A Phone Call

I was very excited today to get a phone call from Susan of Mended Little Hearts, Tulsa Chapter. 

She called to talk with me and get to know me a bit as well as to invite me to one of the upcoming meetings.  I was so surprised how easy it was to talk to her.  Something about knowing that I am talking to someone who has already walked in my shoes and is several years further down the path than I am was incredible.  She assured me that if we wanted her there when he was born, or for his surgeries, or just a visit in the hospital while we were there – that I would never feel alone.  There would always be someone who completely understood right there for us. I’d been a bit skeptical about joining any sort of support group – but this group is more than just support.  They promote Congenital Heart Defect awareness and they educate each other.  There are also several dads and grandparents in the group.

My husband is on call for their upcoming September meeting, so I will be going it alone.  They have informational speakers at each meeting as well as some time to get to know other members.  A lot of people bring their children and there are a few women that play with and watch them during the sessions.  While I’m excited to meet the other parents and learn more ways to help my son, I am extremely excited to see little children with heart defects who have celebrated birthdays.

Every triumph story has made such a difference for me, but seeing triumphant stories running around – that could be incredible.

Officially in Tulsa for at least the next 5 months

Well, we reached viability.  This means that it is now possible for Rowan to survive if he is born.  This also means that I am not leaving Tulsa again for quite sometime.

If anything even minor happens (fender bender, for example) I am to go to St. Francis Hospital in Tulsa to get checked out – so I have to stay close to it.  Before it was just ill-advised to be far away, now it’s against the rules.

So no more trips to visit family.  Which sucks since I would love nothing more than to go meet my new niece or visit my brothers in Texas.  It was comforting to take those weekend trips when my husband worked all weekend.

I also have to carry around that lovely photo of Rowan’s hypothetical heart so that I can show any EMSA personnel that image and tell them that they HAVE to take me to St. Francis.

There are laws that require you to be taken to the nearest hospital.  My pediatric cardiologist said that I needed to carry that image to show them so they’d listen to me when I told them that that particular law does not apply to me because I need the level 3 NICU.

Kind of a hard for one who likes to travel around – hard to be restricted BUT

This means that we are only 16 weeks AT MOST from meeting our son.  And I know those weeks are going to fly.

Mended Little Hearts

Mended Little Hearts is an organization that focuses on providing information and support to families who have been touched by congenital heart defects.  A co-worker mentioned this organization to me and it turned out to be the one advertised in the Pediatric Cardiologists’ office as well.  So I looked into it.  Their website is now added to the resource links on the blog main page as well.

I was actually amazed at this organization.  They match families whose children have similar defects or will need certain surgeries so those of us who are trying to figure out what is going to happen to our child can talk to someone whose child has already gone through it.

So, I filled out a membership request form and a matching families form.  In a few short weeks we will receive information about group meetings, services such as phone calls and hospital visits by trained volunteers, and if we’re lucky, we may even hear from a family nearby who has a child who survived similar heart defects to Rowan’s.  Congenital heart defects vary so much that it would be incredible to find someone similar and hear their story!

What My Son Has Taught Me

Coping with a pregnancy for a child that has a known onslaught of congenital heart defects seems like a very grown up problem.  I don’t think we ever feel like we’ve “grown up”.  Inside of us is still a child.  Most days I can be a strong and confident mother who believes this will all be alright and my son will persevere.  But, the child in me can be very panicky some days. And every time I have reached a moment where I don’t have the strength to stay positive any longer and the complete fear of watching my son die hits me, something amazing has happened.

As soon as the tears come, Rowan fights.  He kicks and punches and rolls hard and deliberate.  It is as if he is trying to get my attention and remind me that he is in this fight too.  And he is strong.  One of the amazing things about being pregnant is that you are never alone.

23 weeks and his kicks are painful already.  Looks like we have a fighter.

Planning a Trip to the NICU

Today I started the ball rolling on trying to get an appointment with a Neonatologist (NICU doctor) and a tour of the NICU at St. Francis, where Rowan will be born.

I’m constantly amazed that you can be surrounded by wonderful doctors and highly confused office staff.  My doctor told me to call the NICU, they told me my doctor’s office should have faxed records and I shouldn’t have called.  The person I talked to was very good at repeating one phrase and not being very helpful about it, but then someone took the phone from her and was much more helpful.

So now, I am waiting for medical records to call me back so I can get my Pediatric Cardiologist records sent to the Neonatology Unit so they can call me back and schedule an appointment.

They only schedule 1 appointment a day. Monday through Friday.

I am crossing my fingers that the appointment they schedule for me will be one that my husband can go to…and will be before Rowan is born.

To the incredibly nice woman I talked to second on the phone in the NICU, thank you for being so calm and patient with me. 

After the Pediatric Cardiologist

Highlights from the Pediatric Cardiologist

First of all, our appointment was at 10:00, we arrived at 9:30 and left at about 1:00.  During our time in the waiting room there was another pregnant couple who was freaking out because their kid has a small hole between the ventricles.  That’s it.  I kind of wanted to punch them because I was sitting there trying to keep it together terrified they were going to tell me that my son had no hope today – and their kiddo is fine.  The doctor came out said “Your baby is going to be fine.  Don’t even worry about this, it’ll most likely fix itself and won’t require surgery – maybe medication”.  Have that talk in your office!  It pisses those of us with really freaking screwed up kids off….

That said-

This appointment was not what I had expected.  I thought we were just going to meet with the doctor and discuss all of the tests that had been done so far.

Instead, they did a study, which was an ultrasound/echo that took about an hour to map out Rowan’s heart.  The result is what they used to give us a picture of what Rowan’s heart looks like.  So here are the highlights.

• Hypoplastic Right Heart – the small ventricle is however connected to the left ventricle through a really big hole (called a VSD) that means it is receiving blood flow.
• Transposition of the Greater Vessels – the Aorta and Pulmonary Artery are switched at where they should plug in.  It also appears that the Aorta is slightly smaller than the pulmonary artery.
• A GIGANTIC connection of the Pulmonary Artery and Aorta.  The picture shows that it’s larger than normal…but the doctor said it’s actually bigger than the Pulmonary Artery.
• Undeterminable completion of the Aortic Arch – this was the scariest thing.  We cannot verify that he has a complete Aortic Arch, and without that, he would need a transplant to have any hope.  They do not really have a reason to believe that there is a problem, they just cannot prove that it is okay right now and will not be able to until he is born.

What all of this means:

• His defects actually create enough open blood flow that it is possible he could be balanced out enough to not need the NICU and come home after he is born to wait a while for surgeries.  His heart has compensated remarkably well for the HRHS, which most likely started this whole mess.
• He will need a ton of testing when he is born for us to determine the best surgical course for him.  He will still require surgery regardless of how stable he is when he is born.
• No C-Section or scheduled induction is necessary – the Docs will all be in town and they have no issue with a vaginal delivery!  This means I am much more likely to be able to visit the NICU and see Rowan if he needs to be there.
• Upcoming visit to the NICU – she suggested we tour the NICU, just so if we do need to be there, we are somewhat prepared for what we will see.
• The later he is born the better!  My due date is Dec. 16th and we want to be as close to that as possible.  “Full term” is often defined by OBGYN’s as 37-38 weeks.  Pediatric Cardiologist will always define it as 40.

All in all, I wasn’t expecting good news.  I had given up on the idea that I would even get to hold my son before surgeries and knew there was very little that I would be able to see him.  I had resigned myself to spending Christmas living at the hospital and several weeks away from my husband and daughter.  The fact that there is even a slight possibility that I could hold him and nurse him and take him home is overwhelming.  All I want for Christmas is a miracle.

A Normal Fetal Heart vs. Rowan’s Fetal Heart

Here are two pictures of fetal hearts.  The first is a normal fetal heart.  The second is a rough sketch of what Rowan’s looks like.

For those of you who understand much about anatomy, Rowan’s aorta is NOT as small as it looks in the picture.  It is smaller than the pulmonary artery, but not nearly that much.  It still serves as usable tissue to use in surgeries later.

What you see is 1.) The hypoplastic right ventricle; 2.) A VSD, or hole between the ventricles; 3.) Transposed Greater Vessels; and 4.) a question mark because we cannot see the entire Aortic Arch thanks to that little vessel by the 4 being gigantic.

Pediatric Cardiologist Tomorrow

My first attempt at a video blog on what I’m thinking about right now.

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.

The Diagnosis

original post date – July 22nd, 2011

Our son has what is known as hypoplastic right heart syndrome. We are looking at a lot of testing in the near future to figure out what our exact situation is.

Our current best case scenario is that when he is born, he will be taken into his first of 3 open heart surgeries. 1 at birth, 1 at 3 months, 1 at 4-5 years. If we are lucky, that will be it. Some of the children with this heart defect will require a heart transplant sometime between the ages of 15-30.

I’m terrified.

I can feel him stretch, and kick, and wiggle around just like a normal fetus. But he will not be able to survive after birth without serious interventions and a likely long stay in the NICU.

We are summoning our courage. We will learn all we can. We will prepare. The road will be rough ahead, but we have to find the strength to be guides to our daughter and to our son. We have to teach them strength and courage and love.

To my son -

We love you. We will be your strength and comfort. You will never be alone. We will have you and hold you. You may be in the hospital for a while, but you will come home. You will grow. You will crawl. You will walk. You will never play football, but let’s face it…we knew that already. You will live a normal life with a few extra doctor visits and a few surgeries. We will get through this.

Not So Normal News

About 15 weeks ago, I discovered I was pregnant with our second child.

We weren’t expecting it.

Having experienced a miscarriage in the past, we kept quiet until reaching our second trimester.

We watched our baby’s heartbeat, learned we were having a son, and chose the name Rowan.

Then we had our 20 week anatomy ultrasound and everything about this pregnancy changed.  I am starting this blog as a separate blog from my normal one to update those in our lives as well as provide a connection for other parents.  I will be reposting the journey so far and catalog our family’s journey for the remainder of this pregnancy.  I hope that this blog finds a parent out there who needs to know that they are not alone.