Kiran has been sweating.  Initially, we were pretty sure it was because he was coming off the Ativan (the mild sedative we were working on slowly withdrawing him from because the little turkey had a rough time coming off the morphine and versed he had in the hospital).  But he has now been completely off of that for a week and a half.  He has still been sweating.  Oftentimes, he sweats around a feed – whether or not he is being tube-fed – so whether or not he is actually putting any effort in to eat.  But it also happens at other various times – sometimes when he is worked up, sometimes when he’s just resting.

I have been telling myself it’s not cardiac-related, because I don’t want it to be.  He has had tummy issues since his surgery.  His digestive system still hasn’t regulated itself, and I can tell he is struggling with the acid reflux and some tummy pain at times.  I was trying to make the sweating about that.  And maybe it is.  I can still hold onto that, a little bit.

Because his oxygen saturations, even during his sweating episodes, have been 98-100.  (I love that we have the pulse ox at home to spot check!)  He isn’t having any retractions with his breathing, his coloring isn’t changing….I wasn’t noticing any other cardiac symptoms, so it was easy to push it off as something else.

Until I remembered today I should also be paying attention to his heart rate when I hook him up to the pulse ox.  And his heart rate has been sitting in the 140s-160s.  This is high for a baby his age at rest.

I just talked to Dr. M, our cardiologist, and we have an echo in the morning to see if his heart is working properly.  It’s an important first step.  I am really glad Dr. M took my concerns so seriously and isn’t making ME sweat this all weekend long.  Also, for good measure – because it just makes me feel better – we are also taking him to see the pediatrician tomorrow afternoon, to get his tummy and everything else checked out.

I know it – I’ve said it – I’m now living it : There Is No Cure For CHD!  Our story doesn’t end with his “full repair” surgery.  It continues on.

 

It is like I had been holding my breath.  I had to put all of my physical, mental, and emotional resources into doing so, into keeping Kiran alive and thriving, getting him to his life-altering surgery.  When I have to be strong, I am strong.

I feel like I am living inside the exhale, especially this last week.  My physical body responded by contracting a nasty cold.  My mental and emotional self responded as well.  I have struggled with my well-being more this past week than I have throughout this entire journey.

And with that comes the guilt.  This process, our journey, has been difficult, true, but we have been so incredibly lucky.  We were lucky to bring Kiran home as a newborn.  We were lucky he was able to remain stable until he was 10 1/2 months old.  We were lucky the surgery was such a success and the full repair was possible.  We were lucky he completely rocked his recovery, and we made it home far sooner than any of us anticipated.  We are lucky he is alive and with us.

Bottom line, my brain incessantly chastises me for struggling.  I have everything to be thankful for.  I have every reason to celebrate.  I have every reason to be filled to the brim with joy and excitement for this next chapter in our story.

Instead, more than anything, I want to stay in bed with the covers pulled up to my chin.  I find myself crying as often as I was in the days approaching surgery.  I do my best to push past the grey, but I feel engulfed in it.  I am in a period of darkness.

I am not doing okay, and I don’t know exactly why.

As much as I try to prepare my mind – and heart – for the reality of the rollercoaster that comes with a congenital heart defect, I still find myself struggling.  I knew – I wrote about the fact – this heart surgery wouldn’t just magically fix everything.  Kiran is not going to just start eating like a normal kid, he’s not going to start crawling tomorrow ….

Feeding.  This has been a major, major source of frustration for me.  His entire life.  There must be something very primal about a mother’s ability to feed her baby, because I have probably cried just as many tears over feeding issues as I have over the very scary heart stuff.  He fed really well for a few days, and then he just…stopped.  He is back to either flat out refusing his feeds or only taking 10-20 ml by mouth.  Basically, we are right back to where we were before heart surgery again.

I don’t really know why.  I have my theories.  Teething.  I’ve cried wolf on that one a few times, but I honestly think there is a tooth coming any day now.  Aspiration.  When he is focused on eating, he does fine.  When he plays and messes and tries to spit his bottle out, I think the milk tries to go down “the wrong tube” and he coughs and gags and cries.  I plan to request a swallow study again – we see the pediatrician Wednesday.

I also plan to move forward with the feeding clinic evaluation at Childserve.  It can’t hurt, and I need a plan in place or I will go crazy.

I keep reminding myself of these things: Just because he now physically CAN (heart-wise) take a full bottle doesn’t mean he WILL.  It also doesn’t mean his mouth/throat muscles are strong enough to do so consistently.  It doesn’t mean he won’t be stubborn because he knows he will get full either way.  This will be a rollercoaster.  I have known that, in my head, from the beginning.  But it’s hard to not let your heart get carried away with your hopes for your child, especially when you see him finish half or more of his bottles a few days in a row.

Also, what a beautiful problem to have!  I never lose sight of that.  He is a survivor.  He rocked his recovery.  We are HOME, and we aren’t even at three weeks post-op yet.  Isn’t it amazing and wonderful that we are in a position that I can worry about feeds.  It doesn’t lessen the worry or the frustration – they are very real, and it is the reality we are living in – but it does help me keep things in perspective.  We are blessed with this boy.

And now we move to the lesser tough stuff.  Feeding.  Development.  Vision.  Feet.  Genetics.  All the things we had to put off until this surgery was over.  The journey continues, and it will forever.  This surgery was a big step – an important step – and a truly huge chapter change…but I have to remember this is still his story.  There are many more long, frustrating, joyful, amazing chapters to be written.

And I still can’t control a darn thing.

Except loving him and keeping perspective.  The first one is easy.  The second one, I am struggling with.

Kiran had his post op appointment with our local cardiologist today.  He looked and sounded great!  Pulse ox immediately read him at 100 saturation.  He got the last stitch taken out of one of his chest tube sites and got to wean some of his medications.

I stopped his ativan wean – and have given tylenol instead, to help with the transition – at 2 am this morning.  He seems to be doing okay, so I am hoping to not have to give him any more doses of that.  Dr. M. put his lasix back down to twice a day and thinks we should be able to get him off of that in a few months’ time.  Lasix dropping down means the med we were giving to help protect potassium (lasix makes him pee it out) can also be stopped.  This means we are on a much more manageable medicine schedule!  It also means in six months, he could potentially be down to just his acid reflux med and eye drops!  Big dreams!

We were told (again) that we no longer need to have Kiran on the pulse ox machine at home.  Kiran has been hooked to the pulse ox every single night since the day we brought him home from the hospital.  It is terrifying to actually think about putting him to bed without it.  But we have decided tonight is the night.  No more parental weaning.  Ripping off the bandaid.  Big changes!

He has backed off quite a bit the last 24 hours on how much food he has taken orally, but I think he had a mild case of constipation.  That seems to have corrected itself this morning, so I am hopeful he will continue to make good progress with eating.  We discussed a little bit today about a loose plan to eventually get him off the g-tube, but we will get further direction from our pediatrician and gi doctor.

We also learned today that Dr. Hanley himself called Dr. M to fill him in on the surgery in detail.  Dr. M said that never happens.  I continue to be incredibly impressed with Dr. Hanley’s level of care along with his incredible experience and skill.  We definitely made the right decision taking Kiran to Stanford.  He is doing so well with his recovery!

 

Kiran and I were just chatting about his upcoming birthday. I can’t believe he will be one in just one short month!

For those who know Kiran, he is a very social kid. I am not sure who he gets this from. In any rate, he really hopes a lot of his friends and family will join him two days after his birthday to walk (or run) in the Superhero Heart Run in Des Moines, October 23rd. 

http://www.superheroheartrun.com/

There is a $25 registration fee. Directly from the website: “Proceeds raised from this event will be utilized to provide support, education, research and create awareness for CHD, the most common birth defect worldwide. Families in Iowa will benefit directly through the programs and services provided by Help-A-Heart and Heart Heroes, Inc.”

It is because of events like this and generous people supporting these worthy causes that Kiran was able to have such a successful surgery and recovery process. But he is not cured. There is still no cure for CHD, and there is a great need for more research and greater awareness. It is one of the main reasons I write this blog (The other being, if I didn’t, I’d be in a psych ward somewhere right now.  I am only slightly joking.)

If you are unable to join us for the walk (Be sure when you register to join Team Keen on Kiran!), we will also be fundraising for this great cause.  You can contribute here:

https://www.crowdrise.com/keen-on-kiran/fundraiser/
Think of it as the best birthday gift you could give this sweet boy: 

I am sitting here, tears of joy and relief streaming down my face, for a reason most parents would find laughable (but not a heart parent – never a heart parent): Kiran just took an entire bottle by mouth.  135 mls. 

Prior to his surgical repair, he was taking 10-30 mls orally – more often than not, he was in the 10-15 ml range each feed. And he would be sweaty and tired, even after taking such a small amount. 

We didn’t do much oral feeding in the hospital. He wasn’t interested. We did enough to ensure he didn’t seem to be aspirating, but we mostly used the g tube to let him rest and heal. He has never eaten well in a hospital setting anyway. 

At the hotel on Saturday, he took 110 ml. I was blown away. Then he took 70 ml at his next bottle. Travel day was a little wonky yesterday – but so far today, he has done 100 ml, 80 ml, and now 135 ml. 

We have a long way to go. He still gets 3 bottles worth over 8 hours at night through his g-tube. We will have to figure out a good nutrition plan that he can handle. It’s all overwhelming for me right now – I will need to work with his pediatrician and GI Doctor and cardiologist to make sure we do all the right things for him. Especially as we approach one year of age, switch to whole milk, introduce more foods….

But man. This is a VICTORY!  And it is such validation for me. I was always so worried, especially with his feeding issues, that I was missing something. That maybe it wasn’t heart related at all, and I was failing him by not understanding the real problem. It seems it was heart related after all. It was an energy problem. And he’s ready to eat. 

And I’m just sitting here sobbing about it. ❤️

We are in the car on our way from Minneapolis to Des Moines. We flew bright and early from San Francisco.

I dislike the actual act of traveling anyway, and it becomes a lot more stressful with a precious baby boy who has to be lifted a certain way because he is still healing. So thankful the airplane portion is over.

Much like I lost it and sobbed once we heard from Dr. Hanley the surgery was a success, I found tears spilling down my cheeks on the plane ride as I looked at Kiran next to me. Going into this, we didn’t know what the trip home might look like. I was so relieved – overjoyed – to be bringing my baby home with us. 

We saw so much of Kiran’s normal personality yesterday. We took a couple long wagon excursions, and he loved it!  Time to dig out the wagon at home. I see lots of bundled up wagon rides in our future!

They started the wean on his Ativan at 9 pm last night. They went down on dose as a first step. He did really well!  He slept through most of the night – I was sleeping in the room with him again and only woke once with mild fussiness. Night and day difference from the night before. 

Hopeful my next post will be titled: “Busting Out of Here”!!!!!