Every experience, so sweet….❤

I feel like we have been steadily making progress, one step at a time, in the right direction with Kiran.  It is a daily work and a diligent process, so I sometimes don’t think about it.

Physically, he is getting stronger and stronger all the time.  He has started helping when we pull him from laying down on his back into a sitting position.  He kicks his legs up and lifts his head – and uses those tummy muscles to help pull himself up!  Those legs really are kicked up to his head often too, especially when we are trying to wrangle his brace on at bedtime!  And he has started willingly putting weight on his feet sometimes!  Our latest physical therapy exercise is to sit cross-legged with him on our laps facing us, tucking his toes under our legs so he can’t lift his feet off the ground, and lifting him just a little under the arms…then waiting, while supporting him, for him to do the work of standing up!  And he does it at least a couple times every time (It makes it fun when mommy “eats” his neck every time he comes up to standing).  I can’t believe the progress he is making.  We still have a long ways to go to catch up, but I’m confident he will eventually get there.

Medically, he has been successfully weaned off the lasix for a couple weeks now!  We had no issues with the wean (even though this mom took it a little more slowly than the cardiologist said we could….I’m conservative).  Heart-wise, he is only on half a baby aspirin a day, and that should hopefully only be until after we see the cardiologist in March (It is just a post-op protocol and usually for only 6 months after surgery).  We are also working to wean him off the omeprazole, and it is going well so far.  We are down to only 6 ml a day and have a slow weaning plan in place (that I created myself after reading about the topic) that should have him off by the end of January.  We have had no increase in coughing spells or vomiting, so it seems like it should be a success.  It will be so exciting to potentially have him completely off meds!!!

Feeding-wise, though it’s not the BIG BIG news, we have two pieces of pretty big news: He is officially off all formula!  I am blending real food for him every day, and it is going incredibly well.  I love that we are preparing his gut for eventually eating orally by giving him actual food to nourish him.  I am getting more and more comfortable putting together various blends and plan to start actually blending separate meals this weekend for him.  Right now, I blend a daily blend that wouldn’t taste good … I want to continue moving toward as close to “normal” as possible.  I have basic guidelines I follow of each food group and how much he should get daily, and I use an app to count calories.  I also pay close attention to his fluid intake and am constantly working on being able to increase the volume he can handle.  It’s been rather interesting, and I feel really good about it, since our reality is we still rely on the tube to get him the nutrition he needs.

The other big feeding news is he is officially off overnight feeds!  I love not having to wake up in the middle of the night to turn off the pump!  We generally give him some ripple milk (a milk alternative made from pea protein), coconut water, or water (depending on where we are with calorie/fluid needs for the day) before we go to bed, and that’s it!  Again, I feel like we are finally able to start mimicking what it will be like when he eats orally, and that feels like a solid step in the right direction.

I did hear from Childserve today that they have a slot for us for the feeding clinic; at this point, we are just waiting for pre-approval from insurance.  Once they get that piece in place, we will be able to start once-a-week feeding therapy.  I am cautiously optimistic that this will help Kiran gain the skills he needs to eventually be tube-free.  It’s going to be a longer and harder road than we ever imagined, but I am confident we are doing what we can to get there!

Kiran continues to just be the sweetest boy – and quite the chatterbox too!  He has definitely started using a lot of consonant sounds in the last few weeks.  “BA” is his favorite, but we hear some “MA” and “DA” and “GA” too!  We love chatting with him and can’t wait for him to start using words so we know what’s going on in that cute little head of his!  The day-to-day still gets overwhelming at times, but he is such a joy.  I continue to be the luckiest mama in the whole wide world. 


 

I guess you could say I’m taking the job as Kiran’s advocate even further as of late.  I have been working to consolidate his medical care wherever possible, and I am questioning each specialist for what they actually bring to the table (and if I feel it is worth the extra appointment time).

For us, I feel our GI appointments have been a bit of a waste of time.  I have never exactly understood the purpose, to be honest.  Kiran gets weight checks regularly with the home health nurse, and I always felt all my other GI-related questions were answered with information I already knew or pushed off to others (like feeding clinic therapists).  Thankfully, our GI doctor agreed with me, that as long as our pediatrician is comfortable taking over G-tube care, we can consolidate in that way.  He will be a resource if and when we need him, when things change down the line.

Nutritionist.  Again, I hate that my blog posts seem so negative around medical care professionals lately.  However, I should not be teaching someone something pertaining to their area of expertise.  Both times I have met with her, I have asked her about something she’s never heard of before.  This last time, it was about a relatively new milk substitute.  I just feel that’s a big piece of nutrition – a lot of people cannot handle cow’s milk for various reasons – I would think as a nutritionist, you’d want to keep up with all the new research and products out there when it comes to this kind of thing.  And it’s not even super obscure – Target and Whole Foods sells it!  I guess I am just frustrated when my own efforts gain me more information than meeting with the experts does.

I am pretty sure I have decided we no longer need to see a nutritionist.  I wanted to see her to get started on the blenderized diet, but now that I have a framework and an understanding, I certainly don’t feel the need to regularly follow up.  Especially since her last request was to get a three-day food log to analyze down to the micronutrients to make sure Kiran is getting what he needs.  Mind you, Kiran has no GI issues, other than he doesn’t eat enough by mouth and is fed through a tube.  I can understand if we were monitoring another health concern like diabetes, and we needed to closely monitor his intake of sugars.  But if he were an oral eater, I am fairly certain no one would be concerned about his nutrient levels.  He’d likely be subsisting on grilled cheese sandwiches and glasses of milk.  I am blending far more healthy foods for him than most kids his age are eating, and he gets a multivitamin every day to boot.  I’m just not doing it.  It’s too much work that I don’t see the benefit from.

I guess you could say I am craving normalcy.  I know we will always have more appointments than other kids.  We are currently trading out the medical appointments (thanks to my consolidation efforts) for therapy appointments (especially once we get scheduled for the feeding therapy!)  I know we have important things to keep an eye on and closely follow up on.  I would never cut out the crucial things in favor of normalcy.  But I will continue to stand up for my rights as his mother and for his rights as a 14 month old boy.  I will continue to question specialists if it is really necessary to continue follow-up care with them if I am just not seeing the point.  And I will continue to build a team around me that is smarter than me, even if that means continuing to play musical chairs with our medical support system.

I am no longer operating on fear.  I am no longer simply doing what I am told.  I am questioning.  I am advocating.  I am doing what I feel is best for my son and for my family.

I have never been big on New Year’s resolutions.  I think we always have a choice, every day, to live our lives differently.  Nothing magical happens on the first of the year that allows us to reset or change our ways.  We have that power every day – heck, every moment – of every year.  That being said, I do find myself taking stock of the past year and looking ahead to what this year may hold.

I got off track at the end of 2016.  It absolutely makes sense to me why.  As we approached the stress of Kiran’s big surgery – and then, as we celebrated the outcome – a lot of things just didn’t take priority in our lives.  Things like exercise and healthy eating – and it shows.  It is something I have known I need to get back on track for some time now, but I wasn’t ready to make that choice.  I’m starting to get ready.

One thing I feel we have been doing right: family and friends.  Love.  Putting our time and energy into the people in our lives that deserve it – that fulfill us, that support us, that love us.  I am willing to let everything else slide – the state of my house, perfect finances, even healthy eating – to get this piece right.  This, to me, is the most important thing in life.  It is my number one priority.  The experiences in my life, this last year with Kiran included, have firmly put this into perspective for me.  I hope I never grow complacent in this area, no matter what else may be happening.

And really, it’s the biggest thing I want to teach my son.  To put people above things.  To drop everything, no matter what or when, for a friend who needs you.  To love wholly and love well.

I am the only one awake at my house. It is 6 am. I woke up feeling emotional. I. Am. So. Blessed. 

I have said it a million times: This has been a hard year. An extremely excruciatingly hard year. I have always been an emotional person; I feel things very deeply. Every single emotion, good and bad, has been magnified ten times since having my son. 

I never knew I could hold so much love in my heart. I never knew how terrifying loving someone could be. 

He’s with us. Sometime within the next hour, I will hear him rustle and wake up. His cries will come through the monitor, and I will go pick him up. Hold his snuggly body. Smell his sleepy breath. Feel his tiny hand grasp and pinch my neck (his latest obsession – ouch!). Hear his voice saying good morning in that baby language we will never understand. 

There really are no words for what I am feeling this morning. Blessed is an understatement. Thankful doesn’t cut it. 

At the Christmas Eve service last night, the pastor talked about moments that change us. It’s those Before and After moments, the defining moments of our lives.  I’ve had so many this year. I am not the same person I was going into 2016. I wouldn’t have it any other way. 

Reach out to the people you love today. And tomorrow. And the next day. Tell them you love them every day. Show them. Act out your love. It’s the most important thing. 

This Bible verse hung prominently displayed in my childhood home: And now these three remain: faith, hope, and love. But the greatest of these is love. 1 Corinthians 13:13. 

Love really is the greatest of these. Thank you all, for loving my son, even if you haven’t yet met him. Thank you for loving my family, for following our journey. Every word of encouragement, hug, message of support, has come at a time when it was needed most.  You have all held me up throughout the darkest moments of my life so far – and the most joyous. 

From my family to yours – Merry Christmas. I love you and cherish you, my dear family and friends. 

I am normally much quicker at blogging about results that come in – I know many are quite invested in Kiran’s story, so I apologize.  While I have yet to get a phone call from our cardiologist (I assume because of the holiday season), the test results showed up on mychart on Friday.

I would like to think I have gotten quite good at reading medical paperwork.  Kinda.  Here’s what I know: It’s not much different from the prior scan.  This is good news.  The percentage of blood going to the left versus right lung is 52/48 – this is good.  We want those numbers to be as close to 50/50 as possible, and given Kiran’s anatomy, this is an incredible ratio!

I was not aware Kiran has a “decreased perfusion in the right upper lobe”, but apparently this is “similar to the prior scan” so I’m not concerned.  This basically means less blood is going to the right upper lobe than is going to the left upper lobe.  However, all other lobes are relatively similar (They essentially looked at the top third, middle third, and bottom third of both left and right lungs).

The Impression states as follows: “Grossly stable lung perfusion scan with decreased perfusion in the right upper, with a right-to-left lung perfusion ratio of 48% to 52%.”  I like the word stable.  A lot.

I doubt I will hear anything different from our cardiologist – This was a good test result.  He is stable, not much has changed since his scan in September, and we will have another scan in March to continue monitoring his bloodflow.

It has just been one of those weeks.  There isn’t really a discernible reason for it.  I have just been emotional.  It’s been busy lately – it has really been a pretty difficult month overall – complete with big decisions and big appointments mixed in with all the daily stuff.  Life has been busy, and I haven’t had many breaks.  I was explaining this to someone recently (maybe I even wrote it already on here?): It’s not really that I need a break from Kiran.  He’s pretty great, and he helps remind me the reason for all of it.  But I need a break from my brain while caring for him.  When I am with him, it’s like every ounce of brain power and heart goes into him.  His appointments, his feeding, am I doing this right, I need to research this more, we better work on physical therapy exercises….

It is too bad you can’t actually take a break from your own brain, but at least when I have those breaks to get out on my own, with my husband, or with friends, I can distance myself a little bit from the constant whirling and worrying.

For some reason, even though Kiran is stable heart-wise, I have been very emotional around the year we have had.  Others in the heart community have gotten tough news recently with their older kids – time or almost time for another intervention – and it has reminded me that this is never done.  That being said, I have to find a balance and get past this “waiting for the other shoe to drop” mentality I currently seem to be stuck in.  Sometimes, despite all we have been through, I just feel like it’s too good to be true…that surely something is going to go wrong with this poor little turkey’s heart.  That it can’t be that easy.  I know – sounds weird – the kid has been through open heart surgery.  He’s just done SO WELL, and it seems like it can’t be real.  This is making waiting for his lung perfusion scan results – which we still haven’t gotten – very difficult.  It is amazing, really, the nightmares my mind can concoct.

I am hopeful this weekend will help.  In true whirlwind fashion, we are leaving for Kansas City tomorrow after our feeding clinic evaluation in the morning.  This will be our first overnight trip with Kiran that has nothing to do with medical appointments.  It just occurred to me this morning why Kansas City at Christmas time felt right to me.  My parents and I went to Kansas City at Christmas time in 2001, just a month and a half after losing my brother.  It was something different.  We needed things to be different – to feel different – because we were so different.  Everything was different.  I feel that way this year.  We came into the year having no idea how it would go.  We didn’t know if our son would be here to celebrate Christmas with us or not.  And even though he is, our family needs healing.  This year has changed us significantly, and we need a space to be different in, together.

The scan that started it all. When I initially started asking questions about sedation protocol for the lung perfusion scan, it opened up a can of worms I had little idea even existed. It became the catalyst for stepping back and examining our care choices for Kiran. Ultimately, it helped us in our decision to move his care back to Dr R in Iowa City. 

We continue to feel confident we have made the right decision. 

Today’s appointment started with the most unpleasant thing – IV placement. For whatever reason, Kiran has always been a difficult poke. It took them two tries, and Kiran was VERY upset (and rightly so). I was holding him and the child life specialist, Arif, and I were all trying our bags of tricks to calm him, to no avail. Kiran has never been easily calmed. This mama almost burst into tears as well, but we all made it through. 

He gets MAD, but he also gets over it pretty quickly. He even gave the nurses a little smile before we headed to nuclear medicine. 

Even though we were told the sedation protocol was to use it at Kiran’s age, they were willing to try first without. AND KIRAN ROCKED IT!  They had to do four pictures, two minutes each, and he was still for all of them. We only had to try once, and no pictures needed to be repeated. 

After all the craziness and drama around this procedure, I am so so so thankful Kiran was his usual easygoing self. 

We are lucky. 

And now, we wait for the results. We will have the test results in mychart by this afternoon, and we should get an explanatory phone call from Dr R by early next week with what they mean.  Our hope is that nothing has changed. 

So glad to have all of these medical appointments behind us. Next week is a week full of therapy appointments. Onward!