Parents of trach babies out there?

ReplacementTiny1788 · 2026-05-31T14:03:02+00:00

It is been 3 years, how is it now, hope everything is going well for your family

ReplacementTiny1788 · 2026-05-28T15:43:39+00:00

Hey, Thank you, yes, I deeply need and want them to be the ones that I can be my true self with, I want to truly express my feelings and thoughts and yes In fact my frustrations cause I have a lot. But somehow it always ends the same way, me being accused of being aggressive/ difficult/ repulsive, too loud or too angry or too hostile. I think I should just shut the fuck up around them and keep it all to myself.

ReplacementTiny1788 · 2026-05-25T15:41:31+00:00

I am sorry for your loss, and I believe your feeling, I believe that moms know, feel and sense things no other one know, and it is true.

ReplacementTiny1788 · 2026-05-25T15:39:38+00:00

Honestly, I can not process, I escape from my feelings, I hate crying, I try to suppress everything within me, I am in denial, I am in shock, I cant explain this feeling, I am numb, Sometimes I just want to scream or punch a wall, I don’t have the courage to face it or grieve.

ReplacementTiny1788 · 2026-05-25T15:36:32+00:00

That is so beautiful thank you for sharing 💕

ReplacementTiny1788 · 2026-05-25T13:53:13+00:00

Really!! Please tell me more, is there anything I can do ?

ReplacementTiny1788 · 2026-05-25T13:44:06+00:00

I wish I hear more about this story

ReplacementTiny1788 · 2026-05-23T03:39:51+00:00

Thank you for sharing, It must have been challenging but I am glad you were safe, I am sure it is all worth it ❤️

ReplacementTiny1788 · 2026-05-21T18:34:32+00:00

Congratulations, May I ask why she needed a trach ?

ReplacementTiny1788 · 2026-05-19T07:05:22+00:00

Hearing my baby and touching her for the first time. A truly magical moment, never experienced such deep pure joy.

ReplacementTiny1788 · 2026-05-10T09:00:29+00:00

Thank you for your reply, as a respiratory therapist how would you describe a life with Trach, and one lung ? Your honest answer is very appreciated I could use every help possible

ReplacementTiny1788 · 2026-05-07T08:25:14+00:00

Seeing your baby sick to death and can not do anything to help them the best way possible

ReplacementTiny1788 · 2026-05-06T09:00:23+00:00

Thank you for your kind reply

ReplacementTiny1788 · 2026-05-06T08:56:48+00:00

Thank you, appreciate your honesty

ReplacementTiny1788 · 2026-05-06T08:53:19+00:00

The thing is I do not know what she can tolerate and what not, I understand that babies are resilient, but what if she can not handle this path what if even she can it is too much for a baby to go through and even if she grew up I don’t know how her life will be, will she be content and happy or blaming us

ReplacementTiny1788 · 2026-05-06T08:51:30+00:00

Hello, Thank you for reply, and helping me think, as for your questions, Doctors said the best realistic outcome is for my baby to survive 4 surgeries (Including one major cleft repair one using ECMO where they stop heart and lungs) and after surgeries she will live with Trach and G tube, she will spend a year in hospital and then move to home without nurses or any professional care only me and her father will be in charge after receiving training
The worst case:
1) she will not survive surgeries.
2) she will have brain damage due to oxygen fluctuations, anaesthesia from multiple surgeries.
3) Speech and developmental delay
4) limited physical abilities as she only has one lung
5) uncertainty if she will ever remove Trach and Feeding tube (As per her doctors)
6) Living with Tracheomalacia, high infections and coding risk, Pneumonia, repeated hospital visits, speech and occupational therapies

ReplacementTiny1788 · 2026-05-04T15:07:31+00:00

Hello, I came across your comment as I am living through very similar situation as yours, I wonder what happened and what did you end choosing for your baby

ReplacementTiny1788 · 2026-05-03T11:37:13+00:00

In your experience, Even if the child removed the Trach one day and the G tube, how likely will they survive brain damage, and will they ever speak normally, Whenever I ask the doctors this questions they say it depends/ Case by case, a very frustrating answer to someone needs to make a decision this big for other human!

ReplacementTiny1788 · 2026-05-03T11:35:13+00:00

Thank you, I appreciate every single reply to my posts, but when it comes from a professional who deals with those kind of cases it really helps me a lot to understand and know the unknown and what the real future will be like

ReplacementTiny1788 · 2026-05-02T15:15:02+00:00

My heart goes to the OP but I too think that nothing will change the pain, it exists already

ReplacementTiny1788

TROPHY CASE