Real fighters rock the pink pacis!

  

Kiran is out of the cath lab and doing well. We are still waiting to meet with the doctor and will have more news then for next steps. 

He is looking really good!  He is awake already and having a small tube feeding now.

Kiran continues to do well. Doctor is working on mapping out his blood vessels  which can be a long process. 

This pager system is the best!  I was starting to have a lot of anxiety again, and just reading those words: “Kiran continues to do very well.” was all I needed. 💙

Got a page that Kiran is doing great!  They have the catheter in place and are obtaining sats and pressures.  Should be getting another update soon. 

Kiran is officially in the cath lab. I am a giant ball of anxiety. That is all for now. 

I did sleep tonight, from approximately 10:30 to 1:30, when Kiran decided he wanted a bottle. Now, I cannot quiet my mind. 

I just don’t know how I will find the strength to hand him over into the doctor’s hands later today. I have heard such wonderful things about the cath lab doctor, but it’s not enough to quell my anxieties. 

Granted, everything is very likely to go smoothly today. (And then my brain says: “but what if it doesn’t?”)  

I know Kiran is loved. I know so many of you (ok, all of you taking the time to read this) are praying for him, sending him good thoughts, pulling for him. I will do my best today, through all my emotions, to keep the blog updated.

My sweet, sleepy little prince. Or, as his daddy calls him, “the King of tribes”  He is my heart. 

  

 

Two weeks from yesterday, we will be taking Kiran to Iowa City for a cardiac catheterization.  They will get pictures and pressures of his heart to essentially create a map for surgery.

In a lot of ways, I am ready for this step.  This will be what will inform the surgical team of which surgery is appropriate for him in the near future.  We will finally know if he will require the shunt or if his pulmonary arteries are big enough that they can do the “full repair” surgery.  We are, of course, hoping for the latter – One open heart surgery would be far more ideal than two.

In a lot of other ways, I am terrified of this step.  I know a lot of experienced heart moms will say things like “Oh, it’s just a cath” because they’ve already been through open heart surgery and multiple cath procedures…but for this first time, it doesn’t feel like “just” anything.  I know there are risks involved, and I worry about my baby.  And I also worry about the results.  We always hope for good news, but the possibility of rough news lurks.

Please remember our family on March 15th around noon (We are second case of the day in the cath lab).  Send prayers, good vibes, positive thoughts, love, encouragement…we need it all!

 

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.