7wks old and potentially another 2 months in hospital :(

[nineena]

Sorry for whinge ladies but finding things a bit difficult at the min and a lot of it i feel really bad and selfish for just wanting my baby home and knowing that she could potentially be over 4 months old when she does come home

Things were going really well and Ella was due home on 18th July but well as a lot of you know she had a complication and questions were raised at to whether the surgery had been as successful as first thought. Well Ella went back to Manchester (surgical hospital) 3weeks ago and they re-inserted a feeding tube under x ray then we got told she had to stay nil by mouth until she'd had contrast study to see for definite whether her trachea and oesophagus had re-joined and that appt was meant to be 9th August so we were sent back to Wigan SCBU for Ella to fatten up for 2weeks as she was still only 4lbs and they started fortify in her EBM too. Things going great initially then Ella started to go really pale and chesty again and had developed another chest infection so IV antibiotics started again and then last Sunday got a call early hours to say that Ella had pulled out her feeding tube and had to go back to Manchester as Wigan were advised not to attempt to pass tube due to surgery on her oesophagus. Ella was eventually transferred late Sunday afternoon where 2 different staff tried to pass NG tube but it just wouldnt go down suggesting that oesophagus had narrowed even more so IV fluids were commenced and as you can imagine Ella was extremely upset and starving hungry. Surgeons came to see her on Monday but couldnt book her in to have tube passed by x ray contrast at same time until Tuesday, at this point i was a wreck, anything little just set me off crying. Anyhow tuesday came and she went down at 4pm and I had to go collect hubby from work, got back at 6pm to be told oesophagus had narrowed that much they couldnt even pass a guide wire down there so she'd have to have more surgery to dilate her oesophagus to pass feeding tube and that couldnt be done until Thursday grrr. Ella didnt seem too bothered but did need a blood transfusion as HB dropped to 7.4 and then Thursday came and she went down to theatre and they successfully managed to dilate her oesophagus and pass the tube and she's currently on 3hrly feeds and hopefully going back to 4hrly tomoz. All sounds and is positive but still needs contrast study next week to see if there is a join between trachea and oesophagus and if there is surgeon has said he wont operate on her til September as he wants her to be a lot bigger as she's still only 4lbs 8oz now so at that point she'd be almost 3months and we're talking at least a few weeks after that to re-establish oral feeds. Feels like its NEVER going to end and im starting again to feel like i'm just a visitor at the hospital instead of a mummy and then certain staff say things like oh shes just tired or have you checked her bum etc when she's crying and then tell me what she likes and theres me thinking well im her mum i'm supposed to know all these things not have someone else telling me them

And then to make things even more selfish i keep thinking if Ella's 4 months old when she comes home that's half my maternity leave over and i'll only have 4 months of her with me at home before i have to go back to work, it just seems really really unfair

Sorry for the essay but i just feel blah and well really emotional

 

[divadexie]

Is there any way you can get some more leave from work? Surely they could accomodate considering everything your going through.

I can't begin to imagine how hard it is for you. Anna was in hospital for 14 weeks and it felt like forever, like it was never going to end!

But you and your LO have been through so much!

I hated that feeling like I wasnt her mum, being told what to do.

I have everything crossed things start to look better and you can have her all to yourself soon!

xx

 

[nineena]

Thanks Anna, i can extend my mat leave until July if i wanted to but i'd be on just statutory mat pay until April and then nothing after that until i went back and there's just no way we can afford to lose so much money a month as i'm the main earner. Am trying to work out if we can save an extra £100 a month between now and March so i could have an additional 5weeks off which would take me to April so my annual leave would have kicked in and i could take another 3 weeks off annual leave. Its so so difficult though coz hospital is a 60mile round trip away every day so it's costing a fortune in fuel and to make it worse neither me or hubby are eating properly becoz we're spending so much time at hospital, cant remember the last time we did a weeks shopping. Infact tonight was first time in weeks we actually cooked a real meal and that was coz i was knackered so we left hospital at 5pm instead of 9pm and i had a nap while hubby cooked tea.

How did you do it with Anna being there for 3 months and when are you planning to go back to work? xx

 

[divadexie]

She was in hosp a 2 hour drive away for the first 9 1/2 weeks. The hospital were great there was a room we could stay. After the first 2 weeks when we were there pretty much the whole time, we were staying on the weekend, and going up mid week but I have a 5yo at home and OH needed to work.

Im not planning to work I was a stay at home mum already to Lewis so I have no probs there, OH works full time, and we manage quite well on his wage and tax credits... I do plan to get a part time job at some point this year lol


I remember not eating properly. OH lost so much weight his face just looked so thin! We were living of take aways when we were at the hosp, and microwave dinners/pizza etc at home as too tired to cook!


It definitely got easier when she was moved to the hospital near us and I could see her every day again without feeling as drained. But it did just feel like it was never going to end!


Is there any way your partner can get more hours at work to make up for extra leave if you took it?

xx

 

[Anna_due Dec]

your situation is really tough. I hope time moves fast for you XOXOX

 

[25weeker]

It is so hard when you know there is still a long journey of Nicu ahead of you. I remember at 5 weeks thinking we are only a third of the way through this rollercoaster.

I also didn't feel like her mum. I felt like I was a visitor going to see someone I loved but I never felt like she was mine or one day I would be fully responsible for her.

The system is so unfair on maternity leave for sick or premature babies. If I had taken only 6 months I would have been going back in July and my little girl would have only been home 12 weeks! I was originally due to going back in Oct after 9 months but have extended it to a year and with holidays now don't go back to feb. Although even thinking about it now makes me feel sick so dread to think how I will be then!

Could you maybe get signed off sick after your maternity and then get sick pay? Given everything you have been through I can't see a doctor arguing too much to give you a sick note.

Hopefully your lo will make a speedy recovery and be home in less than 2 months.

Take care

Xx

 

[AP]

Nineena finacially you can claim fuel etc via the Family Fund. We got £500 from the in expediture, you're sure to get at least that!

 

[katy1310]

Just wanted to give you and say that although our situation was not as tough as yours I can kind of understand a bit of what you're going through in that Sophie was in hospital for 3 months and it was a 120 mile round trip for us. I totally felt like a visitor, didn't feel like her mummy at all until she went into special care then I was allowed to do more for her, pick her up when I wanted etc but I didn't feel properly like her mummy till we got her home. I still have major problems with the way I am feeling which I started another thread on last week.

I remember so well not eating properly all those months. We didn't do a proper food shop from February (just before Sophie was born) until she came home in June. We were living off takeaways and hospital food or just really crappy easy stuff at home. We were so knackered and the house got chaotic too.

Maternity leave sucks when you have a prem baby - paternity leave also, because DH had to take his within I think 56 days of the birth so the first week of it he spent visiting me and Sophie in hospital and the second week we were driving up and down every day to the hospital.

He ended up getting signed off sick just towards the end of Sophie's hospital stay and he is back at work now but still on anti depressants. She had to pass a sleep study to be allowed home (where they monitored her oxygen/heartrate etc for 24 hours) and she failed twice. It was a nightmare - we were saying at the time it was like they were dangling her in front of our noses and whipping her away again. DH said it was like "Here's what you could have won...but we don't want to give you that!"

I plan to be a stay at home mum - it's going to be tight but we will manage. We spent an absolutely fortune in fuel, hospital parking etc, we worked out we must have been spending £160 per week and we really struggled.

Try to keep strong, I know it's so, so hard, especially when you still have a long time stretching ahead. I remember being really strong for a while then I had such a bad few days when I was constnatly in tears - Sophie was still in NICU so it must have been within the first 7 weeks. Then I got strong again.

These little ones are such fighters. I was just saying to DH this morning, I remember when the highlight of the visit to neonatal was if Sophie opened even one eye just a tiny bit, and now it's amazing getting up in the morning to big smiles from her.

Big big hugs xxxxx

 

[wiganlass]

hello lv so sorry to hear that ella is still in hospital hope she's home with you really soon,what hospital is the staff being funny about things at ? when i was in with brandon there was a certain 1 that made me feel like crap was so glad when she had her week off.

hope the surgery will have taken this time round which im sure it will have done,stay strong for your little princess ella,ano its hard but shes in the best place for now you'll have plenty time with her once shes out. will work not let you have any more time off work once shes home with you .

big hugs xxxxx

 

[nineena]

She was in hosp a 2 hour drive away for the first 9 1/2 weeks. The hospital were great there was a room we could stay. After the first 2 weeks when we were there pretty much the whole time, we were staying on the weekend, and going up mid week but I have a 5yo at home and OH needed to work.

Im not planning to work I was a stay at home mum already to Lewis so I have no probs there, OH works full time, and we manage quite well on his wage and tax credits... I do plan to get a part time job at some point this year lol


I remember not eating properly. OH lost so much weight his face just looked so thin! We were living of take aways when we were at the hosp, and microwave dinners/pizza etc at home as too tired to cook!


It definitely got easier when she was moved to the hospital near us and I could see her every day again without feeling as drained. But it did just feel like it was never going to end!


Is there any way your partner can get more hours at work to make up for extra leave if you took it?

xx

Wow really dont know how you did it with another LO at home too, you're very strong and especially being 2hrs away too. Hubby already works 40hrs a week so wouldnt be fair for him to do more hours it'll all get sorted and well ill just have to try and not worry about it xx

 

[nineena]

It is so hard when you know there is still a long journey of Nicu ahead of you. I remember at 5 weeks thinking we are only a third of the way through this rollercoaster.

I also didn't feel like her mum. I felt like I was a visitor going to see someone I loved but I never felt like she was mine or one day I would be fully responsible for her.

The system is so unfair on maternity leave for sick or premature babies. If I had taken only 6 months I would have been going back in July and my little girl would have only been home 12 weeks! I was originally due to going back in Oct after 9 months but have extended it to a year and with holidays now don't go back to feb. Although even thinking about it now makes me feel sick so dread to think how I will be then!

Could you maybe get signed off sick after your maternity and then get sick pay? Given everything you have been through I can't see a doctor arguing too much to give you a sick note.

Hopefully your lo will make a speedy recovery and be home in less than 2 months.

Take care

Xx

Thankyou, i know i shouldnt moan really when there's others out there who's babies are in hospital much longer than Ella. Yeah i could get signed off sick but really wouldnt want to unless i was really struggling to cope with things. Will just have to wait and see what happens xxx

 

[nineena]

Nineena finacially you can claim fuel etc via the Family Fund. We got £500 from the in expediture, you're sure to get at least that!

What's the family fund????

 

[nineena]

hello lv so sorry to hear that ella is still in hospital hope she's home with you really soon,what hospital is the staff being funny about things at ? when i was in with brandon there was a certain 1 that made me feel like crap was so glad when she had her week off.

hope the surgery will have taken this time round which im sure it will have done,stay strong for your little princess ella,ano its hard but shes in the best place for now you'll have plenty time with her once shes out. will work not let you have any more time off work once shes home with you .

big hugs xxxxx

Hiya Brandon's looking gorgeous hope he's doing well. There's no1 inparticular that's funny and im sure they dont mean to be it's just flippant comments that when youre feeling sensitive as it is it just tips me over the edge iykwim. Who was it that was funny with you? We initially had a few mishaps with Suzi but after Ella aspirated 3weeks ago she was really good.

Work would let me have until July 2011 off its just i wouldnt get paid. xx

 

[wiganlass]

Hiya Brandon's looking gorgeous hope he's doing well. There's no1 inparticular that's funny and im sure they dont mean to be it's just flippant comments that when youre feeling sensitive as it is it just tips me over the edge iykwim. Who was it that was funny with you? We initially had a few mishaps with Suzi but after Ella aspirated 3weeks ago she was really good.

Work would let me have until July 2011 off its just i wouldnt get paid. xx[/QUOTE]

hi hun thanx he's doing great thanx putting weight on fast so im happy about that,was abit worried in hospital because he couldnt feed too well. i cant remember her name ill think of it tho she was brandons main midwife when she was in small oldish with blonde hair. made me feel like i couldnt hold my own baby. hows ella doing now hope she's doing better xxx

 

[Lottie86]

It is so hard. Are you living in the hospital with Ella? I know how tough it is (we finally became 'full time' parents at 8 months old) so feel free to pm me if you want to.

 

[nineena]

Oh wow Lottie how on earth did you cope with that???? Not living in, there's only 6 beds for the whole of the NICU and the paediatric unit so theyre like gold-dust and we have house rabbits that need feeding so wouldnt be practical anyway.

Well there's a lovely silver lining today, Ella had contrast Xray done which shows there is no join between oesophagus and trachea so they've re-commenced small bottle feeds. She's been successfully having 5mls at every feed today and thats being increased to 10mls tomorrow and then up and up until she no longer needs tube to feed so theres now a possibility of home by the end of the month dependant on how well she progresses

Wiganlass i think it's Pauline that youre talking about.....shes been amazing with us xx

 

[wiganlass]

her name was alison my oh's just said not sureif youve had any dealing with her. xxx