Can I have a moan

[Lottie86]

Please feel free to ignore i'm just having a bit of a day today as it's been 12 weeks since Iona was born and there is still no end in sight.

She is still in the hot cot and each attempt to turn it off has failed as her temp drops right down which results in her using all her calories to keep warm so doesn't gain weight and has no energy to be awake and she hasn't been allowed a bath for nearly 3wks due to going severely hypothermic after her last one (she went rather grey/blue and was a fair bit below 32C!).
When we have her out for cuddles she has to be wrapped in loads of blankets and we can't have her out for long or her temp drops right down.
She's also got hypoalbuminaemia so she's having to have loads of specialist tests done to try and find out why etc. It just feels like we're living on a knife edge all the time just going from weight checks to tests to test results and then back again

I just wish they could give us a guarantee that we will be taking her home one day. It's never nice to hear your consultant say to someone "If Iona goes home then she'll be going home pump fed etc etc"

I'm absolutely dreading next Friday as she's off to theatre for surgery which is being made 10 times worse by the fact it prob won't be the surgeon we know v well and trust implicitly.

I was really hoping by now she'd feel a bit less like the hospitals baby but she doesn't

 

[babyhopes22]

Oh you poor porr bugger...you must be having such a stressful heartwrenching time of it. Bless you. Looks to me like shes a right little fighter, i hope everything is ok and you get to take her home sooner rather than later. Chin up hun somethings giving her the strength to carry on her fight and i guarentee its from the love of her mummy xxx

 

[toothfairyx]

I'm really sorry to hear how things are for you . Keep going, you will get there xxx

 

[Marleysgirl]

Can you have a moan?

By all means - that's what we're here for

 

[ermm23a]

I'm so sorry. It sucks so bad when you can't do anything to help your baby.... I remember when we couldn't keep DS out of the incubator thing for long bc of body temp issues. I would just cry when we'd have to put him back up.... It's just not fair that we can't get to hold our babies like other moms do. It's not fair that our babies have to fight so much harder than other babies. It's not fair that our babies have to be poked and prodded and stuck with needles so much more than other babies.

Try to just take it one day at a time right now. That is all you can do. Hopefully soon these days will be a memory and you can get to doing the "normal" parenting duties that don't involve doctors and surgeries and NICU visits.

 

[cat81]

So sorry you're going through such a hard time. Sending lots of
I really hope you get some good news soon. She sounds like a real little fighter. xxx

 

[pink.crazy]

big hugs xx

 

[bob2331]

sending lots of hugs your way and wishing i could say something to make it all better xx

 

[PleaseBaby]

xxxxxxx

 

[Foogirl]

 

[vermeil]

that must be really, really hard.... I remember waiting for weeks to be able to hold baby, seemed to take forever... you will get there - thinking of you

 

[25weeker]

lottie

Of course you can have a moan anytime you want xxx

 

[Lottie86]

Thank you all Bleurgh I hate feeling like this.

 

[babyhopes22]

Thank you all Bleurgh I hate feeling like this.

Bless you i really hope everything is ok for you all, must be so tough for you.

Just a little thought, its nice to know someone else spells Lottie properly lol i always get Lotty or Lotte no one else seems to spell it the way we do lol

 

[AUGmum]

it is so normal to feel there is no end in sight but believe me there is light at the end of the tunnel. My thots and prayers are with you

 

[Starchase]

Moan away doll that is why we are all here, have they managed to type the chromosomal disorder yet, my son has a MCAD disorder and we have been told they will use umbilical cells to type this wee one when she is born to be sure? She definately looks like a little fighter

Xxxx

 

[Agiboma]

thinking of you and your family, sending positive energy your way

 

[Lottie86]

Starchase: we had all the genetic testing done when I was pregnant as we needed to know one way or the other especially as she was exhibiting problems from early on.

It's been a rather stressful week as she had her first bath in a month on Wednesday and went majorly hypothermic again so she's banned from baths again for the next month, she had to have a blood transfusion Thursday night and then spent hours yesterday in theatre having an endoscopy, lots of biopsies and a jejunostomy done!

It's starting to hit me now that today is day 95 which means the 100 days mark isn't far away at all. I know it's just another day really but psychologically I'm finding it a bit more difficult. I'm trying very hard to concentrate on the fact it will mean she's made it to being 100 days old rather than the fact she's still in hospital at 100 days old but it's not the easiest.

 

[Starchase]

Oh bless,.. 100 days wow what a little fighter she is, she will round that corner soon the only way is up honey.. My complications started last monday FM decreased scan Fri showed IUGR and restricted blood flow in the cord.. I'm hoping they will test for the genetic disorder now too if she has any fasting at all like her brother it can be fatal and that is scarying me more than ever..

Hope I can sleep tonight seen as I find out tomo Xxxx

 

[AuntBug]

So sorry you can't bring her home and cuddle. You're stronger than you think, hang in there