Thursday, February 10, 2011

Day 279 The firing line


Been in the hospital since 7 am this morning. Had a terrible night with you, Miks. From 12h30 til 4:30 you cried. And cried. And cried. Did you know you were having an op today? Were you saying you didn't want to? Eventually I asked your nanny to come in and watch you for an hour so I could get just one hours sleep before I had to get up and get ready for the hospital.

I can't stop crying this morning. At everything. And nothing.

You've been in theatre now since 10:33. I've been told the procedure will be 1 1/2 hours.

The waiting isn't fun. I think I'm scared. All so silly, really, because the op itself isn't major. But here I am with tears running down my cheeks. Feeling silly. A bit shaky. Have a knot in my stomach and throat that makes me want to be sick. So overboard I am sure.

I hated seeing you go to sleep under the anesthetic.

I'm scared.

A video clip of you before the op: You were already unhappy here... this is one of your moans that I hate the most... it's a soft, gentle, croaky, SAD moan... makes me sad!


Well, the operation only lasted an hour... when you came out you were already awake, and desperately hungry! It was 12 o'clock before the nurses finally fed you (they're so darn slow there.... it was frustrating me to no end!)... 9 hours without food! Shame... poor precious girl.

You have been running temps of over 38/ 39C. Surgeon said it's to be expected, as is the crying (and boy are you crying)... after much fighting, they eventually gave you more pain meds, so you fell asleep.

I am at home now- and you're still at hospital. I hated leaving you, but obviously had to come back for the boys. Plus, I am in desperate need of a nights sleep... I am no good for me, OR for you in this state!

It's been a hard day. You are remarkably strong... where do you get that from? I am not so. I know it's for the bigger good... but I hated seeing you in pain, and running temps like that (you NEVER runs temps!!). Plus, and maybe I am reading too much into this, but I always get the feeling that because you're not a "normal" baby, you get treated like a "thing". Not quite deserving of the cooing and ahhing, nor the full attention that other babies get, because they can scream the house down. The thing is, although to everyone else your cry is gentle and soft... I know it as your hysterical cry... and I hate worrying that the hospital won't know the difference, and therefore won't give you the attention that they might another baby.... I have said this so often: it is my greatest fear: that you would suffer. It would quite simply destroy me.

Anyway, as ops go, it went well. I should be celebrating. But I also know we're not completely out the woods yet.... so I am holding off on popping the champagne just yet (although, after today, a glass would go down well!)

Thank you for being so brave, Miks, when I am so weak. Sorry that you're hurting. Please know that my desire is to help you, not hurt you. I love you, and all I pray is that you are not in pain, and that you rest well... because I have no doubt you're just as exhausted as me.

I love you baby girl. Good night. Mwah! Mwah! Mwah!

A pic after the op... look at that rib cage! You can see the Mic-Key peg... really quite neat... And shame, you were half asleep... poor noonoo


  1. You have every right to be scared! Watching your little one go under anesthesia isn't easy, no matter the risk.

    I had trouble sleeping last night. I just couldn't stop thinking about Miks and praying.

    Hoping all is well.

  2. Thanks Jill... looking forward to a decent nights sleep (hope I am not hoping for too much)

  3. Hi Taryn

    I believe you live in Ballito. I am also in Ballito and have a special needs little boy called Jason. Jason also has a feeding tube (a mickey) which he has had since September 2008. He hasn't eaten orally since then.

    Jason has also had a nissan for his reflux which they did the same time as the mic-key.

    I just wanted to let you know that if you need any help or assistane with tube feeding, formulas etc. I would love to help you. I know having a feeding tube is very scary and you don't get the much needed help!

    If you would like to be in touch, please let me know. Jasons website is and you can contact me there.

    I trust little Mikayla is doing ok today and praying that her temperatures settle.

    Big hugs to you!!


    Jill Long