I. Am. Exhausted.  It’s that kind of exhaustion you feel all the way down to your bones.  It has been a day.

First of all, Kiran was awesome.  He had a few moments of fussiness at the airport (our flight was delayed a bit, and we went plenty early to have time to handle any snafus), but he was a total rockstar on the plane.  He slept for most of the flight and when he was awake, he just chatted happily and quietly.  I don’t know how we got so lucky to have such an easygoing dude, but I will gladly take it!

So.  There are two of us – and a baby – so imagine wrangling a huge bag (to check in), a good-size carry-on bag, a camera case, a briefcase, a backpack, a diaper bag, a stroller, and a carseat….thankfully, Arif was smart enough to buy a cheap cart with wheels and we also found the joy of the smart carte….Needless to say, getting on the hotel shuttle this morning at crazy o’clock was made a lot easier with the nice old gentleman helping us with our bags.  Of course, our checked luggage was overweight…by 6 pounds.  We managed to get it to 51 pounds, and the agent took pity on us.  Fun start.

TSA wasn’t as bad as I thought, but it did take some time.  We are TSA-pre so no line – thank goodness – but they had to meticulously check the carseat and Kiran’s premade formula and liquid medication.  Luckily, we didn’t have to argue to keep any of it.

So.  We finally get to board the plane.  We find our row.  We get all of our bags situated, and Arif finally gets the carseat installed.  Kiran is buckled in.  We are settling in.  I am finally starting to relax just a little….and the flight attendant comes and tells us we have to move.  Apparently you can’t have a carseat behind an exit row.  At this point, everyone is on the plane.  It’s boarded.  They have to find a couple lucky people (we had splurged and bought the extra legroom “comfort” seats – we figured we’d need the space) to trade us for regular seats….

Talk about stressful.  I really wanted to make an announcement that it wasn’t our fault – we weren’t the ones holding things up – the flight attendants really should know airline policy.  In fact, considering Arif booked on the phone with an agent from Delta, they should have known not to put us in that row.  To top it all off, as we are moving everything, I realize Kiran stinks.  Badly.  I was told I had to hurry … hm … you try changing a fussy baby in an airplane bathroom for the first time in your life while in the middle of a very stressful situation.

Needless to say, it took my heart a long time to start beating normally.  I will say this: the flight attendants BENT OVER BACKWARDS to make it up to us the entire trip.  They were very attentive and very pushy with free snacks and made sure we were well taken care of.  I applaud them for that.  I still plan to write a letter to Delta.  Now that I’m a heart mom and a HUGE advocate for CHD awareness, I seem to have a bug for this kind of thing.  I think it’s very important – given that safety organizations are now saying the safest way to travel with kids is to buy a seat and put them in a carseat – that all airline employees know the rules and regulations.  We really didn’t need the added stress today.

All of that being said, we kicked butt at the travel thing today.  We really did.  All in all, though exhausting, it went pretty darn smoothly.  Many things I feared didn’t happen – and the things that did were things I hadn’t even thought to worry about!  And another win – the rental car company gave us an SUV for the same price as the midsize car we had reserved.

Arif is out picking my parents up from the Caltrain station right now, and Kiran is just waking up from his nap.  I have things pretty well unpacked and organized in the airbnb house we are staying in for the next eleven days.  Looking forward to just relaxing for a bit and then getting everything ready for our big day tomorrow.  Next step: Lucile Packard Children’s Hospital.  Tomorrow, we meet the surgeon and go through our pre-op appointments.

 

 

I have been wanting to write, but I haven’t known what to write about.  How do you put into words literally dozens of different emotions swirling around inside you?  I have been in as deep of avoidance as I possibly can be, while packing and preparing for a trip I never wanted to have to go on.

Today, we are in single digits.  It is 9 days until surgery.  And sometimes, I feel like I can’t breathe.

I prayed, for the first time in years, this week.  All I could muster, while on a walk with Kiran, was saying (out loud, mind you): God, I don’t like Your plan for my life.  If you really have a plan, I don’t like it.  I don’t like Your plan.

And then church this week was all about God’s plans for our lives.  Of course.  I’m trying to listen.

When people say “God has a plan for you.” or “God has a plan for Kiran.” to try to be comforting, all I can think is: Okay, but we don’t know what that plan is!  What if His plan doesn’t coincide with my desires?  What if His plan is for my son to have a short life?  Or an even more difficult one with added complications?  What if we go to California a family of three and have to make the difficult journey home a family of two?

It is easy to say God is good when He does miraculous things on this earth.  It is easy to say God is good when you SEE the good.  It is a lot more difficult to say God is good when you watch your son struggling to slow his breathing after practicing sitting up for ten seconds.  It is hard to say God is good when you are making the all-too-familiar drive to the local ER.  It is hard to say God is good when you have to hand your son over to a surgeon …

Which is still something I cannot imagine having the strength to do.  I have been told enough by many how strong I am.  I agree.  I was forced into a place of strength.  I have found reserves of it inside me I didn’t know existed.  Love is a powerful motivator.  But I still think, in 9 days, someone will have to pry him from my hands.

Then I remind myself: By giving him to the surgeon to have this surgery, I am giving him a chance at life.  Yes, there are scary complications that can occur.  Yes, he could die.  But if he doesn’t have this surgery?  He will die.  It is a certainty.  It may not be tomorrow or a month from now, but his body will give out.

So.  I will cry.  I will hug him hard.  I will live with the tightly wound ball of anxiety pressing down on my chest.  And I will hand him over, so that his heart can hopefully be repaired.  And I will love him, recklessly.

We are in the ER. Kiran is okay. I am sitting in a room, waiting for Arif and Kiran to get back from x-Ray.  My heart hurts. I have to smile – laugh to myself a little, even – or I will fall apart inside my sobs. 

We learned how to change out the g tube this morning. It has been three months since Kiran had the placement surgery, so it was time for us to learn how to change it out – it is done every three months. The nurse practitioner explained the process, Arif watched, and I did it. It went beautifully. The only disconcerting part was how much stomach fluids came up out of the hole when I took the old tube out – I wasn’t quite expecting that much drainage.

So tonight, when we were driving from our first stop on our night out to our second stop, when the sitter called and said his tube came out, I thought – between the panic bubbles rising up my throat – ok, we got this. At least we know what to do now. 

Right. 

Because the tubing attachment got caught and the tube was yanked out, the hole was swelling. His crying didn’t help. Not only could Arif not get the tube in, he couldn’t get the smaller tube in either. I did call our home health nurse directly (we love her – I normally wouldn’t – sometimes you have to take advantage of knowing you’re one of her favorite families and just skip protocol), and her recommendation was not to waste anymore time and just take him to the ER. 

The ER isn’t the best place for him 22 days before open heart surgery. We didn’t have a choice. They had to use dilators to stretch the hole in order to get the tube back in. But it’s in. The x-Ray is to verify placement … It will be the second time this has been done today. 

He was in so much pain. The poor little man. We played his “magic song” – When I’m With You by JJ Heller – I laid beside him and sang to him and held him the best I could. It was hard. It’s always hard. 

I was overwhelmed already today. It pales in comparison to what my brave little man constantly faces, but the realization of all the things I still have to do before we leave started pressing down on me today.  So. Overwhelmed. Paralyzed. Fearful. I was in need of a night out. 

But all of that faded away – not a single bit of it mattered anymore – when we got the call from our sitter. When that little boy needs us, we are there. I wouldn’t want anybody else lying next to him, even when it’s the hardest thing to do, to watch him feel pain.  

I will rip my heart out for this kid, and I do, every day. I won’t stop. Ever. No matter the cost. 

This is the surgery Dr Hanley will be performing on Kiran. The first step will be to address his MAPCAs (major aortopulmonary collateral arteries). Dr Hanley generally does this surgery in the 4-6 month range, but because Kiran has been so clinically stable, he got the benefit of growing and will be 10 1/2 months old on surgery day. 

As with most things on our CHD journey, it is a double edged sword. Because he is older, his body has had more time to continue to compensate for his special heart, so he has been creating more and more MAPCAs, making that part of the surgery more difficult in some ways.  I would like to think it is also beneficial, in that Dr Hanley will have more arteries to choose from to make better pathways from the heart to the lungs. 

If this part of surgery is successful and the pressures in the newly formed arteries are good, a full repair can be done on Kiran’s heart. This means we would hopefully not have to have another open heart surgery in the next several years – perhaps ever – depending on how his journey plays out. 

What it doesn’t mean is that Kiran will be fixed or cured. Full repair is misleading.  CHD is a lifelong journey. Kiran will always need to have checkups with a cardiologist and will likely continue to need help with feeding and development. There will be cardiac catheterization procedures in his future. We may not be able to avoid other open heart surgeries. We just don’t have the answers until we keep taking the next steps. 

But our medical journey will not end on surgery day. It will just be beginning. This is a big step, but it is just the next step for Kiran and our family. 

This video is a great look at the surgery that will be performed, and it really helps the non-medical mind understand his condition a bit better. 

https://www.youtube.com/watch?v=2QKwmy5BfUA

Static: lacking in movement, action, or change, especially in a way viewed as undesirable or uninteresting.

Being stuck in a state of limbo has been a consistent theme in my life.  I always have to write about it.  If I were to look back on the many diaries, journals, and blogs I have written in, I am sure I would find at least one entry/post about limbo.

I hate being static.  I hate waiting.  I am the most impatient person on the planet.

We have 27 days until surgery.  The paradox I am stuck in is I want time to   s l o w    d o w n while simultaneously wanting surgery day to be here already.  My brain knows from the experiences I’ve had in the last year that, though surgery day will probably bring about the most significant changes thus far, it may not bring about the changes – or the answers – or the life – I desire.

I always get so impatient and so anxious because I feel like this next appointment or the g-tube placement or finally getting a surgery date will somehow make this whole “life with CHD” thing better….

I don’t want to get stuck thinking this surgery will be the cure-all.  I know CHD is a lifelong condition, and I know Kiran will never be cured or fixed or healed.  And we don’t even know if they will be able to do the repair on his heart until they are in there doing the surgery.  If they only address the MAPCAs and are unable to repair his heart, I have been told we may not see a significant change in Kiran’s energy level.  It is heartbreaking to think about.

How do I stay optimistic but protect myself from great disappointment?  How do I live inside this moment I have with him while impatiently waiting for our trip to California?

Life just feels put on hold, and it’s hard to make it feel any other way.  27 days will go by in a flash – and yet surgery feels like an eternity away.

This season in our lives is about to come to a close.  The hospital where Kiran was born sent us home with all kinds of information about “interstage” – this time period before what we have always known is a necessary surgery.  We have made it this far.  Nine and a half months.  More ER visits than I cared to keep track of – I would say a handful, minimum.  Two hospitalizations, after his initial stay in the hospital from birth, one unplanned, one planned.  One cardiac catheterization, one surgery to place a g-tube.  A million and a half pediatrician appointments, cardiology appointments, gi appointments, orthopedic appointments, home health nurse visits,  vision appointments,  physical therapy sessions, visual therapy sessions, occupational therapy sessions….

We have made it.  As his parents, we have done our job during this interstage period.  We managed to make it nine and a half months.  Our precious baby boy is alive.  He is gaining weight.  He is developing, slowly … but steadily, at his own pace, in his own way.  He is stable.  He is happy and smiling and sweet and oh.  so.  precious.

I know I have written about this before, but we have developed a rhythm to our days, our weeks…we have become so good, now, finally, at incorporating Kiran into our lives.  We have figured out how to quickly pack up everything he needs to go for a lengthy visit at Nana and Papa’s or a friend’s house – or to go to an appointment two hours away.  I can pack his diaper bag for a quick outing without even thinking about it – with or without a feeding, depending on the time of day and length of outing.

I have finally, finally grown comfortable in this “interstage” period.  I’ve got this down.  Even with all the changes that have been thrown our way – with all the new skills I have had to learn.  Today, right now, I am confident and comfortable in caring for my son.  I am loving summer.  I love going out to events, taking him for walks, being less worried and crazy about germs and illness….

I.  Don’t.  Want.  To.

I don’t want to go back to hospital living.  I have hardly even gotten a taste of it compared to what is to come with this surgery.  I am not looking forward to it.

I don’t want to go back into cold and flu season.  I don’t want to have to be stuck inside, unable to even take him to the grocery store because a cold, especially when recovering from open heart surgery, can absolutely land him in the hospital.

A billion emotions pass through my body every single day as we approach this surgery.  Today, right now, it’s that I don’t want to give up this beautiful life we are living with our son.  I am scared of how it will all change.  I am scared of how HE may change.

I am trying to embrace the “I don’t want to” feeling by enjoying every moment.  I have slowed down with Kiran a lot the last couple of days.  I have savored the laughs and the snuggles.  I have said to hell with the housework and chores – I go like crazy when he’s napping, but when he’s awake, I’m enjoying him.  We are being intentional about giving ourselves some nights out to recharge – and also, honestly, because I don’t know how long it will take post-surgery for me to feel comfortable leaving him with a babysitter again (Even though, as I’ve said before, we have the best babysitters – and they are new nurses, no less….)

And – tomorrow, we are taking Kiran to the zoo.  I have absolutely no idea how much he will get out of it, but I have been wanting to take him.  I want him to have that experience.  And one of these soon days, I am finally putting up his little pool.  I still haven’t gotten out to buy a new swimsuit but so what?  If I have to sit in it in my clothes with him, I will.  I want him to splash and play and laugh and know what it’s like to sit outside on a sunny day in a cool pool.  On his ten month birthday, (I got the ok from the pediatrician), I am letting him try a bite of vanilla ice cream.  I don’t know why these are the things that are important to me, but I want him to experience ice cream.

I guess you could call it a bucket list.  It is true it is wrapped up in and around my fears of losing him….

But no matter what, I want to experience life fully with him.  I want to teach him to see and taste and feel and hear and smell with everything he is.

We are going into a difficult season.  We are entering into a new world.  None of us will come out of this experience the same.  I don’t pretend to know how we will be different…I just know we will be.  So I am going to savor the moments right now, when we are in this season.  I am going to do my best to make sure we are all entering this new season well-rested, filled up with joy, and as strong as we can be.

This song, The Fighter by Gym Class Heroes, Kiran’s song I picked for him in utero, still says it better than I can.  Everything I am trying to say can be summed up in one line, like it or not: “Gonna live life till we’re dead.”

I love that line.  It’s what we should all be doing.  It’s what I have always been striving for.  To LIVE LIFE.  33 days until surgery.  We’ve got a lot of living to do.

 

September 7.  A Wednesday.  A day I’m looking forward to and a day I wish would never come.  A day that is taking weeks to plan for.  A day that will affect our lives for weeks/months/years to come.

My grandson, Kiran, was born with a congenital heart defect.  His is a critical, complicated diagnosis.  We have known he would be facing open heart surgery since before he was even born.  Now that day is almost here.  September 7.

I am so grateful to my friends and co-workers who have rallied around us.  So many of you are faithfully praying daily for Kiran as well as praying for those of us who love him.  I’m touched by how many of you regularly ask me about how he is doing, how Holly and Arif are doing, and even how Denny and I are doing.  It is hard…so hard.  I wish with every fiber of my being that September 7 did not have to happen.  But it does…

Please join me in praying for September 7.  Pray that Kiran will remain healthy before the surgery.  Pray that our planning and our travels go smoothly and timely.  Pray that Holly and Arif will be on the top of the waiting list at the Ronald McDonald House, or that other appropriate, inexpensive housing is found.  Pray for Dr. Frank Hanley and his surgical team, and the staff of Lucile Packard Children’s Hospital at Stanford University.  Pray for wisdom, for clarity of mind, for steadiness of hands.  Pray for the stamina they need for what we know is a 12-14 hour surgery with no respite.  Pray that the team are able to successfully reroute the misdirected/malformed blood vessels to restore the normal flow from lungs to heart, so they then can repair his heart in this same surgery so there doesn’t have to be another one.  Pray for the nurses and the staff in the PCICU that will minister to Kiran after the surgery.  Pray that they will be observant and diligent in his care.  Pray that Kiran will recover quickly with no complications.

Pray for peace and comfort for Holly and Arif, Denny and me.  We need to feel God’s presence and we need you to pray for us when we won’t even have the words.  Please send us texts, emails, facebook messages on September 7.  I know we will appreciate the distractions as we wait for what will seem an eternity.  If you donated for a Keen on Kiran wristband, please wear it on that day and send us pictures…and thank you again for supporting him in that way.

If I could, I would give him my heart…but he already has it.

Philippians 4:6-7 “The Lord is at hand, do not be anxious about anything, but in everything by prayer and supplication let your requests be made known to God.  And the peace of God, which surpasses all understanding, will guard your hearts and minds in Christ Jesus.”

Thank You for your prayers, care, and love – we are blessed.

Giving God the Glory,

Jeri aka Nana J