Medicine.  This is another area we have been very fortunate.  I always pause when I say that – when I put those words out there – how fortunate we have been on this heart journey.  We are.  It’s true.  But I always think about how fortunate we would have been, not having to be on it at all.

Kiran didn’t need heart medication until he was about five months old.  At that point, he was put on furosemide (commonly known as lasix) in order to pull excess fluid from his blood vessels and organs.  A lot of patients living with congestive heart failure (which, pre-surgery, Kiran was, essentially, living with heart failure) are put on this medication.  It may be one Kiran needs in the future as well.  However, from post-open heart surgery to the present time, Kiran has not needed this medicine.

Also heart-related, Kiran had to take half a baby aspirin for six months following his open heart surgery.  This is standard practice, to use a mild blood thinner for a period of time following heart surgery.  Like his furosemide, this had to be given through Kiran’s feeding tube.  We had to split the baby aspirin pills and dissolve half in water to be able to push through his tube.

We are currently still enjoying life in the medicine-free zone.  I like it here.  As with all things heart-related, I don’t know how long we get to be in this place.  But I am thankful we are here now.

If you have not experienced handing your child over to a surgical team, with all the hope and trust and faith you can muster, still unsure if you will ever see your child alive again…I can’t help you understand what it feels like.

I don’t like reliving surgery day, and ours was fairly routine.  Again, Kiran’s heart stuff, though critical and complex, has truly been the least of our worries.  The kid has been a good heart patient, textbook recovery, few hospitalizations…I count all these blessings often, as I watch so many other CHD kiddos travel more difficult roads with their heart journeys.

Surgery day, though, was one of the most difficult days of my life.  There is so much waiting.  When you are a person who struggles with anxiety anyway, surgery day brings about an anxiety rollercoaster.  You get an update and it calms you for a period of time, and then the anxiety slowly creeps up and up and up until you can hardly stand it, and then you get another update.  It was exhausting, and it was a day full of simply sitting and waiting.

I don’t remember what I did to even pass the time that day.  I honestly feel like I was just sitting and waiting for the next update.  I had people who love Kiran and love me around me for support, but we all just…sat.  It’s terrible.  It’s the worst wait I can fathom.

We traveled to California for Kiran’s open heart surgery.  Dr. Hanley, a surgeon at Lucile Packard Children’s Hospital, pioneered the unifocalization surgery Kiran needed.  Remember how I said we were thankful for his MAPCAs after birth?  Well, we were.  They were reliable enough that he was able to grow and get stronger, and he didn’t require surgery until he was ten and a half months old.  However, these tiny collateral arteries, helping blood get from the heart to the lungs to get oxygenated, were what made his surgery complicated.

Dr. Hanley essentially went in and spliced open these tiny arteries and patched them together to create pulmonary arteries.  He was also able to do Kiran’s full repair during the surgery.  Don’t be fooled: Full repair does NOT mean Kiran is now “cured” of CHD.  That’s not a thing.  It simply means he was able to address the TOF defects in the heart and repair them to make the heart work as closely as possible to a normal heart.  For now.

Kiran will face at least one more open heart surgery in his lifetime.  The pulmonary valve his body didn’t develop?  He now has a donor valve.  It will have to be replaced at some point, and it is small enough that it will need to be another open heart surgery.  The hope for the next valve replacement (there will be a minimum of two in his life) is that the valve will be big enough that it can be done in the cath lab.

One more planned surgery.  This isn’t to say there couldn’t be more.  We have no idea when his pressures might get too high or a valve get too leaky…It’s a journey; we haven’t arrived at any sort of destination.  We are simply stable.  For now.

I don’t like to write about the surgery, because I don’t like thinking that we aren’t done.  But that is the reality of congenital heart defects.  If you are born with a CHD, you will have a CHD for the rest of your life.  No cure has been found.  You will have to be more closely monitored, you will have more risk of hospitalization due to other illnesses, you may have physical restrictions placed on you….any number of paths can become reality.  But the reality is: It is lifelong.  There is no cure.  And Kiran’s reality is: This intense 14-hour surgery wasn’t the end of his surgical story.

And it gave him one helluva battle scar.

I really like not being noticed.  I’m an introvert.  A wallflower.  I like blending in, minding my own business, and retreating to my own space with the few people I am truly comfortable with.

This, among other reasons, is a big insecurity as it relates to being Kiran’s mom.  We are noticed everywhere we go.  Not only is he in a wheelchair, but we picked a bright orange and blue wheelchair (his dad’s favorite color and mine, not related to any sports team).  He is often excited when we are out in the world, and he, unlike me, LOVES engaging with people.  He’s a social butterfly.  Where I try desperately to avoid eye contact with people in public; he seeks them out by looking at them and increasing the volume of his voice until they make eye contact with him.

He stretches me.  There are growing pains in this area.

We are going to an event tonight I have been excited about since I first saw it as an option.  Kiran will be getting his first live theater experience at the Civic Center.  We don’t watch much TV, but this is one of three cartoons we do watch (and my favorite, I think, of the three, which includes Sesame Street).  We will be experiencing Daniel Tiger’s Neighborhood Live.

Events like this require planning.  I can’t just go online and buy tickets and move on with my day.  Kiran needs wheelchair accessible seating, and he needs it close enough to the stage that he is able to see what is going on.  Though we aren’t clear exactly how much his vision is impaired, I do know that if we were too far back, he wouldn’t even know what he was supposed to be watching.  Both people I spoke with at the box office were incredibly helpful, and we managed to get a wheelchair accessible seat with two seats beside it right up front.

Still, my anxiety is high.  I just don’t know how it will all … work.  I’m thinking about parking and getting there from where we park…I’m thinking about everyone watching us as we make our way, navigating this experience for the first time, to the front of the auditorium…I’m thinking about how loud he might be as he gets excited during the performance.  I’m thinking about how, as much as I might like to, there is no being invisible in the world.  Not that I think everyone is constantly watching us – but we are noticed.  Stared at.  Commented upon.

This isn’t anything foreign to me.  New experiences always cause a level of anxiety in me.  Even if I were just going to a show (which would not be for the first time, actually), I would have a certain level of anxiety about how the evening will go.  It’s par for the course.  But this feels…bigger, somehow, and far more important.  I so want this to be a positive introduction for Kiran – I want him to love live theater as much as I do.  And I really feel he will.  I really do.

All of this to say – I’m excited.  I’m nervous about the logistics.  I’m still learning how to navigate the world with Kiran and his chair.  This is new and feels scary to me.  But I know it will be worth it.

I can’t wait to watch his face throughout the show.

Hospitals, thankfully, have not been a large part of Kiran’s journey.  Unlike many children living with congenital heart defects, Kiran has actually only been hospitalized four times so far, only one of which was unplanned.  Most of you who have read our story will know the story behind those four hospitalizations: after birth, at two and a half months old with a cold, g-tube placement surgery, and open heart surgery.

Here’s what hospitals have taught me:

I have a voice.  I am the expert on Kiran, and I am his advocate.  I can and I will ask questions when medical professionals use language I don’t understand.  I will speak up about what Kiran needs to feel more comfortable.

I don’t have it in me to leave.  I am the mom who sits in that hospital room with him every minute, sleeps in that hospital room with him every night.  I recognize it isn’t necessarily healthy, but it’s what I have needed the times he has been hospitalized.

Going along with that, I have learned to accept help.  I have learned to say YES to any food or especially coffee … and especially if it is coming from somewhere outside the hospital walls.

My mom is, hands down, my best hospital companion.

The non-surprising?: Hospital life sucks.

The surprising? In my experience (and also due to our specific journey, with few hospital stays, and all of them occurring in his first year of life): Hospital life also allows a bit of reprieve.  Even though I have been the mom who never leaves, the hospital life I have experienced has given me a certain peace, knowing Kiran is safe and with the “experts”.  At this point in our journey, I would imagine that feeling may be very different.

I am thankful we don’t live the hospital life often.  It has been 2 1/3 years since Kiran has been hospitalized.  Yeah.  I have a feeling I will feel very differently the next time we end up there.

There will be a next time.

Twenty-two weeks into my pregnancy, Kiran received his first diagnosis: Tetralogy of Fallot (TOF).  It is a critical congenital heart defect made up of four defects inside the heart.  He has a Ventricular Septal Defect (VSD) which is a hole between the ventricles (the pumping chambers of the heart).  This hole causes oxygenated blood and unoxygenated blood to mix.  The aorta, which is usually above the left ventricle (which pumps oxygenated blood out to your body), is further right in Kiran’s heart, placing it directly above the VSD.  This means that mixture of oxygenated blood and unoxygenated blood is sent out to the body.  The third defect associated with TOF is a thickening of the right ventricle wall.  The right ventricle pumps blood out to the lungs, and in Kiran’s case, it is pumping blood through smaller arteries.  This means the muscle has to work harder, causing it to get bigger – much like muscles do when you lift weights at the gym.  TOF also comes with a pulmonary valve defect.  A post-birth diagnosis, pulmonary atresia, confirmed that Kiran’s specific defect is that his pulmonary valve simply didn’t form.  Thankfully (and also, what made him more of a surgical challenge), his third heart diagnosis, Major Aorto-Pulmonary Collateral Arteries (MAPCAs) provided another pathway from the heart to the lungs.

I have written more than once about Kiran’s first diagnosis.  Up until that time, everything had been going as expected with my pregnancy.  I was ill all the way through my first trimester, I was gaining good weight, everything was looking good.  We were making plans for a certain kind of life.  We were excited.

The biggest thing his first diagnosis changed?  Excitement, though still present, largely turned to fear.  There were so many unknowns, including whether or not he would even survive infancy.  The path we thought we were on changed drastically.  The Before became the After.

It’s what a diagnosis does, really.  Especially a big one like a heart defect.  It marks a place in your life when everything changes.  You are a certain person with a certain worldview, and it is all suddenly flipped on its head.

But what I’ve learned, as Kiran’s first diagnosis became a second and a third and now his medical chart is completely full of multiple diagnoses, is a diagnosis isn’t necessarily an ending.  It can be a beginning, too.  Each new diagnosis has helped us understand who Kiran is a little bit more.  Who he has always been.  They help us know the right paths to walk with him, the right therapies to try, or simply that we are already doing the right things for him.

The diagnoses.  All in all, they have become a bittersweet thing for me.  At times, when I am filling out paperwork and having to list them all, I both loathe them and am thankful for them.  It is hard to see them all together, attempting to explain Kiran medically.  A diagnosis can feel like a punch to the gut, like an ending, like a limitation.  But it can also feel like a key to a door we need to open, to get the services and equipment he needs to live his best life.

Tetralogy of Fallot with Pulmonary Atresia and Major Aorto-Pulmonary Collateral Arteries.  This may explain Kiran’s physical heart, but to know his metaphorical heart, all you have to do is spend one minute with him.

I cannot remember the last time I had a day, in the middle of the week, with no Kiran. This week is his dad’s week for overnights both Tuesday and Wednesday nights, and with the cold today, we decided it was best for Kiran to just stay put at his dad’s house during the day today (when he would normally be in my care from 8 am to 5 pm).

The timing is good, because I need to blend. So I have spent the last three hours – and will likely spend approximately another hour and a half this afternoon – blending real food for Kiran’s g-tube.

In recent history, until today, this has been feeling like a chore for me. It is hard to find the time and brain capacity to make these blends. I tend to blend for approximately one month at a time and store in the freezer. I keep track of calories, protein/fat/carb percentages, and I try to make sure he is getting a good variety of foods.

Today, I am having fun with it and feeling very good about the variety in the blends. I am making 3 each of the following blends: breakfast, lunch, snack, and dinner. Each big blend makes 8 meals, so I will have 24 days’ worth of food once I’m finished.

In these 24 days, Kiran will have these fruits: applesauce, strawberries, mangoes, kiwi, grapes and cantaloupe. He will also have prunes (daily, in every snack blend) and raisins. He will have these vegetables: spinach, cabbage, carrots, broccoli/cauliflower/carrots in cheese sauce, and corn/carrots/peas/green beans. He will also have red peppers and avocado (fruits, ok). Protein includes: turkey, pork loin, garbanzo beans, and black beans. Also, peanut butter, cheese, and Greek yogurt (every day, stirred into his breakfast blend). I blend cereal and breakfast fruit bars, crackers, whole wheat tortilla shells, whole grain bread, sweet potatoes, etc.

I put my focus back on the variety this month, and I think it’s pretty well-rounded. He is getting far more fresh fruits and veggies than most oral-eating three year olds. I get stressed about this task sometimes, but I’m enjoying it today.

Maybe because there is literally nothing else I need to accomplish today. I don’t have to be anywhere. I don’t have to take breaks to entertain or feed Kiran. I don’t have other meal prep to do (last month, I made the mistake of trying to blend on a Saturday while also meal-prepping for our catering company). It’s just me and Christina Perri and Kelly Clarkson, and a blender.

All for my boy.

Phone calls had piled up again, like they do when you’re a person who doesn’t like making them.  I got caught up, and in doing so, I realized my voicemails weren’t coming through on my phone.

Not a good thing when you have as much phone communication as I do regarding scheduling appointments and finding equipment and some of my own personal appointments and college things lately.

I did figure out how to go in and access the voicemails, but I still haven’t fixed the issue that notifications aren’t coming through when I receive them.  I’ll figure that out later today or tomorrow.

Anyway, that led me to a somewhat-related task of going through old voicemails and deleting them from my phone.  The oldest voicemails I had dated January 2015 – before I even knew I was pregnant with Kiran.  The two oldest ones were messages left to confirm reservations at one of our favorite restaurants in Seattle.  Bittersweet to remember that time in my life, the Before.

And then I started getting to the medical voicemails.  Confirming appointments with the midwife and then the ob/gyn (when insurance wouldn’t cover the midwife) and then ….

Then came the voicemails that marked the Transition from Before to After.  Phone calls regarding a follow-up ultrasound and recommendations.  And a very long message from a kind and excellent maternal fetal specialist (I had forgotten about) who went above and beyond to help us find care in Iowa, as our After with Kiran started just two weeks before a planned move halfway across the country.

Nothing in the messages, save the last one, was particularly heart-wrenching.  But it all took me back to that time, to those moments, to the place when I thought my entire world was crashing down all around me.

It wasn’t.  It hasn’t.  Though there have been many more such moments, with Kiran, with his dad, with my own internal struggle, when I have thought my entire world was crashing down all around me….it’s still intact.  It’s just different.  You crash and then you rebuild, you fall into the darkness and then climb back out into the light, you stumble and trip and then you keep putting one foot in front of the other.

We have come so far from that first moment.  The After isn’t all bad – it’s not even mostly bad – it’s just a life redefined.

It’s a long road ahead, but we journey together.

2018 was Kiran’s year to start school.  Looks like 2019 is my year to go back to school.  Although I have a bachelor’s degree in psychology, I have never really done anything with it, per se.  I would argue it helped me tremendously with my nannying career and currently helps my parenting skills (a little), but no clear-cut career path has ever presented itself.

For a long time now – at the very least, the past year, I have been thinking about what I want to be when I grow up.  The life I long-envisioned is not the life I live currently, so it is important for me to pursue a job I am passionate about, make decent money, have the opportunity for decent health insurance (for Kiran, mostly), and be flexible enough that I can be present as Kiran’s mother the way I want to be.

It’s funny.  As a professional nanny for nine years, I always shied away from working with any family with non-typical children.  And suddenly, it’s become my life’s passion to work with non-typical children.  After much hemming and hawing over which type of therapy professional I wanted to become (Occupational Therapist, Special Education Consultant, and Speech-Language Pathologist were at the top of my list of considerations), I decided to apply to college.  For the second time in my life.  The last time I was in college?  THIRTEEN YEARS AGO.  (I am old.)

Late last night, I decided to check the mail.  I’m not sure why, because I wasn’t actually expecting a response from the admissions office just yet.  They only received my transcript, completing my application, last Thursday.  But lo and behold, an envelope arrived from University of Wisconsin Eau Claire.

I’m in.  I will start taking classes, studying Communication Sciences and Disorders, this summer!  Honestly, I think speech therapy “won” because I want to be able to communicate with my son.  I want to be able to give him – and other children like him – a “voice”, however that looks.  And I want to be as educated and prepared as I can be, to help him succeed, to help our relationship, to help other families enmeshed in the heartache I am currently experiencing.

It’s going to be a long road.  It always is.  But I have taken the first step.  College bound!  (Well, not really, the classes are all online.)

 

Grief hides behind my smile
Filling each crease and corner
No gaps between my teeth
Each colored in with pain

How to explain
The smile is real – no fake joy
But it comes at a cost
I get tired of paying

While we are slaying
The dragons of disease
Diagnoses
Limitations looming

Yet you are blooming
I won’t forget
To celebrate each moment
But grief joins me