It is a sit and sob in the kitchen kind of morning.  I have largely been able to keep myself off the ledge as we navigate our new feeding schedule, the g-tube, and all it entails.  I have been able to tell myself he will take what he takes by mouth, and it is what it is.

But it seems like he is perpetually taking less and less by mouth.  The hope was having the NG out of the back of his throat would motivate him to eat more by mouth, not less.  The hope of starting the overnight feed and doing fewer bottles during the day is he would have more energy to eat, not less.

And I can’t figure out why.  This is the piece that makes me break down and cry.  If I don’t know for sure why he isn’t wanting to eat by mouth – teething/mouth pain, energy/heart-related, pure stubbornness/lack of desire – I can’t figure out how to help him.

We do see our GI doctor next week.  We are going into ChildServe for a feeding clinic evaluation, but they didn’t have a date until August.  I am taking all the steps I know to take to help him with this.  I literally don’t know what else to do, but it makes me worry, watching his oral feedings decrease.

He keeps teaching me this same lesson over and over again: That there is a LOT in this world I simply can’t control.  No matter how much I wish I could, no matter how difficult it is for me that I can’t….I have to figure out how to come to a place of peace with this.  Feeding has been one of the greatest emotional difficulties of his life thus far, for me.  I have to locate my peace, somehow.

I want to exude strength, thankfulness, joy.

I can’t seem to get out from under my grief.

It is not that I want Kiran to be different.  I don’t.  He is the perfect little boy for me.  He is opinionated and charming, happy and strong.  I love him with my whole heart.

It is just that I wish a different life for him.  For me.  For all of us who love him.  I wish he didn’t have to be so strong.  I wish he didn’t have to experience so much pain.  I wish his life could be innocent and pure.  I wish his days could be full of exploration instead of appointments.  I wish he knew what it was like to breathe without working so, so hard.  I wish he knew the joys of eating – and being able to stop when he wants.

I have grown so much more confident caring for him, and he continues to be largely stable.  We have had a relatively quiet few months – no ER visits for awhile, the only hospital stay planned – I don’t know why now is when I am struggling.

Perhaps because I always find my strength when I have to – when he needs me to.  In the quiet, in the calm, I am allowed to break down, just a little.  I am just worried I may find it more difficult to find my strength again.  I try so hard to keep my armor on, always, because I don’t know when I will have to go to battle for him next.

It scares me that I find myself crying more lately.  It scares me that I seem to be having more days when I struggle to get out of bed.

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I wrote all of that before going to church this morning.  I don’t know what kept me from publishing it – apparently I had a sense there would be more for me to process today.

The skin around Kiran’s g-tube started looking a bit more red than usual yesterday.  I made a note of it, planned on watching it carefully.  While I was at church, my husband gave Kiran a bath and noticed things were looking worse…Today, there was white pus in the midst of the red.  Infection.  So – off to urgent care we went.  We caught it (of course) at the very start (since we were watching it), so we got an oral antibiotic that should take care of it.

But.  The moment I came home and saw his infected skin, I immediately felt like a failure.  Surely, I must have done something wrong.  I didn’t keep it clean enough, I should have changed the dressing more often…something.  Somehow, it reflects on me.  Somehow, I screwed up, causing my poor baby pain.  I cried.  I beat myself up inside my head and out loud to my husband.

This is how my brain works.  Unfortunately, though I can show forgiveness and grace to everyone around me, in enormous quantities, I struggle showing myself that same consideration.  I struggle with wanting – no, needing – to be the perfect mother, the perfect caregiver, the perfect nurse, the perfect person.  I need the A+, and I don’t know how to be kind to myself when I don’t achieve it.

It is a constant work in progress.  I’m off the ledge now, though I still have the nagging sensation I could have done more to prevent this infection.

What I do know is this: It remains true.  I find the strength when he needs me to.

 

I.  Despise.  Medical.  Paperwork.

Not only is it time-consuming and head-swim-inducing, but it also always invokes an emotional reaction out of me.  It is hard reliving Kiran’s brief but extensive medical history.  It is hard when I realize I have ABSOLUTELY NO IDEA who the doctor was when I was giving birth, but I could tell you the cardiologist’s name who was on the floor the first week of his life.  And I could tell you every other specialists’ name since then.

I also can’t recall – and this makes me feel like a poor mother, despite my best efforts to show myself grace – when he did certain developmental things.  I don’t remember how old he was when he first smiled; I simply remember how relieved we were when we saw it.  How thrilling it was that he had the energy to smile!

With all of it – I have to admit – I don’t even have a baby book for him.  I don’t write down milestones.  We do try to take pictures every month, but we are often weeks late on that!  My only true record of his life is here on this computer screen…and in the deepest places of my heart, where it all resides.

One of these days, I will organize all of his medical information, and it will make filling these forms out an absolute breeze.  Until that day comes (likely when he’s in college), I will continue to have to spend many minutes – or hours – compiling all of the information that is wanted.

But not tonight.  Even armed with chocolate and pinot noir, my brain can’t handle it tonight.  My heart isn’t up for it tonight.

Tonight, I will simply try to remind myself why I can’t hold all the information in my head.  I will remind myself why it doesn’t matter that I don’t know who caught him as he came into this world.  I will do my best to love all I do know, the important stuff, and all I am willing to do for my son, even when it makes me want to pull out my hair.

If filling out medical forms isn’t the purest form of love, I don’t know what is.

 

 

I cannot honestly say it has been a perfectly smooth transition into the g-tube world with Kiran, but we are definitely transitioning.  I had a couple days that were quite overwhelming last week – I even asked my mom to come spend the day with us one day, which is a huge deal, for me to ask for help.

I am getting the hang of it.  We added an overnight feed to our schedule, which allows us to only have to fit in four bottles during the day instead of 6.  Our days are less hectic and more full of other things, and that feels pretty darn good.

Kiran’s sleep has been quite disrupted by something.  Before we went in for his g-tube placement surgery, he was sleeping pretty well through the night.  He would wake up around 3 am needing a diaper change (darn Lasix pee!), but he would go to sleep quite quickly after that.  Since we have been home from the hospital, he has been a lot more fussy.  He will often wake two or three times throughout the night.  Instead of it being as simple as going in and putting the pacifier back in his mouth, I often find myself going in 3-5 times with every wakeup before he finally settles back into slumber.  I don’t know if this is just because his routine was disrupted with the hospital stay, if he is still sore recovering from the surgery, or if it really is darn teething this time!  (It seems so, but haven’t I said that before!?!)

We saw Kiran’s cardiologist this week.  Not much has changed, but he feels we have a good case to present to Stanford in moving the timeline of his surgery up from December.  His heart is enlarged, his lungs are overcirculated or wet, and his oxygen saturation levels are climbing – all of these things indicate he really will not be stable until December.  Dr. M. said especially the overcirculation in the lungs – if left this way too long, it can cause scarring.  I hope Dr. Hanley’s surgical team at Stanford will listen and take us seriously.  I keep telling myself, when it comes to this situation “Trust the process.”  I hope I am right in doing so.

The early access vision person was in this week as well, and Kiran has moved up another two points on his visual assessment!  He has had a steady increase of two points every month since she started coming.  This is great news – slow and steady progress!  I am still anxiously awaiting our full day at the genetic eye clinic in Iowa City in early July … I hope this time we really will get some answers!

All in all, things have been going pretty well over here as we get used to yet another change in our routine.  We love getting to see Kiran’s full handsome face with no tape and no tube in his nose!

 

I cherish my child.  I love him.  I am thankful to be his mom, and I wouldn’t trade him for any other kid.  Still, sometimes, I find myself needing to grieve the child I always envisioned I would have.

I have always wanted to be a mom.  More than anything in the world, I feel it is my true calling.  I have always loved kids, and I gained a lot of experience with raising healthy kids during my time as a nanny.

I have never wanted to be a nurse.  I was never drawn to work as a nanny for family with children with special needs.  It always intimidated me.  Medical equipment intimidates me.  I have zero interest in being in the medical field in any way, shape, or form.

And yet.  Here I am.  The medical expert on my son.  I have been forced to learn and do far more than I ever wanted to.  It’s scary.  Especially when things are new and we are in a recovery period, like now, it’s terrifying for me.  I never know if I’m doing it right.  I never know if I will miss something big.  I never wanted to have to worry about this stuff.

It was not the desire of my heart.

But Kiran is.

So many things have changed because of him.  Because of who he is, because of his heart condition, because I love him differently than I’ve ever loved another being.

I always hated pacifiers.  I was never going to give my child one.  Or, if I did, I was going to wean them off early.  Now, I am thankful Kiran loves his pacifier.  It gives him the oral practice he needs to eventually take more food by mouth.  It is a comfort when we are in the hospital.  It is a reminder, while he is being pump-fed, that sucking produces fullness.

I always loved schedules.  I had all my nanny kids on eating and napping schedules within the first week of starting with a new family.  Kids thrive on schedules, but really, so do I.  It is impossible to have Kiran on a schedule.  With all of our many medical appointments and therapy sessions, there is just no way I could adhere to a strict schedule.  So I have learned to go with the flow with that.  We do our best to stick to a loose one.  I have had to let it go.

I always prided myself on helping kids meet or exceed their developmental goals.  Every kid is different, true, but I feel I was very good at progressing a child in that way.  It is so hard for me, sometimes, to remember Kiran is especially different.  We have to practice things in short spurts because he tires easily.  There are days we don’t practice at all.  He is seven months old but probably closer to 4 or 5 months developmentally.  That is hard on this overachieving, perfectionist mama.  It is hard to not feel it is a failure on my part (I never feel it is one for him!)

I have written about this so many times.  This is not how I pictured my life.  And sometimes, like today, I just need a moment to be sad.  I am trying to allow myself that freedom without guilt.  That, too, is difficult.  Because I wouldn’t trade the little man, not for anything.  And I just don’t know how to reconcile all of the emotions I feel.

I have found that being a mom of a medically fragile child means I will feel just about every emotion on the spectrum just about every single day. 

It never fails: anytime we have a new medical device or change in our schedule, I get overwhelmed. It takes me awhile to find my footing and gain confidence. It is why, while we were in the hospital, I jumped right in to start feeding with the g tube. I jumped right in and had the nurse talk me through cleaning the site and changing the dressing. 

Still, coming home from the hospital to the milk gone bad in the fridge, the mail piled up on the counter, the hospital stay laundry, the mountain of new medical papers to add to the mountain I will organize “someday”….It overwhelms me, especially as I am trying to get Kiran back on some semblance of a normal feeding schedule and figure out the nuances of this new feeding apparatus. 

But. In the midst of it all, I was so thankful today. We have been blessed with Kiran’s presence for seven months now! (Um, where did that last month go!?!!)  And we got to celebrate his life at home.  We had some fussiness today and one small vomit after a tube feeding, but it was really a beautiful day spent together as a family. 

And – he officially weighs just over 15 lbs now!!!  My big, handsome man. Not to mention, we now get to see both cheeks at once – no more tube in his nose; no more tape on his face!

Still (jumping all over the place; it gives you a taste of my “just about every emotion” concept) – At one point today, I found myself trying to console him on his bedroom floor, tears in my own eyes, telling him I wish he could be healthy. I wish he had a strong heart and could eat by mouth. I wish we didn’t have to figure out how to keep him comfortable with tube feeds. 

But then, I also found myself telling him that’s life, and life is going to be tough. I told him his mommy and daddy will be with him every step of the way – and that if I could, I’d take it all on for him – but, unfortunately, he is going to have to do most of the hard stuff. 

In other words, he gained some wisdom today. It comes with age. 

We are being discharged!!!

I am relieved and excited … And, as always, overwhelmed. 

Yesterday was a hard day, but ultimately, a good day of progress. Poor Kiran was so hungry all morning as we waited for the surgeon to give us the okay to start feedings. He had a lot to say, and it broke this mama’s heart that she couldn’t do anything until we got the green light. 

Feedings have been going pretty well. The nurse showed us how to do the first one, and I have been doing them ever since (Arif did his first at his 5 am feeding this morning, at my instruction, no nurse present!). That part is pretty easy and works pretty slick. We have been doing the feeds by gravity so far – and it goes in so much faster than the tiny NG tube – but Kiran does seem a little uncomfortable for 10 or 15 minutes after a feed so we may have to play with slowing it down, especially as we up the volume. 

We will be waiting on the green light again today to increase the volume – we have been sitting at 60 ml each feeding for the past several – only half his normal intake. He is still on fluids, too, and we will wean him off of those as his food volume increases. 

Today we will learn how to change the dressing around the g tube and take care of it during the healing process (the next two weeks). I am anxious about this part but plan to jump right in – it’s the only way to get comfortable with our new normal. I want to feel confident going home. 

And I desperately want to go home today. I don’t know yet how likely this is, but I am hopeful.  So ready to be out of the hospital setting!

Overall, this whole process could not be going more smoothly. Thank you to everyone for all the thoughts, prayers, encouragement, and visits. We feel it all and appreciate it greatly. 

Kiran is doing really well in recovery. He has definitely had some pain and discomfort – and he had one big bout of agitation that left this mama very nervous (heart rate at 230 – no thank you!), but he has been resting well for the last hour or so. 

We were just told we are being transferred to the regular pediatric floor and will continue our hospital stay there. This is fantastic news – I knew he was a brave little warrior 💙