Kiran is 18 months old tomorrow.  A year and a half.  I can hardly believe it.

It has always been really hard for me to read people’s milestone lists – on facebook mostly – when their kid turns x months old, because it makes me sad how far behind Kiran really is developmentally.  For that reason, I have chosen not to ever list his accomplishments in that way.  But this time – this time, I think I will.  Because even though I am disheartened at times with where he is, I am also incredibly proud how far he has come.  This kid has been through far more than I have in my 33 years of life, and he has only lived 18 months.

So.  He is sitting for longer periods of time, but only when he is motivated to do so.  He is starting to more readily put weight on his feet.  He is tolerating hands and knees a lot more, and we are practicing a rocking motion with him to help encourage him to crawl.  He loves being upside down and lets us know he wants to do it often.

He gives high fives and is starting to understand the concept of waving.  His favorite is still clapping his hands, though, which he does all the time.  He loves to talk, but he isn’t forming any words yet.  But if you’re not paying close enough attention, his volume will go up until you are!  He is also getting more interested in toys (finally!), and his (or perhaps mommy’s) new favorite thing to do is play his little toy drum.  We are definitely noticing continued improvement in his vision as well.

He is still primarily fed through his g-tube, but he is making progress with his oral skills.  He is more willing to bring different things to his mouth, eats stage 3 purees with a spoon (and likes to do it himself, once spoon has food on it and is placed in his hand), and can eat puffs and cheerios now without gagging.  We are working on small sips from a sippy cup and trying to introduce straws.  We still have a long way to go with these skills, but we have seen great progress in the last couple months.  He has also become an expert in passing food or spoons from one hand to the other, especially when he doesn’t want to eat it!  AND – three teeth are coming in, all in a row on the top.  Better late than never.

There are milestones he will never hit – he still will not roll from his back to his stomach, because he hates being on his stomach.  This is common for heart babies who have had open heart surgery.  For this reason, he also may never crawl.  But there are plenty of milestones we have hit and will continue to work toward.

The reality of our situation stretches me.  I was a nanny for nine years.  I was the nanny that was all about pushing children to reach that next milestone and their greatest potential.  The one with all the ideas about how I would raise my own child.  All of that got thrown out the window, and sometimes – Quite frankly, sometimes I feel….like I’m failing because Kiran is so behind on these milestones.  I get frustrated – never with him, but with myself – that maybe I could have done more or should be doing more.  I struggle with this.  I don’t admit it out loud often (maybe ever)…but I constantly struggle with this internally.

But.  But.

Kiran is Kiran.  And he is right where he should be.  He is developing in his own time.  I firmly believe that.  And we know what he’s been through medically, and we also know we may not have all the answers of what the whole medical picture is with him.  So despite my struggle, we will keep doing what we do.  And he will keep adding skills at his pace.  And we will celebrate every single one of them.

Let me tell you a story, about a woman who swore her child(ren) would NEVER sleep in bed with her. A story about how having a child of your own changes your perspective, especially since that child is a special boy with a special heart (in more ways than one). 

Kiran still rarely comes into bed with us. But it’s not never. Arif especially likes bringing him into bed with us when he has a 4 or 5 am wake up and doesn’t want to fall back asleep. Turns out, I have to give his dad room to be dad, too. 

And I have been known to give in as well, for no good reason, though I tend to try a few more times to get him to fall back asleep in his own room. 

And then there are nights like last night. Kiran isn’t just getting one tooth in – two more were spotted poking through yesterday afternoon. And he is now letting me know that it hurts. At 1:45 in the morning. By 3 am, after Tylenol and teething toys and rocking and holding his hand and going into his room a half dozen times….I didn’t want to hear his pained cry again. I didn’t want him to be alone in it. And – let’s face it – I really wanted (I would argue needed) some sleep. 

I figure, moments like these, I have two choices. I can feel guilt, or I can treat myself with grace. I tend to do a little of both. I haven’t wandered off my parenting path in major ways – at least not when not having a good reason. I have written before about why my pacifier views had to change and my sleep training views as far as crying – both for very valid medical reasons. 

But Kiran sleeps well almost always. He knows how to fall asleep on his own, and he is in his own room most nights.  

So last night, at 3 am, he came into bed with me. And he was finally able to rest, knowing his mama was with him in the pain he was feeling. 

I will always struggle with guilt or grace. My comfortable response is always to feel guilty. To get down on myself. But it is always my goal, now, to give myself grace. Because being a mom isn’t always picnics and sunshine. And this journey has been difficult and emotional. 

Besides, Kiran is worth a change in perspective. 

It had become a joke. “He’s probably teething”. We thought it so many times, starting around 4 months old. 

Lately, it had become a worry. His 18 month appt is in three weeks. If he didn’t have a tooth by then, we would have been referred to a pediatric dentist to make sure he HAS teeth. I figured with everything else, he’d probably be one of those rare kids that was born without teeth. I already had a game plan….

And today, just moments ago, I was sure I felt a sharpness where before there was none. And sure enough….A TOOTH!  

Even looking back, he gave little indication he was even teething. I did notice he was really wanting to bite his sleeve this morning, but that’s about it. He’s just super easygoing. 

AND HE HAS A TOOTH!!!

Kiran had his one week post-op appointment yesterday with the eye surgeon. The doctor was quite pleased with the results, and we were told no more eye drops in the right eye!!!  Considering the hectic regimen of drops for the past week (3 in the morning, 2 three more times a day, ointment at night), this was welcome news!

For now, we are continuing the two dilating drops in the left eye. We will follow up in about a month to decide if it’s a good idea to take one or both of those drops away. It would be amazing to have Kiran off all meds for awhile!

Why am I awake at 11:30 pm when it has been a long, exhausting, emotional day?  Because I had to set an alarm for an hour ago to put an ointment in Kiran’s right eye, and then my brain switched on. I couldn’t possibly rest until I had fully wrapped my head around his eyedrops/ointment schedule and written down my questions for the eye doctor tomorrow.  We meet with him in 7 hours, because he was gracious enough to meet with us first thing so we can drive home in the morning. 

I was pretty ill yesterday. I was exhausted this morning. None of it mattered when the alarm went off at 4:40 am because it was go time. We had to be on the road by 5:30 this morning. None of it mattered when I had to answer a million questions and try to understand consent for scenarios I hadn’t allowed myself to imagine, all before my first sip of coffee because I wasn’t sure my stomach was ready to handle it yet. None of it mattered when I kissed my son and handed him over to the anesthesiologist one more time, trusting all would be well. And it certainly didn’t matter once he found his way back into my arms after a few drawn-out hours of waiting. 

I’d fight through anything to stand by my son’s side fighting for him. Some may say it’s the strength of a mother’s love – I say it’s all I can give, for this little lion of mine: He is far stronger than I will ever be. 

We heard a lot of possible scenarios going into eye surgery. I would say we came out with maybe one tier below best case….we are so thankful for this!

They were able to snip and pull back the pupillary membranes in his right eye that were blocking his vision. Once they did this, they determined it improved pupil size enough that they did not need to remove the small cataract. As long as it remains small, they will leave it be. Removing it today would have meant removing the lens – they had hoped it wasn’t adhering so strongly to his lens that it could just be lifted off – that wasn’t the case. 

We are thankful they opted to go with this conservative route. Had they removed the lens, it would have been likely they couldn’t implant a lens because Kiran’s eyes are so small (apparently yet another developmental thing – small eyes, right eye is even smaller than left). Without a lens, we would have had to put a contact lens in Kiran’s eye every day. Um. No thank you. Glad this was not our news. 

We have to try to keep Kiran from messing with his eye for about a week post-op. He is currently wearing an eye shield. We were sent home with the arm brace deals to hold his arms still if need be – we are thinking last resort on that. We also have a strict eye drop regimen for at least the next week. 

We were not warned but we have to follow up tomorrow with the eye doctor, so we just got to our hotel for the night. It is very good I am always prepared and packed an overnight bag just in case!  

Otherwise…we know he has small optic nerves on both sides. We know his vision isn’t the best but he doesn’t have a need for glasses at this point (I’m not sure I can really explain this so I won’t try). He is behind visually. They found astigmatism in both eyes, worse in his right eye. They don’t think they will need to do surgery on his left eye – it, too, has pupillary membranes but they are further out from the visual field so not affecting his sight. 

It was a lot. It’s been a long day. We are happy with the results. Kiran, as always, was a trooper. He didn’t cry at all going back (and we have never had to do a sedative), and he woke up calm and trying to hard to be happy.  I just love this kid. We are so lucky he’s ours. ❤

The vision exam and hearing exam are both done. Eye surgery is now in progress. 

This morning, we were put on our heels when the ENT informed us there was a possibility Kiran would need tubes in his ears. The only time we had heard of tubes was due to chronic ear infections. Kiran hasn’t had a single ear infection in his entire life.  However, apparently chronic fluid buildup in the ear is another reason they put tubes in. 

His last hearing test – he had fluid in his ears – so if they found fluid today (and if it was thick and goopy fluid), they would want to put tubes in. 

There’s the background. This is what caught us off guard (and made me cry, let’s be honest, even though I know tubes aren’t a big deal). 

Here’s what we found: His hearing is normal!  There was no fluid in the ears!  No tubes!  No need to follow up with hearing checks!

Such a relief for us all. 

They took Kiran back about 45 minutes ago. They booked the room for just under 4 hours, but we are hopeful it won’t take that long. 

We were taken aback with a few of the worst cases thrown at us this morning, but I will not waste my finger power typing them out until we know how the exams and surgery goes.

He is having a vision exam, a hearing exam, and surgery on his right eye. 

Please pray for best case scenarios all the way through. We appreciate the support you provide our family. 

I have been meaning to update. For weeks it seems. Since I have been ill today and we have surgery in Iowa City tomorrow, you just get the snapshots:

Remember that monumentally busy first week at the beginning of March?  It ended with Kiran graduating from home health nursing!  He received his last synagis shot that day and has been deemed stable enough to no longer need the nurse check-ups. This is huge and emotional. We have had – and loved – the same nurse from the day after we brought Kiran home from the hospital the first time. Aside from family and a few close friends, she has seen Kiran the most and knows him the best. How exciting to be graduating – yay, he’s healthy! – but how sad to say goodbye to someone who helped keep my sanity for so many months. 

We took our first plane trip as a family for fun March 10-15. We were able to visit friends in Seattle and had a wonderful time. It was so exciting to finally introduce him around!  We were also so thrilled to be able to take our family friend and babysitter along to introduce her to the city – and give us the freedom for nights out. 

I had such big plans for today. I worked hard yesterday getting the house ready and caught up for the week so I could really have a fun day with Kiran. He’s 17 months old today!  He goes in for eye surgery tomorrow. I wanted laughs and snuggles and books and just time with him. I always do, but today seemed important. 

Instead, I spent quality time being incredibly ill from about 2 am until 7 am – and the rest of the day weak and tired in bed, determined to not get Kiran sick and have to reschedule tomorrow. 

The plus?  It happened today and not tomorrow. I cannot imagine having to stay home and not be there for my baby boy. So. I will sleep, and we will have a very early start in the morning. 

I leave you with good moments from the last couple days – being introduced to the swings at the park. Finally. This mama has been waiting, and he did great!