We have had a quiet few weeks.  It has been beautiful.  To relax; to enjoy Kiran.  To relish every smile, every laugh … He’s been sick.  We’ve been watching his breathing.  There are always medical concerns, and I am often on high alert … but we haven’t been to the ER.  We haven’t had any major news bulletins.

It was the calm.  I love the calm.

This morning has been overwhelming.  In just the couple of hours since I posted the eye update, life has changed for us.  I have always been so amazed by how moments can change the trajectory you’re on.  Words can make your heart stop.

Perhaps I am being too dramatic, but it all feels very dramatic to me, right now.

I scheduled Kiran’s g-tube surgery this morning.  I thought this would be the big news of the day.  May 18th, two weeks from today, he will be put under anesthesia and have a g-tube placed.  As soon as I heard the date, my heart started racing.  It is time – we know it is the right thing for him – but it’s in two weeks!  Anytime Kiran is put under anesthesia (this will only be his second time, thank goodness!), it is risky.  It is scary.  It will be a hospital stay, likely 2-3 days if everything goes well in recovery.  It will be a new skill to learn.  Another change.  Another procedure for Kiran to endure.

And then I got an unexpected voicemail from the eye doctor in Iowa City, wanting to discuss something he found in Kiran’s genetic results.  We knew Kiran had a minor deletion.  It is a band on a chromosome that not much is known about, so it didn’t really give us any new information.  We simply know there is a genetic abnormality, a small deletion, but we don’t know what it means.

Apparently, this small part that is missing is near a gene that causes brain malformations.  This could be a very real possibility for Kiran and could explain what is going on with his vision.

Let me stop for a second.  Those are the words that changed things for me.  No mother wants to hear the words “brain malformations” when talking about her child.  It matters not that I have known all along this could be an issue we would face.  It doesn’t matter that I have suspected brain issues from the beginning – a mother’s sense, perhaps – none of that matters.  When you actually hear a doctor tell you it is a possibility the structure of your child’s brain may be abnormal…the world stops.

I immediately come back to this truth: He is still my Kiran.  He is who he is.  If his brain is malformed, it has been that way from the beginning.  It doesn’t change who he is.  He is my brave, sweet fighter.  It certainly doesn’t change my love for him.

It does, however, scare the hell outta me.  It does overwhelm me.  It does put me back in that place where I wonder: Can I do this?

I can.  And I will.  It makes getting that MRI ordered, hopefully while he is already under for g-tube surgery, even more important.  We need to see if there is something going on in his brain.  It won’t change who he is, but it will help us help him.  It will help us prepare for his future – it will help us know what that future will look like.

I am scared.  I am scared for him to be put under anesthesia.  I am scared to find out news about his brain.  I am scared of how everything will pan out with heart surgery timing at Stanford.  I’m terrified.  This morning, right now, in this moment – that’s where I am.

Overwhelmed.  Terrified.  And sad.

This.  Is.  Hard.

It is always a journey.  Every time we have a big appointment that I have been concerned about – like vision yesterday – I think that answers will come.  I think that if I can just get to that appointment, I will know what’s going on with my baby boy.  I will know what comes next.  I somehow always forget that oftentimes answers simply create more questions.  Kiran’s medical journey is not one of clear-cut answers.

We really didn’t learn much.  He has made progress – we have seen that – but he still has the nystagmus (shakiness) in his eyes.  This is okay for a newborn, but by now, it should be gone.  It’s not.  The question we haven’t answered yet is: is the shakiness there because his vision is poor or is there a communication problem with the brain?

His retina looks normal, but the eye doctor wants us to have a couple of tests done to rule out vision problems where the retina would appear normal but may not be.  We will do this in early July when we have an appointment in the genetic eye clinic.

If we can somehow coordinate getting an MRI done while Kiran is already under anesthesia for his g-tube surgery (not sure yet how plausible this is), he would like to get brain imaging.  He is not sure it would be worth it otherwise – it would give us information as to why vision is behind but wouldn’t necessarily change what we are doing to help him at this point.

His only other thought, different from three months ago, is that perhaps the pupil size is factoring into his ability to see.  His pupils are tiny.  If this is the case, it would likely be a someday surgery to enlarge the pupils to help him see better.

So – we keep doing what we are doing.  We practice with the light box and noisy toys and contrasting colors/images.  And we go back in July for more tests.

 

I am trying to trust the process.  Desperately trying to trust the process.  The panic is rising, from the bottom of my stomach clear up to my throat.  I feel like I am shaking, though physically, I am not.  Panic.

December 7th.  That is the first MAPCA surgery date Dr. Hanley has available.  I knew he scheduled out far in advance, but I wasn’t prepared to hear that date.

Of course, I asked the question: My son is going to need surgery before then; what happens when he needs surgery?  And I was reassured: Dr. Hanley will review his case, and he will move patients around as necessary.

Trust the process.  I have had to trust it so far; I need to continue to trust.  Right?

The most frustrating thing about this?  I still can’t plan.  We still don’t have an actual surgery date.  There is no way Kiran will remain clinically stable until December.  So, we are still in a state of limbo.  This will slowly drive me insane; of this, I am sure.

 

I wish, sometimes, information could come to me wrapped in a nice, neat little package, tied with a pretty bow.  I wish it could come exactly how I want it to – without provoking more questions or inducing more anxieties.

Then again, I wish a lot of things that just aren’t meant to be inside this reality.

Everything happened all at once today, like it tends to.  I was on the way to an impromptu doctor’s appt with Kiran (he has hand-foot-mouth disease, fun!) when I missed three calls from Arif and received a text saying the email from Stanford had arrived!  So, in bits and pieces, in the waiting room and between the nurse and doctor, Arif shared the news with me over the phone. (No, neither of us could wait one more second.)

Kiran is an excellent candidate for unifocalization!  This is wonderful news.  My biggest fears alleviated.  They will likely want to perform what they call an “intraoperative flow study” to determine if they can also repair his heart during the surgery.  This would be ideal – one less open heart surgery is always ideal.

They said they generally do these surgeries in the 3-4 month age range; however, given Kiran’s health, they recommend scheduling the surgery within the next 3-4 months, provided he remains stable.

So.  I feel like I am finally wrapping my head around what comes next.  First, I will be calling our local cardiologist to discuss this tomorrow.  He will help us determine whether Kiran is still “clinically stable” – I am going to push toward the side of 3 months versus 4 for scheduling surgery.  Secondly, we can now finally discuss if it is a good idea to move forward with the g-tube surgery.  I would like to get this done sooner rather than later, if it is safe to do so.  We may need Stanford to weigh in on this decision as well – I will likely be calling their surgical office tomorrow too.

And then it’s time to get a surgery DATE already….

Then I can call and discuss benefits with our insurance company.  I can make lists for what we will need for the hospital stay in California.  I can move forward, one step at a time.

July or August.  Kiran’s first open heart surgery (provided he remains stable for the next couple of months) will be in July or August, 2016.

 

I am so thankful for the past six months.  It is simultaneously the easiest thing in the world to be Kiran’s mom and the most challenging thing I’ve ever done in my life.  He is a sick little dude – you can tell – he wears out easily these days and sleeps a lot – but he is also a very happy, easygoing little dude.  He’s my little dude.  He’s my everything.

We are still waiting to hear from Stanford.  Impatiently.  I continue to feel up-in-the-air on whether I want to know the surgical plan.  A part of me is loving the life we are living with Kiran – the moment-to-moment, seize the day kind of life – and I do not look forward to the hospital life we will have to start living at some point in the near future.  A part of me wants to keep my head buried in the sand, for just a little bit longer.  The other part?  Let’s get this show on the road.  This is the path before us; let’s go.  I have things to plan.

It has been a long time since I have had sadness overcome me.  At least, I feel it has been a long time because things have just seemed – brighter – lately, in some ways.  But today, as I was feeding Kiran his bottle, it came in waves.  The sadness and the fear.  I am fearful the baby boy I bring home post-surgery, post-recovery, will not be the same baby boy I brought into the hospital.  There are so many things that can go wrong in surgery and in recovery.  It is the one negative thing about going to a heart support group – you are so aware of all the things that could go wrong (on the flip side – everything is so dichotomous in this entry! – you also know all the things to be prepared for).

But then I think about the past six months.  I think about all the new things I have had to learn.  All the times I felt completely overwhelmed – felt sure I couldn’t possibly learn this new skill or accomplish this piece of Kiran’s care.  Guess what?  I have figured it all out.  And when I don’t have it figured out, I have grown confident in the steps to take to figure it out.

I’ve got this.

Whatever this is – whatever scary things we have coming on this path – I’ve got this.

I am capable of so much more than I ever thought possible.

And the worries – when it comes to the moment I have to face them, they aren’t so bad.

I was so overwhelmingly sad that I may not be able to breastfeed Kiran.  Guess what?  That was our reality.  But so many other things were going so well, it didn’t end up being that big of a deal.  And we did okay.  I am pretty much done with pumping – I made it almost exclusively to about four and a half months and have had to supplement more and more with formula since then – and you know what?  I am relieved to be done.  No more pumping!  I have more time to focus on playing with Kiran and helping him develop.  There is not enough time in a day to keep up with exclusively pumping, especially when you’re feeding orally and via tube, especially when he sleeps as much as he does.

I was so upset when we had to go back to the ng tube after Kiran had done so well for a couple months.  I was so sure I couldn’t handle tube feeding long-term.  It has become old hat.  Then we got the pump, and I was nervous to be feeding a different way.  And now, less than two weeks in, it’s just a part of our day.

I have always been a person who doesn’t want attention.  When we are out in public, I want to simply fade into the background.  A wallflower, that’s me.  So, at first, when we would take Kiran in public, it would bother me that people would stare.  Now, I simply hope they will be brave enough to ask questions because that gives me an opportunity to teach more people about congenital heart defects!  Kids are my favorite, because they will often (loudly) ask their parents “Why does that baby have an owie on his face?” or “What’s on the baby’s face?”…and I answer now.  I don’t ignore it or shy away from it, even though they aren’t asking me directly.  I answer it simply, and I tell them it’s okay to look.

When I really reflect on the past six months, I realize: I am not the same person I was before giving birth to this child.  None of us are.  I get that.  But I have grown in leaps and bounds as a person.  Kiran has forced me out of my comfort zone in so many ways, and all the changes have been for the better.

I will go to battle for this child.  I will do whatever it takes.

I’ve got this.

I meant to write this out yesterday, because I plan to reflect on the past six months later today….

Kiran had his vision assessed again yesterday. He continues to make steady progress visually. We see it. His eyes shake less, he turns toward noises, and he tries to track and can for a few seconds.  He went up two points on the assessment!  We will take it. Progress is progress, and I am so relieved he’s making some. 

We had an ortho appointment yesterday as well. His feet look really good!  The puffiness I was concerned about isn’t really puffiness – it’s just the way his baby fat forms due to being in the shoes/brace. It is totally normal and nothing to worry about!  And his big toes (that I sometimes worry look funky) look fine. It’s funny all the little worries that start prickling at my brain. We get to go down to just nighttime with the brace – 12 hours at night!!!  No more middle of the day!!!!  Very excited about this. 

I love good appointment days. Good news days. We are trucking along. Oh – and the little chunk is over 14 pounds now!  My growing baby boy. 💙

I have never done well living inside a state of limbo.  I hate waiting.  Anyone who knows me well knows that I have a plethora of patience when it comes to children…and absolutely zero patience when it comes to pretty much anything else.

Stanford should have received Kiran’s records ten days ago.  I know the surgical team meets and discusses cases on Wednesday mornings.  What I don’t know is if Kiran’s case was discussed last Wednesday or will be discussed in two days.  What I do know is that I simultaneously want and don’t want to have a surgery date.

I am thinking we should know something by the end of this week.

Though I have been through the gamut of emotions over the course of the past 10 1/2 months, I cannot predict what I will feel when we do finally get a surgery date.  I am sure it will not be one emotion.  Will I primarily feel relief?  Fear?  Peace?  I honestly couldn’t guess.

What I know a surgery date will provide me, however, is a purpose.  A sense of control.  Once we have a surgery date, I have a whole to-do list.  There will be a trip to plan, animal care to coordinate, bags to pack.  There will be a possible g-tube surgery to schedule, and a hospitalization to live through with that.  The path will be illuminated before me, whereas right now I am simply…waiting.

I.  Hate.  Waiting.

In the meantime, though, over the course of the past few weeks, I feel like we are finally LIVING with Kiran.  We have a social calendar.  We have two babysitters – the nurse who handles our nights out and a very responsible 18 year old who comes to give me a chance to run errands/make appointments while Arif is home working (a new situation that I LOVE so far).  Kiran and I have gone to Raccoon River Park and walked around the trail a few times, and we just got a nice new stroller that will make this experience even more enjoyable.

It has been good.  We are enjoying him.  Now that cold and flu season is largely over and the weather is nicer, we are able to take him to outdoor events.  He loves it.  We love it.  It is good for our family.

I will be sad when surgery dates and hospitalizations and recovery times start cutting into this life we are creating … but I will be relieved knowing we are starting down the path to make him healthier.

 

This will be the most difficult and liberating blog post I have ever written.  People have always commented on my honesty, my openness, my vulnerability, but the truth is: It terrifies me to write about this.  But this morning, I am realizing: I have to.  I have to.  And even though it’s not really about Kiran and his heart, it is, because he and I are connected in ways I can never explain.  He is firmly entrenched in my story now, because he has changed me at my very core.

It is National Sibling Day today.  I have been remembering my brother this morning, as I listen to encouraging music.  I am feeling a lot of things, but I primarily feel thankful for his presence in my life.  But thinking of him this morning has taken me back to that dark time in my life, right after losing him.  It is similar in so many ways to what I have been experiencing these past few weeks.

I have to back up.  I grew up in the church.  I asked Jesus to be my savior when I was 5 or 6 years old, and I was the epitome of “good little Christian girl” throughout my childhood and adolescence.  Well, for the most part.  I was always good at saying the right things, outwardly expressing what I needed to, to be the good Christian.  Just like I excelled in school, I excelled in church.  I have always been a quick study.

Looking back now, through the lens of life, I can remember many nights, staring up at my ceiling, trying to communicate with God and feeling nothing.  I was doing everything I knew to do to have a relationship with him, but I never really felt like I did.  I would have never expressed this at that point in my life; it was very important for me to be “perfect” and to please people.  I wanted to do everything right.

I continued along this path for a few years after my brother passed away.  I knew the things to say, the songs to sing at church … It was important for me to still be that strong person, that perfect Christian.  But my bubble had been popped, and none of it made any sense to me anymore.  I wouldn’t say that I grew angry with God; I would say, instead, I couldn’t find him.  I had trouble before, but definitely after that experience, I just couldn’t find him.

And I did grow angry with the church.  As I became more educated about religion and the church, the whole establishment made me furious.  I made a very conscientious decision, my junior year of college, to firmly walk away from my faith.  I was done trying to say and do the right things; I was ready to face the reality that I just didn’t buy into it anymore.  Maybe I never had.

One week ago today, I had a fleeting thought pass through my mind that I never thought would come again: Maybe I should go to church.  At the time, I had no idea where that thought came from, and it terrified me.  It still does.  Now, today, I realize, through a skeptical heart: I am grasping at straws.  The threads I have been clinging to in my life are unraveling, and I know something has to change.

The entire time we have been on this road with Kiran, people have been praying for us.  I have seen solid faith and love and strength in so many of the other heart moms I have gotten to know.  It is a common theme – I feel I stick out, because I don’t talk about God when I talk about our journey.  These last few months, I have often thought: Wouldn’t it be great if I had that?  If I had faith, if I had something (someOne) to cling to, to believe in, to trust has a plan for all of this?  I know the lingo.  I know the stories.  Wouldn’t it be great if I could?  But largely, I felt (and still feel) like I can’t.

My heart has been skeptical and hard for so long against this, I don’t even know where to begin.  I may be overthinking it, but I don’t even know if it’s possible for me TO believe, just because I may want to.  I don’t pretend to have any idea where this line of thinking may lead me, but I am determined to at least do some spiritual seeking.  It will be baby steps for me, for sure.  I can’t express how much this terrifies me.

I do know that it’s scarier to remain in the space I’ve been in these last few difficult weeks than it is to take a step forward in any direction.  So I’m taking one step forward, right now, by writing this out and asking: Please, help me get started.  Tell me about your church and why you love it.  Pray for me.  Send me your favorite Bible passages.  Share with me your honest, vulnerable story of faith.  If I believe anything with all my heart, it is that community has become one of the most important things in my life.  I do not know how I would still be standing if it wasn’t for the heart community, my family, this online community of people who are reading this (some I have never even met), my friends, and even the healthcare professionals we see on a regular basis.  I believe in community.  Wholeheartedly and without skepticism.

My realization this morning: In less than two short weeks, my precious Kiran will be six months old!  I cannot believe I have had the privilege of being his momma for almost half a year.  As anyone reading this knows, it has been quite the eventful life – and a big change for his daddy and me.

I have been struggling lately, feeling bogged down by the daily aspects of his care.  It requires a lot, and I am only one person.  Some days I feel like all I do is what is necessary to keep him alive.  I forget to slow down and enjoy the snuggles, the smiles, the laughs.  I forget to take him outside and walk around the park next door.  I forget to soak it all in – to breathe in his scent, to enjoy the feeling of his weight in my arms.

It has always been my desire to live a present, mindful life.  I veer off the path frequently and have to quiet my mind and turn my feet back in the right direction.  That is what I am attempting to do today.  Forgive myself for where I’ve been and make a point to get back to where I desire to be.