I have been processing through something a lot in the last couple of weeks.  As I pondered what to do with Kiran’s baby stuff and outgrown clothing (do I pack it up to store, do I hand it down to someone who will save it and give it back, do I simply donate it), I was forced to examine this feeling I have had for some time now – one I never thought I would have.

Kiran is it for me.

Granted, I completely understand I may change my mind about this.  I completely understand I am not the sole decision maker in this (I suppose my husband has some say….)  I know that as the daily overwhelm becomes less, and Kiran’s needs become more manageable (or at least more “normal” for me, old hat let’s say….), I may find myself wanting to grow our family.

Honestly? I just don’t see it.

Do all moms feel this way about their firstborn?  I don’t know the answer to that.  Would I feel this way if Kiran was healthy?  I will never know that either.  I always thought I wanted multiple children, two at the very least.  But our family just feels … complete.

There are many, many logical reasons to not have more children.  But ultimately, for me, it comes down to this:

I am Kiran’s mom.  I just don’t feel like I’m anybody else’s mom.  I have examined this feeling a billion times over in the past several months.  Even if we were to lose him (I cannot ever shake this thought, it is always somewhere in my mind, nagging me), I don’t think I would have another child.  I’m just not anybody else’s mom.

I’m Kiran’s mom.

For our second appointment in Iowa City yesterday, we met with a nurse practitioner who focuses on the overall development of the child.  Her goal was to look at the big picture of Kiran’s life and make sure he is seeing all the specialists he needs to see and getting all the services he needs to be getting.  She mentioned that he is doing better than she expected.  For fine motor skills, she felt he was right where he should be at this age.  For social and talking and those types of skills, she felt he was in the 11-13 month range.  (He is 15 months old, today actually!)  He is farthest behind in the gross motor category – this is the rolling and crawling and sitting and standing – so not a surprise to me.  She placed him in about the 9 month range for these skills.  She did mention, much to my encouragement, that during the sick period, when these heart kids are waiting on their surgery, they do simply stop developing.  We saw it.  Kiran progressed pretty well for the first few months of his life, but as he got bigger and sicker, he didn’t make much progress.  I’m glad this is “normal”, because I sometimes have struggled with feeling like maybe I didn’t do enough to help him develop.  But then I think back on that time, and he really was using all his energy to just breathe and be alive.

She felt we are doing what we need to be doing for Kiran.  He is getting the services she would have recommended already, and her at home recommendations are all things we are already doing with him.  I did request she set us up with a GI doctor in Iowa City and a dietician.  She also asked if we would like to see dermatology just to establish a baseline for the birthmark on his leg, so it can be monitored for any changes.  I don’t think this is a bad idea, so we agreed to that as well.  It seems my hopes for fewer medical appointments would continue to be shattered yesterday.

Our third and final appointment of the day turned out to be the one we needed the most brainpower for – and of course, by that point, we were simply exhausted.  We met with the genetic eye doctor for a follow-up.  She was able to get a better look than she has ever gotten before.  Kiran’s optic nerve is small.  I am not sure I completely understood everything she was saying, but I guess when the optic nerve is small, oftentimes the pituitary gland is affected in some way.  An MRI continues to be something we will need to do in the near future.  Since it may be awhile before this happens (I will get to why in a moment), she is going to set us up with an appointment with an endocrinologist.  We would be specifically looking for growth hormone issues and another hormone that would affect how Kiran recovers from illness or anesthesia.  Those are the two big things involving the pituitary gland.

Again, that is only my very basic understanding, because my brain actually kinda shut down after hearing the next news.  Kiran needs eye surgery.  Way back when, I wrote about how he has pupillary membranes in his eye – specifically his right eye, which is also the eye with the small cataract.  These membranes generally break away at or shortly after birth, and for whatever reason, they didn’t.  They are affecting his vision in the right eye.  His right eye doesn’t dilate as much as his left.  If we don’t do surgery in the near future to remove the membranes, Kiran will start preferring his left eye.  This of course will affect his vision and how he processes visual stimuli, so it is obviously something we want to take care of soon.

Surgery is not something I was expecting to hear, and it is not what I wanted to hear.  Obviously.  I was already concerned about how many procedures and tests he needs to have done that involve either sedation (which I learned yesterday comes with its own risks and in some cases can be even more dangerous for heart kids) or anesthesia.  The good news is they should be able to coordinate the hearing test and eye exam while he is under for the eye surgery.  I will be writing an email to Dr. R, cardiologist, later today to outline a plan for all the other things coming up – and to make sure he feels Kiran is stable enough for this surgery.  I don’t think any other tests can be coordinated.  The lung perfusion scan is done in a room with a very large piece of specific equipment.  His cardiac cath will be done in the cath lab.  I have a feeling the MRI will be pushed out until after all of these other tests and procedures are done, so may not happen until next winter.  I am anxious to hear what Dr. R’s recommendations are as far as spacing all of these things out.  I need to get my head wrapped around a medical schedule for the next year.

It is overwhelming, but I am thankful to be overwhelmed today.

I am struggling today. For some reason, I woke up just dreading it.  I felt like a 2 year old, with this running through my mind:

I don’t want to. I don’t want to sit in the waiting rooms. I don’t want to explain Kiran’s medical history. I don’t want to go through the tests. I don’t want to potentially get bad news. I don’t want to have to take scary steps forward. I don’t want to.

I’m overwhelmed already, and we only have one appointment of three behind us. Here’s the new news:

I haven’t talked about Kiran’s hearing in awhile. It has been the least of my concerns, but we have been doing follow-up checks with the AEA in town. You may or may not remember, he didn’t pass his newborn screening or completely pass his first check afterwards.  He has passed two tests since.  I don’t have any huge concerns with his hearing, but obviously we want to keep an ear on it (see what I did there? I still have jokes). 

Today, we were told we have ruled out everything except minor hearing loss. She said though this doesn’t sound especially concerning, it is still something we would want to be aware of and could affect how we care for him moving forward. She wants us to have his hearing checked again in 2-3 months (I will wait 3, give him a chance to catch up more developmentally in all areas). We can do the recheck either here at the Center of Disabilities and Development (where we were today) or at the AEA as we have been. 

If the results are still questionable in three months, she said it will be time for us to strongly consider doing the sedated hearing test. Of course. My heart immediately goes into a panic when I hear that – and it would be general anesthesia (well, in his case, I am assuming with a cardiac anesthesiologist) going completely under. 

We got lucky with the first of three lung perfusion scans Kiran needs this year. As he is getting older and more active with his movements, I am willing to bet we may not be as lucky the next two times. Two possible sedations. We need to get an MRI scheduled and take a look at what is going on in his brain, not only for vision but for other information (I still have this sense this will give us some answers). And now, the hearing test. Not to mention he will have to go under for a cath in September to more thoroughly check on his heart function and mapcas post-surgery. 

Some of these can hopefully be coordinated, and I will fight like hell to make sure he only goes under as few times as absolutely necessary.  But it’s scary. Every time. And overwhelming. Every. Time. 

It is a phrase my family has used countless times, to signify what comes in the “after” during those times in our lives that distinctly separate it from the “before”.  I have written about this many times.  Finding out you are carrying a child with a complex congenital heart defect is certainly a time when your life becomes completely different in a moment.  And – I am finding – having your child go through a successful open heart surgery is another such moment.

For the first ten and a half months of Kiran’s life, I was on high alert.  He was on a pulse ox at night measuring his oxygen saturations, I was counting respiration rates and watching retractions, I was worrying and fretting over every little thing….There were numerous trips to the ER in his first months of life.  I got used to living this life of being on my toes.  I had hospital bags packed in the closet, ready to go.

And now?  I am trying to remember how to live outside of that constant panic.  I am struggling with what it means to be a mom when my first ten months of doing so was so different than the now.

Kiran has a cold.  He is stuffy.  But he’s not retracting when he breathes, and his saturations are on point (Yes, I still pull the pulse ox out to spot check when I have a concern, even though all the doctors have said stop using it.  Please.)  A year ago, we were just coming home after a week in the hospital due to a cold.  Granted, he was an unrepaired newborn at the time.  Still, I am finding myself having to alter my thinking.  Quiet the fight or flight response in me.  Realize that he is medically stable and doing really well.  Let him be a normal kid with a cold.

On the flip side of all of this, even as I am educating others about congenital heart disease being lifelong, I find myself in denial.  I find myself wanting to believe that it’s just over now, that we made it to the light at the end of the tunnel.  I know it’s not true.  I know there may be times I will have to go back to being the on-her-toes mom.  I know there will be other interventions, and there will always be more appointments.  But sometimes, I just like to…pretend?…that he’s cured.  That it’s over.  That we made it through the darkness.

And I am certainly in denial about moving forward with other appointments for Kiran’s other medical issues.  We drive to Iowa City tomorrow.  Kiran will have his hearing checked early Friday morning.  We will meet with a neonatologist to ensure we have all the services and specialists we need for him (since we moved cardiology to Iowa City, Dr. R. is wanting to make sure everything is covered for Kiran).  And then we see the genetic eye doctor again.  And – as terrified as I am – I am pretty sure we will be moving forward in setting up a brain MRI for Kiran.  It’s time.  If there are answers to our questions, we need to face them.

But I don’t want to.

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.