Heart Month – Day 7 – Heart Warrior

You have fought to be here from day one.  From that first mighty newborn cry that put this mama’s heart at ease – and made it swell with a pride I had never felt before – to the exaggerated, intentional steps you now take in your gait trainer, life hasn’t come easy for you.

I think we think of warriors as actively fighting – a constant motion – a sword drawn, worn and bloody from battle.  But that’s not the type of warrior you are.  Your body has fought some significant battles, but you do so quietly.  You are a warrior of resilience and determination.  It’s a quiet strength, of a kind far stronger than one of significant volume.

You have been through far more in your life than I have.  I experience only a taste, as I walk alongside you with every step.  But your strength astounds me every single day.  Your willingness to keep putting one foot in front of the other, even when (we are told) every bit of progress comes much harder for you.

You show up.  You do the work, every single day.  And you do it with so much enthusiasm and joy.  So many smiles and giggle-fests.  You are the reason I am able to keep showing up, too, even on my darkest days.

If you can fight, every step, every day, so can I.  So will I.

For you, my heart warrior.

 

Heart Month – Day 6 – Date of Birth

“10-21-2015”

I say it often, just like that “Ten – Twenty-One – Twenty Fifteen”

Every doctor’s appointment, every test, every ER visit, every hospitalization with every prick and poke, “Could you confirm Kiran’s date of birth?”

“10-21-2015”

I have to stop and think, now, when I am at an appointment for me.  My OWN birthday doesn’t roll off the tongue like it once did.  I am so used to his.  His numbers come more easily to the front of my mind, to the tip of my tongue.

“10-21-2015”

The day my entire world changed.  He didn’t come until 11:06 pm.  It was a long day, waiting for him.  It was a long day, waiting to see what would happen to him once he was no longer safe in my womb.

“10-21-2015”

The day we met.  The day our journey truly began.  The day I got to see him, but just for a second, and steal a quick kiss on his soft cheek, before they had to wheel him to the NICU, flanked by several doctors.

“10-21-2015”

Other than that brief moment, I didn’t actually get to spend time with my son until 10-22-2015; it was well after midnight by the time they allowed me to get out of bed and be wheeled up to the NICU to see my darling boy.  I never wanted to leave his side, but of course, I was still a patient.

“10-21-2015”

The day my biggest dream was realized: Kiran made me a mom.

 

Heart Month – Day 5 – Echo/EKG/X-Ray

I just realized – since the heart month challenge is actually a photo challenge on social media – I don’t think I have a single picture of Kiran getting any of this testing done.  I also have no idea how many Echos and EKGs and X-rays he has had in his life – I just know he surpassed me long, long ago.

From birth up until his heart surgery at ten and a half months old, we were basically going to the cardiologist every other week.  We *might* have started going closer to once a month for a period of time; I no longer recall for sure.  I just know that it was a routine part of our life, for sure.  His cardiologist at the time (we have since switched) performed all three of these tests basically every time Kiran saw him.  His heart was very closely monitored, to say the least.

Since heart surgery – and since switching cardiologists – I am thankful Kiran’s heart is no longer x-rayed on a regular basis.  He still gets an Echo and EKG done at every visit, but our visits are much more rare now – We are actually living inside our first YEAR between cardiology visits!  Kiran saw his cardiologist in August, and, unless concerns pop up, he doesn’t need to see him again until this coming August!

We are lucky – again with the luck! – Kiran has always cooperated pretty well for these tests.  He used to HATE getting the x-ray when that was being done on a regular basis – it was in a different room, so we would just hear him scream and cry and get mad – but he has always taken on the Echos and EKGs like a champ.  Star patient.  It’s a good thing, because he’s been a frequent patient his entire life.

Feeding Tube Awareness Week

My son has a feeding tube.  If you have followed our story at all, this is not news to you.  In fact, our feeding journey has probably been one of the topics I write about most often.  It has been one of the most difficult parts of Kiran’s story – for me.  The rollercoaster of eating is exhausting at times.  Like so many other parts of Kiran’s journey, it is a cycle of grief and acceptance, over and over and over again.

When Kiran was first diagnosed with a congenital heart defect, he was still our little Jalebi, safe and snug inside my body.  We were informed of a support group, put on by Help-A-Heart, and we were able to connect with other families living with CHD.  This was when I first started learning about the prevalence of feeding tubes in the heart community.  Oftentimes, children awaiting a heart surgery have hearts and bodies that are working so hard, eating is just too much of a strain on them.  They get too tired or their hearts simply work too hard, and they cannot safely take in what they need to by mouth.

Feeding tubes TERRIFIED me.  More specifically, the NG tube, the feeding tube that is placed up through the nose and goes down to the stomach, terrified me.  I didn’t want to have to learn to place it, I didn’t want to have to feed my child that way; I felt like it was one of the worst, scariest things we might be up against once he arrived.

Kiran arrived.  And feeding was an issue.  An NG tube was placed sometime during that first week of his life he was hospitalized.  I was pumping milk for him at the time.  We didn’t have luck breastfeeding initially, and – one of my biggest regrets – I was too exhausted and overwhelmed to really ask for help and explore that option thoroughly.  But I pumped milk that we then fortified with formula so Kiran could get his necessary calories in less volume.  We worked tirelessly on getting him to take the bottle.  The medical team eventually relented that we could go home without the NG tube, but we had to – BOTH his dad and I – successfully place an NG tube before he could be discharged.  Since Kiran was barely taking in what he needed, the assumption was he would need the feeding tube soon.

I placed the NG tube exactly that one time.  That part, I did hate as much as I thought I would.  When we ended up needing to place it for a period of time shortly after bringing him home, his dad did it.  And then, we got to have a small window of time when Kiran was able to consistently take in his calories by mouth.  I was still pumping, we were still fortifying my breast milk with formula, but Kiran was taking it all in by bottle by mouth.  We worked hard at this.  It involved music and bouncing at times, dancing, coaxing – feeding was an exhausting 24/7 job.  He had to be on a strict every three hours schedule, and with me exclusively pumping, I wasn’t getting much sleep during this time.

I look back now, of course, and I wonder why we worked so hard at this.  Especially since, inevitably, his body couldn’t keep up with the food he needed to consume.  We were lucky enough that his heart stayed stable so he could grow before his first open heart surgery.  But this means that his heart was working hard – his lungs were working hard – his body needed the energy used to eat in other places.  We found ourselves relying more and more on the NG tube in order to give Kiran the nutrition he needed.

And then, at a regular appointment with his GI doctor, I got yet another shock to my system: It was time for a g-tube.  Now, let me be clear: I hated the NG tube.  At this point, it took our home health nurse AND another nurse to place one, because Kiran would get SO angry and SO stressed, his little heart worked up SO much that he would be drenched in sweat every time.  I couldn’t even watch anymore.  It was awful.  I became an expert NG tube taper so the tube couldn’t be accidentally pulled out because placing it was that horrible for Kiran.

But a g-tube?  First of all, that’s a surgical placement.  That in and of itself is scary.  At this point, Kiran hadn’t had any surgeries (He has now had three).  But also – a g-tube felt more permanent.  It felt like a failure, somehow.  As a mother, I should be able to feed my son.  It’s an almost primal feeling of shame and disappointment and just deep failure, not being able to do this basic thing the way you feel you should be able to.

Kiran had his g-tube placed in May of 2016.  He had an NG tube for at least half of the first six months of his life prior to g-tube placement.  He has really had a feeding tube almost his entire life, and he continues to get most of his nutritional needs through it.  We have just recently been able to lower the calories he gets through his tube, because he is finally starting to be able to safely take in a measurable amount of purees by mouth.  Really, only in the last two months or so, he has been averaging finishing around 4 pouches/jars of puree each week.  This is huge.  I used to throw away so much food, because he barely ate any in the 24-48 hours it stays good after opened.  Now, I rarely have to throw it away, and when I do, it’s generally not much.

I don’t know that our feeding tube journey has an end.  I am excited about the progress Kiran has made in feeding therapy, but it has been incredibly slow.  He has been in feeding therapy for two years, and though he has made a lot of oral-motor progress, we are just now seeing actual, tangible progress in the volume of food he is able to safely eat.

For Kiran, the feeding tube was initially placed because his body got too tired and too stressed eating by mouth prior to open heart surgery.  Now, knowing everything I know about him and his brain and other diagnoses, I also think it was placed around the time the rooting/sucking reflex goes away.  Though we have always been able to practice by mouth, with varying degrees of limitations, he lost out on a lot of oral eating practice most kids get in the first year of life.  And now, with his motor developmental delays – and the brain reasons behind them – we understand that every new skill like this will just be harder for Kiran to obtain.  Eating is one of the most complex things our bodies do.  Oral eaters don’t think about this, because they learned as a baby, with reflexes in place to initially learn, and with lots of practice and skills most bodies just fall into easily.  But so many other gross motor and fine motor skills need to be in place to successfully and safely eat.  There are ways our tongues move we don’t think about – Kiran has to have exercises to teach his tongue to move in these ways.  He has to be prompted and encouraged to chew his food.  He will forget he has food in his mouth or get too excited, and he has to cough to clear his airway.  He is at risk for aspiration, taking food or water into his lungs rather than his stomach.  He is delayed in his swallowing skills.  He simply lacks oral awareness, so much so that he doesn’t swallow his saliva so it dribbles out of his mouth instead.  Those cute bandana bibs – some heavy duty ones I got for special needs kiddos – are life-changing (and require fewer clothes-changings).

This has been a long, rambling blog.  Bottom line?  Kiran would not be alive without his feeding tube.  So much of his life, including still today, he has not been able to safely, successfully take in the nutrition he needs orally.  Over three years in, I don’t hate the feeding tube.  I’m not scared of it.  It has become such a part of daily life for us, and I know I get to have Kiran here with me because of it.

Heart Month – Day 4 – Medications

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.

Heart Month – Day 3 – Surgery

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.

New Experience

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.

Heart Month – Day 2 – Hospital

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.

Heart Month – Day 1 – Diagnosis

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.