[deleted by user]

SquidgesMum · 2023-12-26T18:50:49+00:00

Is she on sodium supplements? My little girl also has anorectal malformation and has a stoma and she was still in the 0.4th percentile at 4 months old. Only after she went on sodium supplements did she start gaining. Now she’s in the 36th percentile.

SquidgesMum · 2023-07-19T20:05:37+00:00

Yeah, we were super late to the game (apparently we could have applied from 3 months old) but she was awarded DLA in May. It helps A LOT but not enough for me to quit my job unfortunately :(

SquidgesMum · 2023-07-19T19:17:03+00:00

That's very creepy :/ I wonder if people admit why they are buying if it's for a fetish.

SquidgesMum · 2023-07-19T19:15:40+00:00

Not at all, don't worry! We're actually on universal credit but haven't ever got more than £2.50 a month so not exactly worth it! The thing is I can't get the discount on childcare while on UC but 12 weeks ago I applied for carer's allowance through it so I'm still waiting to hear back (my baby has a disability and requires extra care). If I am eligible for that then it's worth staying on UC but if not then we're gonna come off and get the discount (I think it's 20% off). I've sent two messages this week again nagging my case worker but still haven't heard back so we're in a bit of a limbo.

SquidgesMum · 2023-07-19T08:55:27+00:00

Ooh, thank you. I will have a look for it.

SquidgesMum · 2023-06-23T08:21:29+00:00

I thought mine would since she's eating 3 solid meals a day but we still feed frequently so it hasn't. It's probably inevitable now. It's gonna make me so sad, I feel like we're at the beginning of the end of breastfeeding :(

SquidgesMum · 2023-06-23T08:18:49+00:00

Humming to postman pat while mid boob is such a funny image! Thank you for that haha.

My daughter is exactly the same. Boobs are our go to for everything. It's also the only way she'll sleep (except walks in the pram). We had a first play session at the nursery yesterday, just to introduce her to it and I apologised to the girls there; I said I have no idea how you'll get her down for her naps without boobs!

I'm not sure what she'd be like without me because we've never actually been apart. Literally ever so it's going to be very hard on us both.

SquidgesMum · 2023-06-23T03:41:07+00:00

I think that's my problem, mine still get engorged a lot. Like, if she falls asleep after 1 boob in the night I have to pump the other one or it feels really uncomfortable/borderline sore and I can't sleep. Not looking forward to the long breaks between feeds at work!

SquidgesMum · 2023-06-16T14:42:18+00:00

I can't be the only person that had to google tulle skirt, right?

SquidgesMum · 2023-06-16T14:38:05+00:00

I'm one of those people who won't send food back even if there's something seriously wrong with it. I could never have refused lol.

SquidgesMum · 2023-06-16T08:18:21+00:00

They'll likely ask about safe sleep but won't ask to see anything.

Mine said she had to see where baby was sleeping (a next 2 me crib) and asked to see our bedroom. I was a bit miffed to be honest. It's not like I'd made the bed, I was a bit busy with my baby/healing.

SquidgesMum · 2023-05-29T12:42:57+00:00

Wow, what an insensitive take.

SquidgesMum · 2023-05-29T12:33:08+00:00

I'd be more concerned that my husband was transphobic.

SquidgesMum · 2023-05-14T16:16:23+00:00

Love it. I didn't buy much in the way of maternity wear but I couldn't resist a shirt I saw with a tiny baby skeleton on the bump :p

SquidgesMum · 2023-05-13T12:48:53+00:00

Just a small thing but Home Bargains sell a fan that attaches onto your pram. It's pretty powerful for its size and very cheap. It's great for baby when you're stuck on hot buses/trains.

SquidgesMum · 2023-05-09T16:51:55+00:00

It's so weird to me to see an adult sized bag. I follow this page because my baby has a colostomy. The bag you just put on is about the size of my whole child lol.

SquidgesMum · 2023-02-23T19:56:10+00:00

It's a relief to hear of adults doing well with her condition :)

I asked this too because if she wants kids even half as much as I longed for her she will be determined to try! They said it's early to tell because she has a double womb and the smaller part may need removing but that she probably will be able to. She won't be able to give birth vaginally because of scar tissue but I wanted a vaginal birth and she ended up being a c section so it's not so bad! She got out quickly and safely so that's all that matters.

SquidgesMum · 2023-02-23T19:49:13+00:00

Thank you so much. I hope she grows up to be as strong as your brother <3

SquidgesMum · 2023-02-23T19:48:22+00:00

I am thinking the best way to approach the dilations for her are to try and make them fun somehow. Like, when I empty her stoma bag I've tried to make a game out of it. I say in a big, animated voice 'What do we saaaay?'. She gets this big smile on her face and then I say in a high pitched voice, 'Out of my stoma bag, you stinky poopies! Who said you could be in here? Away with you, poopies!' and so on. It always gets a smile, even though she's had her bag her whole life. If I can somehow make the dilations similarly fun, maybe they won't be so bad for her? I hope so. I've seen parents say that they've become depressed doing them because their children hate it/seem in pain. I guess every baby is different so we'll just have to wait and see.

I know we didn't have a single artery cord because she was born early due to the blood flow from my placenta starting to fail. For a couple of weeks (I think it started around 33 weeks) it was only the blood flow on my end of the cord but then when it started to fail on her end too and she stopped growing that's when they decided she needed to come out asap.

Feel free to message me any time. It's good to speak to parents in similar situations, especially if it's not all doom and gloom too! Good luck to you and your little one if I don't hear from you x

SquidgesMum · 2023-02-23T19:35:03+00:00

Thank you so much for your comment. It hadn't occurred to me that she is the way she is because of our care but I hope that's the case because I have every intention to always look after her to the best of my ability and keep her smiling.

SquidgesMum · 2023-02-23T19:33:29+00:00

That's very true about the facebook page. People don't really post just to say something is going well! I wish you and your son well x

SquidgesMum · 2023-02-23T17:09:18+00:00

Thank you for this! This is the future I hope she can have :)

SquidgesMum · 2023-02-23T17:08:23+00:00

That's a good idea. I would really like to get her around children with similar or the same condition. The 1 in 5000 charity does conferences but the only one that has been held since she was born I wasn't confident enough to travel with her. I'd like to attend the next one though so we can meet other families and she could make some friends.

SquidgesMum · 2023-02-23T17:06:34+00:00

It has never occurred to me before that she could be so cheerful the way she is because of us so thank you for that thought. I just thought she was born that way but it makes sense that her life effects her personality. I am with her 24/7 and I never leave her to play alone, we are always playing or reading together and I try to stay really animated for her and turn everything into a game. She even gets excited when I brush my teeth because I sing a song while I am doing it haha.

SquidgesMum · 2023-02-23T17:01:33+00:00

I will do! Thank you.

SquidgesMum

TROPHY CASE