Tag Archives: CHD

From the Archives

The following is a post I originally wrote on 11/11/2009. It’s one of my favorite things I’ve ever written. I’m re-posting it for a couple of reasons.

1. If you are new to my blog, you may not know it’s title “Life and Love and Why” is a Switchfoot song.

2. While the following post was written 6 years ago and (due to busyness of life, two little boys, and not listening to music much) I haven’t listed much to their newer albums (“Vice Verses” or “Fading West”), I’m super excited that their 10th album titled “Where The Light Shines Through” will drop in July. With a theme of Hope, I’m hopeful it will be a well timed musical ‘pick me up’ during recovery.

3. If you are bored, all of my posts that mention Switchfoot can be found here.

When Parallel Lines Collide…

…with a hurricane, there must be some kind of resolve.

What do I mean? I think that I mean I see the world in lines. Intersecting lines of intellectual thought, theology, emotion, creativity, spirituality, philosophy, scientific calculation, and mathematical exactness to name just a few.  These lines run in many directions, until they swirl around in a seemly abstract jumble – giving the appearance of both mysterious chaos and understandable structure at the same time.

From this – I like to see the connections and draw more lines between the lines that already exist. Integration. That’s how it is for me with the music of Switchfoot. The lines that I draw between, through and around the songs, the parallel (and sometimes perpendicular) lines of my life, the planet I tread on, and that which I cannot see – though hope for.

Let me go back about 9 years:

I first heard “Dare You to Move” in college – off of a friend’s mixed cd, playing in his truck. Nice. I liked it. I thought they were from Canada, because up until this time, none of my US friends had told me about this band full of surfers. Through the school year, the song played, and the debate raged, which is better, the chorus or the bridge (everyone knows it’s the chorus after the bridge).

And so my introduction to Switchfoot was complete.  I picked up “Learning to Breath” and I was on my way.  Many an evening was spent studying to the cd, or taking a study break to practice my simple beginner’s beat – drumming to the title track.

And so I went on with life, time went by, and I spent my hours studying and jamming to Switchfoot. Through the course of the year (after I was thoroughly hooked) the rest of the world started hearing about them because of the soundtrack of a little movie called “A Walk to Remember”.  I also went to the Edmonton Switchfoot concert for about 2 bucks, the definition of College: good music on a budget.

At the end of my college career, I participated in a trip (long story – supposed to be teaching English in China – ended up painting in Philadelphia).  While I was slapping blue paint on Nursery walls, singing my heart out to “Playing for Keeps,” thinking about how This is for real. Life is all in.

We went on a field trip day to NY City.  6 hours. One huge place. My main memory, Virgin Records store, Second floor of 4. The brand new Switchfoot Album “The Beautiful Letdown” which I purchased and then convinced 4 of my other 5 team mates to also buy.

As the trip ended, I head back to E-town for two final weeks with friends before I ripped my heart out, returned home from the frozen tundra and grieved the end of my childhood, and the death of college friendships that can not be kept up from afar.

You may recall the song “Meant to Live” the break out single. I remember track 2 “This is your Life” – from the opening sounds. Hearing, and  closing my eyes take me back 6 years to sitting in front of a computer, playing Roller Coster tycoon, waiting for my friends to come home from work.

This is your Life, Are you who you want to be?

This is your life, is it everything you dreamed that it would be

when the world was younger, and you had everything to loose.

That’s it. The question. The abyss of future starkly in front of me. This song, and this cd became the definition of the notes I was living. It paralleled the world I was walking in.

Over the years, I’ve caulked it up to the fact that Jon Foreman (lead singer, frontman and song writer of Switchfoot) is a couple of years older than me. So naturally, he writes a song, it gets on an album, and by the time the album comes out, it’s a couple of years later. The song breaks into my world at approximately the same age and life stage that Jon was living when he probably wrote it.

On that note, I went home.

I spent three years working for a construction company. Digging back in time, listening to old school Switchfoot.

Albums like “the Legend of Chin” and “New Way to be Human” got me by with their punk rock youthful spirit, a good dosing of fun and an occasional song with more sobering questions and pleads.  Particularly off of New Way to be Human — Let that Be Enough.  When I was feeling like life was NOT what I thought it would be – I would drive, run errands for work, listen and cry along to this song.  At the age of 22, a college grad, slightly having lost my way in regards to career, missing my friends, and wondering “is this it,” I was signing

I wish I had what I need
To be on my own
‘Cause I feel so defeated
And I’m feeling alone

And it all seems so helpless
And I have no plans
I’m a plane in the sunset
With nowhere to land

And all I see
It could never make me happy And all my sand castles
Spend their time collapsing …

…It’s my birthday tomorrow
No one here could now
I was born this Thursday
22 years ago

And I feel stuck
Watching history repeating
Yeah, who am I?
Just a kid who knows he’s needy

Let me know that You hear me
Let me know Your touch
Let me know that You love me
Let that be enough

Beyond those sad and sometimes, simply dark, times – Switchfoot followed up with “Nothing is Sound” – in my discouraged world, occasionally sick and worn out — The rocking album, though not one of their best, was dark and with a touch of anger.  Yes there was a little hope – but in my world, most of the “Sunshine” emphasized the “Shadow” Not the other way around.  All I saw was shadow. And in my world “Happy” was most definitely a “Yuppy World.” Happiness seemed shallow, empty, and unattainable.

I didn’t stay completely stuck in the mud. I went back to school. Grad school at that. Though in many respects, my attitude and outlook was equally as torn down. My “Lonely Nation” of just me – was going to classes, starting to soak up some life, but it wasn’t how I wanted it to be.

With a new degree in hand, but no job, and a harsh break up of sorts freshly added to my resume, the end of Grad school looked to be similar to undergrad. Not what I wanted – because I wasn’t what I wanted. How had I bought the lies?  After all this time – I had the truth for so long… Again, not the highlight of the Switchfoot repertoire, Oh Gravity! but it brought some new tunes, and new ways for me to scream my lungs out to something I knew I believed in.

When success is equated with excess
The ambition for excess wrecks us…

…I want out of this machine
It doesn’t feel like freedom

This ain’t my American dream
I want to live and die for bigger things
I’m tired of fighting for just me
This ain’t my American dream

Here I am – about 9 years since the words and melodies, the disonent, minor chordes of grity guitar started weaving its lullubies in and out of the themes of my life.

Today is my 29th Birthday.

Am I out of the dark forest completely – no probably not. I still struggle with things like “being tired of fighting for just me” – I see a bigger world, bigger things, I want to be a part, I want to jump in head first. But the song I’m singing has changed for brighter tones. Not without discord – not entirely. But with a bit more hope. With that I leave you my current Switchfoot anthem

Hello Hurricane – Your love is a song:

I hear you breathing in
another day begins

the stars are falling out
my dreams are fading now, fading out

I’ve been keeping my eyes wide open
I’ve been keeping my eyes wide open

your love is a symphony
all around me
running through me

your love is a melody
underneath me
running to me

your love is a song

the dawn is fire bright
against the city lights

the clouds are glowing now
the moon is blacking out

I’ve been keeping my mind wide open
I’ve been keeping my mind wide open

your love is a song

with my eyes wide open
I’ve got my eyes wide open
I’ve been keeping my hopes unbroken

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Filed under cardiology, music, switchfoot

Yuck!

We’ve been on the down low lately because on March 21st, I got hit with the stomach bug. Not only did I lose 4-5 pounds(!), but it triggered a migraine.

JJ had to leave his work early (it was only his 2nd week there!) because I just couldn’t take care of the kids. And of course, 48 hours after I got it, little E got it and JJ 48 hours after that. It’s a miracle Z escaped it all together!

Sweet baby boy had it linger around for almost 2 weeks. After a few days, we would think he was ok and then he would throw up again, 3 days fine, then not, 2 days fine, and then not, etc.  And even at the very end, apparently his little tummy shrunk while he was sick so he was back to his cheerful self – and we accidentally overfilled him. Add to all of that, he was temporally lactose intolerant so we had to switch his formula. YUCK!

It was just a two-week period that I’m so thankful we are through. Everyone is finally back to normal.

Speaking of little E, it brings me to both my current praise and prayer request.

Praise!

When E was about 1 month old, we, along with his pediatrician, determined that he was cow protein intolerant. After a lot of thought and prayer, we decided to stop nursing him and switch over to a specialized formula. Within 48 hours he was practically a different baby! While we were really thankful, any momma out there that goes from nursing to full stop knows how difficult that can be. It’s both emotionally hard (momma guilt!) and physically painful. However – after a couple of weeks of a much happier, healthier home, we were so glad with our decision.

Here’s where the praise comes in. Little did we know at the time (October) that we were headed toward heart surgery. Can I just say I am so thankful for discernment and wisdom back then?! I cannot even imagine trying to stop nursing because I have heart surgery coming up.  WOW. I’m so thankful I don’t have to deal with the emotional (and painful) choice right now. It is so wonderful to be able to look backwards just to October and see how even then, God was directing us, helping us make difficult decisions that would ultimately help ease our way to heart surgery.

Prayer

Related to all of the above – we are really hoping and praying E will be sleeping through the night by the end of May. Both for the ease of those taking care of the boys while I’m in the hospital and for us when we get back home and are in the middle of a long recovery road. Honestly, with Z, he was a big baby and I’m pretty sure he was sleeping through the night when he was 3 months old. E is a different story. A month ago, we assumed he would be there by 9 months old, but the stomach bug set us back.

During the stomach bug we took him to the doctor and he weighed in at the 15 percentile range. Basically, right now at 7 months, E weights 16.5 lbs. Z weighed this somewhere around 3 months old. They could not be more different in body type. Between trying to get on track post-stomach bug, restarting solids, and thinking E’s in the middle of a growth spurt, he wakes up at least 2 times a night right now.  (He was down to 1 most nights, and sometimes none.)

Like most things, it’s small by itself, but it’s big to us right now. No matter the case, we trust God will provide. Either though E sleeping through the night, or endurance for those looking after him.

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My heart valve

As I hinted in my last post, my valve will be tissue, from a cow (bovine).

Unlike what I imagined, I won’t be receiving an actual bovine valve. I think with pig (porcine) valves, they use the actual structure of the valve. If you didn’t know, pig hearts are very similar to human hearts in structure, size. and function.

Anyway, for a bovine valve, they will take the pericardial sack (the tissue that surrounds the heart), rather than the valve itself.

They will make a circle using a material called Dacron (the brand name for specific material that is part of the polyester family) and have 3 leaflets in the middle. The leaflets will be made from the cow tissue. The best visual example I’ve been told is it’s similar to the Mercedes Benz logo.

I mentioned last post one of the pros is that there are no life long meds. My surgeon did recommend that I take one baby aspirin everyday, but it’s so minimal, it basically falls in line with what cardiologists recommend anyway for an aspirin regiment. If I ever needed to pause for some other medical reason, it wouldn’t be a big deal.

Other than that, I don’t care if these means I’ll be a cannibal, I’m not giving up steak or beef jerky!

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Heart Valves

Before we met with the surgeon last week, we were praying and trying to weigh the pros and cons of all the heart valve options available.

Here are the different types of valves we were aware of with their pros and cons.

  • Mechanical
    • Pro.
      • Infinite life span
    • Cons.
      • Audible (clicking sounds)
      • Blood thinners for the rest of one’s life
  • Tissue (human, cow, or pig)
    • Pros
      • Silent
      • Probably no lifelong medicines (including both blood thinners and anti-rejection meds)
    • Con
      • 10-15 year lifespan

We really didn’t want for me to take meds for the rest of my life… but the idea of another heart surgery in 10-15 years, that didn’t sit well either.

Much to our surprise and relief, it turns out we didn’t even get to choose. (Thank you Lord! Once again preparing the way when we didn’t even realize it.) The pulmonary valve is too low pressure for a mechanical valve to even be an option. Lower pressure means slower flow, which means higher chance of blood “sticking” to the valve. Plus, with my age, blood thinners means no future chance at having kids (birth defects) and at an early age – I’d have to be on guard against falls. A small fall hitting my head means nothing now. With blood thinners, a small fall could be life threatening.

“So Debra…” (you might be thinking) “…that one Con with tissue valves, that seems pretty major!”

Yes, and No. Yes – I would need a new valve assuming I live to a ripe old age and something else doesn’t kill me. Doing the math – maybe two additional valves in my life time.  So… heart surgery again?!?

Probably not. At least not Open Heart.

Once this valve is put in place, my heart will have a “landing pad” of sorts for a future replacement valve.  In all likelihood – that valve (a melody valve) would be put in through my leg! (Crazy right!?!) It would be a much less extreme surgery. And besides that – 10-15 years from now, medicine and technology will change a lot. I know that from experience. Ten to fifteen years ago, they weren’t sure if it would be a good idea for me to have kids. Well – clearly that changed. 🙂

In my next blog post, I’ll give you a little more detail on what valve I’m getting. Here’s a hint “Moooooo.”

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Because things change

We planned too far in advance 🙂

Apparently we picked the week the surgeon will be out of town for a conference. It wasn’t even on her official schedule yet. haha!

New surgery date will be May 25.

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“Someday” is Now

I’ve been blogging about my heart history for the last few posts. You can read about when I was born, my open heart surgery at age 2, and how having a Congenital Heart Defect (CHD) has affected my growing up years.

I’ve posted in the past about how pregnancy could effect my heart. It turns out, after I was able to carry two wonderful precious babies, my heart has in fact has some negative change.

First – because I can – here are some of my favorite pictures of my boys. I love them to bits!

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The day my youngest (E) was born.

 

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Are they not precious?! Both of these photos of the boys are from when we were still in the hospital. (Z on the left, E on the right)

 

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Twins, two years apart. Z on the left – 5 days old. E on the right – 9 days old.

 

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Love, love, love this!

 

Cankle to Ankle

These two pictures show just how dramatic the swelling in my leg was after my second child. Later, I was told that this is considered “symptomatic heart failure.” Which makes sense I guess, when you only lose .8 pounds after having a 7+ lb baby … something must be amiss.

image

image

From September 9th – it took this long for my leg to go back to normal.

All of this to say – yes – pregnancy had an impact on my heart. HOWEVER — and this is important — This is NOT the reason for what I’m about to say. It had an impact of timing, but it’s not the reason.

So on to the news:

“Someday” is Now.

Meaning: I’m getting a heart valve!

We met with the surgeon this week and I am currently scheduled for a Valve Implantation on May 17th. May 25th  (updated to reflect new surgery date)

[It’s not a valve replacement or repair, because I don’t have anything to replace or repair. 🙂 ]

We were able to ask a ton of questions and are feeling confident that this is a good decision and the timing is right. It is considered “non-emergency”.  That’s the entire reason my doctors have kept such a close eye on me all of my life – to figure out exactly when “now” should be. While not an emergency, it is necessary because at this stage, they expect my heart to return to “normal” size since the pumping function has not been compromised (yet).

Mostly, we are wanting everyone to know so that you can be praying.

Prayer requests:

*Peace of mind for both JJ and I (I’m feeling ok about actual surgery – being put out will be better than the c-sections. Recovery – not so much. I’m dreading that and looking forward to late summer when, hopefully, I will begin discover energy I didn’t even know was possible.)

*Clarity and discernment on when and how we explain to Z what’s going on. Thankfully, due to E arriving via c-section, he already knows that Hospitals & Doctors “Help people”

*Work for JJ now, so he will be able to take some time once it’s surgery and recovery time

*A good plane ticket price for my mom as she flying here for the surgery and some of my immediate recovery time

*That Insurance will cover everything. We expect it to – but – you never know.

Praises

*Great doctors that are experts in their field

*We finished our emergency fund – a few weeks before we learned this was what our spring contained

 

I’ll be continuing to do some blog posts regarding my heart and up coming surgery. I’ll answer some frequently asked questions and such. Also, when May 25th arrives – this blog (not facebook or twitter) will be the best place for updates.

Thanks for stopping by. I know I have friends and family all over the US and Canada, the world really. Since I already had an established blog – we thought this would be the best way to let every one know what’s going on.

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Growing up

A few years after my open heart surgery, my family moved from Chicagoland to the Pacific Northwest. I was 6 and a half when we moved.

sidewalk

Around 5 or 6 years old in Chicago. I think this is a sweet, rare photo of me in a dress.

 

scissor

(L) My second year of 1st grade. (Yes, I took it twice. That’s what happen when you move and are really shy.) and (R) kindergarten. Please notice the amazing cutting work on these pictures. Done by yours truly, ages 5 & 7. I’m better at this now.

As I mentioned in my last post, there is no cure for CHD. I spent many days going to cardiology appointments. For a while, it was once a year, then twice a year. There was a period of time I got to go only once every two years, which was short lived as I hit puberty and my cardiologist knew I needed to be monitored more often.

fourkids

On a family vacation. This is a picture of my brothers and me. Unlike the photo above of me in a dress, this is much closer to my “normal” as a kid. And check out that mullet!

My “normal” has always been a little off from actual “normal.” For instance, I’ve always had restrictions on what sports I may participate in. When I was in 5th grade, I participated in track, only to be chastised by my cardiologist. “Don’t you know you aren’t supposed to run track?!? Don’t you hear the new stories of kids dropping dead on the running track!?!” Oops! (If you are wondering, I got the green light to play soft ball, and be in a bowling league.)

Because of these physical limitations, I was not allowed to participate in P.E.. That awkward, learn to shower at school with classmates situation – I never lived it. It also meant I got to take a ton of extra electives in High School. (Lots of Art!)

piano

Piano recital. I took around 5 years of lessons. I played ok, but I was terrible at actually putting in time to practice. That dress! :-/

 

dog

I have always loved reading. This was probably from my Jr. High years. Hanging out with our golden retriever.

Medically speaking, everything is always more complicated for me. In high school, when I needed to have my wisdom teeth removed, no one would touch me because I was such a risk. I had to have them out up at Seattle Children’s Hospital.

When I had a very unusual case of gall stones the summer before my senior year of college, I had to have extra tests just to make sure it was not being caused by my heart. Apparently my blood was breaking down faster than it was supposed to. This resulted in hard conversations about “What happens if they say I’m dying?” Thankfully, that was not the case and I was able to return to college and complete my degree.

As most of you likely know, more recently, my heart health made for some high risk pregnancies. (You can read more about that here.)

I’ve been blessed and am very fortunate to live what I call “bonus time.”  If you think about it, we are all in bonus time – I just happen to have tangible proof.

Thank you for reading my story. Come back soon to find out “What’s Next.”

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Filed under cardiology, chicago, moving, seattle, sports

Open Heart

I went home and everything went ok. I healed and I grew.

A few months after I turned two, my doctors decided it was time for my next surgery. The two surgeries I had when I was an infant were obviously helpful and prolonged my life, but I needed a solution that would grow with me and take me into adulthood.

In addition, there was a small hole that needed to be addressed. In February of 1983, the hole was pin-size and I was showing no symptoms. By the time I had surgery in April, it had grown to be the size of the doctor’s finger nail. WOW! Even though I had not shown symptoms, I would have soon, had they not addressed it.

And so, on April 11, 1983, I had my first and only open heart surgery.[*] The two main objectives were to close up the hole that shouldn’t be there, and to add structure to the valve space that was still just a “hole” they made in my second surgery. I don’t know the technical name of what they did or what material they used to shore-up the valve space – but it worked!

The following are some pictures from that surgery.

1983_ekg

Pre-operation, old school EKG.

1983_flooranimals

Hanging out at the children’s hospital. I remember those animals! Or… at least I think I do. It’s possible I’ve just seen this photo enough times that I think I remember them.

1983_presugery

My dad and I before surgery. I DO claim this as one of my first memories. I have a clear picture in my mind of that dresser with gifts people gave me. I know it’s a real memory because in my mind’s eye, I’m looking at it from a different angle.

1983_postsugery

Clearly, post-op. This one makes me want to cry. I have always been so thankful I remember none of the physical pain.

1983_home

This is one of my favorite photos of all time. It’s from the day I got home.

1983_loot

Another photo of me after I went home. I’m surrounded by all of the gifts I received. And clearly, MOM, that big bird puzzle you have for the grand children to play with is mine. I have photo evidence. 😉

I’m so thankful I don’t remember much from this and it’s really nice when talking to people about my heart that I can say “my most recent heart surgery was 1983.” A lot of babies born with Congenital Heart Defects (CHD) have many more surgery thank I have.

This surgery is also where I get the date for “Happy to Be Alive Day” – which is basically my own made up holiday.

Something that is very important in all of this is that even though it’s been decades since I had heart surgery, this was not a “cure.” There is no cure for CHD. This is a life long health condition that affects everyday life.

Stop by again soon. My next post will be some heart related stories from my childhood years and maybe even Jr. High. I’m still deciding on what pictures to post. You know that “awkward phase” we all go through – I’ll probably put up one or two. 🙂

 

[*] Open heart surgery is any surgery in which the chest is opened and surgery is done on the heart muscle, valves, arteries, or other parts of the heart (such as the aorta). The term “open” means that the chest is “cut” open. This definition along with additional information can be found at the US National Library of Medicine website.

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It all started at the beginning

I was born in the suburbs of Chicago. My parents moved from Bismark North Dakota to the Chicago area when my mom was seven months pregnant with me. This part of my story always seems miraculous to me. Who does that? Who moves when they are 2 months out from having a baby? Apparently, my parents and it’s fantastic they did as you will soon read.

When I was born, I seemed fine.

1980_woodstock

Me – new. See that hair? The nurses nicked named me “Woodstock” like the yellow bird from snoopy because my hair stood straight up. I was 8 lbs 14 oz when I was born. Another blessing as my ill health caused me to lose a lot of weight. I’m still “pink” in this photo because I haven’t crashed yet. Everyone is unaware of what is about to happen.

And then something went terribly wrong. Had I been born in North Dakota – this is the end of the story. I die. You never read this. But it isn’t the end because my parent’s trusted God’s best for them and now being near a major US city, I had a chance.

1980_blue

This is a picture of my dad holding me (with my maternal grandparents). If you look close, you can see I don’t quite look the normal “pink”. I’m a little blueish – gray. It’s called being cyanotic. It has to do with having low oxygen saturation.

While my mom was still recovering from my birth, I was put in an ambulance and rushed 40 minutes to downtown Chicago. Within the first 24 hours of life, the doctors discovered I had Pulmonary Atreisa (complete blockage of the pulmonary valve – blood could not get to the lungs to pick up oxygen), so they performed a Waterston Shunt to help reroute blood so that I could pick up oxygen from my lungs.

While this did improve my condition and bought me time, I recently learned that I was only at about 75% oxygen level. Not good enough. At around 30 days, the doctors went back in and basically “poked a hole” where my valve should have been. My mom says I “pinked right up.”

1980_first_surgery

This is a picture of me after my first surgery. I still have some pretty sweet scars from this one, including the “dent” in my leg. (I forget what normal legs look like, from day one I had a dent from the cut down IV.)

1980_nurse_babyD

I’m looking a lot better in this photo. It’s likely right before I went home or at a later check up.

Both of these surgeries were what’s called “open chest” meaning they did not stop my heart (at least, I think… I’m a little foggy on the details and my old medical records don’t provide much help). I went home at around 40 days old and that was it for a few years. I’m sure there were many doctors appointments and check ups, making sure everything was going ok.

I’ve heard stories about how I was a terrible baby (I cried a lot – screaming really). I’ve been told that my mom got approval, even encouragement, from the doctor to let me cry. It was “good for my heart.” I’m pretty sure I don’t have any screaming baby Debra pictures to share. 😉

Life moved on into toddlerhood.

Come back to read what happened when I was around 2 and a half years old.

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My CHD – Pregnancy Edition

So last post, I ran through what I mean by “my heart condition.”

I thought this post, I might write about what it meant for being pregnant.

To lay some groundwork, when I was a teenager and young adult cardiologists said that I might not be able to have kids. Not that I couldn’t, but that it’s very highly likely that I shouldn’t.

Before you start thinking “Way to go and ignore your doctors, Debra. You just had a baby!” In the last maybe 8 years or so, my doctors changed that. My current cardiologist told me a handful of years ago that it shouldn’t be a problem. I would be high risk, and have to be watched closer than a ‘normal’ woman, but I should be able – and could if I wanted – to have kids.

Biggest Risk

Now, as I mentioned last post in “Long Term Outlook,” the long term risk to me with my CHD and resulting enlarged heart is Congestive Heart Failure.

The four main symptoms of Congestive Heart Failure are:

1. Irregular heart beats

2. Swelling due to the heart not being able to keep up, extra fluid in the lungs and around the heart, but also showing up in ones legs, hands, etc.

3. Trouble breathing, particularly while lying down and resting (due to fluid around the lungs)

4. Dizziness

These are the things I keep an eye out for. However, symptom 1 is VERY common for me. My heart skips beats or races on a fairly often basis. So it’s hard to take any special note of that symptom, unless I seem to notice it happening more frequently then what would be ‘normal’ for me.

Increased Risk While Pregnant

With the increased blood flow and fluid retention that pregnancy brings, Congestive Heart Failure is a bigger risk.

The second symptom was extremely frustrating during pregnancy. I had some major swelling issues at about 3 months. It was a little early for pregnancy swelling, yet, it was difficult to determine if it was pregnancy or heart related.

My cardiologist suggested to cut down on sodium and see if that helped. Thankfully, it did! I was pretty bummed to have to be super cautious about how much sodium I was eating for 6 months – and it did affect our food budget as my normal way of cooking (with canned goods) had to be altered, but it made a huge difference. I only had a little swelling for the remainder of the pregnancy. And when I did, it could usually be traced to a higher sodium meal recently eaten, or having just spent a lot of time on my feet (which is normal for pregnancy).

The other main risk is once the baby is born. When the body is eliminating all the extra fluids. I was told to expect to stay in the hospital for observation for 4-5 days after our baby was born.

Z was born. And things looked to be going well. However, about 4 days later, one of my feet blimped up really bad, and really quickly. I was told it probably was NOT heart related as the typical MO for that would be that both feet would be equally swollen, not just one foot becoming very swollen. It was a little scary and they had me go in for an ultrasound to make sure I didn’t have a blood clot. Thankfully, I did not.

It was not a big enough concern for me to stay much longer in the hospital as I was discharged the next day. It did take my foot a week or so to finally get back down to size, which was such a relief when it did.

I did experience symptom 3 (trouble breathing while lying down) when I got home. It was concerning enough to call the cardiologist. They suggested that (since my heart was looking so good when I left the hospital) it might just be something that anemia (from loss of blood during the c-section) was causing. Funny enough, the second night I experienced this, I discovered that in actuality, I was having issues with Snoring! (Which is not normal for me.) As annoying as it was, it was such a relief.

The same night I had trouble breathing, I was also dizzy (symptom 4) at one point around 12:30 am. This only happened once and was also chalked up to being anemic.

So there you go. I was able to be pregnant, and have a child, while not having Congestive Heart Failure. But it was not without a few scares and I was so thankful for the great care from my cardiologist, my OB, as well as the nursing staff and of course my loving family.

What All This Means For My Child

To quick rehash from my previous post, heart defects are the most common birth defect – just about 1% of babies are born with one. Major ones can be very obvious from day one, and minor ones might not be caught until adulthood. Even though my heart defect is not due to genetics – it still increases the risk that my children will have a CHD.  Statistics say bout 4-6%.

Jackpot! Little Z has a minor CHD. Because of the slightly higher statistical chance, at 20 weeks, and then again at 24 weeks because they thought they saw something – we had fetal echos done. Basically, a super long sonogram – focusing in on the little guy’s heart.

Based on those two tests, they recommended we have an echo done on Z once he was born, before he was discharged from the hospital. We did – and it confirmed the diagnosis: Pulmonary Stenosis. Same valve that I have an issue with, but different issue. He’s valve is slightly narrowed.

Thankfully, tests confirm it’s very mild and the long term outlook is quite good, probably not ever involving any type of surgery or procedure.

So there you go – more than you ever wanted to know about CHD and pregnancy.

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