Our local heart support group held a CHD forum Monday night, with various people with different relationships to a child with CHD (Mom, Dad, Grandma, Friend, Sibling, Child with, Adult with, Angel Mom) talking about their experiences.  The fellow heart mom talked about hospital triggers and the importance of self care, and I have been thinking through some things ever since.

Before my brother died, I lived inside a bubble most 17 year olds in my situation live in.  I lived in a small town, with loving Christian parents, and I had a relatively golden upbringing.  I know this isn’t the case for all kids, but for me, life was good.  Bad things didn’t happen to families like mine, to people like me.  I was 17.  I was oblivious.

So as we were driving to Omaha in the backseat of my pastor’s car, to see my brother who had been life-flighted after a horrible car accident involving a semi, in my mind, everything was going to be okay.  I remember I kept telling my mom “It’s going to be okay; he’s going to be okay.”  I was scared, yes, but no part of me thought he was actually going to die.  That just couldn’t happen.

But it did.  He was gone before I got to see him.  I never got to say goodbye to my brother.

My grandmother spent time in the hospital just weeks after we buried my brother.  And I wanted to be right there as much as possible.  I was determined to be able to say goodbye.  I never shared this with anyone at the time, but I was obsessed with wanting to be with her when she passed.

She recovered and went home, but she went back into the hospital – and it was the end this time – shortly after I graduated from high school that next spring.  We knew it was the end and that it would be time to say goodbye.  I remember, again, wanting to be there when she passed.  I stayed close.  I was in the room a lot.

And then, my best friend and her dad came and took me to Pizza Ranch to get something to eat.  You guessed it.  My grandmother passed away while I was away from the hospital.  Again, I have never talked about this, because I never really pieced together why (and I thought it was a bit morbid)…but I was devastated that I wasn’t there with her when she passed.  I wanted to have the opportunity to say goodbye that I never got with my brother.  I wanted to be with her, because I wanted so desperately to have been able to be with him.

Fast forward a million days later, and it has finally occurred to me why I find self-care so difficult when I am in the hospital with Kiran.  I fly through showers and have people deliver me food to his room so I don’t have to leave.  I refuse to spend the night away from the hospital.  Part of this is definitely just who I am, but part of this must stem from those experiences.  I am so afraid something will happen, and I will not be there.

And with Kiran, I HAVE to be there.  I would never forgive myself if I wasn’t.

Recognizing the reasons definitely won’t change my behavior, but it is good I understand where this piece of me comes from.  I hope I never have to say goodbye to Kiran, but you better believe, if I have any control at all (which my life has shown I rarely do), I will be right there with him if I do.

Kiran had his third swallow study this morning, first one in Iowa City. The experience was very pleasant overall, and he cooperated better than ever before. 

The speech therapist noted what he called micro-aspirations. Every once in awhile, saliva with a tiny bit of food would sneak down his airway. This is likely why he coughs while eating. It wasn’t enough that he was concerned, especially since Kiran does not have a history of respiratory infections. 

His recommendation was largely to keep doing what we are doing. Kiran’s eating and swallowing skills will continue to improve as we continue practicing with him. He did say to be mindful about his head position while eating – we need to re-introduce our extra high chair support blankets. And – of course – to continue making sure we give small manageable bites. 

The speech therapist also agreed that the majority of Kiran’s nutrition does still need to be through his g-tube. Oral eating right now is about gaining skills. 

Unless something significant changes, Kiran will have another swallow study in one year. 

I feel we got good information and good direction today. And it was nice to be affirmed in what we are already doing with Kiran around feeding. It may still be a long road, but we are in a good place with it all. 

And just like that…we are buckled in and on the road home!  Kiran was a trooper. Six hours lying flat wasn’t simple – and he definitely expresses more frustration nowadays – but we made it!

Well, our little Kiran continues to be a rockstar!  We just met with the surgeon. Everything looked good!  Pressures were good, and the blood flow was going into all lobes of his lungs. No intervention needed!!!!  He said this is one of the best repairs he’s seen. 

Likely discharged around 3 or 4 pm today!!! 

Thank you for the prayers!  WOW. 

Kiran was taken back to the cath lab about a half hour ago. This is a planned one year post-op cath. We know it is likely they will do some ballooning or potentially place stents to help with blood flow into the upper lobes of his lungs. 

Prayers and distractions appreciated while we wait to see our baby boy again. 

Team Keen on Kiran will be walking this Sunday at the Superhero Heart Run in Des Moines!  If you are interested in joining our team, you can register here: https://my.superheroheartrun.com/des-moines/events/des-moines-ia-2017-superhero-heart-run/e135844

We would love to have more people walking with us!  If you are unable to or are not local but would still like to give to the cause, you can do so here:  https://my.superheroheartrun.com/fundraise/team?ftid=124476

Proceeds benefit two local heart organizations that have touched our lives, supporting us and other heart families in Iowa and beyond. 

❤️

It has just been a hard day.  It has been a day full of hurt.  A day full of fear.  A day of wanting to hide away and being unable to.  Our world feels chaotic.  Violence and the threat of it have hit too close in my community today.  My heart was already hurting for the world.

And then.  Something that shouldn’t have hit me as hard as it did.  It all started about a week ago, when I noticed on the OT evaluation form at Childserve that Microcephaly was listed right next to Kiran’s CHD diagnosis.  And I questioned it.  I said “I know Kiran has a small head (By the way, microcephaly is just a fancy word for small head essentially, thus was the strength of my denial), but no one has ever talked to me about this as an actual diagnosis.  I don’t think this is right.”  So Kiran’s wonderful OT (We really do love everyone we work with at Childserve.) looked into it and found the source of the diagnosis: our pediatrician’s office.

The whole thing struck me as so odd.  I have said a million times how much I love our pediatrician (Still do; she was awesome today as usual, calling me back very quickly to answer my questions.) – I always have my list of questions, she always has her list of things to go over, we always communicate very well.  She lets me over-communicate, tell the whole story, which I prefer to do in every scenario.  So I just found it odd that Microcephaly would have been added as a diagnosis without us talking about it.

We happened to go in for shots today – We wanted to get his flu shot in early in the season, and we are pushing his two year well child exam until after his cath later this month – so I asked our (also beloved) Nurse R about it.  She assured me microcephaly just means “small head” and she let me know Dr. J added it to his diagnosis list at his last checkup in April.

As I said, Dr. J called me very quickly, given I was told she had a very busy schedule today.  I always appreciate her.  Always.  Really, it should have been an active diagnosis from birth, and she realized she hadn’t put it on his list yet.  It wasn’t added because of any new concern – it is just that his head size is something we have talked about and monitored his entire life.  It IS small for his age.  It also IS growing on his own little curve.  And it is a good thing to have noted as we approach the brain MRI we have been putting off.

Because, it’s time.  Some further digging, I noticed genetics in December of last year had microcephaly documented twice on Kiran’s assessment with them.  I had forgotten that they, too, had encouraged us to get a brain MRI done on Kiran.  So, that’s an ophthalmologist, a geneticist, and a pediatrician that all agree a brain MRI would give us useful information about our son.

It’s time.

I looked at one website about microcephaly.  Here are some of the problems linked with it, taken directly from the website:

• Seizures
• Developmental delay, such as problems with speech or other developmental milestones (like sitting, standing, and walking)
• Intellectual disability (decreased ability to learn and function in daily life)
• Problems with movement and balance
• Feeding problems, such as difficulty swallowing
• Hearing loss
• Vision problems

We don’t know Kiran’s whole story, but we know he has global developmental delays, with significant speech delays just assessed.  We know he has feeding problems, with a strong indication that swallowing is a big part of that.  We know he has vision problems.

I won’t assume this diagnosis is the answer to everything.  Until we get a brain MRI, we don’t know for sure what is going on….but it could be the answer to the hard questions I’ve been asking for the past year.  It is true Kiran spent the first ten months of life focused on just staying alive….but he also never had significant hospital stays, was never intubated for long periods of time….it also just hasn’t quite added up why we are so far behind.  Especially since everything they recommend for kids with microcephaly…I have been doing with Kiran.

I had to grieve this one.  Even though it changed NOTHING.  We have always known Kiran has a small head.  We have been monitoring it; I have asked about it several times.  I’ve even worried about it.  But something about that term – microcephaly – and something about the significance of the diagnosis, so much so that OT would want to list it right next to his heart defect….

It just seemed big.  Even though Kiran is still Kiran.  Maybe he just has a small head.  Or maybe it is an indicator of something going on with his brain.  But he is still Kiran.  No matter what we find out.

The current plan – I feel this has been our excuse all along – is to get through his heart cath at the end of this month.  Once we know the results of the cath, we will discuss the risks/safety of doing a brain MRI with Kiran’s cardiologist.  If he gives the okay, we will move forward in scheduling it.  It’s.  Just.  Time.  It’s time to know definitively what is going on in Kiran’s brain, not because it changes who he is…and not even necessarily because it will change all we are doing for him…but because it’s time to start finding some more answers, now.

Kiran and I have been working on rolling a ball back and forth for awhile now.  Not in any intensive way, but I have been trying to teach him.  One of the days this week at PT, they worked on it with him as well.  This motivated me to be more intentional about practicing with him every day.  Today, he was REALLY starting to get it!  He rolled the ball to me several times, and for perhaps the first time ever, I really felt like I was playing a game with my son!

It filled me to overflowing.  He was so proud of himself, and we were both laughing and having a wonderful time.

For a moment, a flashback came to me, about the very first little boy I nannied full-time.  I remembered this being a game I loved to play with him … at around six months old.

And for some reason, I realized at that point: I have a choice right now.  I can choose to grieve and be sad it took Kiran this long to get the hang of rolling a ball.  Or I can choose celebration and be joyful that he is here, getting it now.

I am not always capable of choosing joy.  Many times, the sadness needs to have its space.  Today, however, I was able to celebrate.

The choice is always there.

I am going to keep it real. 

I have struggled a lot – especially in the first ten months of Kiran’s life – with one question. Who am I, if I am not Kiran’s mom?

This was a question I asked, with the knowledge I could lose him. I still could. No one knows what the future holds. This is true of a healthy child, but it is more in-your-face when your child has a serious medical issue. 

But tonight, I struggle with the same question from a different perspective.  I have held this so close to me for so long, and I am weary. I’m done. 

Kiran’s dad and I are in the middle of a divorce. 

Kiran and I moved in with my parents about a month ago. And on the nights and weekends his dad has Kiran with him (though so important, and I love watching the relationship the two are developing)… I. Feel. Lost. 

From the moment I conceived him, it was over for me. Right or wrong, he became the most important thing in my life. I needed to care for him and nurture him. Especially after we got the diagnosis … He. Is. My. World. 

So when I find myself without him, I am a little lost. It’s all still very new. I don’t like it. 

It’s important. 

This is a blog about Kiran and about my feelings around raising him, so all I will say is this: It is incredibly sad we are here, but we are trying our best to move forward with Kiran’s best interests in mind. We are trying hard to be an (unconventional) family. 

But I still ask, as I am sitting at my cousin’s wedding reception, alone, wishing Kiran was here….

Who am I, when he’s not here?  Who am I, when I am not fully engaged in being his mom…his nurse, his caregiver, his chauffeur, his therapist….?

I definitely feel lost.