Need some positive stories - really worried!

[Bladesgirl]

Ok so my baby boy was born on Monday by emergency section and when he came out he wasn't breathing and his heart rate was low. They got him oxygen and then lost his heart rate and worked on him for 16 mins. He has since been on a cooling machine and has been in nicu.

No one can tell me anything and they are controlling everything for him at the moment. He keeps having fits in the night which they tell me in the morning.

I know he will have some sort of brain damage but it could be literally anything?

Has anyone gone through this and what outcome have you had?

 

[SucreK]

Hello! I don't personally have experience with hypoxia, BUT my friend's daughter was born with oxygen loss and was sent to a local children's hospital for brain cooling. She is 3.5 now and is perfectly on track developmentally. She did sustain kidney damage, but is doing very, very well all things considered.

I am so sorry you're going through this. Though my twins didn't need cooling, one did have multiple surgeries in the NICU and stayed for 74 days.

 

[vermeil]

*gentle hug* my son was a micro preemie; he was so fragile he would go into full arrest multiple times a day. It could take hours to stabilize him. Early scans showed confirmed brain damage.

Our little ones are amazing though, resilient and their little brains are flexible and rapidly changing.

My son left the nicu 4 months later, partially paralyzed on one side. They said he would never walk and would have disabilities. We did intensive physio and within a year the paralysis was gone. His brain had adapted/ autocorrected. As a micro preemie he developed slower than his peers, he hit his milestones far later. But guess what, he is a healthy, bright 6 year old now and is finally starting to catch up. You would never guess he weighed 1lb at birth, had 25% survival odds and had brain damage.

I remember the hell of those months though... I was in a deep dark pit of hopelessness and helplessness. thinking of you. If you want to talk please pm me. My son's story is in my sig.

 

[Bladesgirl]

Thank you both of you! We are now on day 7 of NICU. He's off his cooling and off his breathing machine. He's doing ok on that front.

No further on with any of the brain damage side and still waiting for tests and results. He's trying to learn to take milk on his tube but that hasn't been going well at the moment

 

[SucreK]

I'm so glad to hear he's off the machines already! What a strong boy! Please feel free to PM me, too, if you ever want to talk. It is terribly hard going through the NICU experience and it can help to talk to people who understand.

 

[Kiwiberry]

I have no experience with what your going through hun but I want to follow your Sons story. Really glad to hear he's doing a little better. Hang in there Mama you can do this .

 

[AP]

Alex had brain damage when she was born too. We never found out the full extent until a good few days after her birth, but, shes 7 now (I dont even know how this happened, it doesnt seem that long ago i announced her on here!)

The first year of the unknown I guess was the worst, and if I could advise anything it would be to enjoy them as babies, put the worries aside. You just dont know what will happen in the future to enjoy the "now"!

(Alex is in mainstream school, she didnt talk properly until 4.5 years but she never stops now! Her reading is ahead of most in her class and she does still get help with smaller areas in education, shes doing great! She does have autism but no biggie)

 

[Bladesgirl]

Thank you for all your replies on here - sorry it's been a while finally got him home and in to some type of normal routine with my other little boy! Joshua is doing well at the moment. his MRI came back clear and hasn't shown any bad signs yet. Trying to just enjoy him which is hard as always worrying. He's having issues with his blood results to do with thiorid and also has to have some more hearing tests but both of this things are nothing to do with his birth problems which is good in a sense but annoying in another.

Feeling really disconnected from him and his big brother at the moment though so talking to health visitor as she wants to check for Postnatal depression. Says it's more likely as I didn't have him normally and I didn't see him when he was born for a while, plus I've had depression before! At least I'm going to be checked over and get help before it gets worse.

 

[Kiwiberry]

So happy to hear he's home where he belongs . Fx everything goes ok for him. Sorry to hear you've been feeling disconnected. I felt that way with my 2nd preemie. I hope you get the help you need and start feeling better.