Hi ladies can i come in please

[nineena]

Hiya ladies, hope youre all ok and your gorgeous preemies are doing fab.

Well i gave birth to my gorgeous Ella 20 days agoafter a very quick 7hr labour, 5 weeks premature, now although that's not very early she was only 3lbs at birth and after being whisked off to SCBU to be checked over it was discovered that she had a TOF, basically her oesophagus wasnt connected to her stomach but was connected to her trachea instead so when she was 3days old she had life saving surgery to fix the problem. She had a tube inserted right into her stomach that was not only feeding her but helping to heal the join. They also warned us that the TOF could be an indicator of congenital problems, chromosomal problems including downs syndrome, hole in the heart, liver, kidney and lung problems also but thankfully after being fully checked over it appears that she just had her bits connected in the wrong places.

After the surgery she was only on a ventilator for 22hrs and they'd warned us that she might come out of surgery with chest drains and would be sedated and paralysed but as it happened they only needed to sedate her Since her surgery she's been coming on in leaps and bounds. Did get a lil chest infection but fought that off in just a few days. After 10 days was maintaining her temperature and no longer needed oxygen although does still get a few low oxygen moments coz of acid reflux. She was moved into a real cot 4 days ago and yesterday had her feeding tube removed as she's now fully feeding either by breast feeding or cup feeding when i'm not there. They were thinking of sending her home this week but after a few de-saturations theyre going to see how things go.

How do all you other ladies cope with it all> i'm absolutely knackered after spending the last 3weeks more or less by her side at least 12hrs a day. Also finding it hard being told when i'm allowed to hug my own flesh and blood and although i desperately want her home i'm absolutely terrified about her not breathing during the night arghhh it's so stressful

Wow sorry ive wittered on for so long, not even expecting responses just having an emotional weepy day and needed to vent the last 3 traumatic weeks and know you all will understand

Here's a few pics of my gorgeous girl

 

[nineena]

sorry ive gone a bit pic mad lol

 

[AP]

Welcome to our club!

I'm Sandi and mum to alex (27+4)

Ella is beautiful and looks very well! Reflux is a bugger, is so common in preemies and not surprsing after what your lil chick has been through! Bless her!

Dont say sorry for the pics! Im honored to have seen them!

Look forward to hearing about her coming home!

xxx

 

[embojet]

Ella is gorgeous. I cant wait to hear all about her progress too

 

[nineena]

Hi Sandi and thanks for you lovely comments Hope Alex is doing well, cant imagine what it must have been like to have a baby so small.

Yeah docs keep saying it's a common problem with preemie babies but its also a very common side affect of the corrective surgery she's had so it's just a waiting game now and i know she's amazingly strong and has come so far in such a short space of time xx

 

[katy1310]

Hello

Welcome and congratulations on your beautiful girl. I had Sophie at 27 weeks, weighing 1lb 13. She's now almost 4 weeks corrected and came home 4.5 weeks ago after 12 weeks in neonatal.

I love your photos

Everyone's really friendly on here - you'll get loads of support.

xxx

 

[25weeker]

Congratulations on the birth of your little girl she is gorgeous.

My little girl was born at 25+2 and is now 11 weeks corrected and 6 months actual tomorrow. Although she is little (8lb 9oz) she is doing well. People are shocked when they hold her and she can hold her head well because she looks like a newborn!

It is very draining having a little one in hospital. Along with recovering from the birth you also have the added worry of your lo being sick. Try and take some time for yourself even if it's half an hour to have a cuppa and something nice and unhealthy while reading a magazine.

Hopefully it won't be too long until you have your little girl home with you.

 

[mushmouth]

Hi hon - Congrats and well done! Im just a lurker around here but wanted to say my mum was born with the same issue, and had the same surgery 49 years ago now, and she is a perfectly healthy old duffer! (apart from the dodgy knees but they don't count!) You'd never know if it wasnt for the scar along her side.

Just wanted to wish you all the best hon - she is gorgeous. x

 

[nineena]

Thanks again for your lovely comments, all your lo's are gorgeous

she seems to be in a nice 4hr feeding regime now so im starting to feel more like i can leave the hospital for a bit of a break without worrying im missing out on caring for my baby. We're getting her registered today so im really excited about that hehe

Mushmouth you have no idea how reassuring it is to hear your mums success story coz i know its a relatively new procedure and surgeons have said they dont yet know long long term effects so thankyou for that and hope you get a sticky bean soon hugs xxxx

 

[mushmouth]

thanks hon I'll ask mum if it ever affected her, but I don't beleive it has. I know she was a poorly baby for a while and had a few trips to the hosp but by toddling years she was just like any other

 

[nineena]

thanks hon I'll ask mum if it ever affected her, but I don't beleive it has. I know she was a poorly baby for a while and had a few trips to the hosp but by toddling years she was just like any other

i know they said she might need her oesophagus widening at some point coz it can get tight again but from what ive read theres not often problems later in life

 

[mushmouth]

thats sounds about right yeah! I hope you get to have Ella home with you soon hon

 

[2girlsandaboy]

Hiya ladies, hope youre all ok and your gorgeous preemies are doing fab.

although i desperately want her home i'm absolutely terrified about her not breathing during the night arghhh it's so stressful

Here's a few pics of my gorgeous girl

hey Hun my daughter had similar problems and I was terrified when I brought her home that she too would stop breathing so my only solution was to stay awake ALL night and watch her sleep!! I did not get any sleep for at least the first two months I brought her home!!! I was terrified daily and then once I watched her for a while and she was fine I just learned to wake up for every sound noise or anything that I didn't think was normal!! All will be okay with baby you might not be as crazy as I was staying up all night and all day but you will learn to listen for the "different" sounds baby might make!! My prayers go out to you and your family!!!

 

[vermeil]

oh wow she's absolutely beautiful!! Glad to hear the surgery went well! You'll find many great, understanding ladies here to talk to. My own 27 weeker born 1lb4oz is now two months old (or err minus 4 weeks heh, 36 weeks) and his weight has already tripled. I amazes me every day when I go to the NICU how strong these little guys are.

 

[nineena]

You ladies really are so lovely

Well Ella's been a bit poorly today, has been very pale and started de-satting really significantly since 1pm to the point where she needed oxygen again and was grey in colour and bradycardic too which she's never done before, normally just goes pale and low oxygen and once you sit her up she sorts herself out so theyre thinking either her reflux does need medicating or she's anemic or is developing infection so we're just waiting for results of blood tests they did this afternoon to see what next plan of action is. Also swapped to bottle feeding my milk coz it seems althoguh she's latching on properly she's not sucking properly to get enough milk out as im producing over 120mls every 4hrs when i express and she only takes between 40-60 in cup which settles her but she's been latching on for an hour and then still needing the 40mls via cup so have made decision to switch to bottle coz at least she can come home on bottle and well so far seems to have taken to it ok, has had 2 feeds this afternoon and despite being knackered and poorly took 35mls a time so we'll just wait and see what happens xx

 

[2girlsandaboy]

I am sorry to hear she is not doing so well, my daughter had the reflux as well and I know how scary it is for you!! Im still praying for you and Baby that she will get stronger every day!! Reflux is no joke it really sucks, and thats another thing to ake sure you read up on or get all the info, I was sent home with not knowing anything about it and felt really stupid when I would take her back in due to choking... again you are all in my prayers!

XOXO