Heart: HLHS

Hypoplastic Left Heart Syndrome
(HLHS) is rare but serious. It is the most common
cause of death from heart disease during the first
week of life. With surgical repair or a heart transplant,
about 70% of children born with HLHS live at least 5
years.

In infants born with HLHS, the left ventricle and the
aorta are small and underdeveloped. The left ventricle
is the lower-left chamber of the heart and is
responsible for pumping oxygen-rich blood to the
body. The aorta is the artery that receives oxygen-rich
blood from the left ventricle and sends it through the
body. When the left ventricle and the aorta are too
small, they can't supply the body with enough blood.

Also in HLHS, the mitral and aortic valves are often
narrow or absent. The mitral valve acts like a door that
opens to let blood into the left ventricle. The aortic
valve lets blood out of the left ventricle. Without these
openings, the left ventricle is shut off from the rest of
the heart and the aorta. That means the left ventricle
cannot pump any oxygen-rich blood into the body.
Instead, the oxygen-rich blood returns to the right side
of the heart through an atrial septal defect (ASD), a
hole in the wall that divides the right and left sides of
the heart.

In newborns, the atrial septal defect lets oxygen-rich
blood reach the body because blood can pass from
the right side of the heart and into the aorta, without
going through the left side of the heart. The right side
of the heart pumps blood into the pulmonary artery,
and then a channel called the ductus arteriosus
connects the pulmonary artery to the aorta. The
ductus arteriosus is an important pathway in the fetal
heart, but it closes in the first few days after birth.

Until the ductus closes, oxygen-rich blood enters the
right side of the heart through the atrial septal defect.
The right side of the heart then pumps blood into the
pulmonary artery, and the ductus arteriosus lets blood
flow into the aorta. The aorta carries this oxygen-rich
blood to the body.

This means that for the first few days after birth, the
baby may seem normal because oxygen-rich blood is
reaching the rest of the body. But when that ductus
closes, oxygen-rich blood no longer has a way of
entering the aorta.

When there isn't enough oxygen-rich blood reaching
the body, the baby's skin may turn blue. This is called
cyanosis. Once this happens, the baby needs surgery
or a heart transplant right away.

Taken from Hope for HLHS

Heart: Happy Heart Month!

Heart Month means something different to me these days. Since joining the "Heart Mom's" club, I have learned a lot but realize I have a lot yet to learn. I thought I would share a few facts about Congenital Heart Defects (CHD) this month. I'd like to post one every day, but I'm not going to commit to that. :) So we'll see where I end up and we'll learn some new stuff together.

"Most people are unaware that up to 1.3 million American alive today have some form of congenital heart defect and about one-half of these individuals are less than 25 years of age.
At least nine of every 1,000 infants born a year have a heart defect. That’s almost one percent of live-born infants. Sometimes the defect is so mild that there are no outward symptoms. In other cases, it’s so severe that the newborn becomes ill soon after birth. In still other cases, signs and symptoms occur only in later childhood.
In the United States, about 36,000 children are born with a heart defect each year. Most of these children can be helped by surgery even if the defect is severe."
Taken from The American Heart Association

A few pics

Here's a round of pics from the first half of January. 

 

Bailee loves to take pictures, so here's one of Maddox and Mommy.

Maddox is learning to like solids, slowly but surely. He does love the teething biscuits, when he can keep a hold of it.

We had a friend date with Kin and Lyss. We had lunch at the mall and then went to watch The Princess and the Frog. Super cute movie, the girls liked it....the mommies loved it. Classic Disney style, good music, creepy villain(s).

Best friends. Awwww.

Cute Maddox after a bath. Love the lack of hose and stickers! Such a cute smile, and growing so fast! I think by heart baby standards he's pretty big.

I finally finished his shelf. So cute, I love it.

Maddox's first play date with Kambria. They were playing on the floor next to each other and we noticed they were holding hands. Awww. Kambria kept sucking on Maddox's fingers, funny.

Blah....Blah....Blah

That's how I've felt lately. So I haven't posted. I don't have a 'good' reason. I'm not overly stressed or overwhelmed. I'm not even having a ton of anxiety. It's just blah. I'll get over it. People I know have it worse, they're going through much harder trials, I just need to buck up and be happy. Seriously, so blessed. (Annie, that was kind of for you. I need to look up that blog again)

Maddox is doing so well. I'm enjoying time with out the O2. It's nice to not trip over the hose going up and down the stairs, being able to unhook him to run into the store, or take him to the mothers lounge at church to change him without lugging the tank. Oh yeah, I have been taking him to church. (insert gasp) His stats seem to be remaining stable and about the same on or off O2. He's down to just 2 meds, twice a day. I should have some extra time around here somewhere. He's so much like 'other' babies right now. Not sleeping, making a lot of noise, eating me out of house and home, and trying to mobilize so he can get into things. Can't wait for that. Love the noise. Don't so much love the 'not sleeping' part, or the continual feedings. But I'll take those over some other things, refer to 3rd to last sentence in first paragraph. He's such a cute little guy, adores his daddy and big sister (and maybe me on occasion...especially if I'm holding the bottle), and is growing up way to quickly. Could someone please push the 'pause' button for me?

Bailee cracks me up. Every second of every day. Ok, well that's exaggerating a little bit. She always has funny things to say, some comments even make it on my face book status. Right now she's preparing for her first talk in primary. I'm not sure what she's going to talk about, she won't tell me and she doesn't want help. I swear she's 3 1/2 going on 14! I thought I had a few years before I had to deal with the drama of being a girl. Not so, as we learned last weekend while she was playing not so nicely with 4 other little girls. Oh drama. And that point was re-emphasized yesterday when for the first time ever her very best friend chose to share her snack with someone else, and wanted to play with someone else, and didn't have the time for Bailee. Until they started arguing about who got more presents than whom for Christmas and decided to not participate at Dance and sit and pout.Oh what do I have to look forward too in coming years? Hopefully my 'non girly' genes will show themselves in her soon. Let's skip the drama, ok?

I love having my computer hidden away in the basement. I am spending much less time on here, and more time cleaning the house. For which I'm sure Luke is grateful. This also contributes to lack of posts, and lack of comments on others blogs. Sorry. One of these days I will find the desire to find the camera, take some pictures, edit some pictures and post some pictures. Maybe I'll fit it in between lunch and 'no' nap time. But not today. We're off to the Dr. for weight check (not for me, thankfully) O2 check, and shots for all 3 of us. Yes, I'm finally getting the H1N1 shot for Bailee and myself. Now that I don't have to go stand in line for 6 hours in the cold at the health department. Enough sarcasm for the day? Me too. Signing out.

We interupt the silence with an update....

...with no pictures. I can't find the cord for my camera. But I do know where the camera is, so at least I'm getting somewhere.

Luke said I couldn't start anymore projects until I finish the office/scrap room. Maybe I should back up.

A long while ago I had this great idea to turn the small downstairs bedroom into an office/scrap room. Since it was empty, I thought it was the prime time for a makeover. I began by peeling off wallpaper that has been on the walls for a really long time. It started pretty easily, then I realized that the adhesive/paper backing was not coming off. I tried a lot of different things, including a power sander, and just was not getting it off. With the holidays approaching, I wanted the scrap stuff out of the family room and the mess cleaned up. So what else could I do but move it into my unfinished room? You would have done the same, right? So I loaded up the unfinished office and pretended that I didn't care what the walls looked like. If that had been true, I would have spent more time in here. Wait, maybe it was a good thing after all. Hmmm.

There are a few other projects that I want to do. Mostly, a furniture make over. (sanding and painting my wood furniture up stairs, and re-covering the cushions.) and a kitchen make over (painting the walls, cabinets, and doing something with the counter tops/back splash). Luke has been pretty adamant that I'm not starting another project while I have a half finished room. He doesn't insist on very many things, so I'll give him this one.

Last week I cleared out the room and began painting. I just, minutes ago, finished the painting. Now I just need it to dry so I can fill the room up again. Maybe I'll actually find some time/desire to pull out paper and pictures and re-kindle the love for my favorite hobby. I have two kids, do I get to have a hobby?

While Dad was here at Christmas time, he ran a phone line to the office and I moved the computer downstairs. LOVING this! Miraculously I am spending less time on the computer. I know, right? This is the reason that I can't find my camera cord though, it's out in the family room under the huge mess.

Christmas was so much fun! We had a full house, and I loved it! Bailee was SOOOOO excited about Santa this year, so that was fun. Though, I have to admit, I'm cursing Santa at this very moment. He brought Bailee what he thought was lip gloss. It turned out to be finger nail polish. Can he read? It didn't seem like a big deal though, until tonight when I discovered that dear sweet Bailee had painted nail polish on the back side of a LIBRARY MOVIE. That we've had in the house for less than 5 hours. UGHHHH! Needless to say, the nail polish went in the garbage and she's lost all DVD/CD privileges until further notice.

Maddox is doing pretty good. We just found out yesterday that he has bronchitis. YUCK! Poor little guy! We take him to Cardiology tomorrow for chest x-rays and such, so hopefully he looks/sounds a little better then. I just hope he's well enough to stay out of the hospital.

Anyways, as soon as I find some order in this chaos, I'll add some pics. There are some pretty cute ones!