I can’t believe I forgot this part of our day!  When the medical students were in getting the health history for our GI appointment, they asked if I was comfortable changing out the g-tube.  Short answer: No.  Long answer: Our g-tube change-out experiences have been pretty traumatic so far.

The first g-tube change-out was three months after the surgery to place it.  It was an office visit here in town at my former GI’s office.  The nurse talked me through it, and I did it.  It was easy!  I was confident!  THAT VERY NIGHT was the night the tube got pulled out when our babysitter was putting Kiran in his crib.  We came home as fast as we could but due to swelling and timing, we were unable to get the tube back in and had to take Kiran to the ER.  That remains the most stressful, horrible ER visit in his entire life – and, as you might recall, he has had many.  The dilators they had to use were really painful for Kiran, and I remember just laying next to him crying along with him.  It.  Was.  Awful.

So, three months after that, time to change it – I was determined to do it myself…but wanted the home health nurse here while I did it, in case.  The old one was hard to pull out – the nurse even said it was like there was an air bubble stuck behind it or something – and then when I saw the hole, I just kinda freaked out.  I couldn’t do it.  The nurse had to do it.

So yeah, I told the truth about our history and my discomfort and stress around changing the g-tube.  So the GI doc had her nurse come in to go through it with me another time.  We were due to change it at the end of this month anyway.  Now, I get the logistics of it – I know exactly HOW to change the g-tube.  Heck, I could teach anybody how to do it!  It’s the actual doing it.  Still, I let the nurse go through his teaching…and after a long morning of many appointments and having been up since 5 am, despite my uncertainty and anxiety around it all…I changed the g-tube.  I did it.  It didn’t go perfectly, but it went pretty damn smoothly.

And he went through in great detail the items we should always have with us – our “g-tube emergency kit” if you will…and went through what to do if the tube comes out and we can’t get it back in.  All stuff that would have been nice to know ten months ago when the g-tube was first placed.  Again – I am glad we are in Iowa City now.

Three months from now, when I have to change the g-tube at home without a nurse standing by…we will see how I do.  But.  I did it.  That’s one more time (two total, now) that I was able to successfully change it.

Normally the first thing I want to do after a day of appointments in Iowa City is write.  I write to wrap my head around things, to “process out loud” in the way I am best able.  I generally do it on my phone, in the car, on our trip home.

I honestly can’t explain why yesterday was different.  I just didn’t want to.  I was exhausted, and I wasn’t ready to revisit the day.

We had good appointments.  Kiran’s echo and ekg looked good.  His pulmonary valve is leaking a little bit, but “that is to be expected”.  It is the most bizarre thing in the world to talk about … so nonchalantly.  I am learning about his heart all over again, post-surgery.  This leaking is the big thing we will be watching; it will be Kiran’s heart’s way of letting us know it’s time for a valve replacement.  Right now, Dr. R. said more than 90% of the blood is leaving his heart to get to the lungs (as it should be).  Less than 10% is going back into the heart (that’s where it “leaks” to – yes, I had to ask – leaking sounds bad).  This is apparently the definition of everything looking good at this point.  Once we get more to the 60/40 range – 60% going to lungs and 40% leaking back into the heart – we will then watch and wait for his right ventricle to enlarge … and only then will the risk of surgery be worth it.  Again – so bizarre – this heart world stuff.  We basically monitor and wait until his heart gets in pretty bad shape … and then we intervene.  We have no way of knowing when this will need to happen.  In an ideal world, the valve would make it until Kiran is in late adolescence.  Some kids need a valve replacement as early as 5 years old, others make it to pre-adolescence.  Only time will tell.  We did learn definitively that his first valve replacement will have to be another open heart surgery, due to the size of the valve that was placed.  If Dr. Hanley had been able to fit a larger valve in, the replacement could have been done in the cath lab, but Kiran was just not big enough for a bigger valve.  This was probably the one tough piece of news today, in an otherwise very positive appointment.

We are able to take Kiran off his post-op protocol aspirin.  He is down to only his two eye drops for medicine – NO HEART MEDS!  Everything looked good enough that we decided next steps will be one more lung perfusion scan next month.  Provided that looks good, we don’t need to see cardiology until early July.  We will be scheduling a cardiac cath for the summer – likely late July/early August.  Hoping that his pressures and everything will continue to look good so there will be no need for interventions.  All in all, everything looked good!

I think I may have intimidated the nutritionist a little bit.  She didn’t have much to add, and I feel like the appointment was basically her telling me what I was doing looked great.  I guess that’s a good thing!  I am glad to have her contact info, and I can reach out if I have questions down the line…but all in all, I don’t think it’s a necessary part of our medical regimen.

I really liked the GI doctor.  She seemed far more knowledgeable than my previous experience with a GI, and she was actually motivated to get the g-tube out – something I never experienced with our former GI.  She set a goal for g-tube removal by age 3.  In the first moments after hearing that, I kinda panicked…3 seems so far away…but I was quickly able to do the math.  Kiran is already 16 months old.  We have to not use the tube for six months before they will remove it, and she said she doesn’t like to remove it in the middle of cold and flu season.  So.  We have basically about a year to get Kiran to the point where we don’t need the tube at all in order to make that goal.  It does seem reasonable.  We start feeding therapy today, so I am hoping to get new tools and tricks to use to help us reach that goal.  Ultimately, in our situation, I still don’t feel GI brings much to the table.  He’s not on any GI-related meds, we have his feeding and pottying handled, there aren’t mysteries we are trying to solve here….He is simply fed primarily through a tube.  His growth and feeding can be monitored by his pediatrician.  But.  Since I liked her – and I figure it doesn’t hurt to have her on the medical team until we get the g-tube out – I figure we may as well see her when we are already there for cardiology appointments.

Kiran rocked the entire day.  He was so good for the echo and charmed all the medical students and doctors.  He fought sleep until we had to wait a long time for the GI doc (our last appt. of the day), so he was up from 5 am until about 10:30 am, when he finally gave in in mama’s arms.  He traveled well, slept well in the hotel the night before…just all of it.  He really is such an easygoing dude, and we are so, so lucky for this!  I can only hope it continues as he gets older and more aware of everything that’s happening.  Overall, I think he handles these big appointment days far better than his dad or me!

 

When I find myself in the trenches – deep into things – I am able to roll up my sleeves and do what needs doing.  I have seemingly endless pockets of strength and bravery and resilience.  I fight and fight and fight.

When I am finally outside of the trenches – when I have caught a cool breeze – experienced a more calm period in life – and I realize I may have to get back in those trenches….

That’s when the anxiety takes hold.

This isn’t new news about who I am.  My anxiety has always manifested itself in this way.  After a break from college, thinking about going back would cause me anxiety…even when I had found my people and my niche, even when I enjoyed school immensely and knew I’d be okay.  Now, with my new business, the Pickle Shack … before every single event, I experience anxiety.  I am unsure if I will be able to handle the hustle and bustle of the day.  But once I’m in it – I rock it – and I gain confidence as the moments pass and I am able to handle them.

In so many ways, being in the trenches with Kiran’s medical needs was easier on me than the period we are in now.  This feels like such a bizarre period of limbo.  And we have had so many slower weeks – fewer medical appointments, time to just be a family….

Tomorrow is a big appointment day.  I can’t believe three months have already passed, and it is time to see cardiology again.  I am hopeful we can manage to keep Kiran still for his echo so we are able to get a good look at that heart of his.  I feel everything will look good, but I still have great anxiety it may not.

We will be meeting with a new GI doctor and a new nutritionist.  I am hopeful we will feel comfortable and confident with their knowledge – I am hopeful they will feel like a better fit to our medical team.

I have to gear up to be “that” mom – find my strength again to advocate, find my brain again to ask all the questions.  It’s been awhile since we’ve had these kinds of medical appointments.  That paired with finally starting feeding therapy on Thursday – this feels like a monumental week.

I honestly don’t feel ready for it.

I have been posting on facebook every day this month about congenital heart defects in order to raise awareness.  This morning, when I came across the topic for today (on the list I am following; there are others), it stopped me in my tracks.  I decided it was time to write my fears out – the ones I have been attempting to avoid since we got Kiran’s eye surgery date.

Funny thing about fear is it is often illogical.  In my case, it is really not based on any sort of reality or evidence.  Kiran has always done extremely well with anesthesia.  He comes out of it fine and recovers quickly.  He came out of the OR extubated after both cardiac caths and after his g-tube surgery.  He is a rockstar.  And this was all BEFORE his unifocalization and repair.

But for some reason, every time I think about this upcoming surgery (March 22, one month from yesterday), I feel the fear squeezing my chest.  I want to burst into tears.

It is amazing how often I feel like a two year old throwing a temper tantrum inside.  I want to stomp up and down and scream “I. Don’t. Want. To!”

I don’t.  I don’t want to.  I don’t want him to go under.  I don’t want to hand him off to a surgeon.  I don’t want to have to wring my hands and wait in a stupid hospital waiting room.

It’s a simple eye surgery.  Our cardiologist even signed off on the team using an experienced pediatric anesthesiologist (though the cardiac anesthesiology care team does know about the procedure and will be on hand if needed).  Even that makes me nervous.  And yes – I questioned it and advocated and got the answers to my questions and ultimately am sorta maybe kinda okay with it….

But they expect it to be an outpatient procedure.  No one anticipates any complications.  Kiran’s heart functions very close to normal – many people who now listen to his heart even say they would have no idea of his history by listening to it. (Well, if it wasn’t for that giant scar on his chest)

The entire reality points to everything going smoothly and being just fine.

And my mom brain just keeps thinking – We’ve come so far.  He has rocked recovery so many times.  He survived ten months of life on a heart that wasn’t working at full capacity.  He survived a day-long extensive open heart surgery.  He’s my fighter.  What if…..?  What if, after all of this, a simple eye surgery is what takes him down?  What if, after everything we have fought for and been through…. what if I lose him after all?

Over something so simple.  So silly.

No facts point to this.  Everything points to my son being amazing and doing what he always does.  He’s healthier and more stable now than he has been his entire life.

But I can’t shake the fear.

Things have been pretty quiet – pretty routine – pretty “normal” – at our house the last few weeks.  Regularly scheduled appointments and therapies have happened.  Some fun outings have happened.  Nothing too earth-shattering.

I did chat with Dr. R. about all Kiran’s upcoming procedures and tests that require sedation or anesthesia.  We seem to be on the same page as far as keeping it to a minimum as much as possible while making sure we are monitoring his heart closely.  Nothing as concrete as I would have liked – I don’t have a one year plan or anything, no map or guidelines, as usual – but I think we at least have a good outline of next steps.  March 1st is our next big appointment day, and we are hoping Kiran cooperates for an echo (These are often sedated at this age too – it never ends!).

I just got the call today that we have a slot and insurance approval (finally!) for feeding therapy at Childserve!!!  We will start March 2nd, and we have a slot right after our physical therapy there.  Thank goodness – one trip to Childserve every week is plenty – though we do love and appreciate our services there so far.

I wasn’t as excited about the phone call I got yesterday from Iowa City.  We have a date for Kiran’s eye surgery, and it is sooner than I expected.  March 22nd.  More on that as the time gets closer, but for now, please remember that date as we will again ask for your thoughts and prayers.  Eye surgery isn’t heart surgery…but it’s still surgery, and it’s still a hard thing to wrap my brain around.

For tonight, our date will be staying in.  Yummy snack foods, a walk, snuggles, early bedtime (for the K-man at least)….Nothing earth-shattering…just the way we like it.

I have been processing through something a lot in the last couple of weeks.  As I pondered what to do with Kiran’s baby stuff and outgrown clothing (do I pack it up to store, do I hand it down to someone who will save it and give it back, do I simply donate it), I was forced to examine this feeling I have had for some time now – one I never thought I would have.

Kiran is it for me.

Granted, I completely understand I may change my mind about this.  I completely understand I am not the sole decision maker in this (I suppose my husband has some say….)  I know that as the daily overwhelm becomes less, and Kiran’s needs become more manageable (or at least more “normal” for me, old hat let’s say….), I may find myself wanting to grow our family.

Honestly? I just don’t see it.

Do all moms feel this way about their firstborn?  I don’t know the answer to that.  Would I feel this way if Kiran was healthy?  I will never know that either.  I always thought I wanted multiple children, two at the very least.  But our family just feels … complete.

There are many, many logical reasons to not have more children.  But ultimately, for me, it comes down to this:

I am Kiran’s mom.  I just don’t feel like I’m anybody else’s mom.  I have examined this feeling a billion times over in the past several months.  Even if we were to lose him (I cannot ever shake this thought, it is always somewhere in my mind, nagging me), I don’t think I would have another child.  I’m just not anybody else’s mom.

I’m Kiran’s mom.

For our second appointment in Iowa City yesterday, we met with a nurse practitioner who focuses on the overall development of the child.  Her goal was to look at the big picture of Kiran’s life and make sure he is seeing all the specialists he needs to see and getting all the services he needs to be getting.  She mentioned that he is doing better than she expected.  For fine motor skills, she felt he was right where he should be at this age.  For social and talking and those types of skills, she felt he was in the 11-13 month range.  (He is 15 months old, today actually!)  He is farthest behind in the gross motor category – this is the rolling and crawling and sitting and standing – so not a surprise to me.  She placed him in about the 9 month range for these skills.  She did mention, much to my encouragement, that during the sick period, when these heart kids are waiting on their surgery, they do simply stop developing.  We saw it.  Kiran progressed pretty well for the first few months of his life, but as he got bigger and sicker, he didn’t make much progress.  I’m glad this is “normal”, because I sometimes have struggled with feeling like maybe I didn’t do enough to help him develop.  But then I think back on that time, and he really was using all his energy to just breathe and be alive.

She felt we are doing what we need to be doing for Kiran.  He is getting the services she would have recommended already, and her at home recommendations are all things we are already doing with him.  I did request she set us up with a GI doctor in Iowa City and a dietician.  She also asked if we would like to see dermatology just to establish a baseline for the birthmark on his leg, so it can be monitored for any changes.  I don’t think this is a bad idea, so we agreed to that as well.  It seems my hopes for fewer medical appointments would continue to be shattered yesterday.

Our third and final appointment of the day turned out to be the one we needed the most brainpower for – and of course, by that point, we were simply exhausted.  We met with the genetic eye doctor for a follow-up.  She was able to get a better look than she has ever gotten before.  Kiran’s optic nerve is small.  I am not sure I completely understood everything she was saying, but I guess when the optic nerve is small, oftentimes the pituitary gland is affected in some way.  An MRI continues to be something we will need to do in the near future.  Since it may be awhile before this happens (I will get to why in a moment), she is going to set us up with an appointment with an endocrinologist.  We would be specifically looking for growth hormone issues and another hormone that would affect how Kiran recovers from illness or anesthesia.  Those are the two big things involving the pituitary gland.

Again, that is only my very basic understanding, because my brain actually kinda shut down after hearing the next news.  Kiran needs eye surgery.  Way back when, I wrote about how he has pupillary membranes in his eye – specifically his right eye, which is also the eye with the small cataract.  These membranes generally break away at or shortly after birth, and for whatever reason, they didn’t.  They are affecting his vision in the right eye.  His right eye doesn’t dilate as much as his left.  If we don’t do surgery in the near future to remove the membranes, Kiran will start preferring his left eye.  This of course will affect his vision and how he processes visual stimuli, so it is obviously something we want to take care of soon.

Surgery is not something I was expecting to hear, and it is not what I wanted to hear.  Obviously.  I was already concerned about how many procedures and tests he needs to have done that involve either sedation (which I learned yesterday comes with its own risks and in some cases can be even more dangerous for heart kids) or anesthesia.  The good news is they should be able to coordinate the hearing test and eye exam while he is under for the eye surgery.  I will be writing an email to Dr. R, cardiologist, later today to outline a plan for all the other things coming up – and to make sure he feels Kiran is stable enough for this surgery.  I don’t think any other tests can be coordinated.  The lung perfusion scan is done in a room with a very large piece of specific equipment.  His cardiac cath will be done in the cath lab.  I have a feeling the MRI will be pushed out until after all of these other tests and procedures are done, so may not happen until next winter.  I am anxious to hear what Dr. R’s recommendations are as far as spacing all of these things out.  I need to get my head wrapped around a medical schedule for the next year.

It is overwhelming, but I am thankful to be overwhelmed today.

I am struggling today. For some reason, I woke up just dreading it.  I felt like a 2 year old, with this running through my mind:

I don’t want to. I don’t want to sit in the waiting rooms. I don’t want to explain Kiran’s medical history. I don’t want to go through the tests. I don’t want to potentially get bad news. I don’t want to have to take scary steps forward. I don’t want to.

I’m overwhelmed already, and we only have one appointment of three behind us. Here’s the new news:

I haven’t talked about Kiran’s hearing in awhile. It has been the least of my concerns, but we have been doing follow-up checks with the AEA in town. You may or may not remember, he didn’t pass his newborn screening or completely pass his first check afterwards.  He has passed two tests since.  I don’t have any huge concerns with his hearing, but obviously we want to keep an ear on it (see what I did there? I still have jokes). 

Today, we were told we have ruled out everything except minor hearing loss. She said though this doesn’t sound especially concerning, it is still something we would want to be aware of and could affect how we care for him moving forward. She wants us to have his hearing checked again in 2-3 months (I will wait 3, give him a chance to catch up more developmentally in all areas). We can do the recheck either here at the Center of Disabilities and Development (where we were today) or at the AEA as we have been. 

If the results are still questionable in three months, she said it will be time for us to strongly consider doing the sedated hearing test. Of course. My heart immediately goes into a panic when I hear that – and it would be general anesthesia (well, in his case, I am assuming with a cardiac anesthesiologist) going completely under. 

We got lucky with the first of three lung perfusion scans Kiran needs this year. As he is getting older and more active with his movements, I am willing to bet we may not be as lucky the next two times. Two possible sedations. We need to get an MRI scheduled and take a look at what is going on in his brain, not only for vision but for other information (I still have this sense this will give us some answers). And now, the hearing test. Not to mention he will have to go under for a cath in September to more thoroughly check on his heart function and mapcas post-surgery. 

Some of these can hopefully be coordinated, and I will fight like hell to make sure he only goes under as few times as absolutely necessary.  But it’s scary. Every time. And overwhelming. Every. Time. 

It is a phrase my family has used countless times, to signify what comes in the “after” during those times in our lives that distinctly separate it from the “before”.  I have written about this many times.  Finding out you are carrying a child with a complex congenital heart defect is certainly a time when your life becomes completely different in a moment.  And – I am finding – having your child go through a successful open heart surgery is another such moment.

For the first ten and a half months of Kiran’s life, I was on high alert.  He was on a pulse ox at night measuring his oxygen saturations, I was counting respiration rates and watching retractions, I was worrying and fretting over every little thing….There were numerous trips to the ER in his first months of life.  I got used to living this life of being on my toes.  I had hospital bags packed in the closet, ready to go.

And now?  I am trying to remember how to live outside of that constant panic.  I am struggling with what it means to be a mom when my first ten months of doing so was so different than the now.

Kiran has a cold.  He is stuffy.  But he’s not retracting when he breathes, and his saturations are on point (Yes, I still pull the pulse ox out to spot check when I have a concern, even though all the doctors have said stop using it.  Please.)  A year ago, we were just coming home after a week in the hospital due to a cold.  Granted, he was an unrepaired newborn at the time.  Still, I am finding myself having to alter my thinking.  Quiet the fight or flight response in me.  Realize that he is medically stable and doing really well.  Let him be a normal kid with a cold.

On the flip side of all of this, even as I am educating others about congenital heart disease being lifelong, I find myself in denial.  I find myself wanting to believe that it’s just over now, that we made it to the light at the end of the tunnel.  I know it’s not true.  I know there may be times I will have to go back to being the on-her-toes mom.  I know there will be other interventions, and there will always be more appointments.  But sometimes, I just like to…pretend?…that he’s cured.  That it’s over.  That we made it through the darkness.

And I am certainly in denial about moving forward with other appointments for Kiran’s other medical issues.  We drive to Iowa City tomorrow.  Kiran will have his hearing checked early Friday morning.  We will meet with a neonatologist to ensure we have all the services and specialists we need for him (since we moved cardiology to Iowa City, Dr. R. is wanting to make sure everything is covered for Kiran).  And then we see the genetic eye doctor again.  And – as terrified as I am – I am pretty sure we will be moving forward in setting up a brain MRI for Kiran.  It’s time.  If there are answers to our questions, we need to face them.

But I don’t want to.