My daughter might die and I can’t cope

[PunnyDeer]

My daughter is 2 1/2 months old.
She was born poorly with a condition called chylotorax. Doctors did genetic testing and found out she has Noonan Syndrome.
She recently outgrew NICU and was transferred to our local children hospital’s PICU.

She got an infection and is very poorly. I didn’t realise how sick she was until this morning, one of her doctor’s offered to call the palliative team in case the worse comes to the worse.
He said her situation is very dangerous, and there’s a real risk she might pass away, and it could even be this weekend. She could get better but there’s a serious risk she does not. Her underlying condition is also still present.

Theres so much going on with her, I don’t write it down as it upsets me too much.

I can’t cope!! I don’t know I will cope if I lose her! I’ve never been in so much pain. She’s on the oscillator and sedated. I can’t look at her without breaking down. I am beyond terrified.
We don’t have childcare but my husband’s family is on their way to us. In the meantime I’m in our Ronald McDonald House with my other kids, and my husband is with her.

I am a mess.
How do people do this? Will I be in agony and sad for the rest of my life is she passes?
How do you ever come to term with that? Will any of us ever be happy again?
I want to die if she passes.
All she’s ever known is the hospital rooms and machines, she’s never seen anything beautiful.
I only got to hold her a handful of times. She only got to have my milk or formula a couple times because they stopped feeding her.

She was starting to get so much better and was off respiratory support a couple weeks ago, and now she’s on an oscillatory ventilator!! How is that possible??

She started life knowing only your voice, your heartbeat, the warmth of being inside you. Your love ran through her veins the whole time she was in you. There is nothing in the world more beautiful than that.

I am so sorry things seem so bleak and scary right now. Take it minute by minute, there will be support for you and your family. Sending so much love and strength your way, and to your precious and perfect daughter

I'm sorry to hear this. I'm sending you love, strength, and prayers x

Practically - see if you can get in touch with the local children’s hospice. They may come out and see you at the hospital to talk about support they can give both you and your daughter.
I have been in your situation, and I’m very sorry. My son had a heart condition. He was in hospital for the 6 months of his life before he died.
I can talk to you about the practicalities of if it happens if you want me to. I’m 8 years on and I can confirm - the pain lasts but it is not all consuming. You can live a life. You can be happy.
but I would encourage you to stay in the moment with your daughter. She is here now. That is what matters right now.
sending a lot of love.

Oh OP my heart goes out to you.

Many years ago I had a baby born 17 weeks early. The pregnancy had been going fine and her birth came as a complete shock. She spent weeks and weeks critically ill and with her dying a daily possibility. Looking back I'm not sure exactly how I got through it.

My only advice is to try not to think ahead, just take each day, even each hour as it comes. Take support and offers of help from any source that you can. Try and take some comfort from your other kids. Whatever happens you can and will get through this. As a mother you are stronger than you ever imagine.

Unfortunately after turning a corner and getting much better, my baby caught an infection and died suddenly and unexpectedly aged 9 months. I thought my heart would break, that I couldn't go on living. I was sure I could never be happy again. But very very slowly, things started to get a little less raw. Sometimes I seemed to take a step forward and 2 steps back. Now more than 30 years on, I still think of her often and have a little cry, but my life has been better and happier than I ever imagined it could be when she passed.

I very much hope that your baby manages to pull through this and you get a happy ending. Be kind to yourself lovely x

I’m so sorry OP I can’t begin to imagine what you are going through.
I’m sure lots of MN will have really good advice of where you can find help/support. I’m sure there will be individuals who have been through a similar situation and can offer help and support too.
Gently I have to say don’t lose sight of your H and other children - I’m sure you won’t but you’re going through an horrendous time and naturally your focus will be on your ill baby.
Sending every good wish for you and your family.

I’m so sorry. can you take her out to do beautiful things if she does pass? Nowhere near the same as losing a living child, but my baby died a few days before due date a few months ago and the hospital gave us loads of choices for spending time with him, including an enclosed cooler pram designed to take them out to the gardens once they’ve passed. At least then you can have a little closure of showing her the autumn leaves etc.

hopefully she does pull through though, fingers crossed for you, it’s unimaginably hard.

🩷🩷🩷🩷🩷🩷 thinking of you

Sending love and strength to you all.

Oh you poor girl. Sending you much love and thought as you sail these stormy waters xxx

Sorry for what you and she are going through. Life is so cruel sometimes. I know that she will be able to feel your loving presence with her. My fingers will be crossed and you will be in my prayers.

Sending you love and strength I’m so sorry you’re going through this op ❤️

Sending love and hugs.

Oh sweetheart, sending all the love to you and your beautiful girl

One step at a time.
There's still a chance of recovery, try and embrace every moment with her.
If the worst comes to the worst, you have other children and they can be a great motivator. You can get through anything because you need to for them.
I wish your DD a speedy recovery 💕

Just take it moment by moment. And don't think of tomorrow, just exist in this moment. It's the only way to manage sometimes.

Thinking of your family tonight

Well I didn't bank on bursting into tears on a Friday evening! What a gorgeous post.

Op, this is heartbreaking. I have no advice, and no words other than we're all thinking of you, and hoping for the best possible outcome. 💐

She’s never seen anything beautiful She has seen your face and felt your love, I can’t think of anything more beautiful.
Sending you love and peace 💕

OP, I am so sorry you are going through this. I am going to be blunt, I have been here (a different condition though), and my dd got an infection and did not survive. You will cope because you have to. Take it minute by minute and keep putting one foot in front of the other. The next few days will not be easy. It is absolutely horrendous and people who have not lived the nicu/ picu experience do not understand. The talk of palliative care is scary and I don’t think drs understand the impact of their words sometimes. We were offered the same early on and it sent me into a spiral.

For now, hold her hand, talk to her, do whatever will bring you comfort. I hope and pray your baby will come through this. From your OP it sounds like you have other dc, make sure you lean on family or friends to get the space and time you need with your poorly girl.

Nicu/ picu life isn’t a straight line. Our babies often have setbacks like your dd is now, and still come back fighting. If you would like to talk to someone who has been there, please PM me.

7 years on after losing my son who was born too early for Dr's to save the pain is there but it does ease. I assume picu is similar to picu, id reach out to the chaplaincy team they were a comfort to me and I'm not particularly religious. Ronald McDonald house were also good as were the palliative care team. You are not alone. X

My God I really should not have read all these responses where your young babies passed away I am literally sitting here crying my eyes out.... I am so sorry for everyone who has been through this this is horrible.

Sending love & prayers to you all xx

Reposting this as it also caught my eye.

Please ask the support staff at Ronald McDonald to contact the chaplain on call and ask them to attend to see you. The can offer so much more than the traditional religious support. I am a midwife and I am in awe of the strength parents find and their love and devotion to their children in the absolute hardest of times. People have bravely shared what has helped them - focusing on an hour at a time is a good idea although I know your thoughts must be racing. Please know that support is available for your family and everyone involved in your daughter’s care know she is loved and cherished ❤️

I was there 2 years ago with my own son right down to PICU, oscillator ventilator and doctors telling me that they had little hope.

Little hope isn't no hope. Talk to her, tell her how much you love her, play her the music you want her to hear. She knows that you are there, she knows that you love her and that is all the beautiful she needs, I promise.

My son survived against all of the odds and I hope that is your daughters story too. xx