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I Am Terrified

My four month old baby goes in to hospital tomorrow evening and she has her open heart surgery on Monday morning.

It needs to be done, she'll die without it, but it's so unbelievably scary. I just wish we could swap hearts so she could be well.

I'll be staying in a strange city, all by myself with her too. I can handle it, but my energy is drained, I feel like I could sleep for 12 hours. To put it in perspective, the nurse told me most babies like my daughter have to be continuously tube fed. My daughter is on no meds and has always just fed from the bottle. It's so exhausting and I never feel like I'm doing enough. I've got her to 12.5lbs with blood, sweat and tears and all the willpower I possess and I'm seriously in need of rest, which hopefully I might be able to get soon.

Ultimately, I've put everything into getting her big and strong and this will hopefully aid a swift recovery. Please, if you have a moment, send a little positivity our way.

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Fungirlmmm · 51-55, F

You and your daughter will have my prayers as you are going through this horribly scary time if your lives. Please let us know how things go.

Starsandfire · 31-35, F

@Fungirlmmm thank you, I appreciate it. As heart defects go, hers is "routine" to fix (so much so, we were asked to do a clinical trial 🙄) so I hold out hope for a great recovery and home in a week.

Fungirlmmm · 51-55, F

@Starsandfire My son might still be alive today with the advancements that they have made in pediatric medicine just in the last years. My heart always goes out to those that have children in peril. I know first hand how those hours feel like weeks.

Starsandfire · 31-35, F

@Fungirlmmm oh that's so sad, I'm sorry. You're right though, medicine has advanced massively and I feel lucky that my daughter was born when she was. She has down syndrome as well, so not so long ago she would have been probably chucked in a home somewhere. Thank goodness we have moved on

Fungirlmmm · 51-55, F

@Starsandfire Yes, I have a relative that has down syndrome. One daughter doesn't and one does have Down Syndrome. She has lead a pretty normal life. She is an adult now. She is in college and her parents pay rent for a roommate that is in the psychology department and then an hourly pay on top of it to be her roommate. That way she gets the feel of college life without her parents hovering. She is one of e sweetest people I know. She will never be able to live on her own but she does well.

Starsandfire · 31-35, F

@Fungirlmmm I think most high functioning adults live in supported housing. But time will tell how her life will go. Right now she's full of life, LOUD and smashing all her milestones. We are positive for her future :)

Fungirlmmm · 51-55, F

@Starsandfire That's awesome.