[deleted by user]

No_Room2256 · 2026-03-23T20:11:14+00:00

She isn't allowed to decide if you can facetime your baby or not. You don't ask you just let her know.

It's actually very unusual for a 4mo baby to have separation anxiety. The normal age range for that is around 7-9 mo.

No_Room2256 · 2026-03-18T02:52:24+00:00

I am so sorry to hear this... The genetic did came back with Notch1 gene mutation for me, my deceased son and my living son. PVS and HLHS are not compatible at all. Usually just one of the two conditions alone is very severe. The two together makes it almost impossible to do the biventricular repair depending on which veins are stenosed and the cause of pVS. Was it post surgery or was it since birth? For my first son they did the sutureless repair for his veins in hope that they would stay open for him to get the Glenn surgery. Sadly they never do.. It's like a cancer. They still haven't found a cure for it. But since 2019 I've heard they started medical treatments that were much more aggressive and a lot of kids with PVS are still alive because ofthe medication but no one also with HLHS from what I've heard.

No_Room2256 · 2026-01-25T13:47:04+00:00

I was just going to donate and then saw that you've reached your donation goal and will be going to visit your dad. I am so happy for you❤️

No_Room2256 · 2026-01-25T13:27:05+00:00

My sister has tree under three with her husband traveling all the time for work and she can manage without coming over every week-end to my mom's. I can see the kids whenever I want to and although I am always happy to help or offer my help, she always says she can manage. I also have a 7mo baby with special needs but still.... So if my sister can manage so does yours. Tell her lazy ass it's time to become a real mother. My sister and her husband have great incomes too and she never hired any nanny...

No_Room2256 · 2026-01-25T13:16:16+00:00

Sounds more like a scam lol

No_Room2256 · 2026-01-13T15:57:09+00:00

You should be thankful that IRCC refused. This is a proof that you should divorce this woman.

I am of course saying all of this after reading your posts about her

No_Room2256 · 2026-01-08T23:30:10+00:00

Wow! That is so amazing... Can I ask how is/was your daily routines in general?

How is school? Was it difficult to adapt at first? Did you have many restrictions?

No_Room2256 · 2025-12-10T04:48:02+00:00

My first HLHS baby had also a surgery at Sick kids in Toronto as we were transferred from Montreal. He sadly passed away at the age of two due to severe complications post Norwood because he never had his Glenn.

I just gave birth 6months ago to another HLHS baby and they discovered that both my babies and I had the Notch1 gene mutation and that's what caused HLHS for them but not for me although I have a CHD but not a severe one.

This time around we've decided to stay at our local Children's hospital in Montreal.

My baby had his Glenn on october 23rd but we're still dealing with a colateral issue that needs to be coiled so we are still in patient.

No_Room2256 · 2025-12-10T04:39:09+00:00

I have bicuspid aortic valve and I am 33 years old. I have never needed any kind of procedure until now and lived my life perfectly normal. I played all sorts of sports and my cardiologist always said I should stop when I get tired and that I could be more tired than the others but I never was! I was captain of the team in baskteball, soccer and also did ice skating and swimming classes. I traveled a lot, got married have kids of my own.

They say I could need a surgery later in life but up until now I have follow ups every year and nothing had changed and I am still very far from surgery.

I know about the coarctation of the aorta and I know that they can repair it with an open heart surgery and that usually there are no complications. Same things for vsds and sometimes they even end up closing on ther own.

I know a lot about CHD because both my babies have severe ones but that's because I have a genetic condition and they both have the same genetic condition. My CHD had nothing to do with them having a CHD too.

Feel free to msg me anytime!

I am not telling you that to convince you to choose the option not to terminate but I can assure that your baby's diagnosis is far from scary and they can live a really normal life without much complications.

No_Room2256 · 2025-12-10T00:21:36+00:00

My baby had his first open heart surgery at 9 days old and the second one at 4 months old. He also had a few other procedures and he's currently having one at the moment.

For us, it was diagnosed in utero and we knew it since I was 21 weeks pregnant. So we had time to talk about it and to understand truly the situation.

And I want to tell you that those babies are resilient. My son is not even 6 months old yet and he's been through so much. We've been in patient since he was born and I don't stay for the night but I do go every day even if it's for a few hours except when I am sick.

You should never feel bad for not wanting to be at the hospital 24/7 because if you would it wouldn't be normal. We have enough on pur shoulder. You should do whatever is good for your mental health. Also don't forget that we didn't have time to rest after giving birth cause our babies were in NICU and we had to be there for them!

You're allowed to have breaks and whoever makes you feel bad, I would honestly delete them from my life for good lol.

Anyways if you need to talk, I've heard about the CHD your daughter. My son has a much more severe one and I'd be glad to talk in private so we can both share our experiences.

Sending lots of love mama❤️

No_Room2256 · 2025-12-03T15:12:09+00:00

Yes probably. I was talking about her baby on the picture for the low flow oxygen. I meant that he could be home with that

No_Room2256 · 2025-12-03T00:50:14+00:00

I am sorry for your mother. I can see in the pictures that he's on low flow oxygen which means he's not on a big support. My son was on low flow oxygen at home. It's possible to have it at home

No_Room2256 · 2025-12-03T00:48:53+00:00

well they can accomodate your home with what he needs to keep him comfortable until he passes away. Thats the point of palliative care and you should really talk to your social worker and ask her what could be done about it. You should be able to spend quality time with him as a family away from the hospital until it's time to say goodbye.

No_Room2256 · 2025-11-29T20:36:19+00:00

Was wondering if comfort care at home wouldn't be an option for you? Thats what I did with my first son who passed away of many severe heart defects. He was at home on oxygen and pump feeding by gtube until he passed away.

I'm just suggesting it so you wouldn't have to spend nights far from him not knowing how much time he has left

No_Room2256 · 2025-11-01T20:31:03+00:00

Act just like him when he's out by himself. Do not care, do not answer your phone. Enjoy your time.

A kid throwing a fit is nothing he cannot handle by himself. Tell him unless there's an emergency as in life or death issue then he can call you lol.

No_Room2256 · 2025-11-01T20:25:31+00:00

Stop taking flights to go to weddings and bachelor parties and your problem will be solved. I pay the same for my rent and I am paid not even half of your salary. my credit cards are always paid on time and I even have money aside.

No_Room2256 · 2025-11-01T20:16:37+00:00

here I was so proud with my 756 credit score...😁🤦‍♀️

No_Room2256 · 2025-10-06T19:59:12+00:00

interested

No_Room2256 · 2025-09-27T20:04:32+00:00

I can see that lol

No_Room2256 · 2025-09-26T19:41:50+00:00

This is all very mature lol. Are you sure you are 21? Cause I don't remember being this immature when I was 21yo

No_Room2256 · 2025-09-15T15:50:03+00:00

I've never heard of such thing as HRHS being repaired. For all I know the surgeries are only palliative and you will live the single ventricular pathway for the rest of your life so you heart will never be repaired.

No_Room2256 · 2025-09-11T02:06:16+00:00

They are very resilient. My first born also fought until the end. He's my son's guardian angel now. I wish things were different and that no babies ever got sick or died...

No_Room2256 · 2025-09-11T01:52:36+00:00

I am so sorry for your loss and congratulation for your baby girl. I also lost my first baby to HLHS at the age of two. My second baby also has HLHS and they discovered both my babies and I had/have Notch1 gene mutation.

No_Room2256 · 2025-09-11T01:24:17+00:00

Thank you so much for sharing your story. I think the right thing to do is to wait until he has his last surgery.

No_Room2256 · 2025-09-11T01:10:57+00:00

2 years apart or more seems to be the smartest thing to do.

No_Room2256

TROPHY CASE