When I clip Kiran’s nails, I don’t even attempt to keep the clippings together.  I just let them fly willy-nilly onto the family room carpet.

Sometimes I don’t give Kiran a bath, even when it’s bath day.

There have been days I have opted out of the second dosage of eye drops, because it is sometimes just too hard. (This has no significant medical bearing on him; don’t worry!)

Kiran has been known to sport his pajamas for an entire day after sleeping in them.  I do always put a fresh pair on before putting him to bed!

I take about two hours in the middle of the day, as often as I can, to drive to a location to take a walk with Kiran.  I could pretend that this is for him – he gets fresh air, gets to see outside, etc. – but really, it is for my own sanity.

I have never once felt guilty about leaving Kiran with a babysitter.  (This may be partially because we have the best babysitters ever!)

I never thought I could love someone this much.  I am not a perfect person or a perfect mother (I know, this comes as quite the shock to most of you!), but I know I am the mother Kiran needs.

 

One year ago today, everything changed.  There are moments in all of our lives that get bookmarked permanently.  Our lives are then divided into the “Before” and “After”.  The day my son was diagnosed with a CHD, in utero, is one of these dividers.

I had been to my anatomy ultrasound a few weeks prior.  My husband had taken time off work to be there with me.  I was told they wanted to redo the ultrasound with better equipment at a different clinic, because they weren’t able to get good pictures of his heart.  Nobody gave any indication that anything was wrong at this point, but I had my normal anxieties.

The day – this day, one year ago – that I went in for the second ultrasound, I tried to quell my fears.  Many people reassured me that it’s normal for the little ones to be wriggly and move around too much, and that it was probably nothing.  Don’t worry – I always say this is like saying “Don’t be Holly” – still, I tried.

I went by myself to this appointment.  The ultrasounds are long, and Arif had just taken a morning off work a few weeks back.  Neither one of us thought we would be getting any results this day, because they had also had us make an appointment with a maternal fetal medicine specialist the next day (In hindsight, this should have been a bigger clue that it was not nothing).

When the radiologist came in and said there was something wrong with my son’s heart (I have no idea the words she actually used), I am almost sure I went into a state of shock.  I remember she went on to explain a little bit.  I know, now, she told me it was Tetralogy of Fallot, but at the time, I just remembered it sounded french.  I literally feel like I couldn’t understand a word she was saying after her initial declaration.  She asked if I had any questions – how could I have questions when I couldn’t even breathe?  When I couldn’t wrap my head around anything that was being uttered?

I waited until the ultrasound tech and radiologist left the room before I burst into tears.  I called Arif and told him he needed to uber down to get me, because there was no way I could see to drive myself home.  I can only imagine the heartache and panic he must have felt, having to hear those words over the phone from his crying, heartbroken wife.

It has been a wild ride since that day.  Most of the roller coaster you have been able to read about in this blog.  I have learned to be as transparent as I can be, because, largely, I want all of you to know how congenital heart defects affect people.  I was so unaware and so clueless before this became my life.

I wasn’t expecting this date, June 18th, to affect me as it has been.  For ten days now, I have struggled with the anniversary of diagnosis day coming.  Much like my body, my heart, my mind knows when the anniversary of my brother’s death is approaching; so, too, did my soul know that this significant day drew near.

It has been a helluva year.  I have felt every emotion more intensely than ever before.  It has been simultaneously the most heartbreaking, most joyous, most frustrating, most courage-building, most terrifying, most reaffirming, MOST…year.

And we haven’t even had a single open heart surgery.

 

My husband gets all the credit for the title of this blog post.  After we got our big news from Stanford today, once Kiran woke up from his nap, Arif came in and told our son that we have his scar installation scheduled.  I love it!  It sounds much more exciting (and less terrifying) than open heart surgery.

So – yes – we have our true surgery date!  Stanford moved his surgery up, at the request of our local cardiologist, to Wednesday, September 7th.  The three of us will be traveling to California at the end of August, to be there for a Sept. 1st pre-op appointment and a Sept. 2nd cardiac cath.

My initial reaction was one of relief and joy.  I was hoping for a September date!  This is really wonderful news, because it is time.  He needs this surgery.  There is no way he would have remained stable until December.  It is a much more logical date to work with.  And now, we can start planning for our trip.  This is the part that helps me, because it is the piece of all of this I can control.  I can make lists and plan and organize to my heart’s content.

And then (mind you, all of this was during the three minute phone conversation with the patient coordinator at Stanford), I had to fight to keep the tears at bay.  It all hit me, and my stomach dropped.  It has never not been real, but man, now it’s REAL.  We have a date for open heart surgery.  It is a lot to take in.

Wednesday, September 7th.  84 days.  Our journey continues.

It is a sit and sob in the kitchen kind of morning.  I have largely been able to keep myself off the ledge as we navigate our new feeding schedule, the g-tube, and all it entails.  I have been able to tell myself he will take what he takes by mouth, and it is what it is.

But it seems like he is perpetually taking less and less by mouth.  The hope was having the NG out of the back of his throat would motivate him to eat more by mouth, not less.  The hope of starting the overnight feed and doing fewer bottles during the day is he would have more energy to eat, not less.

And I can’t figure out why.  This is the piece that makes me break down and cry.  If I don’t know for sure why he isn’t wanting to eat by mouth – teething/mouth pain, energy/heart-related, pure stubbornness/lack of desire – I can’t figure out how to help him.

We do see our GI doctor next week.  We are going into ChildServe for a feeding clinic evaluation, but they didn’t have a date until August.  I am taking all the steps I know to take to help him with this.  I literally don’t know what else to do, but it makes me worry, watching his oral feedings decrease.

He keeps teaching me this same lesson over and over again: That there is a LOT in this world I simply can’t control.  No matter how much I wish I could, no matter how difficult it is for me that I can’t….I have to figure out how to come to a place of peace with this.  Feeding has been one of the greatest emotional difficulties of his life thus far, for me.  I have to locate my peace, somehow.

I want to exude strength, thankfulness, joy.

I can’t seem to get out from under my grief.

It is not that I want Kiran to be different.  I don’t.  He is the perfect little boy for me.  He is opinionated and charming, happy and strong.  I love him with my whole heart.

It is just that I wish a different life for him.  For me.  For all of us who love him.  I wish he didn’t have to be so strong.  I wish he didn’t have to experience so much pain.  I wish his life could be innocent and pure.  I wish his days could be full of exploration instead of appointments.  I wish he knew what it was like to breathe without working so, so hard.  I wish he knew the joys of eating – and being able to stop when he wants.

I have grown so much more confident caring for him, and he continues to be largely stable.  We have had a relatively quiet few months – no ER visits for awhile, the only hospital stay planned – I don’t know why now is when I am struggling.

Perhaps because I always find my strength when I have to – when he needs me to.  In the quiet, in the calm, I am allowed to break down, just a little.  I am just worried I may find it more difficult to find my strength again.  I try so hard to keep my armor on, always, because I don’t know when I will have to go to battle for him next.

It scares me that I find myself crying more lately.  It scares me that I seem to be having more days when I struggle to get out of bed.

__________

I wrote all of that before going to church this morning.  I don’t know what kept me from publishing it – apparently I had a sense there would be more for me to process today.

The skin around Kiran’s g-tube started looking a bit more red than usual yesterday.  I made a note of it, planned on watching it carefully.  While I was at church, my husband gave Kiran a bath and noticed things were looking worse…Today, there was white pus in the midst of the red.  Infection.  So – off to urgent care we went.  We caught it (of course) at the very start (since we were watching it), so we got an oral antibiotic that should take care of it.

But.  The moment I came home and saw his infected skin, I immediately felt like a failure.  Surely, I must have done something wrong.  I didn’t keep it clean enough, I should have changed the dressing more often…something.  Somehow, it reflects on me.  Somehow, I screwed up, causing my poor baby pain.  I cried.  I beat myself up inside my head and out loud to my husband.

This is how my brain works.  Unfortunately, though I can show forgiveness and grace to everyone around me, in enormous quantities, I struggle showing myself that same consideration.  I struggle with wanting – no, needing – to be the perfect mother, the perfect caregiver, the perfect nurse, the perfect person.  I need the A+, and I don’t know how to be kind to myself when I don’t achieve it.

It is a constant work in progress.  I’m off the ledge now, though I still have the nagging sensation I could have done more to prevent this infection.

What I do know is this: It remains true.  I find the strength when he needs me to.

 

I.  Despise.  Medical.  Paperwork.

Not only is it time-consuming and head-swim-inducing, but it also always invokes an emotional reaction out of me.  It is hard reliving Kiran’s brief but extensive medical history.  It is hard when I realize I have ABSOLUTELY NO IDEA who the doctor was when I was giving birth, but I could tell you the cardiologist’s name who was on the floor the first week of his life.  And I could tell you every other specialists’ name since then.

I also can’t recall – and this makes me feel like a poor mother, despite my best efforts to show myself grace – when he did certain developmental things.  I don’t remember how old he was when he first smiled; I simply remember how relieved we were when we saw it.  How thrilling it was that he had the energy to smile!

With all of it – I have to admit – I don’t even have a baby book for him.  I don’t write down milestones.  We do try to take pictures every month, but we are often weeks late on that!  My only true record of his life is here on this computer screen…and in the deepest places of my heart, where it all resides.

One of these days, I will organize all of his medical information, and it will make filling these forms out an absolute breeze.  Until that day comes (likely when he’s in college), I will continue to have to spend many minutes – or hours – compiling all of the information that is wanted.

But not tonight.  Even armed with chocolate and pinot noir, my brain can’t handle it tonight.  My heart isn’t up for it tonight.

Tonight, I will simply try to remind myself why I can’t hold all the information in my head.  I will remind myself why it doesn’t matter that I don’t know who caught him as he came into this world.  I will do my best to love all I do know, the important stuff, and all I am willing to do for my son, even when it makes me want to pull out my hair.

If filling out medical forms isn’t the purest form of love, I don’t know what is.

 

 

I cannot honestly say it has been a perfectly smooth transition into the g-tube world with Kiran, but we are definitely transitioning.  I had a couple days that were quite overwhelming last week – I even asked my mom to come spend the day with us one day, which is a huge deal, for me to ask for help.

I am getting the hang of it.  We added an overnight feed to our schedule, which allows us to only have to fit in four bottles during the day instead of 6.  Our days are less hectic and more full of other things, and that feels pretty darn good.

Kiran’s sleep has been quite disrupted by something.  Before we went in for his g-tube placement surgery, he was sleeping pretty well through the night.  He would wake up around 3 am needing a diaper change (darn Lasix pee!), but he would go to sleep quite quickly after that.  Since we have been home from the hospital, he has been a lot more fussy.  He will often wake two or three times throughout the night.  Instead of it being as simple as going in and putting the pacifier back in his mouth, I often find myself going in 3-5 times with every wakeup before he finally settles back into slumber.  I don’t know if this is just because his routine was disrupted with the hospital stay, if he is still sore recovering from the surgery, or if it really is darn teething this time!  (It seems so, but haven’t I said that before!?!)

We saw Kiran’s cardiologist this week.  Not much has changed, but he feels we have a good case to present to Stanford in moving the timeline of his surgery up from December.  His heart is enlarged, his lungs are overcirculated or wet, and his oxygen saturation levels are climbing – all of these things indicate he really will not be stable until December.  Dr. M. said especially the overcirculation in the lungs – if left this way too long, it can cause scarring.  I hope Dr. Hanley’s surgical team at Stanford will listen and take us seriously.  I keep telling myself, when it comes to this situation “Trust the process.”  I hope I am right in doing so.

The early access vision person was in this week as well, and Kiran has moved up another two points on his visual assessment!  He has had a steady increase of two points every month since she started coming.  This is great news – slow and steady progress!  I am still anxiously awaiting our full day at the genetic eye clinic in Iowa City in early July … I hope this time we really will get some answers!

All in all, things have been going pretty well over here as we get used to yet another change in our routine.  We love getting to see Kiran’s full handsome face with no tape and no tube in his nose!