We dont really 'fit in' anywhere

[kit10grl]

Robyn technically wasnt a premie at 38+3. She was in the SCBU/NICU/PICU's till she was a month old and after various surgeries. Since then she has been in a couple of childrens wards. So in a way i dont feel like we fit in here well. She has been diagnosed with a syndrome but no one on this forum has responded to my threads about it and as its so rare 1 in 10,000 births worldwide it seems she is the only on ehere with it. So its hard to feel like we fit on the special needs board too.

And as she is quite developmentally delayed due to hospital time we definitly dont fit well in baby club.

I find it hard to have a four month old baby who is only just about able to hold her head up and weighs only 4kg when my friends babies of the same age are all 'small' breastfed babies weighing around the 12 pound mark. She is 20 weeks and has only spent about 5 weeks home in small bursts, 3 days here, 5 days there etc then she gets sick again and we have to go back.

The nurses all act like im strange cos im not the doting mum who never leaves the side of her child in hospital. But they dont usually deal with babies in for so long and four months later i cant keep 'not' sleeping at the hospital i need to rest too, plus i have an 18 month old at home who they wont allow to visit so if im with her i cant be with him and its not fair for him to never see me. They keep saying but cant your mum/sister/aunts friends dog look after him. They dont seem to grasp that yes they would look after him but I WANT to see my son.

And there was one day i just couldnt fce going to the hospital a few weeks ago, i hadnt seen my son in days, we were in the middle of moving house and i was so exhausted i just needed a day of not listening to lots of crying children and sats monitors and the next day they had a senior nurse phone me to find out 'if something was going on' and recorded in her notes that mum is having 'bonding issues'. I was furious I suffered from PND with my son and am still seeing a pyscolocgist as a result and she ended up in a sitdown meeting with this nurse to explain my reasoning about needing a break cos i took the actual day of moving house to not visit the hospital. I had also told them we were moving house that day so its not like they didnt know.

Just feeling very much like nobody gets what its like for me. Even DH at times seems to have his head in the sand over what our LO's future might be like and he and my whole family keep telling me itll be fine.

 

[Lucy139]

I'm so sorry your going through this, it sounds like a complete nightmare. I don't have any advice for you but sending u hugs xxx

 

[confused87com]

you sound amazing that you are there so often. I cant believe they called you when u had one day off. When i was in nicu i saw mums not turn up for days on end, i heard one girl say she fancied a day in bed and cudnt be bothered to come in. I was there every day, and they said it was v rare. Surely they must know you have been doing it for so long, no one shud worry u have one day off. I cant imagine what u are going thru, i was so scared of having another preemie, because mainly i knew i wud have to split my time between my son and baby.
the mums here are rele nice, its not jsut for preemies.

 

[dizz]

I can well believe they'd make comments if you weren't there 24-7... another mum whose daughter was in the cot next to mine in NICU wasn't allowed to visit (because she had her MIL in the same hospital with something and they were concerned about infection control) - and there were still a few snidey comments made about it all (despite the fact the poor woman was chained to a breast pump pretty much 24-7 doing what she could!)

It's one of the things that really got my goat with the NICU stay - was just the perception that the parents' lives outside the unit were worthless - they'd do things like at 3am talk among the staff (I was down there at that time since I was being kept in on the ward and you don't get sleep on post-natal wards so I figured I'd go do something more productive - plus the night staff generally let on more about what was actually going on than the day staff) about "ok so give X's mum a ring and get her to come in in 30 minutes time to do a breastfeed" - at 3am - no acceptance of other kids in the household (and I know there were siblings in that case as the cot had photos up of them in it) or anything... I'd have to say that that ignorance of other kids is my biggest fear if this pregnancy goes premature again - to the extent I'm actually putting a note on my birth plan that if a NICU stay is required, please accept I have a still-very-little girl at home who needs her mummy as well and help facilitate balancing the two sets of demands out.

As for not fitting in - yep lots of us get that feeling (particularly where competitive milestoning is concerned). If the syndrome is so rare that support groups for it specifically are hard to find - are there any more general groups around, either linked to the children's wards of the hospital you've been at or linked to the same general type of syndromes?

 

[Foogirl]

It can be very isolating. And whilst we here might not have had a child with the same syndrome, we do understand what it is like to have a baby in NNICU, and to have a baby who is not doing what they should for their age. And we also understand what it is like to have to deal with people who don't understand. So we are all here for you!

There is another mum on here who has two little ones with a very rare condition and has spent a lot of time in NNICU and children's ward with her LO's. I'll give her a nudge to come on and take a look at this thread, as I'm certain if there is anyone who will know exactly how you feel, it is her.

 

[25weeker]

Sorry you are going through such a rough time. There is another girl on here with 2 children with a rare chromosone disorder and spent a long time in hospital with her daughter so she will understand what you are going through. Hopefully she will be on soon.

You are doing amazing coping with a toddler and a baby in hospital so try and ignore the nurses.

Good luck xx

 

[Lottie86]

Hello! I'm the Mum Foogirl was mentioning, I am just off out but I will be back later to type a proper reply to you xxx

 

[sethsmummy]

I'm so so sorry you are being made to feel how you are hun with other children at home the NICU staff should be applauding you for being able to spend time both at home and in NICU. And they should surely appreciate that you need a day to yourself! Especially if you are moving home and have already told them. Sending you lots and lots of love hun xxxxx

 

[dizz]

Robyn's a beautiful name btw - it's one of the two possibilities we have going for this bump!

 

[kit10grl]

I can well believe they'd make comments if you weren't there 24-7... another mum whose daughter was in the cot next to mine in NICU wasn't allowed to visit (because she had her MIL in the same hospital with something and they were concerned about infection control) - and there were still a few snidey comments made about it all (despite the fact the poor woman was chained to a breast pump pretty much 24-7 doing what she could!)

It's one of the things that really got my goat with the NICU stay - was just the perception that the parents' lives outside the unit were worthless - they'd do things like at 3am talk among the staff (I was down there at that time since I was being kept in on the ward and you don't get sleep on post-natal wards so I figured I'd go do something more productive - plus the night staff generally let on more about what was actually going on than the day staff) about "ok so give X's mum a ring and get her to come in in 30 minutes time to do a breastfeed" - at 3am - no acceptance of other kids in the household (and I know there were siblings in that case as the cot had photos up of them in it) or anything... I'd have to say that that ignorance of other kids is my biggest fear if this pregnancy goes premature again - to the extent I'm actually putting a note on my birth plan that if a NICU stay is required, please accept I have a still-very-little girl at home who needs her mummy as well and help facilitate balancing the two sets of demands out.

As for not fitting in - yep lots of us get that feeling (particularly where competitive milestoning is concerned). If the syndrome is so rare that support groups for it specifically are hard to find - are there any more general groups around, either linked to the children's wards of the hospital you've been at or linked to the same general type of syndromes?

Thats exactly it the feeling that nothing matters except whats going on in the hospital. We were being pressured to get the new house suitable for robyn to come home during the move and despite me begging on the phone the council gas man wouldnt fit us in early to have the gas turned on. So Im not bein g entirely unreasonable to think you wouldnt bring a hospitalised baby home to a house with no heating right? But yeh they complained that we had to wait a few days on that. And when the senior nurse had phoned me in and I asked how long the meeting was going to take she was very rude with her 'why are we keeping you from something?' well yes your keeping me from getting the house ready so i can actually bring her home like you want? Then she showed up 45 minutes late after i told her i didnt have much spare time. When i called her on it she said 'yes but I'm busy. My time is very important' I almost exploded at her cos apparently my time isnt.

It can be very isolating. And whilst we here might not have had a child with the same syndrome, we do understand what it is like to have a baby in NNICU, and to have a baby who is not doing what they should for their age. And we also understand what it is like to have to deal with people who don't understand. So we are all here for you!

There is another mum on here who has two little ones with a very rare condition and has spent a lot of time in NNICU and children's ward with her LO's. I'll give her a nudge to come on and take a look at this thread, as I'm certain if there is anyone who will know exactly how you feel, it is her.

It's nice to know some people do understand the feelings if not exaclty whats going on day to day. One f my biggest fears going on is people judging her based on how 'normal' she seems.

Charge syndrome can affect every child who has it in different ways. Some physical, some mental. Luckily so far she seems to have a very mild case of it. The only physical characteristic she outwardly displays is her ears. And while they are very soft and noticeable if you are looking at them first glance they arent noticeable, and beign a girl she could always grow her hair out over it. While I'm thankful for this it also worries me she looks normal.

What happens as she gets older? She has been encouraged to use a dummy as she is tube fed and they want to keep her sucking instinct as well as keeping her used to having things in her mouth so hopefully she will eventually wean to normal eating. What if she doesnt and needs a dummy until she is quite a bit older? (some kids are eating pureed food still at age 4). She WILL walk (so thankful) but the average age is 3-4 years, she WILL talk but again the average is later.

I'm worried about how to handle walking down the street with my relatively normal looking 4 year old in a pram, sucking on a dummy not able to talk yet and having 'baby club judgey types' look at me like i'm just some rubbish lazy mum who cant be bothered with her.

 

[kit10grl]

Robyn's a beautiful name btw - it's one of the two possibilities we have going for this bump!

Aww thank you. It seems to have become really popular all of a sudden. We thoguth it was pretty rare and then there were three kids in NICU with it at once lol. Who would have guessed it lol

 

[kristy87]

Hello,

I dont have a preemie but do understand a bit about charge syndrome. And also work as a nurse in a children's hospital. I am disgusted to know that they are making such a deal of you going home. I'd often say to parents to go home and get rest, what good is it to have a nackered mum and a baby who is always in hospital? You know she is in good hands there and like you say your other child shouldn't always suffer and not see you because of this! I'm really sorry they are making you feel that way xx

 

[Lottie86]

I'm back!

I don't know any Mummies who have children with CHARGE syndrome but I do know several heart mummies so would you mind if I asked them if they know of any little ones with CHARGE as then maybe I could put you in touch with them? Whereabouts in Scotland are you based?

Have you found this support group? https://www.chargesyndrome.org.uk/

As a couple of others have said my pair (nearly 4 and 19 months) have a very rare chromosome abnormality and Findlay was in and out of hospital until he was 8 months (mostly in) and then has had various inpatient stays and day surgeries since and Iona didn't come home from hospital until she was 11 months old so I understand some of how you feel about being in hospital. I also understand about having a child who is small for their age and a child who is not doing what others their age are as my pair both have have a lot of complex issues as a result of their condition and are very small for their age

I am shocked at the attitude of the nurses though. Is there a reason they won't let your son visit as I've never heard of a children's ward that won't allow siblings to visit before. I wonder if it would be worth speaking to the ward sister about how the attitude of some nurses is making you feel.

Feel free to pm me if you want. Take care of yourself xxx

 

[kit10grl]

The no visiting thing is a winter rule from november to april no kids under 14 are allowed in to visit. Its for infection control So if she continues to be mostly in over the winter she could be as much as 8 months old before they really get to know each other which worries me a lot too.

Were based in Dundee so attending Ninewells for most things but her surgeries were done in Yorkhill. I did find that group already and joined the Facebook group too. A lot of the info i have has been from there and so helpful. It would be great to get in touch with other heart mummies to tho.

 

[vixxen]

Hi i'm a fellow heart and tubie mum too
My daughter is just a couple of weeks older than yours

 

[Siyren]

hey hun i wanted to pop in- hope it's ok im here as im not a preemie mummy, but i am a heart mummy. feel free to pm me x

 

[Kitty_love]

Hi Kit

I have a little boy who just came home from the NICU after 7 weeks. It was such a hard time, and I can't imagine if I had another LO at home to care for as you do. It sounds like you are doing an amazing job! Really made me sad and upset that nurses would "talk" to you for missing one day at the NICU? For having to move house? That's a huge job in itself! Unbelievable! Please don't let those nurses make you doubt yourself, you're right, you need to take care of both your children. Feel free to pm me I you need to talk or vent about anything. Big hugs to you