Within Each Heart

Within each heart there are 4 chambers.  The right atrium, right ventricle, left atrium and left ventricle.  The right side of the heart receives poorly oxygenated blood from the body and pumps it to the lungs so that the blood can receive oxygen.  Then the oxygen rich blood flows to the left side of the heart and is pumped out to the body so that all of our muscles and organs can receive the nutrients needed from the blood stream.

Within Rowan’s heart there are 2 normal sized chambers, the left atrium and the left ventricle. The right atrium and ventricle are tiny and missing a valve. They cannot affectively pump blood to the lungs.  This is called Hypoplastic Right Heart Syndrome.

Within each heart there are major vessels and connections that are tubes which move blood either towards or away from the heart.  The Superior Vena Cava and Inferior Vena Cava are veins that bring poorly oxygenated blood to the right side of the heart from the upper and lower parts of the body.  Blood moves through the right side of the heart and into the Pulmonary Artery.  The Pulmonary Artery is the tube that goes from the heart to the lungs.

Within each heart there is a Pulmonary Vein that oxygen rich blood flows through as it returns to the heart, the left side this time.  The left side of the heart then pumps blood out through the Aorta and to the rest of the body.

Within Rowan’s heart, the Pulmonary Artery and the Aorta are plugged into the wrong place.  Blood from the right side of the heart pumps to the rest of the body instead of the lungs, and likewise, blood from the left side pumps to the lungs instead of the body.  This is called Transposition of the Greater Vessels.

What is incredible is that this is not a death sentence.  This is something that can now be surgically fixed thanks to the work of many dedicated cardiologists and surgeons.  Rowan faces a rough journey, but I look forward to the day when his teacher can begin her “Within Each Heart” lecture and he can raise his hand and say “Except Mine” and know that within his heart is an incredible machine that may not follow the lectures we all heard, but is unique unto him.

Pathway to Peace of Mind

Original post date – August 8, 2011

Well, I decided I was done throwing my pity party – though I fully believe I was entitled to it.  I’ve got my war face on and I’m ready to approach this with the strength and courage that is necessary.  I haven’t shed a tear in 3 days and I am starting to enjoy being pregnant again instead of feeling like I’m a time bomb for disaster.

The right frame of mind can make any struggle bearable.

So for those who find themselves in a situation where they don’t know how to handle what has been given to them, here’s what helped me out.

Fake it ‘til you make it – talk to other people about your situation in a positive manner.  Don’t let those “what ifs” seep into conversation.  My baby is going to have some time in the NICU but it’s amazing what doctors can do today and we have an incredible team assembled.  It will be rough, but he’ll be fine!  My son will be trying my patience before I know it!  You say it enough, you realize you truly believe it.

Zen your home – keeping my house clean, throwing out trash, listening to quiet music, keeping the TV off as much as possible, keeping the lights dim – all things that create a copable atmosphere where you are much less likely to be totally overwhelmed by something and journey back to “what if” land.

Make jokes – if you can joke about it, it’s going to be fine.  Doc and I have made many a jokes about Rowan later in life – about how one day he might get married and swear to love someone with all of his donor’s heart for as long as his body doesn’t reject it – or about how we’ll tell him to stop doing everything so “halfheartedly”.  Is it kinda inappropriate?  You bet!  Bet making jokes like that helps you really believe that you may get to a point in your life where those jokes are okay.

Plan for success – focus on what you need when everything goes right, and plan like it will.  Don’t play the “what if” game and let it keep you from doing what you would normally.  I will still have my shower at work that the dear ladies throw.  We will still do maternity pictures, and I will still light up and beam with joy when people ask me how far along I am or tell me how beautiful I look.  AND Doc will still roll his eyes when I get super excited at little boy clothes.  I’m so excited to meet my son.

Appreciate those around you who are amazing right now, forgive those who aren’t – not everyone knows what to do in these situations.  They don’t all understand that you don’t know what you need help with and they just need to take tasks from you and do them, or that they need to check up on you and let them know they care frequently because that support is invaluable.  Be blessed to have friends and family that do leap in and understand that just because some don’t, doesn’t mean they wouldn’t…it just means they don’t know what to do, and when you get better at asking for help, they will be there!

Forgive yourself – you aren’t at your best right now.  Don’t expect yourself to be.  Forgive the laundry you forgot about or the one time you yelled at your child because you were overwhelmed.  You are allowed to have moments of weakness.

We meet with the Pediatric Cardiologist Thursday – we will have a shopping list and game plan ready at the end of that meeting.  I’m excited to be meeting another part of the team and I’m going into this meeting with a peace about our situation and a readiness to prepare.

F M L

Original post date – August 3, 2011

Well, good news yesterday, bad news today.

My little man likely has Transposition of the Greater Vessels. This means that it looks like his Pulmonary Artery and Aorta might be hooked up to the wrong sides of the heart.

There are some problems that come along with this, but essentially what we understand this likely means is that his first surgery will be much more complicated, but that surgery will fix the arteries. This is still fixable, just a little more intense.

I'm clinging to the fixable. I can withstand all of this is I can still hold out hope that he will be okay in the end. The only problem is, every little obstacle that shows up makes me feel like that hope is slipping.
Once again, when we meet with the Pediatric Cardiologist on the 11th, we are hoping to have some more answers. I'm starting to wonder though, if this will require us to visit another city for our delivery and for Rowan's surgeries.

I had a bit of a breakdown today. Thank goodness my mother is here to help. She is taking care of Little Bird while I get my shit together. Doc told me today that I need to let the people in our lives take care of us for a little while so we can take care of Rowan. I'm trying to accept help and not let it make me feel like a failure.

Thank you to my wonderful coworker who decided to decorate my classroom for me and to the ladies who arranged all my furniture in my classroom.

Never Been So Happy To Have A Nurse Call!

Original post date – August 2nd, 2011

Because they call when tests are normal!

I think it was worth all of the horrible discomfort from the Amniocentesis to know that Rowan does NOT have Down Syndrome or any other DNA problems associated with heart deformities that they tested for.

He’s also 100% a boy, as if the giant thing between his legs didn’t make us feel confident enough at the ultrasound.

So, I have ever reason to believe that Hypoplastic Right Heart is what we are dealing with, and the only major obstacle we foresee.

So I’m off to create an Amazon Wish List!  He will only be able to use certain things in the NICU and with his scar/monitors, so we are holding off on buying much until we get a list of what he can use from the cardiologist/NICU staff.

I tell ya what, I have never been so damn excited to get a test result back.  First good news in a while and it feels great!

Fetal Echo and Amnio

Original post date – July 27, 2011

Today we returned to the Perinatal Specialist who preformed our ultrasound last week.  This week, they did a Fetal Echo of Rowan as well as doing an Amniocentesis on me.  The Fetal Echo mapped out Rowan’s developing heart and looked at the direction and strength of blood flow.  This will hopefully give the Pediatric Cardiologist a better understanding of Rowan’s specific case with Hypoplastic Right Heart.  The Amniocentesis was a bit of an ordeal.  Once the needle went in, I started having contractions, which is not horribly abnormal, but is horribly uncomfortable.  They had to dig around with the needle a fair amount to avoid problems and I am feeling incredibly sore now.  The purpose of the Amniocentesis is to look at Rowan’s DNA.  Some heart defects are a result of a chromosomal abnormality, and we want to make sure that is not the case with him.

We don’t know when we’ll get results back from these tests, but we signed  a medical release so the results could be faxed to us and we will have the reports to read over ourselves.  I also have an OB appointment next week, at which point I imagine we will discuss some of what we know.  I still think it won’t be until we meet with the Pediatric Cardiologist August 11th that we have real answers – and they will probably be vague.

Rowan looks like Little Bird, but slightly different.  I can see so much resemblance.

The more I have read about other families and their experience, the better I feel about our chances.  We have an amazing team working with us giving us ever chance of having the best possible outcome.  It’s just hard not knowing what exactly the best possible outcome is.

Coping with a Kid

Original Post Date – July 25, 2011

Children are highly intuitive.  This is one of the hardest things for me right now about being a mom.  I am feeling much more optimistic about Rowan’s future and the future of our family.  However, there are still times where I feel so overwhelmed I can hardly keep it together. 

Reading a book with Little Bird where she points at the baby on the page, and then points at my tummy and says “BABY!”

Seeing Rowan’s clothes in a box in our room.

I just get teary – and when I’m alone with Little Bird, me being upset translates to her being extremely unsure of her environment. She cries more, feels less comfortable being in a different room than me, wants me to hold her more often (which is not okay for me to do anymore).

I keep reminding myself that I have to stay calm for her.  I don’t ever want to make a child deal with adult problems.  This is something she will have to deal with when Rowan arrives and should not have to deal with it now.

So -

I’m cutting myself some slack.  We’ve been cuddling up watching movies together.  We take our time getting things done right now and try not to be in a rush so that I don’t get stressed.  If I do get upset, I tell her “Mommy is sad today, but it’s okay to be sad sometimes.  Let’s go get a drink/build some blocks/sing a song to help us not be sad.”  I’m putting less pressure on myself to be supermom in the next few days, and just letting myself be “mom”.

Humble

Original post date – July 23, 2011

The last few days have been emotionally very difficult. Many of you know that Doc and I experienced a miscarriage with our first pregnancy. At that time in our life, we did not have family nearby who could offer support. Our friends did not understand the weight losing a child could hold. When we first received news about our son, I never expected to have such a different experience.

We have been so grateful for the overwhelming promises of support and outpouring of encouragement and love from friends and family. All of your calls – flowers you sent – trips you are planning to be with us – scheduling to be here for us in December and March when we will need it – it has been the most heartwarming, comforting, and humbling thing I have ever experienced.

You are giving us the strength we need to get past the heartache and move into the place of preparing, finding peace, and believing that despite how hard the coming year will be, we will not be alone.

Thank you. You have no idea what this has meant.

For those of you who have been asking what you can do now – we need the encouragement you have given, and often – so please, keep it up. We need the reminders that you will be here and we will not be alone. We need the diversions of visits or invitations to remind ourselves that life can still be normal-ish. And if you know anyone who has had a child go through something similar, we’d like to hear their stories.