Oh, my heart breaks for you reading this. I wish I could give you the biggest hug, because I cannot begin to imagine the terror you must be living with right now. ❤️
You are watching your tiny baby fight for her life, trying to understand words no parent should ever have to hear, while somehow still trying to be there for your other children. Of course you are a mess. Of course you are terrified. You love your little girl, and the possibility of losing her is more than your heart can bear to contemplate. You are not weak for falling apart. You are a mum facing something unimaginably cruel.
I wish I could tell you that she will be okay. I really do. But what I can tell you is that the doctors preparing you for the worst does not mean they have given up hope. They are being honest about how seriously ill she is, while still acknowledging that she could improve. I hope with everything in me that she does.
And please, please don't torture yourself over the things she hasn't experienced yet. She may only be tiny, but her life is not measured by how many beautiful places she has seen, how many times you have held her, or how much milk she has had. She has had something precious: you are her mum, and you love her beyond measure. You have not failed her because circumstances have robbed you of the ordinary things you dreamed of doing with your baby. None of this is your fault.
As for your question about whether you will ever be happy again if she dies, I won't insult you by pretending that grief like that simply goes away. If the worst happens, you will be changed by it. There may be days when the pain feels impossible, when you cannot imagine getting through the next hour, let alone the rest of your life. But people who have suffered the unimaginable can, in time, find moments of peace, laughter, love and even happiness again. It doesn't mean they have stopped missing their child. It means their love and their life can eventually make room for both the grief and the good things. You would not have to figure that out now, or all at once.
But sweetheart, your baby is still here. You do not have to start grieving her before you have to. You can be terrified and hopeful at the same time. You can cry, pray, rage, sit in silence or feel completely numb. There is no right way to be in this situation.
And please don't feel that you have to look at her without breaking down. If you can only manage a few minutes beside her, that is okay. If you want your husband to sit with her while you gather yourself, that is okay too. If you want to hold her hand, talk to her or simply sit nearby, that is enough. You do not have to be brave every second to be a good mum.
I also want you to know that babies can deteriorate frighteningly quickly when a serious infection takes hold, especially when they already have complex medical conditions. Being well enough to come off respiratory support and then becoming critically ill again is, sadly, possible. It doesn't mean the progress she made was meaningless, and it doesn't automatically mean she cannot improve again. Her doctors are the people best placed to explain what has changed and what they are seeing now.
Please let the palliative care team support you, too. Their involvement does not necessarily mean treatment is stopping or that everyone has given up. They can help with comfort, communication and supporting your family through this uncertainty, alongside whatever other treatment she is receiving.
And when you say you want to die if she passes, I hear just how unbearable this feels. Please tell your husband and the hospital team exactly that, even if you feel frightened or embarrassed to say it aloud. You deserve support right now, not just if the worst happens. Please don't sit alone with those thoughts.
You do not need to work out how you would survive losing her tonight. You only need to get through this moment, and then the next one. Let your husband's family help with the other children. Eat something if you can, drink some water, and let somebody look after you while you try to get through these next few hours.
I wish I could promise you that your little girl will come home. I can't. But I can tell you that you are not failing her, you have not let her down, and you do not have to face this alone.
I will be hoping so hard that your precious girl turns a corner and if you don't mind, I will offer a prayer tonight for you, your daughter and the rest of your family ❤️ God bless.