I can’t ever bring myself to write when I find myself stuck in the dark.  I am realizing today that it is probably a time I should write, because it might be beneficial for people reading this to see my complete humanness.  I am not always strong.  I do not always see the bright side of things.

In fact, this past week, it has been incredibly, excruciatingly difficult to find the joy.

This is for so many reasons.  My brother would have turned 34 last Friday, the 19th.  A very beloved family friend died that day, and though I had the privilege of standing beside her hospital bed to say goodbye, it was difficult to not be able to go celebrate her life with all who loved her this weekend (We opted to stay home, because we really need to keep Kiran healthy – more on that in a future post).

Wrapped in and around all of those things, with all of the emotions they bring, we have continued struggling with Kiran’s health and his feedings.  It is so difficult to not know why he pulls away from the bottle when he has generally been a very good eater.  It seems we finally have him (mostly) over the viral thing he has had the past three weeks, but he is still fighting some feedings.

We decided two things yesterday morning before Arif left for the week: We would go ahead and start him on the acid reflux medicine to see if it makes a difference (We have had the prescription filled for about a week now but were reluctant to give him medicine when we aren’t positive that’s the issue), and we reinserted the NG tube (He had pulled it out on Thursday but feedings had gotten progressively more difficult with less volume intake).

Every time we go back to the NG tube (which has been quite the back-and-forth this past month), I find myself feeling simultaneously relieved and frustrated.  I wish he could tell us what it is that’s bothering him – it seems he is starting to develop an oral aversion due to something.  Sometimes it seems like it’s a tummy issue – possibly even just bad gas – other times, I think his mouth hurts (This kid has to be teething – hands in the mouth constantly, slobber all over his chin, red cheeks….) – and sometimes I do think it’s acid reflux.  Perhaps he’s just old enough now to associate whatever is going on with his food, and that is why the problem is surfacing now.  I don’t know.  I have spouted theories until I am blue in the face, and I feel completely helpless in this situation.  I am calling the doctor this morning to get a referral to a GI doctor so we can start getting some answers.

But then – that is hard too.  He already has so many appointments for so many medical issues, and now we have this to worry about.  Sometimes I just feel so weighted down by all of it, and I physically can’t make another phone call to another medical person to discuss another issue.  It overwhelms me, and I feel like I am drowning.

But the biggest day-to-day thing I struggle with, with the NG tube…I have so much anxiety around it.  I am getting a little bit better at managing it, now that I realize it may need to be a more permanent fixture in our daily lives, but I worry about it getting pulled out.  I feel like I don’t allow Kiran to play as much, I don’t hold him as close…I’m just so scared of the damn tube!  The good news is – see, I never write until I have the good news to counterbalance the struggle – since realizing this last week when the tube was out (as we were realizing it would likely need to go back in), I have been able to relax myself more this time around.

I still have days where I just hate all of the stuff he has to have connected to him.  Overnight is the worst: his foot brace, the pulse ox, now his ng tube….I am so jealous, sometimes, of people who just get to walk in and pick up their baby, with nothing attached to their little body.  Now that his brace is just 14 hours a day, I have grown to cherish the moments where I get to just play with him, hold him … and that is another reason why I struggle with the feeding tube.

It is so small in the grand scheme of things.  It really is.  And it is a huge blessing – feeding times were becoming stressful, and now I know he will get what he needs, either orally or via tube.  But sometimes the daily struggle is harder for me than the big picture stuff.

I work very hard at being strong for my family, and I work very hard at remaining as positive as I can possibly be.  But sometimes, I just can’t.  The advice I always give people is to allow yourself to feel however it is you feel.  I am trying to take that advice, but it’s hard.  When I struggle to find the joy, I feel like I am failing my family.  Kiran fights so hard and has been through so much – I just feel like he deserves so much more from me.

 

 

 

I feel like I am riding a never-ending roller coaster, and the thrill wore off long ago.

I started the day yesterday feeling confident and good about things in general.  We decided to take the NG tube out and see how Kiran would feed (it was time to place a new one anyway, and we always like to give him the opportunity to show us he no longer needs it)…I was able to more closely follow our nap schedule which means I was able to get through some laundry and dishes…I even managed a shower!

He took a few bottles really well and then had a complete meltdown when I tried to give him his 1:00ish bottle.  Of course, this was right before we had a meeting at the house with a design guy and in the middle of my husband’s busy work day.  We both tried to calm him and were unsuccessful so quickly placed a new tube.

And thus began my downward spiral.

For whatever reason – maybe because it was done so quickly, maybe because I just decided to have a bout of anxiety in that moment, maybe just because something seemed a bit off – I wasn’t confident about the ng tube placement.  I was sure it was in the stomach, but I had it in my head that it was too far down into the stomach.  It was measured further down than the one we had just had in that morning, so it just didn’t seem right.  This prompted me to contact my home health nurse to see if she could come check placement, which prompted her to share her concerns that Kiran still isn’t feeding well (not like him), which prompted me to continue my downward spiral into worry.

At this point, I just let go.  I just held him on the couch and had a good cry.

And then I decided to trust my gut.  I took the tube out.  I even threw it away.  (We have more, and we can place a new one if we need to; we haven’t needed to yet)  Kiran had a very huge burp very shortly after I took it out, and I had read (yes I googled – yes I know I should quit – no I can’t and won’t) that an ng tube can circle around in the tummy and trap air.  I’m going to go ahead and say I was right again, and I will continue to trust my nagging gut feelings on these things.

And this was all just one piece of the puzzle.  The feeding piece.  I still don’t have all the answers – He has been sick, and I agree he needed the support, but it does seem he should be able to feed orally now.  He seems to be having some tummy troubles, and putting gas drops in each bottle seems to be helping.  He has taken a good amount with 7 of his last 8 bottles, so maybe we won’t need the NG.  One bottle at a time.  I keep telling myself this.

Now for the bigger twists and turns.

I will be getting a call any day now to schedule Kiran’s cath in Iowa City.  This will be to take more accurate pictures of the heart for surgery planning purposes.  It is a necessary next step, and at some point, we have to take it.  In many ways, I am ready to just know what the step beyond will be.  I want to know if we can buy him some more time with a cath procedure, if we have to put the shunt in, or if we can feasibly do the full repair.  These questions will finally be answered once we get through the catheterization.  Still, it’s a lot to wrap my brain around.

And now today – a vision person came out to assess his visual skills.  Kiran scored a 2 out of 22, so this mama was right again (though I wish I wasn’t): He is behind visually.  Quite.  She was noticing, in more clinical language, some of the things I have been noticing: His eyes tend to turn to the right; he does have a quick shake when his eyes are turning; he can focus or fixate on an object briefly but then his eye muscles seem to make him turn; he is not able to track, though it seems he is trying to.  I haven’t let this really sink in yet.  I simply took action – I sent out an email to the eye doctors in Iowa City referred to me (in a roundabout way, thanks to my former boss) by the former chairman of the Eye Dept in Iowa City.  At least I know he will be seen by the best of the best.  I have no idea what any of this might mean, but it seems it will be another medical issue to put on our already overflowing plate.

In all of this, there is one thing that stuck with me from another heart mom’s blog.  It is essentially this: He’s still Kiran.  No matter the diagnosis, no matter the issues at hand, no matter how many challenges crop up or get named…He is Kiran.  He has always been Kiran.  The vision issues have been there.  He is still my baby boy.  He always was and always will be.  It doesn’t change who he is; it just gives us insight to help us move forward…to help him as best we can.

So.  The roller coaster plunges ahead.  Sometimes, I have to hold on for dear life to keep from being thrown from my seat.  But I’m still on this ride.

When I took Kiran to the ER a couple weeks ago due to my concerns, the ER Doctor said something that stuck with me: Eventually I would know Kiran better than any of the doctors or nurses. I would be able to tell them what his normal was and advocate for him, because I would know him so well. 

I’m maybe not fully there yet, but I am getting the hang of it.  I questioned our home health nurse this morning when she said she thought we should go to the ER. I wondered if maybe we could just go visit the doctor again. She was pretty certain, so I went with it. But I did question. 

And really, it is better safe than sorry with him. I know that. And I know he’s not himself. He is sick. But I also know he wasn’t in distress and was largely doing okay, holding his own. And it turns out, I was right in thinking so. 

But I do have the peace of mind knowing he’s been thoroughly checked out today. We do have another pacifier. And I did learn I need to count his respirations for a full minute at this age to get an accurate count. 

I’m glad I’ve learned to ask questions. I interrupted the doctor to ask what a medical term meant. I took my time and reached for questions when the RN was discharging us (this is how I learned how to properly count an infant’s respiration rate – I had been counting only to 30 seconds and doubling the number, but infants don’t breathe at a very steady pace so this is inaccurate).

And I spoke up when they were trying to decide where to stick him for an IV. Last time he had an IV put in (when we ended up being admitted), they tried his arm first and ended up having to stick him again to put it in his hand. So I told them that and saved Mr Kiran an extra poke. 

I am finding my way and earning the title Heart Mom. It’s still scary. I’m glad they sent us home, but he’s definitely not 100% and I’m watching him like a hawk. But I am finding my footing and feeling more confident in my knowledge of All Things Kiran. 

It seems every two weeks, we end up making a trip to the ER with the K man. Our home health nurse sent us this morning due to a high respiration rate and retraction, paired with the fact he hasn’t been eating normally the past few days. 

I had been watching him, of course, counting his respiration rate a lot. It has been high a few times but generally when worked up. I was hoping to avoid this scene, but will, of course, take the advice of our nurse who I trust immensely. 

On our way now, hoping they will simply say he has a cold again but is safe to care for him at home. I don’t think I’m ready for another picu stay….

I have been contemplating balance quite a bit this past week.  It really started last Saturday night.  Arif invited some friends from pool league over to cook and hang out.  It was difficult, at first, to balance tending to Kiran’s needs and socialize with everyone…but once I put Kiran to bed, I had a wonderful time!

I always said I wouldn’t be one of those moms that lost herself completely in the role of motherhood.  I learned during my first marriage that I cannot be swallowed up in one identifier.  I can’t be just Mother.  I am so much more than that.

But, as most mothers know, having a newborn doesn’t leave room for much else.  And added to that, having a newborn with all of the medical problems the K man has…well…forget about being anything but a mom, at least for awhile!

But last Saturday night offered me that glimpse into the parts of Holly I had forgotten about.  I forgot how much I needed to be a person, too.

So I set out to find a bit more balance this week.  Kiran is officially not a newborn, since he is in his third month of life.  And things have settled into enough of a rhythm around here, I decided it was time.  If I hadn’t gotten around to getting dressed or brushing my teeth before he woke up, I left him awake in his crib and did just that while talking to him.  I found the time to shower (almost) daily – sometimes very quickly because his nap ended up being nonexistent – other times, able to slowly enjoy while the husband hung out with him.  I asked my parents to babysit so Arif and I could have dinner out, something we hadn’t done in a few weeks due to life.

And – the big one – I started the process of finding a non-family babysitter for Kiran.  I decided my comfort level for this task was finding a nursing student.  It just so happens one of the students that came along on a home health nurse visit once is interested.  We have our first meeting/interview/try-out Wednesday this week.  I am nervous but also excited.  I know it will give me the opportunity to tend to the other parts of Holly I have been missing.

We always wanted to just cart our kid around.  By now, we thought we’d be toting him to restaurants and activities, friends’ houses and overnight trips.  Due to his medical fragility (remember the cold in January that landed us in the hospital for a week?), it just isn’t smart to take him out and expose him to germs when it’s unnecessary.  This means we are largely stuck in the house.  And it does get stifling.  I didn’t realize how much it was wearing on me until I had a taste of what I’ve been missing.

We also always said we wouldn’t be the parents to only use family for babysitting services.  Nothing at all against those who do – but we want the freedom to attend events and go out to dinners even if my parents aren’t available – and we want to go out with them every once in awhile!  Not to mention, we want Kiran to be exposed to other caregivers.  It’s a little bit more work, since I wouldn’t just hire anyone to care for him, but I think it’s worth it.

I love being Kiran’s mom.  It truly is a dream come to fruition.  There is nothing else I would rather be doing with my days and nights.  But I am realizing, for me, it is not healthy to lose myself inside that one identity.  I am so much more than just his mom, and he will benefit from me nurturing those other parts of me: wife, daughter, friend, reader of books, singer of songs, writer of thoughts.

Of course, finding balance isn’t always exciting.  This morning, balance meant getting out of bed after the 5 am bottle to handle the dishes and do laundry in peace.  And – let’s be honest – to indulge in the cold remains of last night’s bad choices (pepperoni pizza – can it really be bad when it tastes so good?)

Tired as I may be, after taking this time for myself, I will be a much better mom when he wakes up.

Surgery is imminent.

I knew it was coming.  I have known since we learned of his diagnosis, 22 weeks into what had been a normal pregnancy.  But nothing – not time, not knowledge, not reassurances from those who have been there – nothing prepares you for it.

How will I hand my sweet baby boy over to a surgeon?  How will my feet carry me from that room, when I will have no guarantee I will see him alive again?  How will I get through the hours of surgery, seized with anxiety and fear, pain only a parent can feel?

I don’t know.  And I still don’t know when I will find out the answers to these questions, for sure.  I just know that it is coming.  It could be in four weeks; it could be in three months…but the time is drawing nearer.

That is the biggest news we got in Iowa City last week.  We are monitoring Kiran even more closely, and if his desaturation spells get worse, we will be moving forward into the cath lab to start planning for surgery.  If he remains stable, they would like to see us get through the worst of cold and flu season before we put him in a hospital full of infections for an open heart surgery.

I want to bury my head in the sand.  I want to live in denial.  In some ways, even though my entire life revolves around my tiny man’s tiny heart, I was largely able to just not think about open heart surgery.  But when the cardiologist last week said “4-6 weeks” as a possible timeframe…Well, it got real.  I can’t hide from that.

And yet, I know how lucky we have been.  He didn’t need surgery in the first two weeks of his life, as we thought; we got to bring him home at one week old.  We have been able to enjoy him for the past three months, in our home.  We got to spend his first Thanksgiving, Christmas, and New Years with him in our home.  He takes his food orally – we have had bouts with the NG tube, but they have been relatively short-lived.  The cardiologist said since he’s had so much time to practice this skill, it is unlikely he will lose it.  We will just have to build his stamina for eating back up after surgery.  He has been able to grow so much bigger – over 11 pounds now – to prepare for this surgery, versus the 5 pounds 9 0z he was at birth.

We are lucky.

It’s funny that I truly feel lucky.  Because, actually, in many ways, we are unlucky.  Why couldn’t Kiran have been one of the 99 in 100 that doesn’t have a congenital heart defect?  Why couldn’t I have entered this wonderful world of motherhood without having to learn how to use a pulse ox or how to count his respiration rate or how to navigate the messy world of insurance or how to speak medical jargon?

But I can’t get lost in the whys.  And I have to hang on to that feeling, of being lucky, being blessed.  Because we are.  We have him.  He is strong and feisty, and oh so sweet.  He is everything I have dreamed of and so much more.  So, as I have said many times before – I’ll take it all.  If he is the son I get to raise, I will take all the medical challenges that come with him.  I wouldn’t give him up for anything.

And yet, I have to trust a surgeon with his life.

I’m not sure I can.  And I have no choice.