Thursday, 29 July 2010


Its amazing how rewarding smiles are. Especially when you are4 months along and there haven't been that many along the way. That's about the only good thing that's come out of this op - is that she's just been smiling a lot ever since! Its adorable. It happens anytime - even just before/after/during a cry!
God is good for giving us something rewarding during this recovery stage...
Sent via my BlackBerry from Vodacom - let your email find you!

Friday, 16 July 2010

Day 8 - discharge: life in the ward

The things I can't believe:
- She gets woken up ALL the time for meds and things. Nothing like at least attempting to do it around feeding times. Just as she's falling asleep,its time to wake her for something else

- I am in a private room (because cardiac patients are at too much risk being in the general ward-thank heavens) and I cannot imagine not being. Its bad enough in here-the noises unbelievable,and that's without the construction that's going on around us (literally drilling and hammering all day...)-something about the aircon in the building. The ward is like being in a dormitory,people milling around everywhere,kids screaming,nurses being I literally hardly ever leave the room! Feel like a prisoner!

- She's been so set back by the op. I'm hoping some of it is 'just for now' and she'll just one day be different,but I think I'm dreaming. She has zero neck strength-back to newborn where full support always needed. Her limbs have less strength than when she was born-particularly the left side where the cut is. Her arm has very little strength and she doesn't really move it. When I change her nappy I realise how little strength she has. It will be interesting to see how quickly her physical strength comes back.

Then there's my worst nightmare-me getting sick. I pray that she doesn't get sick,it would be lethal to her now. Need sleep to get better...and in this place that's a problem.
**i'm sick now,@home,mom2the rescue. She's even spending the night there tonight**
She hasn't picked up any weight,so celebrity surgeon bit nervous to send her home. But cardio comic says that its not an issue and she can go home. Who knows!!!

Day 11 + Day 12
She is finally discharged. Granny stayed at hospital for over a day,and she was discharged to go home with granny-as yes,I'm still not better. My dry cough has now turned into a productive cough which isn't good. Anyway,we getting her back this afternoon (day 12-hope I'm ok by then),and getting a night nurse in tonight. Can't risk me not getting better and simon is on the verge too,so nurse to make sure we don't have to get up 4times and that's without her crying.
She's been discharged with 10medicines,and is generally very sleepy and when she is awake is generally miserable. She is still pretty sore (not sure if I have noted how big her cut is!!!)- but we have to start weaning some pain medication,so not sure how we going to start that.
So yes,out of hospital and now the long road of recovery continues at home. Its going to take a long time to get her strong again - but she's home... :)

Monday, 12 July 2010

ICU Day 3 - Day 7

ICU is where I live at the moment. It is amazing how some days there are such big improvements,and others its just so slow. The big improvements are when the physical machines,pipes etc become less-in one day her ventilator came off (wednesday,day 3),the next day she was off her oxygen by 9am. But now,we're struggling with her chest,has a collapsed lung and chest infection. Its amazing how slowly she improves with all the attention she's getting(physio twice a day, anti-biotics, suctioning). She sounds awful,as though she's been a heavy heavy smoker for 40years.
Its been very tough watching her so upset,sore and everything else and not be able to hold or comfort her. Just stand there and try your hardest not to get upset! But she seems so helpless just lying there in this huge bed hoping she'll recover.
But,the pictures tell story way better,so here a few to see the improvement...

First hour after the op, Nanette looking after me for day 1 and day2. My bed and machines keeping me going...

Hour 2: very drugged, eyes closed with ointment, bit swollen
tummy time is good for keeping fluid moving around lungs
Day 3: Ventilator off, oxygen on...still very out of it but start to open my eyes more. All very swollen

Day 6: Very grumpy still, granny trying to cheer me up
Day 7: Still not so hot, but all dressed and ready to leave ICU

Tuesday, 6 July 2010

ICU Day 2

Were hoping she'd come off the ventilator today, but she didnt. So she's still very very drugged and sleepy. I enjoyed the few awake moments, was nerve-racking but great to see her little eyes open and to see her move her mouth and body a bit.

Her body is very swollen, particuarly her legs - from the fluids apparently. Her legs because she's elevated so I'm sure its all running down there. She looks like a 6month old if you look at her legs only! The physio came around today to help work on her lungs, and she had a little wipe down and we put some new bedding around her.

Its so hard - because there's nothing you can do, but you do want to be there. I eventually at about 4pm, found my comfortable little spot in the corner next to her bed and read for a few hours, just keeping an eye out for her and trying to be out of the way for the nurses. The ward has really filled up, so there's no spreading out and its very tight in there!

Day 3...who knows, maybe some of her own breathing. [@ the moment she's only breathing herself when she's awake, so we don't want her to get too lazy!] - and they're only giving her 15ml' every 3 hours! thats a little different to the 100 she was getting! My challenge is to keep up the expressing...Milk Bank here we come!!!

Truly amazed at how calm I've been, I just know that so many people are praying for us and I know that this peace is only peace that God can give. I am so grateful for not being a breaking down mother in ICU - for being able to enjoy her even in this state, to see the beauty below all those pipes, tabs etc - and to know that she's our special gift.

ICU Day 1

What a sight. Words cannot describe.

I can't even imagine having seen her like that without having seen pictures of other babies post op. So thankful for the suggestion by another mother,because without it the ventilator and pipes would definitely have been too much for me.

Its quite something being the childs parent and almost feeling like you're getting in the way and that there's nothing you can do. Those first few hours post op are quite overwhelming. The nurse literally every minute was either adjusting pressures,recording happenings but most of the time is responding to her readings by giving her 0.3 of this,0.1 of that-so she is continually been watched and responded to. A job with a huge responsibility. Quite scary to sit there and hear her talk about this dropping,the urine etc etc. Special K had weed a lot and they were concerned about colour etc!!! My special girl has always loved to wee!

She looked like a plastic doll. Seeing the nurse just move this completely out of it, floppy baby looks quite shocking. Her eyes are half closed with a vaseline type something rubbed all over them to prevent them from drying out. She has loads of tubes on either side of the groin,her hands are going to be wrapped up now and probably tied down,and then the ventilator skull cap(I like to call it) and her other monitors on chest,hand and the drainage etc from cut. War wounds I tell you - she' going to have lots of those.

Watching her lie there,with a machine making her chest rise and fall can only remind me of how fragile life is. How important it is to look after ourselves physically,but most importantly to live one day at a time, embrace God in each day and be grateful for each small thing. One day of a grumpy mood (happens to me often!!)is almost not worth it,as we don't know what tomorrow brings...

Monday, 5 July 2010

Pulmonary Artery Banding operation

Our hospital room makes u feel like you in an airport-this because we spend your life hanging around waiting...and sounds like an alleyway behind an asian takeaway joint-that sound and buzz of an aircon machine which gives off a very average feeling.

Strange that this sweet little girl knows nothing about what lies ahead for her-or maybe all the needles and tests yesterday started to give her the idea.

Was awful to be in the room next to where she was getting all her tests done. Then it came to taking some blood-as they need to prepare for possible need to do blood transfusion. I've never heard her scream like that-no injections,synergis or anything has ever made her cry like that. It didn't stop for about 40min.eventually the nurses come and say 'unfortunately we were not able to get blood'. So all that torture for nothing-i'm sure that after the first 5min they could have figured that out! Then they brought in another nurse (who apparently never struggles with these things!),to hear her being put through hell again-for her to also end up saying,"sorry". Then shift change,and the new nurses decide to get the person from the lab to try-luckily they only tried for about 10min! So so awful. Later,when changing her,I found about 3needle marks in each of her arms and two on her hand!!!the poor thing,no wonder she was so sore!!

Had the visits with the doctors (including celebrity doc-who by the way is very nice!),continual temp and sats tests,so all quite busy.

Had a look in ICU-only two little ones down there with the one being transferred out,so hopefully will be quiet there this week. Little K will be an incubator cos she's so small.

The thought of what lies ahead today is nerve-racking...but let me see how it pans out before I comment.