please please can anyone offer me hope?

[nana2010]

thankyou everyone

 

[hellbaby]

Sorry, I don't have any answers for you but didn't want to read and run.

 

[nana2010]

Xxxxxxxxxx

 

[nana2010]

No-one? now i am worried

 

[Foogirl]

I'm afraid I can't offer any specific advice and I can't remember of anyone mentioning it previously either.

There are a couple of mums who have babies who are tummy fed so they might be able to offer some advice about that.

What I will say, is if you have any concerns at all about the care you are receiving, push for a second opinion.

Please do let us know how you get on, fingers crossed for you.

 

[bob2331]

Hi,

Am so sorry to hear about your baby coming down with nec, Harry didnt get nec but his little friend next to him did, 3 times. She was born at 23weeks weighing less then 400grams. She had a stoma and was fed through her chest. She is now 4months corrected and has been home for a few weeks, talking to her mum it was a ery hard time but she got there and is now a massive 7pounds!

Her mum isnt on here, but will get her on here and she may be able to help and talk to you as she has been through this xx

 

[nana2010]

thankyou so very very very much xxxxx
her nec is in recovery now but shes desatting....and has been having blood transfusions since she was born....other than that she seems ok now....its such a worry,,,,,,and being a nanan for the first time , imm trying to supposrt my daughter and console myself at the same time.......we just need hope xxxxxxx

 

[Foogirl]

It is easy to forget as parents, how difficult the journey is on the whole family. We get so caught up in the day to day worries and making sure we are ok, and we forget that Grandmas and Aunties and everyone else is struggling with the worry too.

I don't know if you are aware of Bliss the special care baby charity, but they offer advice and support to families. www.bliss.org.uk. If you have a look on their message boards, you might find someone who can help too.

 

[Dasy25]

Hi there i'm new to this (been a lurker the past few days) but seen your post and felt i needed to register and reply and offer a little bit of hope.

I had a little girl at 25weeks and it has been a very long journey with many ups and downs. We got home from the NICU on day 113! 12 days after my original due date (3rd Dec 2010). My wee girl was suspected to have NEC at around 5weeks old. Her milk feeds were all stopped and 14days worth of 3 different antibiotics were started. Ella had canula's everywhere to keep up and in the end her veins couldn't take it anymore. She ended up being transferred to another hospital to have a central line put into her chest so that her iv fluids could continue. She also needed to return to have the same line removed many weeks later although surgery wasn't needed to remove it. She also needed her 6th blood transfusion at that point which couldn't go through the same line. Thankfully Ella overcame this and the docs even then queried whether it was NEC or not as they later discovered she had another virus. Still a big question mark over that one yet however she made a full recovery in that area. Ella has some other health issues that require hospital follow up but in general she is doing really well so far.

It's amazing what can be done and by the sounds of it the babies are little fighters as all our little miracles on here are. Sending you and your family big hugs.

 

[nana2010]

thankyou everyone

 

[25weeker]

I hope your granddaughter starts to show signs of recovery soon.

When my lo had sepsis in hospital she got a build up of fluid and looked like she had no neck. They treated her with diuretics which makes them pee more. It also dries the lungs which helps their breathing. My daughter also has CLD and there is quite a few preemies on here who have it. Some go home on oxygen and some don't but it is something most grow out of as they get bigger.

My daughter also had a large PDA which I am assuming what your granddaughters valve is? She was successfully treated with medication but there is also a few on here who's lo was closed surgically.

Your granddaughter is still fighting so there is always hope.

Keep us updated

Xx

 

[nana2010]

thankyou everyone

 

[bob2331]

Hey Nana2010, my Harry has CLD, alot of premmies do, if they have needed oxygen for more then 28days they are classed as having it (well, that was the ase in our hospital)

Everything i hae said reminds me of Harry, little babies forget to breathe, but they do grow out of it, but its heartbreaking watching and hearing the machines go off and everyone come running!

Harry spend a lot of time on diarectics (sorry about the spelling) becasue he would often have fluid build ups on his lungs because of his PDA, after about 6 weeks, this stopped after his pda closed up.

There is light at the end of the tunnel, my little Harry and all the other babies on here are proof of that.

Thinking of your grand daughter and your daughter and you, stay strong xx

 

[nana2010]

Thankyou so much bob2331 XXXXXX

 

[Foogirl]

hi thankyou so much for all your replies ......
are there any nanas on here who are in my situation....(im 48 years old)
im trying ot support my daughter with the twins, and yet try to keep myself in check cos it upsets her if im upset.
I cannot visit the girls now because the hospital have stopped all visits to neonatel to prevent swine flu.
So im sat at home with grandad feeling like crawling the walls. i cant see the girls so i ask how they are , my daughter says shes exhausted phoning me ot tell me eveytime , so i suggested texting....which she phones and texts. i keep forgetting some things she tells me so gets more annoyed if i ask .
I darent go out to take my mind of things because i feel how can i go out ot have a little time out anf fun when my daughter and her hubby are going thru all this .........sorry for having a moan folks .....im at my wits end ....

I think the thing you need to do is be very patient with your daughter and let her come to you when she needs you. Drop her a text every day or so to remind her you love her and you are thinking of her and let her come to you to tell you what is happening rather than asking every day. It is hard for the parents to have to constantly update the whole family - remember there will be others she has to tell as well. When she does tell you things, write them down so you don't forget and she is less likely to become frustrated. Don't ever ask when the babies are coming home, that question without exception, upsets every preemie parent.

My mother in law wanted a blow by blow account of how every day went and it was exhausting. I couldn't understand it as most days follow the same pattern. She was only weighed every few days so beyond "She's ok, she had some food and did some stuff" there wasn't much to tell. If there was ever anything different to report, we told her straight away. Eventually, after a couple of weeks, I had to tell her to back off. It was too much to have to deal with and to be honest, when I wasn't at the unit, I pretty much just wanted to forget about it. The last thing I wanted was a discussion about her and being there and a dissection of the whole situation with platitudes about how it was all going to be ok.

She will understand that life goes on and you absolutely must go about your daily life as usual. You need to do that for you and maybe if you can take your mind off it, you might be able to relax a little which will also help the situation.

Do you live close to her? Why not offer to help her in other ways. Does she need some shopping done, or some washing or cleaning? One of the things that was difficult for us was a meal at the end of the day. By the time we got home from the unit, we were too tired to want to cook or anything. Offer to go in and have her dinner ready when they come back. Trying to keep a house running when you are out everyday to and from the hospital is difficult.

Just take a step back and let her have some breathing space, she'll come back to you very soon.

 

[okciv]

Agree with above post - I used to get so annoyed with everyone asking for updates - it's bad enough your baby being ill wiothout having to keep explaining what's happening to everyone.
Help with washing etc was great!!

When Eve had NEC and they stopped food but gave her fluids she was really puffed up and one of her lungs collapsed, we were sent out so they could ventilate her but she picked up really quickly herself.

Also, with a PDA, when babies are ill it apparently can reopen

 

[nana2010]

hello everyone. te above replies are absolutely right.....thankyou xxxx