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....

this girls got a new accessory.

and she doesn't seem to want to get rid of it! Darla Jane is still sporting the oxygen tube. I guess she thinks it's a good look for her.we haven't met with the cardiologist since we were discharged from the hospital but i talked with him on the phone. he said if we are needing to increase the amount of oxygen she needs by too much and she is stable and doesn't seem to be in distress than she is ok, and doesn't need to be brought back in. And that if it's an issue with her heart we will probably need to gradually increase the amount of oxygen she is needing (which we haven't had to do). So she is doing ok...other than this cold . That we just need to kick!
I did move her appointment up to the 1st of July, it's wasn't scheduled until the 29th before that.

what a week.

this week started off with darla jane having her regular check up with the cardiologist. the doc said that our little miss was doing well, except for the fact that she wasn't gaining enough weight.
(she did weigh 10 lbs though!)
we decided that we'd work on that by trying to offer more than we have been at feedings and see if that worked. there is the possibility of increasing the formula in the milk but that has the possibility of causing diarrhea so we are going to see if she just won't take more.
The week continued on smoothly until thursday evening. I hooked darla jane up to her pulse ox. monitor and her oxygen saturation was a little low. We were told that could happen and to just put her on a little bit of oxygen, so I did... and by early morning on Friday I was able to take the oxygen off and she was fine. All Friday she continued to be normal with her saturation. Saturday morning, I tested her right when she woke up and her saturation was LOW. 58% low. so back on the oxygen she went...and how. I had to turn it way up to get her into her normal range which is already low for the average person 75-85% I got to where I was able to keep the oxygen flowing at 1.5 liters but i called the cardiologist and let them know what was going on. They said I should bring her up to primary children's to get looked at. So we did...saturday morning. And she was admitted. Here she is, smiling away at the hospital.



We only stayed one night. We came home this afternoon. They common consensus is that she has a little bit of a cold. Because her heart is already working hard this little cold caused her saturation levels to go down. She seems a little bit congested but not much. I'm not sure...but i am sure, this little girl was happy to come home.

She is still on oxygen...she came home on 1/4 of a liter. Tonight, her saturation has gone down a little bit...she is needing to be at 1 liter to keep her in her normal range.

But is at least consistent at that. She doesn't have any major signs of a cold. But I hope and pray that her saturation is down because of a cold. and that in a few days she will be back up to normal and off oxygen. I called the cardiologist tonight to tell him we were needing to bump the oxygen just a little. He said "if its just a virus she will improve but if it's an issue with her heart she might not." I'm hoping and wish and praying that it is a virus and that her oxygen saturation levels will improve soon on their own as the virus goes away. Nathan says he's sure it's just a cold. I'm going with his guess. but I will be calling the cardiologist department to set up a follow up for her first thing in the morning. I will update after that. appointment.