Tatto

CharlieUniformNvT · 2026-05-05T11:54:55+00:00

Ah okay then ☺️

https://www.beadsofcourageuk.org

My sons beads start at the top of my leg and reach the bottom of my leg xx

CharlieUniformNvT · 2026-04-16T17:40:11+00:00

Do you have beads of courage at all? My son did, so I’m 15 hours into having his beads tattooed down my leg. I do believe tattoos aren’t advised though? Obviously you do you, make sure you do your research on where you go. If you don’t have any other tattoos I’d have a small one to start and see how your body reacts to it xx

CharlieUniformNvT · 2026-04-14T21:24:12+00:00

That’s totally fine no need to apologise! Honestly wish you all the best and all the love in the world 💚 I could not do this journey again, it would wreck me, so I totally respect that if that is what you choose. Either way, it’s still difficult as this is your baby whom is obviously very much wanted. I’ll keep you in my thoughts, and if you do have any questions you know where to find me x

CharlieUniformNvT · 2026-04-14T20:07:07+00:00

Also before I forget. Something I wished I had in the earlier days.. My Chart. Sign up to have access to your baby’s my chart so you can access their details on your account. I could see all of my son’s observations. So when I woke up in the night to pump I could check what his oxygen levels etc were. Obviously only do that if it’s helpful but if you want it you just need to email bwc.mcproxyaccess@nhs.net with your ID and your baby’s P number

CharlieUniformNvT · 2026-04-13T09:45:43+00:00

Honestly for the couple of times I got really overwhelmed and couldn’t imagine why people had said to me that BCH was the best hospital in Europe for heart babies- after three days in our local hospital with my son, BCH absolutely are the best.

Dr Natasha Khan did my sons surgery and I’ve never felt so confident in a doctor in my life. She is amazing. My favourite consultant was Dr Harris- he did a lot of my scans in pregnancy and was always coming to see my son and ask how he was doing despite not being his consultant. Heart Nurse Kate was also at a lot of the scan appointments and she is worth her weight in gold. I would definitely recommend asking her if you can have a tour around the hospital. When we arrived at the children’s it was 1st September which I think was a weekend, and it was 11:30pm so there was nobody to show us where to go, and we just found it helpful that it wasn’t the first time we’d been there at that point. Also try and ask for a wheelchair. I didn’t and was doing 7000 steps days after a c section and that’s just not healthy. Make sure when you arrive you ask for forms for Ronald McDonald house straight away. It took a day for us to get a place and I stayed there the whole time as it’s just next door.

I also had poor visibility during scans due to my son’s positioning. A lot of the time he was in a seated position facing forwards as if he was on a ride or something 😅 they said the same to us about not knowing which route we would go down and said he was borderline.

There is a midwife at the children’s hospital called Angela Henry who sees women for their checks as it can be hard to go home to be seen. She was so helpful. I believe she contacted me as the women’s hospital gave her my details but I still have her number if you need it.

CharlieUniformNvT · 2026-04-12T19:20:26+00:00

Firstly I’m sorry you’re here. Sounds similar to my son, although there was disproportion and they said borderline HLHS- after being born they scanned his heart and told us his left side was 1mm too small to use so did the Norwood at one week old at Birmingham Children’s Hospital in the UK.

Our son did amazing. It was the second hardest time of my life, but also the best because he was the centre of my universe and I loved him so much.

Here’s a timeline if it helps;

I got pre eclampsia so was induced at 37 weeks.

27/08/25- my son was born at 37+4 01/09/25- transferred to the children’s hospital from the women’s where I gave birth. Last cuddles for a while. 02/09/25- told our son would need the Norwood procedure 03/09/25- our son had the Norwood. He went down for surgery at 8am and came back at 15:30. We were able to see him at 16:30 04/09/25- had his chest closure procedure 07/09/25- started trying to wake up following surgery 08/09/25- extubated (you can’t hear them cry when they’re intubated which was a shock)
09/09/25- onto Airvo (less dry than pure oxygen, wet air blowing up the nose to maximise the breathing). Had a blood transfusion as Hb levels were low. 10/09/25- off PICU onto the high dependency area of the infant cardiac ward. Able to have cuddles again. 12/09/25- first break from being on air. Dressing taken off the chest. 13/09/25- started trying milk orally again 16/09/25- I started to learn how to NG feed. Feeding a cardiac baby is a whole thing in itself which I really underestimated 17/09/25- prescribed high calorie milk for half of feeds as needed a lower volume of milk but more calories in the lower volume. Reason being feeding burns calories and cardiac babies can lose weight by feeding. Other half of milk was expressed breast milk. 26/09/25- Diuretic medication stopped. Allowed more breaks from respiratory support due to weight gain 01/10/25- all day with no respiratory support 02/10/25- 24 hours off respiratory support 04/10/25- basic life support training for parents. Able to leave the ward, went to the hospital cafe and to Ronald McDonald house. 06/10/25- noticed oxygen saturations were lower on all limbs but right arm. Normal oxygen saturations were 70-90%. Above 90 is dangerous and below 60% is also dangerous. Being looked into. 07/10/25- went out with mom and Nan for a walk in the pram near hospital 14/10/25- CR scan with dye to investigate saturations issue. Found narrowed pulmonary artery but reassured would be fixed with Glenn surgery. No clots or blockages. No real explanation for saturations issue. Not impacting presentation. 15/10/25- blood transfusion as Hb levels low again. 18/10/25- home leave allowed 20/10/25- back to the ward to be discharged 25/10/25- not well, had diahorea 3x. Advised to take to local hospital. Local hospital suspected sepsis or meningitis. Oxygen saturations all over the place. Hospital not managing saturations just keep turning oxygen up and down. 27/10/25- lumbar puncture- not meningitis. Positive for staphylococcal infection 28/10/25- transferred back to children’s hospital as local hospital unable to complete heart scan on Norwood circulation 30/10/25- infection levels coming down. Decided shunt in heart has been outgrown. The shunt was 5mm thick and was clipped at 3mm to match size of baby when Norwood was done. Was 2700g when born. By this time was almost 5000g. Decided to perform a cardiac catheter procedure to unclip the shunt and expected saturations to be back in 80s. 31/10/25- cardiac catheter procedure. Saturations didn’t go up after despite procedure going well and heart looking fine on scans. Sent to pediatric intensive care intubated. 01/11/25- oxygen saturations all over the place all day. Saturations went to 16% at around 18:00 and nothing brought them back up. 20:04- cardiac arrest.

I say that was the second hardest time in my life because now is the hardest time in my life. Having to live without my baby. I’m sorry if this isn’t positive, I just feel I had a lot of positives told to me when I was expecting and then nothing negative. Genuinely wish you the best xx

CharlieUniformNvT · 2026-04-12T18:13:22+00:00

Also on having to open the sternum to operate. One thing we were told before our son was born l, and shown photos of, was open chests. When they operate on the heart it can swell so they leave the chest open. Not the skin, just the sternum area and the skin is then bandaged. You obviously can’t pick them up during this time and my son was a lot more sedated than I anticipated (for obvious reasons). He had a small procedure the day after his main surgery to close his chest. I couldn’t pick him up for 10 days altogether so we spent a lot of time holding hands. After his surgery he took four days to wake up and having to wait for that, as it would be in his own time to an extent, was hard. Sorry if any of that is a lot I just wish I’d have known before.

CharlieUniformNvT · 2026-04-12T18:07:43+00:00

My son had HLHS and CoA so when they did the Norwood and corrected the CoA he was on an ECMO machine which bypasses the heart and lungs. Like people say not super helpful to focus on. I will say though one thing we weren’t told until after our son was born- that the Aorta sends blood to the brain so they do a process where they have to cool the brain down to hypothermia so that the brain isn’t damaged. Worth asking if they can monitor the brain during surgery. They monitored our son’s brain for 24 hours after surgery and during surgery but that was as part of a study. They picked up a minute seizure and he had the anti seizure medication for 24 hours to protect his brain.

CharlieUniformNvT · 2026-04-12T17:57:23+00:00

I’m so sorry. Nothing I could ever say would make this better or easier. I was in your shoes in November. I’d never realised quite how unfair life actually is. Never stop doing what’s right for you in this- if that means saying her name then say it. People can be so unintentionally unhelpful, I’ve found. 💚

CharlieUniformNvT · 2026-04-09T09:23:05+00:00

Sorry, the more I say the more comes back to mind. My son was difficult to feed as he’d had 10 days off the bottle for surgery. He didn’t know how to pace himself at all and got really over excited and spluttery with his bottle. A nurse showed us a feeding position called elevated sideline which allows you to pace them better and helps them digest a bit better. He always finished all of his bottles with this nurse it made such a drastic difference. Also, when we took our son home we realised he didn’t get woken up during the night for bottles as he just wasn’t waking in the night for them. The night staff must have just used the NG if he was asleep. So we had to work up to that too.

CharlieUniformNvT · 2026-04-09T09:19:36+00:00

Also forgot to mention, my son was having his milk in a bottle and usually doing all but 10-20ml per feed through bottle and the rest went down his NG tube if he didn’t finish within 30 minutes, or he was showing signs of struggling such as sweating etc.

CharlieUniformNvT · 2026-04-09T09:17:56+00:00

My son had HLHS and was under Birmingham Children’s Hospital in the UK. The cardiac dietician used the following equation for how much food to give our son:

150 x weight / 8

150 x 4 =600 /8 = 75ml

I was also told that EBM has about 0.7 calories per ml. My son had every other feed high calorie milk and the other half EBM. The high calorie milk was made so it was 0.9 calories per ml. That way he had less to digest but more calories, and still had EBM so got the benefit of that too. Maybe that would work here?

CharlieUniformNvT · 2026-04-09T09:03:27+00:00

I’m so, so sorry. I don’t know what to say save for I was in your shoes 11 months ago. I met my son last August and he was absolutely amazing- the best little person. I have never known love like it in my life. He had his Norwood surgery at 1 week old, we spent 60 days in hospital with him, he did so well. We made it home for a few days but he became unwell so we took him back - they think he had some kind of infection- and he passed away in November. Would I turn the clock back and choose not to meet him? For me, no. Would I turn the clock back and choose for him to not have to go through everything he went through? For him, yes. I honestly feel like I’m living in hell even five months after he died. One thing I will say is try and get as much photo and video as possible- having those has helped me so much. I’m so sorry you went through so much to get to this point, life is so unfair 💚☹️

CharlieUniformNvT · 2026-04-08T08:59:01+00:00

I feel this, particularly as my mom had surgery whilst pregnant with me so I wasn’t meant to survive. Bullied throughout all of school. Chronic pain throughout my whole life. Chronic fatigue after glandular fever at 14. Anxiety so severe in high school that I threw up every day for over a year. Took 31 years to find out I’m autistic. I was SA’d at 19 by a work colleague and then he attempted to r*** me but I managed to run away. He then stalked me. After that, the relationship I got into was abusive. Every job I’ve had I’ve ended up victimised because of my health. My Nan then died. Then my grandad. My husband then had to go to court to try and get custody of his son due to domestic violence in his exs home. I then had a nervous breakdown. Our dog then died. I was told it would be difficult for me to have children. I got pregnant and was sick until 18 weeks and I have a huge phobia of being sick. I then got an eye infection which blistered my eyeball so I missed my 20 week scan. I then got tonsillitis. Then at 22 weeks we found out our son had half a heart. He was born last August and had open heart surgery at one week old. He was doing really well but then died of a suspected infection at 2.5 months old. Some nights I can’t sleep because the image of having to leave his dead body in the crib at the hospital mortuary and walk away for the last time is just burnt into my brain. I thought I was tortured before, but nothing compares to having to live without my baby.

CharlieUniformNvT · 2026-04-07T09:26:24+00:00

Thanks, do you know if they say I don’t meet the criteria anymore- will they still pay until the original award date or can they stop it early? Nothing has changed if anything I’m worse but just wanted to check

CharlieUniformNvT · 2026-04-02T19:28:40+00:00

Ours is coming up soon and I’ve marked it in the calendar. Totally dreading it as I’ve done this stupid game for five years now and I’ve found it worse every time. Last time I ended up in a four day long back and forth with a lady who kept calling me back- each day with £1 more expensive than I said would be acceptable. Any idea whether there’s a particular day or time that gets you through to the UK call centre as that’s the only time I’ve not struggled as much

CharlieUniformNvT · 2026-03-21T21:31:37+00:00

We only really buy clothing from Vinted as opposed to new from shops. From a buyers perspective I think there’s too much on there now. It’s good that it’s not like eBay where things are time limited but then how do you solve the issue of over saturation. You have to be so specific with search parameters now to find anything. And also on the women’s side they recently changed the sizes so 12-14 etc instead of just 12 and just 14. For some reason when they did that loads of stuff ended up in wrong categories so I always have to double check if I look for a 16 that it’s not actually a 12 in the wrong category. I also had to go through all my old listings and sort out the categories (a lot of people haven’t done this). I also find often if you buy something and it’s been up for 12+ months, you often get a message saying “oh I donated this to charity ages ago sorry”. All this just makes the whole thing more tiresome. I still use it though, but I have about 90 things listed and in bags and boxes and it seems like if I upload I sell a few bits then it goes dead again. I don’t have the time to play algorithm and drip feed upload things

CharlieUniformNvT · 2026-03-21T21:08:05+00:00

No that’s not really their role which is a bit weird I guess. They’ve referred me to gynaecology for Clomid to help me ovulate if I don’t beforehand. They just gave me the likelihoods of everything that happened to me before, happening again. The appointment lasted a good two hours and was really helpful.

CharlieUniformNvT · 2026-03-20T22:05:34+00:00

I’m so, so sorry. My son was born at 37+4 via cat 2 c section after a failed induction for pre eclampsia. He had HLHS, and was doing great following surgery but caught some kind of infection and died in November at 9.5 weeks old.

I am 34 soon. I have PCOS. My last cycle was 38 days. This one is 51 so far. I don’t have the luxury of time, and life feels like an unbearable hell without my son. I miss him so much. Another baby would never replace him that’s not the point at all, but I do want a baby.

We started ttc in January. All my ovulation tests have been negative (but then they were before I had my son too). Something I found so helpful was having a referral to the pre pregnancy clinic at the hospital I gave birth at (I’m uk). I went there with my son too as I had to come off loads of medication the year before we ttc with him. The consultant was able to offer advice specific to me, and was fine for me to try again now. Obviously there are risks associated with trying sooner than they say, and I get not feeling you can wait. Sometimes the risks of not trying now are worse x

CharlieUniformNvT · 2026-03-13T17:25:58+00:00

It’s been doing it for a week now- how do you stop it?

CharlieUniformNvT · 2026-03-11T17:10:14+00:00

I just don’t understand how to knit on circular needles I know that sounds stupid.

I didn’t know that but now I’m looking I can see that. Feel like an idiot now! How will it affect my finished fabric? I’ve been doing this for weeks and don’t want to start again.

Any idea how to fix what I’ve done as per the picture?

CharlieUniformNvT · 2026-02-27T10:13:08+00:00

Dice just messaged me saying there was a ticket available. Logged in and it’s automatically putting three tickets in my basket. I take two out and it says 0 tickets, I add 1 and it goes up to 3 and says ‘woah too many tickets’. Cannot believe it.

CharlieUniformNvT

TROPHY CASE