have physically touched darla jane's heart while at the same time she has spiritually touched so many more hearts... we sure do love her!

And for now, she is just happy to be home and asleep on her own couch.

thank you, again and always, for all the prayers. prayer works. I know that because I get to see a beautiful smiling face from my little baby (and 3 more pretty cute kids) every day.

darla jane wants to make sure we are still saying our prayers.

(this picture was taken from a trip to the hospital to rule out whooping cough)

So the low oxygen levels we were hoping were caused by the cold...are not. She does still have the cold. However, she also has increased pressure in her heart that is being cause essentially by the out growth of her shunt, with is causing the saturation to decrease.
Today I took her in for a cardiologist appointment. We saw Dr. Mart (who, side note, we haven't met with before but I LOVED him and will try to see him from now on). He was concerned about her low oxygen saturation for this long and decided that we go ahead with an echo today. We did. And discovered that there is an increased amount of pressure around her shunt. The normal is about 30 but he said they'd take anything in the 30-50 range...Darla Jane was around 130. This indicates that she is growing out of her shunt and is approaching the need to move onto the next surgery... We are not wanting that to be quite so soon. Little miss just turned 3 months yesterday and they like to wait to do the surgery between 4 and 6 months. SO we will be going back up to Primary Children's on Tuesday for a cardiac catherization. Then, they will go up through a main artery into her heart and try and stretch the area with a balloon to decrease the pressure. If that doesn't work a stent will be placed in to try and keep that area open. Best case scenario we get the procedure done, stay over night for observation and will be home again in the morning. Worst case, the procedure isn't successful...we stay at the hospital and will be lined up for stage two surgery within a couple of weeks. :-( not ready for that.
Which brings up the need to keep the prayers coming.

She has been gaining good weight though, and weighs 11 lb 14 oz....