clouds.

fun with Elli.

cardio appointment and lunch with friends.

This time we had scheduled a cardiology appointment with an echo. Let's just say, the echo was less than successful. I was able to talk to her doctor about it and although she wasn't as still (and quiet) as she needed to be they were still able to see what they needed to.

Darla Jane is doing well. Her heart function looks good. There are just a few things on the "to watch list"...meaning they aren't big concerns just somethings we need to keep an eye on.

The dr. still isn't sure why Darla Jane isn't off the oxygen. I'm sure the cold she had set her back a little though. He's quote was "we'll just have her use it until she doesn't need to use it anymore". There is a good time line for you.

The other thing we need to keep an eye on is there was a variation on her upper and lower blood pressures. For Darla Jane, this most likely means that there is a narrowing in her aorta again. It could mean that she will need to be in the cath lab to either expand her stent or there is tissue growing through the mesh in the stent that will need to be cleaned out. We are just keeping an eye on it for now, there is nothing that needs to be done right away though. Dr. Mart also said that could mean there is a possibility that they try to reconstruct her aorta again during her fontan procedure (which is the surgery we are planing for around the time darla jane turns 3).

AND...there are lots of fun heart friends and their families that live close to the Riverton Hospital, where we had our appointment so we were able to have lots of good friends meet us for my routine, stress induced, french fry consumption after our appointment! It was definitely more fun to eat with friends then in my car on the way home.

(And our friend Ali snapped this cute picture of me and my little miss...)

update.

i wanted to update about little miss. She is still working on kicking her cold. BUT, we've been able to do it at home instead of in the hospital. So that's awesome. She is at the tale end of it, still needing the oxygen, for the most part. But doing a lot better. I will be thankful when this winter is over. She has a cardiology appointment at the beginning of March we'll get an update on how things are for her heart.
She will be getting an echo and I will be getting french fries and a dt. coke. (love the anxiety eating)

Sick.

Although you can't tell by the picture, little miss is sick. And where I wouldn't normally think twice (or at least thrice) about any of my other kids being sick, with Darla Jane it's different. The plain 'ole cold will cause her blood oxygen levels to dip dangerously low. And cause major anxiety in her mother. So here we are... Second bad night. Last night she dipped, called cardio, we decided she was ok to be home. And during the day she got much better. 1 liter of oxygen at times. But now again she is back up to needing 2 liters to keep her at 78-80%. Oh baby... As long as she doesn't show signs of struggling to breath, lethargy, or a high temperature we should be able to keep her home. Let's not only pray for that but that she can kick this bug soon.

Cute girl.

I could look at this face all day.
And she is doing well...about a week ago she was able to go one night nose hose free. That hasn't happened in 8 months! And she is about 2/3 off the hose during the day. We're getting there.

Our experience with a CHD.

With Congenital Heart Defect {CHD} Awareness week just around the corner, and a challenge to fill Pinterest with the amazing faces of those affected by a CHD, I decided to sit down and take a minute to document my experience with the CHD world. A world that just over 10 months ago I knew little (to nothing) about. I am a mom who decides that it would be a good idea to have our babies born at a hospital with a NICU "just in case"...but with little thought that we'd actually need to use it. According to the ultrasound we were anticipating the birth of a healthy baby around the beginning of April 2011. Darla Jane was born on the evening of March 30th. A cute, cute little thing who looked as healthy as can be. (But a pulse oximeter test was not done. Had it been, her defect might have been caught right away.)

We were excited to welcome our 4th child into our family. The other kids got to see her that night as well as the next day. The pediatrician made his rounds that morning and noticed a murmur in listening to her heart. The hospital's cardiologist just happened to be there when he was examining her and suggested that an echo be done that afternoon "just to be safe". He brought Darla Jane back into our room telling us she looks great, he did hear a little murmur but that it was probably nothing. They were just going to check later in the afternoon "just to be safe". So I got to keep our baby girl in our room most of the day until they took her down for the echo. No big deal....well, it was a big deal. My husband had gone down with her and when he came back without her, suggesting that my mother-in-law should take the kids on a walk, I knew there was something going on. The minute they walked out of the room he broke down, and so did I. All we were told was that the left side of her heart wasn't working that that she would need to be stabilized in the NICU and transported to the children's hospital. So less than 24 hours after giving birth I was requesting that I be released so that I could go with her. After getting to the children's hospital and having a complete echo done Darla Jane was diagnosed with Hypoplastic Left Heart Syndrome. And we where thrown into the whirlwind of CHDs. We were told there were two options, list her for a heart transplant or head down the road of a 3 stage open heart surgery route that would essentially "re-plumb" her heart so that the right side of her heart will serve as the left, and pump her blood out to her body.

Darla Jane still needs one more open heart surgery to complete the 3-stage process. She will still need periodic heart catherizations to enlarge the stent that was placed to hold open her narrowing aorta. There is talk that she will eventually need a heart transplant because the right side of the heart, which is the smaller side, is not made to do that much work for a life time.

But we try not to focus on that and just focus on today. Even if today means having Darla Jane hooked to an oxygen tank and monitoring her blood oxygen levels, or taking her to get a synigis shot so that she has less of a chance of being hospitalized for a cold, or giving her her twice a day medications. We are thankful for every day we have with her, and our other 3 children. Having a daughter with a congenital heart defect has made us more aware and sympathetic of the struggles that others go through. It has made us count our blessings and look toward the source of those blessings. Having a daughter with a congenital heart defect has been one of the hardest but also one of the most rewarding experiences in my life.