I realized it's been a while since I've updated on Darla Jane.  Which for us we are going with the no news is good news idea.  Darla Jane is becoming more and more independent.  She is now up to 6 steps on her own!
And she is also eating a lot more food!  She still is not a fan of anything little or crunchy, but if you give her a whole piece of pizza or a bowl of spaghetti she will down it.  We are still working through her intolerance to milk.  Darla Jane still is drinking the sensitive formula but we are hoping she will grow out of that.
We are still on oxygen at night...however we were able to go a few nights with no oxygen when we were visiting the Brewers in Oregon.  I guess there is something to be said for living at (or near) sea level.
We have just been enjoying summer with the family.  Oregon, Aspen Grove, camping, Lagoon and Heart Camp...we have to get as much fun in before we start our winter lock down.
We will have another cardiology appointment on the 7th of September which will include a sedated echo.  Prayers for a good report.

it's all cool.

Little Miss had her evaluation from Kids on the Move, an early intervention program. In all the areas she was tested she had a minor delay although not enough for needing help. Except for her motor skills. Laura told us that because she wasn't able to get up on her hand and knees, pull to standing or cruse along the furniture it would probably be a good idea to have a physical therapist come and help her a little bit. It may not be long that she needs it, but they are going to be available to us for as long as she needs, to be walking comfortably. Also as we go along with PT, if we notice that she is not developing in any other area we can easily pick up help there too.
I am sure our little miss will pick things up quickly and show the world what a rock star she is. But it is nice to know, that if she doesn't, that we have the resources available to help her where she may need a little extra help.

Go Darla Jane! Go!

shots

one of the saddest things to see on a little one is band aids, from where I they got shots. Even when they are cute band aids it still makes me sad. Darla Jane had 4 shots, it would have been 6 but we decided to delay them longer so that she won't have as many today. Today was Darla Jane's 12 month check-up.

She is ...21 lbs - 76%!!

27.5 in - 4.5% (little miss)

head circ.18 in - 85%

So the short girl can gain weight! And she's got a Brewer/Colton head...poor thing.

We also were referred to "Kids on the Move". An early intervention program that will come and assess Darla Jane's development in all areas and, if necessary, line her up with the therapist that would best be able to help her. I think that as I answered the questions at the pediatricians office and most of my answers to whether or not she could do the skills on the list were "no" we realized that this might not be a bad idea for Darla Jane. Her assessment is schedule for Friday afternoon.

a year.

As I sit back and reflect on this last year I cannot help but have a smile on my face. A smile that often wasn't there, rather a look of sadness, worry or uncertainty was in its place. But for today there is a smile. A smile as I think about not what my daughter went through, but that she was strong enough to overcome. A smile as I think about all the moments that I was able to share with her that, at times, I didn't know if a would. A smile that was there as I watched her learn to drink from a bottle at almost 2 months of age, roll over, learn to verbalize her emotions, "crawl", sit up, smile and go on as though the world, for her, was perfect. I cannot fully express my gratitude to so many of you who have gotten us to where we are today. I know the faith and prayers of so many of you have made the difference in this journey.

Darla Jane is truly a miracle, a blessing in the lives of those in our family and those she comes in contact with. Her smile can light up the down hearted. Her presence teaches all that there is so much more than just us.

She is so much more than a child with a heart defect. She is a teacher, an inspiration and and angel on earth.

We would love it if you would take a moment to leave a comment for her, something that when she read it, as she gets older, she will know of the difference she has made in the lives of so many from the time that she was born.

P-A-R-T-Y!!

Photo shoot of the birthday girl!

good morning birthday girl.

...not quite awake yet.but still excited for her birthday!
maybe....

a happy face.

Darla Jane really is such a happy little girl. I only wish I could capture the oh so cute laugh that accompied that smile as I was taking these pictures. There is definitely a light about this girl that cannot be overlooked.

a year in the life

...of our little miss. as captured by instagram. This is a little photo collage I'm printing off for darla jane's birthday, which is LESS THAN A WEEK AWAY!

happy girl.

Darla Jane really is such a happy one. And also probably the most "chatty" of our kids...believe it or not. We truly count our blessing that she is doing so well and is able to bring such happiness to our family.
We are still riding the oxygen roller coaster. However, most days lately she can go without it (except, of course, when I get her ready for a photo shoot). And then she will need it again at night.
She is able to get around quite well, not officially "crawling" rather it's a right leg forward push...but she's getting it.

Our little miss is really good at clapping when you say "yay!" and will often wave back when you wave at her. She is even learning to give "kisses". Ever since I looked at the calendar and realized it was March I have been overwhelmed with emotions of love, gratitude and humility for all that we've been through this year and the uncertainty that we would even be where we are at right now. Thank you ALL for your love and support as we've up and downed through this year and as we continue on this amazing journey with our little Darla Jane.

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.

cute baby girl at 10 months.

I am IN LOVE with these pictures my talented friend Natalie took of Darla Jane. I am going to use them in some of my congenital heart defect awareness efforts. If this face doesn't convince you to spread awareness of the #1 cause of birth defect related deaths in babies, I don't know what will.

9 months old

On Monday we had a 9 month check up for our little miss. Here are her stats...
Height - 26.5 inches 19%tile
Weight - 19 lbs 53%tile
Head circumference - 17.5 inches 78%tile
She is still on the short side but growing. Last time we checked she was in the 11%tile for her height. And she actually went down a little in her weight "ranking" but as you can see...still not a problem. I really can't get over how amazing she does at gaining weight (she gets that from her mother).
She also got 5 pokes, between her 9 mo immunizations and her synigis shot. But so far...no throwing up so maybe the synigis isn't my enemy after all. She was a little cranky yesterday but today she's been great!
We are on 1/4-1/2 liter of oxygen at nights and during the day we are off the oxygen about half the time! Working slowing but getting there. I had a heart mama say that the day they were done with the oxygen she just wanted to take her baby and run around the block, just because she could. Well, I know that feeling. And although I won't be running Darla Jane around the block in the middle of winter I do take her to the farthest corners of the house that her hose would never reach on the days she's tube-less.

we sure are loving this girl!

and she is 9 months old!