Kiran has made some pretty remarkable progress in the last three weeks. This intensive physical therapy is no joke, and he continues to amaze me every week. 

After one week in the cage, he started holding himself up in the hands and knees position. For 30-40 seconds at a time (sometimes). This is incredible, because it is not something he has ever done before. He doesn’t like being in that position – or any position stomach-down – and works to get OUT of that position as quickly as possible. But now – he tolerates it. He is strong enough to hold himself up. 

After the second week in the cage, the length of time he will stand at the couch has increased immensely. Five seconds used to be good. And – I’m no good at remembering to time usually, much to the dismay of Kiran’s physical therapist – but I swear he will stand up for a minute at least!  (Again, sometimes. An enticing toy and non-tired boy have to be present for it to work).  

And the last session of our third week in the cage, the PT reduced the amount of assistance he was given during the standing portion of his therapy. And he rocked it. 

I am so thrilled we were given this opportunity for this therapy. It is such a fun and interesting session to be a part of (thank goodness, since it starts at 8 am 3 mornings a week!), and the progress just brings tears to my eyes. I couldn’t be more proud of how hard Kiran works and how much he is learning. 

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It has been a long time since I have had anxiety and fear grip my heart as it pertains to Kiran’s health.  A sweet, long, precious time.  Early afternoon on Thursday, after giving him his bath, I noticed a change in his chest.  The right side was protruding out more than normal.  Now, I had to question myself – I feel, post-op, his chest has always looked a bit uneven.  But this seemed new.

I ran through the routine.  Looked, felt, made sure it wasn’t causing him pain, watched for retractions with his breathing….all the oldies but goodies that used to be part of our daily life.  Then we brought Dad into the picture.  He, too, saw what I saw.  He got out the stethoscope while I called our beloved nurse at the pediatrician’s office.

Since Kiran had no other symptoms, she felt it was likely just due to growth.  However, given Kiran’s medical history, she felt like we should let our beloved pediatrician lay eyes on him (Can I just say – this really helps this anxious mama’s heart.  Yes, please, I’d like the pediatrician to have a look.  Thank you very much.)

So, first thing Friday morning, we went to the pediatrician’s office.  Everything looked and sounded good.  She ordered a chest x-ray to make sure we weren’t missing anything.  Everything looked good there too.  So, I emailed our cardiologist.

In hindsight, given our (also beloved) cardiologist is so great at getting back to me via email and is never (or at least never acts) frustrated or impatient with my questions, I probably should have just emailed him on Thursday afternoon.  It is silly to not want to “bother” him with it until I follow a protocol I have made up myself.  Because, really, when it comes to heart babies and their chests, he’s the expert.

So, I emailed him on Friday, late afternoon.  When I hadn’t heard by the end of the day Friday, I figured I wouldn’t hear back until Monday.  But, Saturday morning (Did I mention how beloved every member of Kiran’s medical team is!?!), I got a response.  I sent pictures and got another response within a half hour.  Everything looks great, and it is just how Kiran’s chest is growing.  It is common, especially for MAPCAs babies – as the right side of his heart grows, his chest is going to grow to make space for it.  It’s called “asymmetric chest wall growth”.

I will say this, in the spirit of total honesty.  We had to make a decision on Friday about whether Arif would get on a plane and head to Seattle for a planned trip.  Considering we were all pretty confident it was nothing urgent (but at that time still didn’t know what it was), of course I encouraged him to go.  Friday night, when I still didn’t have answers and Arif and my parents were all out of town, I had a bit of a breakdown once Kiran was in bed.  As I said, it has been a long time since I have even had a concern about him.  And not knowing – and being the only one – it’s a lot of pressure sometimes.  Knowing you have to be the watchful one, and you have to make the right decisions for your child.  A lot of pressure.

Anyway, that crisis averted, we celebrate his life of 22 months today!  22 months old.  I still can’t quite wrap my head around all of it.  It has been quite the little life he’s lived, and he has changed mine – and still is all the time – in ways I never anticipated.

He decided to do something really incredible today.  As I said, we started an intensive physical therapy program last week.  It’s really cool to watch, and Kiran seems to enjoy it.  He is doing so well!  Today, I decided to put him on hands and knees and see how he’d do.  HE HELD HIMSELF UP WITH NO SUPPORT.  Three times (and then I stopped because he was getting tired and it was snack time).  I timed it once, and he held himself up for 40 seconds!  This is a kid who has always needed support to stay up in that position.  This is a kid that has always immediately dropped down and tried to roll over onto his back.  This is a kid who HATES hands and knees or anything in the tummy down position.  I still can’t believe it.  My heart is bursting.

He is absolutely accomplishing things in Kiran time, but I am going to celebrate when each and every time comes.  I am so proud of him, and I am even more excited about the progress he is going to make with this therapy.

Every fear that has gripped my heart.  Every tear that has fallen from my eyes.  Every night lying awake in the wee hours, ignoring all logic and consulting Dr. Google.  It’s all worth it.  He’s tough, and he’s getting somewhere.  And I get front row seats.  I’d buy that ticket every time.

Today is a big day in the life of Kiran.  It is a day his dad and I have been anticipating for months now.  Today is the day he starts The Cage or Universal Exercise Unit.  This is an intensive physical therapy program.  It will be three days a week, for an hour every day, for the next eight weeks.  He will be working with his regular physical therapist at Childserve.

I would like to say I am cautiously optimistic about the outcomes of this program….but the truth is, I’m super excited.  The last heart kid that did this program with her improved dramatically in strength and mobility, and, even though he was older than Kiran, I am hopeful Kiran will see some similar strides in ability.

Our goals include an overall increase in strength, increase in his sitting stamina, increased willingness to stand (and perhaps desire to pull himself to standing position), and some sort of self-mobility emerging (rolling or crawling most likely; walking would be incredible).  No matter what, it will help him improve.

It is a huge time commitment, and it is a commitment to getting out of the house by 7:30 a.m. three mornings in a row for eight weeks.  But I can’t wait to get started, and I can’t wait for what’s in store for my tough little man.

We made it through Kiran’s second dentist appointment yesterday morning (and first one with teeth)!  He didn’t mind them looking around in his mouth, but he wasn’t a big fan of how they brushed his teeth.  Arif and I try to make teeth-brushing as fun as possible and tend to get a lot of practice with patience when we do it at home.  With all of his oral/feeding aversions, we really strive to make all of his mouth experiences pleasant.  This means we play with toothbrushes a lot during the day and have learned several tricks to get him on board.

But – everything looked good!  No cavities or concerns.  The dentist said she could tell where some of his other teeth will be coming in soon.  Considering how long I worried about him even HAVING teeth, this was all great to hear!

 

We are just leaving the hospital in Iowa City. We left home this morning at 6 am, and we should get back around 6 pm. Long day. 

Kiran’s heart is stable!  There isn’t much change from four months ago.  Dr R feels we are fine scheduling his cath in October. Since we will see him at that time, we didn’t make another clinic appt with him until JANUARY!  

In fact, other than the cath in October, we don’t go back for any other appointments until January!  

Also – we are coming home on No Meds!  I am beyond ecstatic about this, especially that he is doing fine without eye drops. 

Every other appointment was simple and went well. If we are going to have a long appointment day, we will certainly take one with this much good news any day!

One event today caused my heart to swell with pride and break with heartache, all at once. When the technician was setting Kiran up for his EKG, one of the little metal clips actually got placed pinching his skin (trust me – this would hurt pretty badly). I happened to be watching Kiran’s face, and he kinda flinched a little – enough that I noticed something was wrong and started investigating – but went back to his stoic, calm face very quickly. 

I noticed it and the problem got corrected right away, but still. He didn’t scream or cry or fuss. In fact, he had a very brief pained facial reaction and then just….handled it. And I am talking about a small metal clip pinching skin on your chest. OUCH!

I realized in that moment two things: The strength my son possesses is great. This isn’t new news, but wow. What a tough dude. And: Man, he’s been through some painful experiences in his short life, to react so minorly to that kind of pain. 

See what I mean?  I am so proud of him for being so strong and so brave, but I hate that he has to be. Hate it.

I am riding in the backseat with Kiran right now, an early morning drive to Iowa City. We see every specialist he sees, save ortho, today. It has been four months since we have seen most of them. 

Kiran has been off ALL meds, including eye drops, for just over six weeks.  I feel like I am bracing myself for that to change, though every part of me hopes it doesn’t have to. 

My anxiety is great this morning. I know we have decisions to make – his one year post-op cath to schedule, for instance – that I don’t want to have to make. 

I am so thankful – and so enjoying – how our life has slowed down. I love that medical appointments, ER visits, hospital stays…are no longer a normal part of Kiran’s life. I was just processing this yesterday: We have not had an ER visit or hospital stay since Kiran’s open heart surgery. Not one. In ten months. His first ten months of life were very different. 

Prayers and good vibes and positive thoughts and virtual hugs all appreciated today. It’s going to be a long day for all of us. I hope to update with good news on the drive home. 

Today was one of those days.  Anyone who has read any part of our story knows that feeding has always been – and continues to be – the hardest challenge of our entire heart journey.  And today, I had a particularly emotional and overwhelming day around feeding.

Kiran has been in feeding therapy at Childserve for a few months now.  He is making some progress – slow and steady – but today, he didn’t have a good session.  He coughed and gagged pretty badly, on a Cheerio, which is a food he normally does really well with.  On the drive home, he started coughing and gagging really badly in the backseat … badly enough that it scared me and I pulled over to check on him.  He was okay, but I was shaken…so I spent his lunchtime literally sitting in the backseat of the car (with the car on – it is stupid hot this week) in the Target parking lot tube-feeding him.  I just needed to have my eyes on him for awhile, to be near him.

I just wish his eating skills were improving at a much quicker pace.  I wish he could figure this whole thing out.  I get so tired of the tube sometimes.  It is a lot of work – the poor kid spends at least four hours every day just eating (1/2 hour of oral followed by 1/2 hour of tube meal, 4x a day).  I hate how much time he spends in a high chair.  I hate how messy syringe-feeding blended food can be.  And today, it all just felt like so much.  I was so overwhelmed, to the point where I was questioning where I was going to find my next hidden pocket of strength to continue with the day-in, day-out care Kiran requires.

I found it.  Today was the day I needed to change out the g-tube.  This is the first time I have had to do it when I have not had a nurse in the room talking me through it.  I have never felt particularly successful or confident in putting the new button in, and the whole process freaks me out a little.  When you pull the tube out, you are (of course) looking at a hole in your child’s stomach.  It’s all a bit too…medical…for me.  Needless to say, I was incredibly nervous about this afternoon.  Arif came down and supported me and one of my best friends – who has been trained on g-tubes and put plenty in – came over as well.

And it went flawlessly.  I did the entire thing by myself, and it just went incredibly smoothly.  It took all of 20 seconds.  I did it!  Finally, I felt confident and comfortable with the entire process.  It is what I needed today, to feel like “Hey, I’ve got this”  I’m so relieved.  Bring it on, life.  (Just kidding, life.  Lay off.  We don’t need anything else; we are good here.)

 

 

A picture of Jalebi (as we called him in the womb) popped up on my facebook memories this morning.  His 20 week anatomy ultrasound photo op.  I get emotional seeing it.  I sometimes wonder if this grieving process will ever be over.  It is unlike any grief I have ever experienced, because he is still here.  And he is such a joy!

But I still grieve the baby in that ultrasound photo.  That moment.  When all we knew was we were having a baby boy.  We assumed he would be healthy.  We assumed by now, at 19 months old, he would be walking and talking and driving us crazy in all the best ways.

It is such a complicated bundle of thoughts and feelings to hold inside oneself at one time.  My brain constantly barrages my heart, telling it all the reasons why I shouldn’t feel sad, all the reasons we have to celebrate.  And my brain is absolutely right.  But my heart…my heart still aches sometimes.  It still hurts to see others Kiran’s age doing “normal” toddler things, when we are still working on getting that stubborn little turkey to sit up for long periods of time.

I flip-flop between feeling guilty for grieving the child I always thought I would have and trying to give myself permission to grieve.  And I just wonder if it will ever be over, or if, like grieving the death of someone, it will simply be a lifelong journey.

 

Last week, Kiran had appointments both Wednesday and Friday in Iowa City.  My mom tagged along with us on Wednesday, so we could do some outlet shopping on the way home (Kiran will be SO CUTE this summer, especially with his new haircut now!)

Dermatology: This was just to have eyes on his birthmark and make sure we weren’t missing anything.  And we weren’t!  Everything looked normal, and we don’t need to follow up with her unless something changes.  Hurray for not adding another specialist!

Follow-up with eye surgeon: Right eye is looking fantastic!  He is very pleased, and he feels we no longer need eye drops in the right eye at all.  We decided to take the left eye down to just one dilating drop, instead of two, and see how things look in about a month.  It would be really nice to be completely done with eye drops, but I won’t get ahead of myself.  As always, we do what’s best for the little dude.

Friday, Arif and I took Kiran for his appointments.

Endocrinology: Because Kiran’s optic nerve is small, we want to make sure he is followed by the endocrinologist because oftentimes, pituitary gland issues can arise.  Kiran had labs taken, and they all came back normal this time!  But we do have to add this specialist to our team, in case problems come about in the future.

Lung perfusion scan: Kiran continues to be a rock star – and a hard poke for an IV placement.  He did really well for the scan, and Dr. R is pleased with the results.  His scan is stable and showed little variation from the last scan.  Dr. R said it is still showing a minor difference between the flow to the right lung and left lung.  He said it is likely they will need to balloon a pulmonary artery going to his right lung, which can be done in the cath lab.  We have to do a one year post-op cath anyway, for information-gathering purposes…so this simply means we should plan for an intervention during the cath.

All in all, pretty good news all the way around!  And yesterday, Kiran and I saw Dr. M from Iowa City (but here – yay for outreach clinics!) for his feet.  His feet are still looking good, and we were told to continue doing what we are doing.  Dr. M said for rocker-bottom feet, he likes to keep the brace on until they are 3 or 4, dependent on when they start walking and how all of that develops.  We would love to be done with the brace at bedtime – boy does Kiran fight it now! – but then, none of us really know any different.  The brace has been part of his routine almost his entire life, from about 1 1/2 months old.

I was dreading the busy appointment weeks – and actually, we see the pediatrician for his 18 month check-up tomorrow so the appointments aren’t over! – but all in all, we received wonderful news.  And we know he’s doing well when we realize this is the first time we have made it from one wellness check to the next without a pediatrician visit in between!  THREE WHOLE MONTHS!