Thursday, August 18, 2011

Days 460 - 468 Here we go again...

So, we thought we were keeping your sickness at bay. Well, actually Miks we did really well. We even managed to re-inflate that collapsed lobe. I found our that the last time you were really sick you actually had LOBAL pneumonia. Apparently worse because it is concentrated in one area.. Hence the collapsed lobe.

Anyway, so we thought we were doing well, and then Sunday came. And your temps started going up. By Monday morning, your temps were between 38 & 39C and you kept vomitting up your feeds, and you sounded awful. So I whisked you off to see the pediatrician. He told me you had bronchial pneumonia, and sent me home with an extremely strong antibiotic, but everything we put in you (through your peg), you vomitted up. How is medicine supposed to work if you can't keep it in your little body?! By Tuesday morning your temp was around 40C! I phoned the pediatrician, and she recommended hospital.

You know, one of the things I hate most about your condition is how the medical community can treat you without compassion and any sense of urgency. I arrived at the hospital, and they did nothing for 45 minutes, even though you had a ridiculous temp, and you were throwing everything up. I wonder if they would treat a "normal" child with such nonchalance?

To cut to the chase, you spent two nights in hospital, and once you were holding things down, they said I could take you home. You're just down the passage from me in your bed as I type this. 3 out of 4 feeds you have vomitted up. Your vomit is a strange yellow colour, even though we've put nothing yellow in you. You have had 3 really wet stools today- one so bad i just threw away the clothes you were wearing along with the nappy... This for a baby that is always constipated! Your eyes.... Your eyes... Well... They're different. You have an almost glazed look about you. You're really sleepy. I keep getting this feeling like you're giving up. Like you don't want to fight anymore. I dunno. It's something about your eyes. And no smiling, and you're barely making a sound (SO not like you!).

Daddy goes away overseas for 10 days. The timing couldn't be worse for you to be sick.

You need to fight, baby. You need to fight.

Tuesday, August 9, 2011

Days 454 - 459 - Hide and Seek Video

Finally got to upload this video of Mikayla playing hide and seek with her Dad. She loves doing this.... and gets the cheekiest of smiles when playing :)

She's still pretty chesty. Thankfully it still hasn't progressed to her lungs... and we're doing all we can to ensure that. She's quite chipper though- and also has no temperatures. So given the circumstances, is actually doing very well.

I am however praying for little Lior, and his brave mum. He has bad pneumonia again. I just wish I could give Kim a big hug more than anything else. Our little babies are so small and fragile, and to see them fighting so hard is so heart breaking.

So, on this women's day, I want to honour all those amazing women out there that I know of (and those I don't), who give so much of themselves for their precious little special babies. Who love, and cherish every moment. Who would give anything to swap places. You are simply remarkable, and I couldn't have got this far without you.

Wednesday, August 3, 2011

Days 436 - 453 It's raining It's pouring

Mikayla is sick again! She has bronchialitis. It is thankfully not yet in her lungs, and we are suctioning, doing physio and nebulising to try keep it out. She is not as miserable as the last time... And is not in hospital, which is a relief. Of course, just to make things interesting, Josh is also sick. Hes been vomitting and has had diarrhea. We've sent off urine samples swell, but I am hoping it's just a 48 hour bug!

Was so frustrated, because when we took Miks to the hospital on Sunday to see a doctor, the doctor put her on "Asthavent" after I had told her she has heart lesions... Apparently this particular medicine pits pressure on the heart' and the Xray of her heart om Monday shows that her heart is bigger than when she was in hospital.. Now that could be due to the infection, or the medication, or signs of pulmanory hypertension.

Sometimes living in the dark somewhat, is very frustrating... But sometimes ignorance really is bliss.

Anyway, been a pretty chaotic household... Russ & I are pretty pooped!

Miks has been really cute.... She plays this game of hide & seek with us- she particularly enjoys doing so with her Dad. I have a lovely video of it, and will try post it tomorrow. She really is a sweet little girl... And like all little girls, she just loves her daddy! And of course has him wrapped around her little finger.