One wonderful thing that came out of our Iowa city appointments Monday: We graduated to wearing the brace for only 14 hours a day – 12 at night and one 2 hr stretch in the middle of the day. 

It has been so much fun putting pants on this boy!  And he is getting so big!  He is now rolling from his back to his tummy sans brace, and he weighs 11 lbs, 5 1/2 oz!

   
    
 

I couldn’t even type the title of this post without my eyes filling up with tears.  The heart stuff is big and scary and looming, but my main fear and focus over the last month or so has been Kiran’s vision.

Surprised?  Yes.  I have held this one pretty close to the vest.  I’m not sure why, but I have been reluctant to be as transparent about this worry as I have been about all the others.  But this afternoon, as I lay next to Kiran trying to obtain some sort of visual reaction out of him, I feel like I am bursting with it all.  This always means it is time for me to write about it.

His vision wasn’t even on my radar for probably the first month and a half or so of his life.  I had so many other worries, and I knew a newborn’s vision wasn’t all that great.  I wasn’t seeing anything that concerned me – I wasn’t necessarily doing all that much to promote it either.  I hate that.  It gives me fodder to blame myself.  But how could I do anything?  So much of that first period of time, after bringing him home from the hospital, was about pure survival and not much else.  Hell, even now, three months into it, most days feel like that’s about all I can muster.  We are starting to find a rhythm, but I still don’t shower every day.

I don’t remember exactly when I started being concerned, but I started noticing he was maybe a bit behind with his vision a week or two before our two month appointment with the pediatrician.  So I brought it up to her.  She didn’t seem concerned about it at that point; in fact, she said if it still hadn’t improved by our four month appointment, she’d be happy to refer me to an eye doctor.

Anyone who knows me will find that laughable.  Like I would sit on a concern for two months like that!  I gave him two weeks.  I paid close attention to his vision.  I tried to get him to track objects.  We read books, looked at toys, looked at each other…I didn’t feel like he was reacting to any of it.  Sometimes, I would walk in to pick him up from nap, and I would bend over him without saying a word…I don’t feel like he knew I was there until I said something.  It broke my heart, over and over and over again.

I went back to the pediatrician, and she agreed we should get him checked out by an eye doctor.  Which we did.  Monday in Iowa City.  He found nothing structurally wrong that would affect Kiran’s vision.  He does have small pupils (something I noticed during that very studious two week time period), but that generally doesn’t affect vision.  His eyes also didn’t dilate with the drops as much as the doctor expected they would; he didn’t seem overly concerned about this either.  And he has pupillary membranes – these supply blood to the lens in utero and generally break away or dissolve at birth – for whatever reason, his didn’t.  Their placement, however – you guessed it – shouldn’t affect his vision.  Overall, he diagnosed Kiran as being developmentally behind.

That’s it.  He said keep doing what you are doing, give him good nutrition, and give him time.  Unless something drastic changes (and he gave us a couple things to watch out for), he wants to see us back in three months.  He didn’t see anything that made him want to do any brain imaging or anything like that.

I should be relieved.  But my gut tells me he’s not just behind.  I really feel there is something else going on.  Monday was too crazy busy, and I was overwhelmed as it was, so I didn’t push then.  I didn’t even really have a chance to wrap my head around the eye appt before we needed to be at our next appt.  I’m not sure what my plan moving forward is, but I doubt I am going to wait three months, unless I start seeing some improvement.

This whole thing is heartbreaking.  I honestly can’t talk about it without tearing up – maybe this is why I have told so few people about it.  It is gut-wrenching, feeling like your baby doesn’t see you.  It is so hard when he’s not as interactive as you imagined he would be at this age – He’s not very interested in toys (because, truly, I feel he doesn’t see them or at least doesn’t see them well), he’s not giving us real smiles (how would he know to do so?), and he doesn’t gaze lovingly into our faces.

Of course, I want to see improvement yesterday … and perhaps I should be patient and give him time.  The one thing that does make sense to me: This kid sleeps a lot.  Due to how hard he works with his heart condition just being alive, he sleeps more than a normal three month old.  I would know – Most of my nanny jobs started with a three month old.  If he’s sleeping, he’s obviously not using his eyes.  So he isn’t getting much practice.  It does make sense that he would be behind.

I would love for that to be true.  Especially since the doctor didn’t find anything structurally wrong with his eyes – if there is something more going on, it would be something going on in his brain.  And that – well – that is something I don’t even want to fathom right now (though I think about it every day).

I just feel like Kiran can’t catch a break.  I feel like I can’t catch a break.  I am not sure how many more big things we can handle over here.  This one feels as big as the heart – maybe bigger – especially if it might be a neurological issue.

But more than anything – if I take out the what ifs, the unknowns that lie ahead – this is just an emotionally difficult issue.  Whatever is going on with his vision, it is affecting us as a family.  It’s affecting our interactions with him, it is breaking this mama’s heart, and it just feels so huge and scary right now.

 

 

I have been fluctuating all day on whether I should be patting myself on the back or feeling embarrassed.  

Kiran had a rough night last night. Possibly the most alarms we have ever had in one night on the pulse ox. This means his oxygen saturation levels were dipping below 65. As has always been the case (other than watching him turn blue in the hospital a week ago), he had no concerning symptoms. He slept through most of the alarms – his mom, on the other hand, did not (his dad had some trouble, too, but his mom continues to be amazed at how many he can sleep through). 

This morning, I was trying to figure out what I should do. He was still dipping, even after being awake. His respiration rate was high (I counted 84 while relaxed). I was seeing the tracheal tugging that indicates he’s working hard to breathe. All of those factors together (plus his recent hospital stay and not quite being over his cold) ultimately led me to the ER for him to get checked out. 

It was like taking a car to the mechanic. 

His levels were perfect. His lungs, clear. His respiration rate, beautiful. Heart rate, normal. His throat looked good, his ears looked good, his heart sounded like his heart should. They monitored us for a little while, chalked it up to a possible reflux issue or monitor issue (sometimes I really hate that machine), and sent us on our way. 

They were encouraging. The doctor said we will likely be in and out of the ER, doctor’s offices, etc, until we really feel confident and know him… And then we will know him better than the doctors, and they will rely on us for information. The nurse said she would have brought him in, too. I felt validated, vindicated. 

But also foolish. Maybe I should have just called cardiology and talked it through. Or called and had the weekend home health nurse drop by and look at him.  I should have remembered to move the pulse ox to the other hand or to his foot to see if it would read differently. 

Then again, had it been something….

The nurse did see the tracheal tugging, while his sats were at 88. She said it is likely a heart issue, not a respiratory one, and it may just be his new baseline. 

Great. I was just learning his baseline, and of course, as he grows, it changes. 

I have to say, though: I made it three whole months before taking him to the ER (other than when specifically told to take him). I think, given my anxiety levels, that is a huge win. And it was because I was seeing the signs I was told to watch for: I do think I ultimately made the best decision I could in that moment. I was worried. It was not normal for him. I was sleep-deprived. 

But it’s a little embarrassing they already know me. The lady at the front desk of the ER said: “Weren’t you here a couple weeks ago?”  

Yes. Yes, I was. 

Welcome to the life of a Heart Mom.  

I’m convinced I can’t be the only one to have ever done this. So. I’ll own it. I took my son to the ER. I probably didn’t need to. I probably should’ve listened to my levelheaded (often too relaxed, in my opinion) husband. I probably should have/could have taken numerous other courses of action. But I’m still learning, and I had legitimate concerns. So I am trying to give myself the same level of grace I would easily give others. 

We brought Kiran home from the hospital early Sunday afternoon, but not before I had the opportunity to see what it looks like when his lips turn blue!  Two nurses were in the room, checking him over, and I saw his face turn ashen and his lips turn blue. His saturation levels dipped into the 40’s. I was panicked and saying – he’s blue – his lips are blue! – as the nurses calmly watched him. 

It felt like a year, but I am sure it was just ten seconds – and then we heard him fill his pants. His color came back, his saturation level popped back up … His mom’s heart slowed. 

It was terrifying, but I am glad it happened when and where it did. I am glad I am now confident I will KNOW when his lips are blue (I was constantly questioning it, but it is clear when it happens). And it hasn’t happened again, like that, since we have been home. Whew. 

We did come home with an NG tube, and we were faithfully doing our thing with it – Kiran had other plans. First of all, it became difficult to follow his cues, because we were dumping in the full amount every time. He was having tummy issues. He had a huge fit on Sunday night. He had had a few in the hospital, right around the same time – his new witching hour – but he was inconsolable. He got his hands free and very deliberately yanked the tube out of his nose. 

We were able to calm him after that. We decided to give him a break. Sure, he’d only been taking in 20-40 ml by mouth each bottle with the tube in, but maybe he’s telling us something. He immediately started taking in 55-75 ml per bottle. Less than his normal amount (around 90 ml), but he was making up for most of it with added frequency. 

We gave him the last couple of days, this mama watching his intake like a hawk, to take in what he could. He made it within 50-75 ml of his normal daily intake. Both the pediatrician and cardiologist felt it was enough and we should let him be.  Sure enough, it seems we are heading back to normal. His last four bottles have been 90 ml by mouth!  Kiran knows what he wants!

Through this whole process with the NG tube, I have been worried. For whatever reason, the feeding stuff causes me more stress than about anything else. Maybe because I can (kinda) control it – though not really – have you ever tried to force a baby to eat by mouth?  Still, it seems more within my control than any of his other medical things. 

So I worried. I worried when it was in – he’s not used to being forced to eat 90 ml every 3 hours – he’s been on his own schedule for the past couple months. I worried about his tummy. I worried the whole time it was in that he would pull it out. I have so much anxiety around that, because it is so traumatizing (for me, more so than him) to put it back in. And, of course, when he pulled it out, I worried about his intake. Would he lose weight?  Would he get dehydrated?  Would the doctors disagree with our strategy – would we have to fight for him?

Ultimately, Kiran is teaching me to trust him. I quieted my fears over the last couple of days. I fed him more often, I made sure he took in enough to not be dehydrated (he always took in way more than enough)…I allowed him to be a normal sick kid. Maybe he lost an ounce or two. I haven’t checked. But he has been calmer without the NG. And he is getting back to his normal, all on his own, on day three. 

In the last two days, his pediatrician saw him, a home health nurse saw him (though our regular nurse is on vacation), and his cardiologist in town saw him. Everyone said he is looking good. Lungs are clear, no fever, just still working to get over the stuffiness and cough. 

Our cardiologist was impressed how quickly he bounced back from this viral infection. He feels it was a test Kiran passed. It shows him that he is still strong; we are not at surgery time just yet. In fact, he said he feels we likely have a few more months before he will need surgery. Obviously this could change, but it was so good to hear that! 

It has been exhausting and overwhelming the last few days at home. I have basically gotten nothing done aside from caring for Kiran. I have barely taken care of myself (I know, I know, but as any mom will tell you, when your sick baby needs you….)

But after a Facebook venting – and after my mom came over and cleared out my dishes and Kiran finally napped in his crib for a bit so I could power fold laundry – I feel a lot more in control. It is unfortunate that the state of my house really does mess with my psychological well-being. 

Regardless, I do realize how lucky I am. I have a house to get messy. I have food to eat to make dishes dirty. I have clothes to wear to contribute to giant piles on the floor. And I have this baby to snuggle, forcing me to smartly prioritize and let the house be a disaster for a bit. 

We are home!  More later….

THANK YOU!

Kiran is doing very well. He has been off oxygen support for almost 24 hours, and his numbers have been looking good.  We are going to try and see if we can get his feedings back to baseline (so taking full amounts by mouth and not needing NG tube) … Either way, sounds like we will be busting out of here tomorrow!

For the time being, Kiran has been successfully weaned from all oxygen. They turned it off at about 10:15 this morning. He is looking good with saturation so far; their only concern is when he is not resting and calm, he is working incredibly hard to breathe. There is no guarantee we won’t need to go back on the vapotherm today. 

We were reintroduced to the fact that when he is working hard to feed, we need to make sure he doesn’t get overstimulated.  So I got the opportunity to find some strength during rounds and let them know when we are feeding, we don’t want anyone coming in. He had a very fussy episode that was hard to calm him down from when his 9:00 feeding became a bit too busy with people wanting to come talk to us. 

I am trying to just prepare myself for whatever today will bring. Right now, it feels very promising, and like we may get out of here this weekend. But I also know he may show us he’s not ready to not have oxygen support, and we may be here longer.  Some babies need support for a couple weeks with rhinovirus. At least we almost have one week behind us, if that becomes the case for the K man. 

I still can’t say thank you enough, though I have been trying, to all of you who have reached out with encouraging words, spoken prayers on our behalf, brought us food, and done many other acts of kindness that mean so much to us right now. 

We are lucky. When it all boils down, that is my truth.  We are so lucky to have Kiran. He is the greatest little dude I have ever known, and he is such a fighter. Thank you for being on this journey with us. 

They started aggressively weaning Kiran from the vapotherm this morning. (Vapotherm = humidified air). He started the morning at 6 liters per minute and is currently at 2 and doing really well. The plan was to drop it by one every 4 hours, but because he has done so well, they have been dropping it much faster. At 9, they plan to put in just a regular oxygen cannula, which is our last stepping stone to being without oxygen support entirely. 

Once we are off the vapotherm, we no longer need to be in the PICU. In fact, the vapotherm is really the only thing that kept us here today – it’s hospital policy that the treatment is only done in the PICU.  So we will either move to a regular pediatric room tomorrow or they will let us stay put and just give us regular pediatric care here. 

We were able to start trying oral feeds today, but he has tired out pretty quickly with them so most of his feedings have still been by NG. This is okay – he is hungry and does take to the bottle very well for a solid 5-10 minutes – he just gets worn out because he’s still sick. I am confident we will get back to where we were with this. 

If all goes according to how today went, we may be home by Saturday!  

We have had a much quieter day today. The doctors decided it was best to just let Kiran be today and recover for a solid 24 hours. 

So – we have done no oxygen weaning today, and he has done all of his feedings by NG. 

Arif wasn’t able to secure a flight home today, but he was able to get a flight tomorrow morning. This means he will be home with us midday tomorrow instead of late at night. I am truly thankful for this change in plans. 

Thank you to everyone sending up prayers and good thoughts for us and to everyone sending encouragement and food our way. It is all greatly appreciated!