It is Scenario 3

Yeah, that’s probably a really crappy way to break the news, but I have never been a tactful person. We found out today that our baby has Hypoplastic Left Heart Variant, of which there are three types: 1.)mitral atresia, 2.)mitral atresia with VDS with severe aortic hypoplasia, or 3.)unbalanced atrioventricanal defect with aortic hypoplasia. The doctor couldn’t tell for sure which one it was today based on the pictures, but it is one of them. I don’t know a lot about it yet. I do know that basically the left side of the heart is not developing: on the ultra sound it is difficult to see the chambers and the doctor could not find the aorta. We also know that the process to fix this is three separate open heart surgeries before the baby is 4. The first procedure takes place days after birth and has the highest mortality rate– between 15-25%. The second operation happens between 4-6 mos, and the third one happens at 3 1/2 years. I don’t really know what the first two procedures are, I was in shock when the doctor explained. The third procedure is replacing the aorta which is why they have to wait so long: they want the heart to develop as much as it does so they only have to do the surgery once. Statistically, this disease happens to 1 in 10,000 people and science does not yet know why. There are no genetic or environmental or prenatal care factors that are identifiable.

Statistics and facts aside, it has been a very emotional day. My little boy (yeah, he is a boy) has a lot of work to do when he gets here, and Matt and I have a lot of work to do too. I am still so happy that I am having my baby, but I wish I could have the surgeries instead of him. I know that God doesn’t give us more than we can handle. The next four months are going to be filled with a lot of preparation and education. I really don’t know anything. Will my baby now be induced? Will I have a c-section? when exactly is the first surgery going to happen? Should I change anything about pre-natal care? The doctor did say there is nothing we could have done to cause or prevent this from happening, so probably not. What does recovery look like over the lifetime? Gina already wiki-ed most of this information, but I think I should research it myself too. And there are so many things that I am sure I have not even considered yet.

And, because I have an opinion on everything, I already have decided I hate the term “defect”. My baby is perfect, he is just coming to us differently than other babies. There is nothing “defective” about his little heart.


I did NOT expect that

In the interest of full disclosure, I decided to post about my doctor appointment today. And I suppose, more than full disclosure, I just didn’t want to tell the story over and over… It is not a fun tale to tell.

Today Matt and I had our second ultrasound. During the first one, the baby wasn’t sitting in a good place for pictures. My maternal instinct definitely kicked in during the first (and then second) ultrasound as I watched the technician become more and more frustrated about the position of my baby. At one point, I almost told her it was her fault she couldn’t get the pictures, not the way my baby was sitting… which is, of course, ridiculous.

Anyway, our ultrasound started out in much the same way. As soon as she looked at the baby she said he was sitting in the same place. She struggled to get the pictures of the heart she needed and went to get the head ultrasound technician to come try. The head technician came in and worked on it for a while, but shortly gave up. She told us we would have to set up an ultrasound at the hospital to do a more in-depth viewing. She also said she wanted to do a consultation with the doctor before we left just so we scheduled the right appointment. At this point I am not too worried. I just assume baby is not in the ideal place to take the pictures of the heart and spinal cord. I even made a bad joke about how the baby was grounded to his womb until November, possibly early December.

Matt didn’t think that was nearly as funny as I did.

So we were sent to the waiting room until the next available doctor could see us. I do not do well with the waiting game. And I am pretty sure I drove Matt up the wall while we waited. Finally after about an hour of waiting, I went up to the front desk to see how much longer it would be. The receptionist told me that Amy, the head of the ult. depart. had just finished putting together her report.

This was when I did a bit of a double take. Why would Amy need to create a report for a referral for another ultrasound. Usually all you need is the referral stating why and a ROI so they can get the information. We were called back to a consulting room and waited for the doctor. Unfortunately my doctor is on a two-week vacation right now. So I did not get to talk to her.

The other doctor came in and basically told us there may or may not be something wrong with our baby’s heart. She gave us three scenarios: 1.) The ultrasound picture was bad and, due to how baby is sitting, we just can’t see everything clearly. 2.) There is a problem with one of the chambers or valves that can be fixed with surgery after baby is born. 3.) Baby has a heart problem that cannot be fixed with surgery.

Kind of scary.

And we don’t get to go see the heart doctor until Monday. They scheduled our appointment with her for before her schedule even starts. Then, after we have the heart echo, we are having a level 2 ultrasound to make sure all the other organs and body parts are growing and developing appropriately. Finally, depending on how the first two appointments go, we may meet with a genetic counselor who will help answer our questions if our baby does have a disease which falls under scenario 3.

The most disheartening part of all this: the doctor we met with told us that Amy is really good at her job (which I had already surmised, my doctor is top quality, best you can get for ob/gyn–ask Oprah) and she probably did see something wrong with the heart. I wish she hadn’t told us that before sending us home with a whole weekend to wait.

Matt and I knew there was a possibility of passing genetic illnesses to our children. My family has a history of Cystic Fibrosis (although, I was tested and found out I am not a carrier) and Matt has Nystagmus which is a genetic eye disease with varying degrees of severity (we do not know if we passed this on to our child yet). I just never thought, when planning on a baby, that anything else could be wrong. Heart problems were outside the realm of possibilities for my child, which is pretty ignorant, but it is hard to imagine your child being sick.

And of course there is fear. Fear that my child will fall into scenario 3 and, God forbid, die without ever really living. There is fear that even scenario 2 could go horribly wrong: what mother wants her child to have open heart surgery within hours of his birth? And there is a fear that somehow I did this to my baby. That I failed at being a mother already and I didn’t take good enough care of myself and my baby.

I am praying for scenario 1, planning for scenario 2, and freaking out about scenario 3. I know that there is nothing to do for the next few days but wait… followed by four more months of waiting. I know that if scenario 3 happens, Matt and I will adjust and do everything in our power to help our baby have the best life he can have for however long that may be. I also know that if it is scenario 2, our baby will be fine. A lot of children have valves and chambers fixed after they are born (it doesn’t make me any more eager for option two, again what mother wants her child to go into the OR right after birth?). And I know that scenario 1 is also common. It is possible that I just have to live a little bit of a nightmare for the next few days to find out my baby is healthy.

We would really appreciate your prayers this weekend as we play the waiting game. I will let people know what happened after the appointments.

ps: use of “he” was because I don’t want to think of my child as an “it”. just picked a gender for the blog.

Baby Baby!

The thing that I am most excited about in regards to Baby coming into the world is the love I will feel for it. My siblings all talk about how much they love their children– how in-explainable, powerful, overwhelming the love is and how it continues to grow every day. And, how with every new addition to their family, the love continues to grow, to expand to include everyone. I cannot wait for that. I already love my baby so much. Seeing baby on the ultrasound yesterday was the coolest experience of my life–To know there is a little life inside me that is dependent on me.

I cannot imagine my life without kids. It is something I have always dreamed of. Most women will tell you they were always planning their fairy tale wedding, but my fairy tales focused on the “happily ever after” with a house full of children. And not just biological children. I makes me so happy that Matt and I share the same vision for our future. We want a house bursting with love and laughter. We want a big family. We want both biological children and we want to adopt children.

I am so fortunate to have grown up in my family. The word family extends beyond blood. I have the most amazing family. I’m sure you’ve heard. Not only did I grow up in a family open to birthing a lot of children, but I also grew up in a family that accepted all children as their own. I have several cousins who are adopted (on both sides of my family), but you would never know just by looking at us. I think watching my Aunt and Uncle go through the process of adopting their boys really helped me understand how all-encompassing love is and how easy it is to love a child. I couldn’t imagine my family without those two!

It is so exciting to be on the threshold of adding children to our family. It is exciting to be so open to what our family can be. Matt and I have so much love to give and I know we will be good parents. I know, however our children come to us, we will love them and teach them everything we learned from our families.

I wish everyone could be this excited about life.

Ultrasound Dilemma

I am not perfect. I have several flaws. A few that pertain to this post include: I am indecisive, I am impatient, I have no filter, and I do not believe in secrets.

So how does that relate to the post? Well, tomorrow is our 20 week ultrasound for baby, and it is when we can find out the sex of our baby if baby is facing the right way.

So the question is do we find out or do we wait? enter Maria’s flaws here.

Due to my indecision, I have no idea if I want to know. Even making pro/con list shows my indecision: everything can be either a pro or con. I am impatient which would make is seem obvious that we would find out, but I have no filter/can’t keep a secret and everyone and their mom would know the baby’s sex. Normally this is not a problem, but, because I don’t have a filter, everyone already knows the baby names we picked out (Emerson Allen and Gracelynn Ann (see no filter)). I am just superstitious enough that I don’t want people running around saying the baby’s name before baby is here. It’s weird, don’t worry I know. Additionally, I am somewhat of a crazy feminist liberal hippie (check out some of my other posts). This means I don’t really want everyone to know the sex of my baby because I don’t want my baby gendered before it even comes out of the womb. I am seriously tempted to take up sewing just so I can make non-gendered clothes. I am that ridiculous.

Anyway, all of this adds up to having far too many discussions about “should we or shouldn’t we” and not making a decision. Unbelievable.

What about 9 million socially conscious and unified citizens all just stepping up and doing their part?

The title of my post is from the movie The Other Guys starring Mark Wahlberg and Will Ferrell. It is a great movie with some interesting facts at the end. The reason I chose this as my title is because it sums up my political views pretty well. It is why I align myself as a socialist: I really believe that if every citizen did their part we could create an amazing world to live in.

And right now, the MN legislators are NOT doing their part. Unbelievably, 70% of the legislators are continuing to take their pay even though the government has shut down. It kind of reflects how our society works: the people making the most money will continue to make it even when times are tough but the people making the least are the first ones to lose their income. Now, I know I am a crazy liberal, I totally get that, but I cannot understand how politicians, the servants of the people, can continue being paid while not serving the people.

This is one of those times I hope the good people of MN become socially conscious and unified. Instead of balancing the budget, making compromises, legislators are asking for “lights on” sessions to pass more legislation, they want to add policy to the bill (on abortion and gay rights), and are still taking their pay for doing nothing! Unbelievable. Please MN voters, do not let these people back into office, create a bill that says if the state shuts down again due to an unbalanced budget we reserve the right to remove our current legislators from office and put in people willing to make compromises, cut the pay to legislators, instill term limits, or do ANYTHING to help ensure this does not happen again. The people of MN need to have a long memory with this and create more checks to hold politicians accountable to the people.

The cynic in me knows that if this shut down keeps going strong, the first place where “necessary” money will run out is in welfare and schools– places where we should have a bigger cushion and we don’t. I am sure the last place our tax money will run out is with legislator’s pay.

People need to set aside their partisan ideas and really work together to find a solution that is best for most people without marginalizing others. In a government where the governor is Democratic and the congress is Republican, both sides need to understand that they will not get everything they want or satisfy all their promises to the people. Compromise needs to happen, and not compromise that suits their needs, but real compromise that does what is best.

I don’t often right politically motivated blogs– I just don’t feel like I know enough to have a real opinion. I am a social worker and my beliefs are filtered through that lens and through my experiences working with the least in our society. I often come off liberal, judgmental, and, often, righteous, and all this without having much experience in political science or law. I am just so upset with the state of MN and the people’s, apparent, lack of engagement. There are many way we could affect the shut down: legislators still receive mail (i think?) or send it UPS, start a petition, start a group on Facebook, go march on the capital, do ANYTHING to get the attention of our politicians and show them that we do not believe what they are doing is right. Tell them that we want the state to run and that we, the people, are willing to make compromises to do that.

Justice goes beyond “guilty” or “not guilty”

we have this terrible habit in the United States to look at those accused of a crime guilty until proven innocent, but the reality is all people on trial for whatever crime are innocent until proven guilty; whether Casey Anthony killed her daughter is not what I am talking about. The reality is that before the trial even started the our nation had her painted into a felon: an evil child killer–complete with fangs. And people’s comments (on Facebook) after her verdict showed how biased we were about her trial.

There is so much wrong with our justice system. So many problems that should be fixed. Jails are places of “punishment” and not reform; how could we have expected Anthony to come out a better person after serving time in our system (actually they wanted the death penalty, so she would not have come out)? We accuse and judge people before they have their fair trial. We give harsher sentencing to minorities: ethnic, racial, sexual, class, etc.

The whole thing is so wrong. It is when injustices happen in our justice system that I am truly grateful that I believe in Christ. Regardless of how the Anthony case came out, God is the final judge and jury (now obviously we don’t just let murderers and rapists run around doing what they want [most of the time]).

Casey Anthony is not the only person to get off with a questionable verdict recently; Dominique Strauss-Kahn, IMF former Chief, was recently found not guilty on sexual assault charges against an African immigrant hotel maid in New York. Why are we not outraged about this? Because Strauss-Kahn had enough money to hide this case and the plaintiff was not “important” enough for the press to care about her. And, unlike Anthony who will probably waste the rest of her life in squalor with DCFS down her throat the second she has another child, Strauss-Kahn has political hopes: he wants to be the president of France.

It is a lot scarier to me that a man accused of sexual assault (and now, rape) has the potential to be the president of France than it is for me to think a mother got off on charges of murdering her own child (yes, it breaks my heart, and makes me sad, but we weren’t going to help her anyway, we were going to crucify her).

My point is our justice system comes down to your worth in society. If you are “someone” and you “count” then the justice system works for you, but if you are disenfranchised, broken, or “less than” the justice system, which you should count on, does not work for you but against you.

It is so sad that Caylee Anthony never got to ride a bike, kiss a boy, go to prom, or any of the other things children, young women, and women do in this country. It breaks my heart. But look at the family Caylee came from: her mother accused her uncle and father of sexual assault, she had no father, there was a string of men in and out of her life… There are Caylee’s everywhere. And if we only notice them when they die, and only after a month of them being missing, then how are we protecting them or giving them justice? I don’t know if Casey was guilty or innocent, I only know what I heard on the “Today” Show, read in “People”, and was exploited by media. I was not on that jury and I did not have to render a verdict.

I like to believe that in some way the justice system worked today, but I don’t know if I do. We cannot change the verdict today (seriously, check your constitution), but we can change what happens tomorrow. Caylee is dead and the outcome of this case didn’t change that fact. It also doesn’t change the fact that there are thousands of children just like Caylee who cannot be saved because we don’t do what we should. Every new group of foster parents loses half after a year; so if there are 100 foster families, only 50 will be left after that first year. The demand is too great for our meager supply of foster families. Not to mention that we do not provide enough parenting classes for young parents, single parents, and parents from different cultures. I am just surprised at the reactions of my peers and wonder how involved they now are in helping save the other “Caylee’s” of the world.

And Now, I Rant like I’m a Crotchety Old Man

So the reason my dog looks like the Wicked Witch of the West in my last post is because he has some anxiety issues. And the 4th of July weekend did not agree with him. In fact, he is still shaking like a baby and anytime something goes “thump” he scurries back under the couch. It is very sad.

In other news, people are idiots. I think I almost got hit by fireworks four different times last night. People just shoot them off wherever they want in Chicago. It is ridiculous. I know Chicago Police have a lot to deal with during the weekend of the 4th and mostly ignore illegal fireworks unless someone gets injured, but couldn’t the city at least create sanctioned areas where it is okay to use fireworks?? I am not even exaggerating when I say there were people shooting fireworks off in crowds of people. There were giant expanses of the beach, free from human hands, feet, eyes, and other body parts where it would have been much safer to launch those things off. People are so DUMB and INCONSIDERATE! next year, we’re staying home…