This is fitting, since I didn’t get around to posting yesterday due to Kiran being ill.  And I am sitting here attempting to be coherent this morning after basically sleeping not-at-all last night, due to Kiran coughing, crying for me, and gagging as if he was going to be sick all over the mattress I pulled to the floor so he could safely sleep next to me (That’s love – or insanity – it’s a fine line).

I never thought I would live a life where doctors and nurses would really matter to me the way they do now.  I hate going to the doctor – still do – but it has always been such an infrequent nuisance for me.  I never gave much thought – or had much of a relationship – with any of them.

But with Kiran, it’s different.  With Kiran, we have relied on doctors and nurses from the beginning.  We have lucked out and started with some really great doctors and specialists on his team – and we have had to rework some of his team along the way to provide the best care for Kiran.  I feel solid with everyone currently on his medical team and am so pleased with the relationship we have with them – and they have with Kiran.  We truly have people who care about Kiran’s well-being.

And the nurses.  We have had so many great ones, but two have really had significant places in Kiran’s life.  When I had to say goodbye to Nurse K, Kiran’s home health nurse from birth until after synagis season when he was one, I was terrified.  She was someone who stopped in once or twice a week to make sure Kiran was doing okay.  She was the one who kept me sane and patiently answered all my many questions, and she cared about Kiran so much too.  Losing that relationship was hard – I wasn’t sure I could do it on my own.  I have learned that I can, but we still miss Nurse K.  Nurse R is another one who has known Kiran since birth.  She worked in his pediatrician’s office up until recently – and – thank goodness – was kind enough to allow me to still message her with questions/concerns even though she is no longer working there.  She knows Kiran’s health history – and Kiran’s personality – so well, and truly loves him.  I messaged her just last night, wondering about the best course of action (doc visit or not) if I have suspicions Kiran is battling the flu.  She never makes me feel crazy and always puts my mind at ease.  I can’t imagine not having her in our life, especially when I’m spiraling within my anxiety and don’t see the point in talking with someone who *doesn’t* know Kiran.

I know there will be turnaround.  We had to say goodbye to one of Kiran’s specialists this past year.  His endocrinologist, the last specialist to join his team, so it stung a bit less than if it had been a more long-term medical team member.  But I know the day will come, and I dread it.  We have good people who genuinely care, and I couldn’t be more thankful for every single one of them: Kiran’s pediatrician, cardiologist, gastroenterologist, genetic ophthalmologist, orthopedic surgeon, geneticist, endocrinologist, feeding clinic team, and neurodevelopmental team – and of course, the nurses.  The doctors couldn’t do it without them, and we couldn’t either.

I had exactly no – zero – knowledge of congenital heart defects before Kiran was diagnosed when I was 22 weeks pregnant.  A newborn with heart issues wasn’t something that was even on my radar.  I had never known anyone born with a heart defect or who had a child with a heart defect.

When Kiran was diagnosed, I was thrown completely blind into a world I knew nothing about.  And since then, I have made it one of my life’s goals to be sure that everyone I know – everyone Kiran knows – has an awareness of what CHD is all about.

1 out of 100.  Congenital heart defects are SO prevalent.  And SO underfunded.  It is another reason I use this blog and my facebook page (especially during heart month) to increase awareness, understanding, and the necessity of research.  Without the research that has already been done, Kiran would not be alive today.  1 out of 100 babies in the United States are born with a congenital heart defect; 25% of them will need a life-saving operation before they reach one year old.

Kiran is in that 25%; he was born with a critical congenital heart defect.  69% of babies born with a critical CHD – babies like Kiran – are expected to survive to 18 years of age.  Do you want to know the importance of research in this area?  Between 1979 and 1993, about 67% of babies born with critical CHDs survived to one year.  Between 1994 and 2005, that percentage increased to 83%.  I would imagine it has continued to increase in the last 14 years.  (These statistics taken from CDC’s page on CHDs: https://www.cdc.gov/ncbddd/heartdefects/data.html  – I would encourage you to click that link and read more statistics about congenital heart defects).

Though Kiran’s heart story, so far, has been relatively textbook – and his other diagnoses, more significantly impacting his daily life, are at the forefront of my mind instead – I will never take for granted the opportunity for life Kiran was given.  His extensive, complex surgery – pioneered by his heart surgeon, Dr. Hanley – was unheard of 40 years ago.  I don’t know exactly when Dr. Hanley began performing the surgery, but I know he completed his fellowship in 1988.  There are new and exciting advances happening in the field of tiny hearts – I am just thankful Kiran was born when he was.

So.  Educate yourself.  Ask me any questions you might have.  Share my facebook posts, CHD facts, my blog.  Give to heart organizations that have a focus on pediatric heart interventions.  Gain knowledge.

It matters.  It matters so much to our family, but it also matters to 1% of other families,  40,000 families per year in the United States, facing a life they never imagined.

 

 

My heart is heavy with this topic.

No parent should ever have to bury their child.

It says so much, yet fails to fully encompass what that experience is like.  I assume.  I cannot express what that experience is like.  I have watched my own parents bury my brother, so I have perhaps a closer, fuller understanding than most … and I have lived in very real situations when it could have been a possibility for me, so I have perhaps a closer, fuller fear of this than most.

It is a fear tucked away, but just barely.  It surfaces far too often.  It is part of living the heart life.  So many sweet warriors gone too soon.  I grieve and cry and pray and my heart screams on behalf of so many sweet families who have to say that horrible goodbye.

Today, so many days, I remember these heart warriors.  I remember their stories, their battles, their passing.  Each one I hear about affects me in a deep, real way.

I cannot fathom.  I hope I never have to know the experience personally.

For those who have…Know that I remember your heart warrior too.  I love them: their life, their stories.  I know their names.  They will not be forgotten.

 

It feels disingenuous, somehow, to skip writing on this day.  But I have to be honest – every time I try to write this post, it falls flat.  It ends up not sounding sincere or real.

I don’t feel I have the right to write about Kiran’s dad.  I never felt I did; I never felt it was up to me to slap my emotions onto him.  If I know one thing about life, it is this: Everyone’s experience is their own.  It is based on past experiences, one’s internal dialogue, the glasses tint through which we view the world around us.

It doesn’t mean I don’t appreciate the things Kiran’s dad brings to the table.  I do.  I acknowledge and appreciate them often, out loud, to him and others.

But it is a topic that holds too much pain for me, still.

I love anything with a heart on it.

I can rattle off the names of multiple specialists and therapists without pause.

I still sometimes panic when I think I catch a hint of blue around your lips, even though they have only ever turned blue once.

I will never forget how to count your breaths, and I learned very quickly what your normal retraction looked like during the months leading up to your surgery.

I know more medical jargon than I ever thought I would, and I have found my voice and my place in the medical world.

I fight alongside you; I take your battles personally; I advocate, advocate, advocate.

I have perfected the art of saying goodbye, just in case, even though every ounce of my very being clings to the hope that it is just another see you later.

I am a heart mom.

 

 

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.

 

“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.

 

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.

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.