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 💙

Everything went really smoothly and as planned. We just spotted him being transported to his room, and he was already making his adorable little crying noises. Can’t wait to be in his room with him!

We are in the PICU for now, downtown Mercy. 

We fiiiinally got an update. 

Surgery is almost done, and the doctor will be coming to talk with us soon!!! ❤️

Kiran was just taken back for surgery. We made it through pre-op, and the surgery board says he’s being prepped now. 

This is the hard part. The waiting. 

My dear, sweet Kiran,

It is so easy to love you – and so scary. My heart is full; you have filled it with your smiles, your enthusiastic chatter, your urgent cries, your snuggles. Because of this – because I love you with all I am – I have woken up every day this week with anxiety squeezing my heart. 

Logically, everything will go smoothly tomorrow. You have proven how strong you are already, by being discharged from a second case cardiac cath on the same day.  You don’t mess around. You are one tough little fighter. 

But. 

It’s that but that scares me. It is all those what ifs swirling around in my mind that make me take extra time to rock with you this week. That make me pause and hold you tighter every chance I get. 

I never want you to doubt how much you are loved. I never want my fear to keep you from living your little life at its fullest capacity. 

I have to come back to your theme song, chosen in the womb:

“Give em hell, turn their heads; gonna live life til we’re dead. Give me scars, give me pain; then they’ll say to me (say to me, say to me):

THERE GOES THE FIGHTER”

You are a beautiful kid, and your mama loves you tremendously. 💙

I am sitting in my son’s room, pumping his last bottle of the day through his NG tube while he sleeps. 

I am so done with the NG tube. It is time to get the G tube. I know this. We are ready. More importantly, he is ready. He is so frustrated by the tube in his nose and the tape on his face. It’s just time. 

Selfishly, I don’t want to go back into the hospital. We haven’t been admitted to the hospital since January. We have been so incredibly lucky. 

I dread packing for the hospital. I dread having Kiran hooked up to all the wires and machines in the hospital. I dread the waiting during surgery, the anxiety I am sure to feel. I dread sleeping on the uncomfortable couch, hearing every alarm, waking up every time the nurse comes in. 

It is for his good, and it is a necessary next step. But I hold so much dread in my heart for next week. I look at him sleeping peacefully in his bed at home, and I want to weep. For him, for my husband, for all who love him, for me. 

It’s what I’ve always wanted to be.  Since I can remember, the only thing I could say with absolute certainty that I wanted in this life was to be a mother.  And this year, I get to celebrate having the most amazing little boy in my life.

Motherhood is not what I expected.  That is the understatement of the century.  I could have never predicted my life looking like it looks.  I would have never thought our days would be filled with medical appointments and therapy sessions.  I would have never guessed I’d be excited to learn he’s reached half of his four month milestones at six months of age.  I never would have imagined I’d be planning hospital stays – never thought I’d become an expert at what to pack for these stays.  I never thought our normal would be to have our baby hooked up to a machine every night, wearing a brace on his feet every night, having a feeding tube constantly taped to his face.

It is not what I expected, but it is everything I dreamed of.  The love I feel for Kiran is beyond any kind of love I have ever felt before.  If I could take on his challenges for him – if I could somehow take all of his pain upon myself – I wouldn’t even need a second to decide to do it.  I would jump in front of a bullet for him.  I would give up every comfort of this life if I could just make him healthy.

So – yes – motherhood is hard.  Being a mother to a medically fragile, special needs child is extremely hard.  I never sugar coat this fact, and I never will.  But I will also never forget – I will always come back to – it all being worth it.  Kiran is worth all the hard in the world.  I am so amazed by him every single day.  It takes so much effort for him to simply stay alive – to breathe, for his heart to beat – but he still manages to smile and laugh and talk to us.  He still tries to do all the things his mean mommy makes him practice, like tummy time and sitting.  He is just a strong little man.

I am just so darn lucky I get to be his mom.  I am thankful.