I feel like I was blind-sided at the GI doctor’s office today, and I feel foolish because I should have been prepared for this conversation.  I just had no idea we were already at this point.  We discussed putting a g-tube in.

Kiran uses his NG tube at every feeding.  It has been weeks since he has taken the entire volume he needs by mouth.  More and more lately, he has been refusing entire bottles, and we have to put it all down the tube for him to get the nourishment he needs.  It has been a hard process to experience, but we are developing a new rhythm to our feedings.

In some ways, the NG tube has become more stressful.  We have figured out good taping tricks, so he hasn’t yanked it out of his nose in awhile (thank goodness!) but we have had other drama with the whole thing (I am fairly certain I blogged about our ER visit a couple weeks ago, the nurse’s inability to confirm placement, and maybe even the fact he has a long torso so doesn’t measure normally to know how far the tube needs to go in).  Every time we have to switch the tube out or even re-tape, it’s a VERY emotional experience because Kiran gets VERY mad about the whole thing.  It’s tough for me, as a mama, to have to help with it – and I’m never the one actually putting the tube down!

But it’s also gotten easier in some ways.  We have learned two ways to check placement and are pretty comfortable doing so.  We have our little stations rigged up on his crib and high chair so we can gravity-feed without having to hold the tube (This works well, because I can read to him, sing to him, get dishes done, etc while he’s finishing a feed!)  It’s just become our new normal, stressful and time-consuming as it can be.

And now another curve ball that I really should have anticipated.  A g-tube is a feeding tube that is surgically placed directly into the stomach; it would be a little button on his belly, basically.  It is a more long-term, sustainable solution to feeding issues.  It has a lot of positives from what I am gathering, both from the GI doc and surgeon and the heart moms in my support group.  It makes sense to me.  It seems like a logical next step for him to continue getting the nutrition he needs to grow strong and healthy.

But man.  Is it overwhelming!  Another change.  More decisions to make.  More medical stuff to learn and manage on a daily basis.  I know this will be the trajectory of his life, but sometimes I wish…well, I wish a lot of things, I suppose.

He’s a trooper.  He’s giving it his all, and he is one tough kid.  We will do what it takes; we will make the best decision we possibly can for his well-being.  It’s just so hard watching him actually get sicker and need more support…it’s all so real now.

Ask anyone. I have never been good at balance. Once I’m in, I’m all in. Once I make up my mind, there’s no going back. I don’t do anything halfway. 

This also means I have a tendency to lose myself in things. Currently, I continue to struggle with losing myself inside the identity of mom. Being a mom is so many things, and Kiran’s needs are great, so I often feel I have no time or energy left apart from this piece of my life. He is my life. 

These last few weeks have been a deep, dark struggle for me. There have been so many moments when I feel like I just can’t do it anymore. I feel alone. I feel scared. I feel lost. 

If I’m raw and honest with myself, there have been many moments when I have just wanted to run away from it all. 

I would never. 

But the fact I am feeling that way is making me realize some things need to change. It is no longer a want – to take time away for myself – it is a necessity. I cannot be whole without it. I cannot be a good mom to Kiran without it.  I have to make time, regularly, for myself. 

I have to continue to get comfortable with reaching out to my support system when I need help or encouragement. (I need help and encouragement most days.)  I need to continue to nurture and grow my team, because I know I can’t do this without them. 

I need to continue to find my voice and use it. Not just with medical people or asking for help, but with my husband too.   

And I am starting some soul-searching.  That is perhaps the scariest piece for me, but it’s far scarier to remain stagnant in the dark I’ve been in the past few weeks. 

I can’t stop crying this morning.  Sometimes, it all just overwhelms me.  My baby boy needs open heart surgery.  I see it, more and more: He is so tired lately.  He is basically sleeping like a newborn again.  What once would have elicited joy now inspires panic: His sats were at 93 this morning when I walked into his room.  This means the pressure in his collaterals are too high.  Or perhaps his body is compensating by creating more.  Either way, it either bumps up the timeline for surgery or makes the surgery more complex.  He’s on heart medication now.  That just makes it so real to me.

I want to bury my head in the sand.

I know he can survive this.  He might.  It will be a long and exhausting journey, but it will be precious and fulfilling, and we will be a family.

But lately, I can’t shake the thought of losing him.  Arif picked out a goodnight song we have been playing for him every night before bed: Goodnight, Sweetheart, Goodnight.  And I try to not let my brain go there, but I always picture this as being the song we play when we say our final goodbye, if it comes to that.

I will not survive losing my son.

I don’t think I could ever do it again.  If I don’t get to be his mom, I don’t think I will be a mom.  And if I’m not a mom, I have absolutely no idea who I am.

I would love to tie this all up into a neat and tidy bow and put my usual positive spin on it, but I am all out of ribbon today.

 

It is amazing how going to see the cardiologist had become such a benign part of our routine with Kiran.  For so long, it was all the same information: he’s still doing ok, let’s keep watch, he can grow bigger before we need to intervene. We always knew the story was going to unfold, but we were really enjoying that chapter. 

Now, we have flipped the page. Our cardiologist decided it was time to start Kiran on his first heart medication. The decision was made based on the fact we have been seeing higher oxygen saturations lately (Counterintuitively, this is not a good thing, given his anatomy. We suspected as much. It likely means some of his pressures in his collaterals are too high.), and he has been having the continued problems with high respiratory rate/ retractions. 

So, tomorrow morning, we start him on Lasix. This should help lower some of the pressures and pull fluid away from the lungs. Here’s hoping we see a change. 

Of course, we also discussed surgery and Stanford. And even though I know it and live with the knowledge every single day, my heart still drops anytime I hear our cardiologist refer to Kiran’s condition as complex. 

So much of me is not ready to have to start this chapter of our story: the surgery chapter. It will be a long one. A difficult one. A terrifying one.  And a completely necessary part of his story. 

We were at the ER this afternoon due to Kiran having a very high respiration rate and deeper than normal retractions. After being sent to the doctor yesterday by our home health nurse for the same thing – and it being an even worse episode – I figured I better call the doctor to see what our plan of attack should be.
I made it very clear to Kiran this is a wonderful record that we NEVER need to break. Two times to the ER in one week. Crazy.

They sent us home. Thank goodness. His heart looked good and his oxygen saturation remained good through all of it. He seems to have somehow caught another virus (poor kid – we never take him anywhere and he still gets sick). No signs of infection – lungs are clear – so all the horrible things it could be it’s not. 

We were told to just be diligent with his care (as we always are, of course) and that it’s better for us to get him through it at home if we can than have him be admitted, (um, yeah!) because we don’t want him to catch anything worse. 

Here is hoping we can get him through this without needing to go back.  

This has been a week. I am hoping next week will be much quieter and calmer, for all our sakes. 

  

I got a bit smug over the weekend. I thought “We’ve got this.”  I was sure we could figure out Kiran’s feeding issues without needing to put the NG tube back in. He gave us three good days. I tried a faster flowing nipple, we started using new gas drops that actually help him burp (he has never been a good burper!)…I thought we were on the road to success!  

Monday morning, his first two bottles of the day went really well!  I thought we had broken the curse….and then he started flat out refusing to feed. I tried every trick I know. I even offered him a bottle of just breastmilk (not fortified, no formula mixed in)…but, from 12:30 on, he ate nothing. 

You cannot force an infant to eat. 

I know this. I’ve lived it so many times. So why does it still feel like a failure, somehow, that I can’t figure out this new puzzle he is throwing our way?

By 6 pm, when he completely refused yet again, I knew I needed to do something for him. Our GI doctor’s nurse, who I talked to earlier in the day, had told me it was ok for him to have a bad day. But this was a hunger strike!  I knew he had to fast for three hours this morning before our appointment (stomach ultrasound and upper GI, to try to figure out the feeding mystery)…I was fairly sure he shouldn’t go almost 24 hours with no food!

Our wonderful home health nurse happens to be the nurse on call on Monday nights. She called and spoke with our GI Doctor (who also happens to be the one on call on Mondays) – They were in agreement with me: the NG tube had to go back in. 

Sigh. 

Backstory: the reason we even had the tube out over the weekend was because we had a heckuva time getting it in on Friday, and our home health nurse wasn’t able to confidently verify placement. We ended up taking it out and decided to give him a break – he started feeding well orally – we were riding it out again, hoping we’d have a breakthrough. 

Well, our home health nurse came to put the tube in last night and again, she couldn’t verify placement. We tried taking it out a little, pushing it in a little – we just couldn’t problem-solve what was going on. And of course you never put food down an NG unless you know for sure it’s in the stomach – it can go in the lungs and this would be very dangerous. 

So, last night, around 8 pm, we were once again headed to the ER so we could verify placement via x-ray. The poor dude had to have that tube put in three times before we got it right. And we got home about 11 pm last night, just to turn around and be back downtown for our appt this morning at 7 am. 

And of course, Kiran didn’t cooperate. He wouldn’t take the contrast fluid by mouth, so I’m not sure how much information we really got from the upper gi.  

Let me be clear: Ultimately, I am so thrilled Kiran is stubborn and a fighter. But sometimes, it is our curse. 

So we continue forward trying to solve this mystery.  I am starting him on a gentler formula to see if that helps with some of his gassiness. I don’t pretend to know what else to do. I have racked my brain for the past month trying to think of anything and everything that could be making him refuse feeds. 

I have to realize: I am not a doctor. This one might just be beyond me. I’m trying to let it go. I don’t want it to consume our days. 

Whenever I think about Kiran’s open heart surgery – his first, as we now know with greater certainty – my stomach completely drops, I feel ill, my heart races, my eyes fill….

And yet, we are so lucky we have been given the gift of a very clear path on which to walk.  There is no doubt Dr. Hanley is the right surgeon for Kiran’s heart.  He is the man who pioneered the surgery – called unifocalization – that Kiran requires.  He is the best.  People have come from other countries to have him operate.  And Tuesday was not the first time we had heard his name.

No matter the outcome, we will always know we gave Kiran the very best chance we could possibly give him.  So even though it is scary, to be told we need to travel to a top surgeon due to the complexity of Kiran’s heart; it is also comforting, knowing he will be in the best hands.

Now that we know our path, I both want a surgery date and don’t want one.  I wish we could push it off another year, and I wish it could happen tomorrow.  I have such conflicting feelings around it, because I can’t predict how things will go.

Here is what I know and what I will keep saying: Kiran is a tough fighter, and Dr. Hanley is the absolute best surgeon for him.  These truths, along with all of the support we have from all of you, are what give me hope in the midst of all the fear.

Kiran is doing beautifully. It looks like we will be discharged tonight, in fact.  They are encouraging us to get out of the hospital to limit his exposure to all the germs. 

The information from the cath was both expected and unexpected. Mr Kiran is a very complex case because he has so many MAPCAs that are abnormally formed.  Some pressures are good. Some are high. A lot of it was hard for me to follow after such a long, emotional day. 

We were told, in no uncertain terms, that we need to go to the best surgeon who handles these specific complex cases. In order to give Kiran his best chance, we will be traveling to Stanford. His surgical repairs (we were told 3-5 surgeries over his lifetime) will be done by Dr. Frank Hanley. 

Thank you to everyone who thought of us today. We are so lucky to have so many people on our team. We continue to need you all.