Chocolate Nirvana

I didn't get to go to the Anchorage Blogger meet up yesterday sponsored by Scribbit so I decided to stop at the Modern Dwellers Chocolate Lounge and get a cup of drinking chocolate. Lest you think this was mere hot chocolate, let me correct that erroneous idea. No no no...drinking chocolate is about as far from that as you can imagine. It's like if you took a bar of really high quality chocolate, melted it, poured it into a cup and drank it. It's thick, rich, ohso divine....ohhh. For those who have read them - in the old Agatha Christie mystery books, her detective Hercule Poirot drank chocolate, now I know what it was. As I drove home, ingesting my chocolate and trying to get the last swigs of it out of the cup, I thought it was the closest you could get to having chocolate intravenously fed. It was absolute decadence...ohhhhh....now I must be left to my cravings.

CHD Awareness Week - Post 6

I hope I haven't caused any overload this week - but I know how important this topic is to a lot of people. I get so caught up sometimes in Zoe and how she's doing, I sometimes don't realize the seriousness of what she's living with. She's done so well with her surgeries and if you were to look at her, you would never realize that there was anything wrong. I love to read about other heart kids online, and I love the support group I'm a member of, and it serves as a reality check for me sometimes to hear about other kids who haven't been so lucky. It scares me sometimes, but although I am optimistic, I do need to keep my feet on the ground. Am I assured that she will live a long and full life? No. The oldest people who have had her surgeries are only a little bit older than me (so early 30's). No one really knows how long a heart can function with only half of it working. We know that she will live to adulthood, but beyond that who knows? And who knows what new treatments and surgical procedures will be invented between now and then? (Provided enough research funding is provided). Some of the things are pretty scary though - stories of kids collapsing and dying when they seemed to be doing so well, they only had to see their cardiologist once a year. Kids who don't make it through surgery - I'm very very lucky that I have my girl and I try to not let a day go by that I don't appreciate that fact.

CHD Awareness Week - Post 5

To everything there is a season - as it were. I have recently gone through some cycles - not of grief - but I don't know what of. Maybe it is a little. 4 years ago, I was sad, and scared, and wallowing in "why me?" "why her?" I didn't find a community of likeminded people in the Hypoplastic Right Hearts Group until Zoe was about 2. I was so happy to find them - here were people who knew not only what it was like to have a child with heart defects (or have them themselves) but they knew what it was like to have the SAME defects my daughter had! Actually, they have have different defects, but they all resulted in a Hypoplastic Right Heart - what Zoe has. I think that was my phase of needing more support, because Zoe still needed her 3rd surgery, and I had a lot of questions about what that would entail, and how would I know she was ready, etc. Now that that is behind us, I am in a phase of "what can I do?" Actually, ever since Zoe was a baby, I wanted to do something. I saw how little awareness people had about heart defects - what they are, what they do, how you treat them, and how you can't ever really truly FIX most of them. I wanted to start a foundation of some kind to do that. However, as time went on, I found other resources out there advocating for awareness and research for heart defects. I think I still have no idea what I'm doing, but I think I want to start a chapter in Alaska or at least put on some fundraising here in Alaska and have the funds go to one of those organizations. The one I've been in contact with is the Children's Heart Foundation. I found out about them because they published the book "It's My Heart" (on yesterday's list of required reading) which I got from the Seattle Children's Hospital when Zoe was a baby. The Childrens' Heart Foundation raises money to fund research for CHD's, and so far they have their headquarters in Illinois, and chapters in Florida, California, Oregon, and a few others - but not very many. I need to recruit others in Alaska to the cause, so if anyone is interested let me know! :)

I also was wishing I could get involved on the advocacy front as well. Several heart organizations got together for something called Lobby Day in Washington, DC this past Tuesday. This event was a coordinated effort to have lots of people affected by CHD's go to Washington and lobby as many Senators and Congresspeople as possible for a bill called the "Congenital Heart Futures Act" which would set aside increased amounts for funding for research, a national registry, and have CHD's finally classified by the CDC as chronic disease that needs lifetime management and care. You'd think something like that would have been done already, but apparently not! I was asked if I wanted to participate because there was no one from Alaska already going, and they had identified our Senator Murkowski as a "key person" they wanted to reach. I of course was VERY interested, but then I got fired and so there was absolutely no way I could fly to Washington to take on the world. However - there is still hope! There's still the good old letter writing campaign. Still - it would have been cool to go.

It's late and I'm out of steam - night night - I have 2 more posts to go! :)

CHD Awareness Week - Post 4

As I've gone through the past 4 years with Zoe, I find myself thinking about the way things used to be for kids like me. The very first operations on the heart were done in the 1940's. One of the most famous was the Blalock -Taussig Shunt. This surgery was done to help what was known as the "blue babies" - or children suffering from a set of defects called Tetrology of Fallot. This surgery is the first surgery in the 3 stage set of operatios that are curretly used to treat single ventricle defects such as Zoe's set of defects. The first open heart surgery was done in the 1950's - when they were first able to use an oxygenator to maintain blood flow during the procedure. One of the pioneers of modern surgery was C. Walton Lillehei from the University of Minnesota. He was the first to correct a heart defect using hypothermia. He also successfully used a method of cross-circulation to maintain blood flow during surgery. What this was, was using another person and their circulatory system - it sounds like a mad scientist thing, but he did achieve some success with it. In this time period - of the 40's and 50's, it was insane how many failures they had, but yet all the doctors kept pushing on. It would have been so easy for them to say "oh forget it, this is an impossible task, it just can't be done" and give up, but they didn't. I am grateful to them for pushing on, and grateful to the legions of hopeful parents who entrusted their precious children to these doctors in the hopes that just once, their child would be the one who made it through. All too often, they didn't make it, and it was the last time they saw their children. I am grateful to them all for having the will to say that it was not acceptable to doom these children to an untimely death, and to not give in to the established thinking that said you could not operate on the heart.

I will leave you now with a list of "required reading" and viewing - as it were:

This is a book published by the Children's Heart Foundation, called "It's My Heart", which gives a rundown of many different heart defects, what they are, and the different surgical techniques that are done to help these defects (notice I didn't say "fix", unless they are repairing a hole in the heart, there really isn't any fixing for defects, just palliative things that make it so the child can live a good life).The next book is a biography of C. Walton Lillehei - I first read it in the hospital while Zoe was recovering from her Fontan, and I gotta say I was pretty mesmerized, it's a great read and an amazing story.This next book is one I haven't read yet - I just got it from the library, and I intend to read it. I've heard good things about it though. :) It's called "Walk on Water" and it's a profile of surgeons at a top hospital back east - I think in Ohio.Now for the required viewing. This movie was first recommended to me by Zoe's surgeon for her first 2 surgeries - Dr. Gordon Cohen at Seattle Children's Hospital. It's the story of Dr. Blalock, and his assistant Vivien Thomas as they worked to create the Blalock-Taussig shunt. It's called "Something the Lord Made" and you can get it on DVD or catch it on HBO sometimes.

CHD Awareness Week - Post 3

Well oh crud - I didn't post yesterday, so I guess I'll have to do 2 posts today to make up for it. As you can imagine, this topic is near and dear to me, and I have learned a lot in the past few years. Once we got the news of our daughter's condition, I pretty much got a crash course in pediatric cardiology - as do other heart parents. In this post, I will talk a little about heart defects, what are they, how do they form, and other facts about them.

A congenital heart defect is basically any abnormality in the heart that is present when the child is born (that's what "congenital" means). It can be mild - perhaps a problem with a valve, or a small hole that maybe only warrants a "wait and see" approach; or it can be anywhere on the continuum to severe. The set of defects that Zoe has are known collectively as "single ventricle defects" - because there is only a single working ventricle in the heart. According to the American Heart Association, these types of defects are some of the most complex defects that there are. Interestingly enough, my daughter has Hypoplastic Right Heart which is rarer than it's counterpart Hypoplastic Left Heart, however, in this case the rarer defect of Hypoplastic Right Heart is LESS severe than Hypoplastic Left Heart, although they are generally treated with the same set of 3 surgeries. It goes against the norm of things that are more common are usually not as big a deal as things that are less common. Go figure.

As many of you know, the heart is one of the first things to develop in an embryo. The heart starts forming and beating before the woman even knows she is pregnant - within the first few weeks of development. No one knows what causes them. In some instances it can be caused by a specific illness the mom had if it was early enough, or perhaps some medication she was on. Some defects are associated with Downs Syndrome (AV Canal defects) but for the most part it's completely random and no one knows why they happen.

Because the heart starts forming so early, when something goes wrong in it's development, the heart will kind of form itself in a different way because of the initial thing that goes wrong, and that can lead to other defects, which is why a child RARELY only has 1 defect, there usually are multiple. Zoe has Pulmonary Valve Atresia, and Ebstein's Anomaly, AND an Atrial Septal Defect (or an ASD - a hole between her 2 atriums). I think in her case, the ASD formed so that blood could have somewhere to go because there was no way to get out of the right side of her heart since those 2 valves are not functioning. And obviously, with no blood flow, the right side of her heart did not grow. Normally a hole in the heart (a VSD - Ventricular Septal Defect or an ASD) is a bad thing, but with single ventricle defects, the doctors want there to be one so the blood has somewhere to go to get out of the heart in some way.

One question I got asked a lot when I was pregnant was if I would need a C-section or whether they would do surgery in utero. The answer to both of those is "no". Babies with heart defects don't generally have problems before they are born. The reason for this is: 1. They are getting oxygen from mom anyway, through the placenta. 2. They aren't using their lungs yet, 3. There are some natural holes in the heart that everyone has before they are born. These are the Ductus Arteriosis and the Foraman Ovale. Normally, these close within a few hours to a few days after birth. Babies with heart defects can tolerate labor and delivery just fine, and are generally pretty pink when they are born. They don't run into trouble until those holes start closing, shutting off their oxygen supply (if that is the type of defect they have). Interestingly, sometimes in a healthy baby, those holes DON'T close on their own, which is also a heart defect! (They are called Patent Ductus Arteriosis, and Patent Foramen Ovale) However a pretty simple surgery, or even medicine can fix that for them.

There are at least 35 heart defects that have been identified, and roughly 1 out of every 100 babies is born with one. In the world of birth defects THIS IS A LOT. Here are some ways to put it in perspective. I have about 163 friends on my Facebook page - statisically, 1 of them would have been born with one. There were about 100 people in the last office I worked in. Statistically, 1 of them would have been born with one. I had about 1500 kids at my high school. Again, statistically speaking, there would have been about 10 to 15 kids with a heart defect at my high school. Who were they? I don't know, maybe in actuality we didn't have any, but I would be willing to bet there were some. Maybe there really weren't any because nearly 30 years ago(my age), they were still learning about new surgical techniques for these, and mortality was a lot higher. We are doing better now, however, deaths from heart defects are still the leading cause of birth defect related deaths in infants during their first year.

There is still a great need for awareness and research. Before I had Zoe, I knew nearly nothing about heart defects. Most people don't, which is pretty shocking to me considering how common they are. As far as research dollars go, heart defects are really underfunded. For example, for every dollar provided by the National Instistutes of Health (NIH) only 1 penny goes for pediatric research in general, and only a fraction of that penny will go for research for heart defects. The American Heart Association took in over $600 million dollars last year (according to their annual report) but spent only $10.1 million on heart defect related research. There is a lot more to do, clearly.

I will touch on more information in my next post about what you can do, what is being done, and where you can go to find more info.

CHD Awareness Week - Post 2

Yesterday I posted about how our journey began as parents of a daughter with CHD. I will continue that today. Zoe spent the first 5 weeks or so of her life at the Seattle Children's Hospital. I cried the first time I saw her laying in the infant ICU, hooked up to various monitors, with IV lines running and a feeding tube in her nose. I thought how unfair it was that a baby so small should be subjected to so much, and this was before they cut her open! She spent 2 weeks in the Infant ICU before her surgery. That surgery went well, and I went back to see her in the cardica ICU, and cried some more. This time, it was even worse. Those of you who have had a kid undergo surgery know that they look different when they come out, and it's not just the fact that they have a scar and lots of machines going, they really do look physically different. It was hard to see her like that, but I and my mother in law and sister in law spent some time by her side, and then left after a while since there wasn't much of anything to do. So I went back to the hotel where I was staying. Several hours later, I received a call from the nurses saying that Zoe's oxygen levels were dropping and they couldn't get them back up. I needed to get there ASAP so I could sign a consent form for them to put her on an ECMO machine. I remember crying some more and just praying that God would save my little baby girl. I was so scared when I got to the hospital, not just because of what was happening to her, but because when I saw her, she didn't look blue! The surgeon came in and didn't believe what the monitors were saying because she didn't look cyanotic. That freaked me out because I thought "if she doesn't look blue at 47% oxygen what on earth will I do if something happens at home??" I signed the consent form and they hooked Zoe up to the ECMO machine. They assured me that it would be only for a day or so until they found out what the problem was and could fix it. The next day, Zoe went in for cath and they discovered that her right pulmonary artery had collapsed, so they put a stent in her artery to open it back up. This however, did not mean she could come off the machine. She ended up staying on for about a week or so because everytime they tried to unhook her, her oxygen levels would drop too low. Now, a bit of explanation - ECMO means "Extracorporeal membrane oxygenation" and what that means is that the machine pumps blood out of the body, oxygenates it, and pumps it back in. How does it do this? By the means of 2 cannulae (tubes) inserted into the main blood vessels in her neck. For a week, I got to look at my poor baby laying on her back, with a breathing tube down her throat and tubes coming out of her neck -stitched on so they wouldn't wiggle. It was awful. If I thought Zoe looked awful after surgery, it was even worse after that! We were lucky though, because other kids on that machine suffered awful things like strokes while they were on it, and we escaped with none of those. Eventually though, Zoe recovered enough to be unhooked, and the rest of her recovery went uneventfully, and we came home to Alaska in September - still with a feeding tube however, since all that time in the hospital had made it so Zoe had no idea how to eat. We had to teach her all from the beginning.

Zoe had her 2nd surgery in February of 2005, which was the Bi Directional Glenn. This procedure disconnected her Superior Vena Cava (the blood vessel that returns blood to the heart from the upper part of her body) and connected it directly to the pulmonary arteries. In stark contrast to her 1st surgery, Zoe flew through this one, and was out of the hospital completely in less than a week!

Zoe had her 3rd surgery this last March. This was the Fontan. In this surgery the Inferior Vena Cava (the blood vessel that returns blood to the heart from the lower part of her body) was disconnected and a shunt connected it directly to the pulmonary arteries. This also was an uneventful recovery. Timewise, she was in the hospital for about 2 weeks, but we had no setbacks in her recovery.

I am grateful today to have my little girl with me. I know that other children with similar defects are not so lucky and they don't make it. Tomorrow's post will deal more with the facts about heart defects.

CHD Awareness Week

Today marks the first day of CHD Awareness Week - culminating on Saturday the 14th, as CHD Awareness Day. Yes it is also Valentine's Day, but it is also important to remember something else to do with hearts other than your love for someone (nice as that is). On this first day, I will share how we beame affected by this - how our journey began.

I wasn't planning on getting pregnant, but things happen, so at the end of 2003, I found myself expecting our first child together. Everything was going just fine, I wasn't sick, no particular health issues, everything just as it should be. I went for the 20 week ultrasound, and I was excited to find out what we were having. James didn't want to find out - he thought we could just be surprised and buy unisex things until the baby arrived. I thought he was nuts and obviously had never been in a baby store - why else would he say something so silly?? Anyway, that ultrasound went just fine - they thought we were having a girl! I went home and I think the next day or so I got a call from my OB. He said "So, I hear you went for your ultrsound yesterday. How'd it go?" I told him it went fine, and they thought we were having a girl. He responded "well they didn't get a good look at the heart, so we're going to send you for a targeted ultrasound. I wouldn't worry about it, the baby's so small at this stage it was probably just facing the wrong way. I just referred another lady over a couple weeks ago and everything was fine." I said okay, and the appointment got made. I made James come with me to that appointment. I was laying on the table with the goo on me and they were taking the ultrasound. No one really said anything to me while they were doing it, but the doctor and the other people in the room were talking amongst themselves about what they were looking at. I heard them say things like "well see this here is too small" and "you can see this is compensating" and I just got a horrible feeling inside. I knew something was wrong, I thought "they don't say things like that if everything is okay". I didn't completely lose it, but I remember holding James' hand so tightly and just starting to cry there on the table. They had one of the pediatric cardiologists come down after that, it was Dr. Brauner I remember (not Zoe's current doc). He came down and said that yes, there was indeed something wrong with her heart, and I would not be able to deliver the baby here in Alaska. She would need surgery, and there are no pediatric heart surgeons in our state. He said that most patients get sent to Portland, and some go to Seattle. They had me do an amniocentesis at that appointment as well to make sure there were no other genetic problems, so I had to go home and stay off my feet the rest of the day. We left that appointment with no definitive diagnosis, but I remembered them talking about the right side of her heart, so after I went home I spent a lot of time on the computer trying to find out all I could about right sided heart defects. As it happened, there was pretty much nothing. I found information on problems with the LEFT SIDE called Hypoplastic Left Heart Syndrome, so I thought, "well she must have Hypoplastic Right Heart Syndrome". As it happened I wasn't too far off, but it is more complicated than that.

I had monthly appointments with a perinatologist after that, and at about 37 weeks, I flew to Seattle to meet with doctors down there. They performed an ultrasound on me there - at which I nearly passed out so I had to lay on my side for it - it was a long one! Afterwards the perinatologist there and a cardiologist from the Seattle Children's hospital talked with me about what they saw. They said that they would do another amniocentesis to check for lung function because the fluid looked a little low around the baby, and the baby looked big enough so they felt that she didn't need more time to "cook" as it were. The cardiologist sat down with me and talked about her defects. He briefly got my hopes up, because he said that the doctors in Alaska couldn't see a tricuspid valve (the valve between the right atrium and right ventricle) but he could see one. He thought that if that was the case, then there might be a chance she would not need 3 surgeries, maybe only 1 much less invasive one. That got me a bit excited, but they wouldn't know for sure until they could do the ultrasound on the baby directly, instead of going through me. The lung function amnio came back just fine, so I got on the phone and told James to get down there since they would be inducing me the next day.

That next day was August 3rd. I spent the first 12 hours not in labor but having some cervical ripening stuff inside me since my body was not ready to be in labor at that point - I was still shut tight. They started pitocin at midnight, and thankfully kept it at a low dose and just made it go up gradually throughout the night. I slept soundly through the first 8 hours or so of labor. So nice! During the day, they kept increasing it and I kept going back and forth about "epidural or no epidural?" James told me to stick it out as long as I was reasonably comfortable between contractions - which I was. When it got really bad, they checked me, informed me that I was 8 1/2 cm dilated and the anesthesiologist was in an emergency C-section. No epidural for me. So Zoe was delivered pretty naturally ( I had IV pain meds but that didn't do much of anything). She arrived on August 4th, 2004 - 8 lbs 1 1/4oz and 19 inches. There was quite a crowd in the delivery room, and as soon as she was out and cleaned off, they whisked her off to the UW NICU to get started on her prostaglandin - that is an IV medication that they use to keep the ductus open. The ductus is a natural 'hole" in the heart that all babies have before they are born because they don't need to use their lungs. It naturally closes after birth, and in babies with her type of defect, that is when their troubles begin. Keeping it open allows them to live and be stable until surgery is done. They brought her back to us in an isolette all hooked up with lines and IV's ready to go by ambulance to the Children's Hospital. We saw her for a minute, and she looked pretty good - except for 1 purple toe! James and I freaked a little about that but we were assured it was perfectly fine. She left and I spent that night alone on the mother baby floor. That night I recieved a call from another cardiologist at the Children's Hospital telling me about our baby, and the definitive diagnosis of what she had. He said they did a cath on her (which is an x -ray from the inside - sorta) and she had Pulmonary Valve Atresia (atresia basically means it's absent) and Ebstein's Anomaly. Ebstein's Anomaly is a malformation of the Tricuspid Valve, and he said that in her case it was so severe that that valve might as well not be there (so much for only having 1 surgery!). These defects mean that she has a Hypoplastic Right Heart (Hypoplastic means it's too small). They said she was a beautiful baby and she was doing just fine. I was discharged the next morning so we could get right over to the Childrens' hospital to see Zoe.

Before we ever saw her, we knew she would be in good hands. Everyone in Seattle we talked to, who we told about our new baby at the hospital all said nothing but wonderful things abou the hospital and what good things they did there and how wonderful it was. Tomorrow I will share more about our journey - how it continued in those first few weeks. Later I will share information about Zoe's 2nd and 3rd surgery, and then I will talk more about other things related to heart defects and what you can do. I hope to do a post every day this week in honor of the occasion! Keep posted here!

Zoe's Wish!

Tonight James very helpfully told me as I was making Zoe's bed (because she peed in it last night since it was the 2nd time she's gone to bed with undies and not pullups) that the Make a Wish ladies were coming back to the house tonight to find out Zoe's wish. I was like "What?? When did they call you?" and he said "Um...last week...but they called today to remind me", and I of course said "gee thanks..." very sarcastically of course...men are useless at taking phone messages. He told me a couple days ago that someone called for me but he didn't know who, the number said "unknown" on the caller ID - I looked that evening and it wasn't unknown at all!!!

Anyway, I'm getting off point here. The point is, the 2 volunteers came over tonight with a special cake for Zoe to make her wish with. It was so cute. She put all the candles on it in a circle and they told her that when the candles were lit, we would count 1 2 3 and she would have to say what her wish was really loud so that their special wishing wand could hear it and grant her wish. She was so funny, she wanted to blow out the candles before they were quite all lit, and she yelled "I wish to go dig up dinosaur things" really loud. My camera was running out of batteries and I didn't know it, so I only got this one picture, but you can see Zoe with her cake before we lit the candles.
Luckily, we knew from their prior visit that we would most likely be going in a "dinosaur" direction with her wish, so the volunteers brought some info with them on this place in Texas called Dinosaur Valley State Park in Glen Rose Texas (a little southwest of Dallas it looks like) which has some cool fossilized dino footprints in a riverbed, and a place where you can dig for fossils, and a dinosaur park with over 100 life sized dinosaur statues. Looks pretty cool! They also had told us before that wishes wished for now would be granted in the springtime sometime, so I guess when Zoe is done with preschool for the year (at the end of May) we'll be headed to Texas for her wish trip! Yay! I think this will be so fun for her!!! So if anyone wants to drive to Texas in the springtime I'd be happy to see you!!!

Make a Wish update

The 2 very nice volunteers from the Make a Wish foundation came to our house a couple weeks ago now. They were very nice ladies and they brought Zoe some presents, so she liked them and still talks about it. They brought her a a tiny "Kota the Triceratops" toy - it looks like her big one except it's brown. If you touch it's back it growls and turns it's head and purrs. Pretty cute. They also brought her some cool flip top markers - very cool too, the caps don't come off, they just flip off and down to the bottom so they are always attached and you cant' ever lose them. The last gift was a dinosaur coloring book. She already had the same one, but she'd already colored it all up, so she was so excited to have a blank one to color in now. However a few nights ago I decided to get rid of the old one so I threw it out, and then a couple nights later Zoe saw the coloring book on her bed and said "Mommy this is my old book, where is my new one the nice ladies brought me?" and I said "What are you talking about that is your new one!" and she said "No it's not, this has stickers on the front and it's all colored up". And I inwardly thought "OH CRAP"...I threw out the wrong one!!!! So the next day or so I went to Wal Mart and got her another one (it was only 97 cents and even though I'm out of a job and temping for only $11 an hour I figured I could spare 97 cents for my little girl).

Zoe has not officially made her wish yet. The purpose of their visit was to just meet her and gauge her interests and then later she will officially "wish" for something. I think it will be definitely something dinosaur related. She has hit on the idea of "digging up dinosaur bones and dinosaur eggs". I saw on the Make a Wish site that another kid wished for something similar, and they got her to go on an actual dig with archaeologists. She ended up finding a prehistoric turtle I believe. Now, that is really cool but I think an actual dig might be a bit boring and involved for a 4 year old (the other child was 8 or 9 I think). Any ideas? I thought perhaps a trip to a good dinosaur museum, talking to archaeologists/paleontologists and maybe a simulated "dig" where she could dig in the dirt and actually find things but maybe the bones and eggs would be either planted there or plaster casts so she would be guaranteed to find something. That way she'd know about the process but not have the potential disappointment of being on an actual dig and not finding anything cool, not to mention the tedium involved in a real dig with brushing nonstop with toothbrushes and tiny little chipping tools. I think an older kid would be interested in that but a 4 year old might lose interest, even if they do have an all consuming interest in dinosaurs.

Hilarious prank video

Many thanks to my friend Julie and her blog for posting this video first. Watch the whole thing it's hysterical! I could totally see people back at BYU doing this.