Topics Of Discussion
When does it stop being so overwhelming?

Preemie-l discussion forum       http://home.vicnet.net.au/~garyh/preemie_forum/
Sue asks, "My name is Sue and my son weighing 1 lb 14oz  @ 27 weeks. He was one of twins - I lost his brother at 21 weeks and my water broke with that twin a week before Ty was born - I have two older children -  and try as I might bedrest didn't stop Ty from coming so early....Tyler had a host of "preemie problems" - PDA (resolved after one dose of indocine) Grade I bleed that resolved itself - blood transfusions (4) - bili lights for 10 days... pneumonia - he was on the vent for 6 weeks...still sounds like a door opening when he "squawks" :) and BPD - he came home on 1/2 litre of oxygen and a monitor - although he has yet to have apnea or a bradycardia (lots of loose connections though) - all in all we are SO lucky and no one knows that more than me - yet I feel SO OVERWHELMED....I am an educated woman but I never thought I'd learn as much as I have in the last 3 1/2 months and all of it relating to prematurity...When we had an appointment with his pulmonologist last week I had to ask what exactly is a pulmonologist? His pulmonologist seems to think after we do a sleep study next month we won't need a pulmonologist appt ever again...we have appointments with PT's and OT's and they even came to the house...they said that Ty is at 87% for his chronological age and 117% for his adjusted age - he seems to not need any pt or ot...but they will follow him every three months - which is fine with me - I'll take all the help I can get....This morning his monitor leads kept beeping "loose connection" so I unplugged him.....his nasal cannula came off (he claws at it) so I took it all off.....and now he is sleeping so peacefully he looks so "normal" - are the nasal cannula police going to come and get me..? am I harming him by letting him be off his O's for a couple of hours? I have two older kids and know how to be a mom so why do I feel so inept about all of this "prematurity stuff" I just want to be able to not worry about it and I thought I was doing pretty good but today getting to the store with Tyler is becoming a "chore" - to carry around all the "stuff" is getting to me....I'm starting to worry about how I'm going to get up next Saturday to get to my older sons football game at 8:00a.m. cuz dad has to be out of town....I'm sorry to go on about all of this trivial stuff I just want someone to tell me its going to all be "fine" and one day we are going to look back on all of this and chuckle....and I know so many of you are going through things far worse than any of this....I guess I just had to vent....I'm sorry.....but thanks for letting me take up the space... :o) "

Karin reassures, "What you are feeling is absolutely normal! I felt so overwhelmed when Andrew was born that I couldn't think straight. I worried day and night that I was doing something wrong or that something bad was going to happen. I had to take a step back and look at the entire picture. I came to the conclusion that I was overwhelmed because this "preemie world" is somewhere I never knew I would be, something that I knew nothing about and the preemie title belonged to someone I loved so much. No matter how much I learned, there was still more.
No, the canula police are not coming after you, but the awesome mommy patrol might be by to give you a great job sticker : ) As long as you keep a tab on his O2 stats I don't see what the harm could be...unless of course he was having a's and b's or dips into the range that isn't normal for him.
I don't know how much stuff you actually carry around but I know that when I was running into the store with Andrew, I would leave his monitor behind. I had learned what to look for and he was going to be right with me so I knew that I would catch any "spells" if there were any...which there weren't!
Planning an outing with these little guys who are on monitors and O2 etc. is hard but with a little extra planning (like packing as much as you can the night before, loading the car up with his extra O2 tank etc) will free up some of your time and you won't feel so rushed or overwhelmed). If he can be off of the O2 for an hour or so, leave the tank in the car if you won't be too far away."

Cheryl adds, "I have twin granddaughters. Annie was fine just had to learn to eat. Abby had a trach. She was hooked up to so many hoses that sometimes it was hard to find her. :) She had casts on her legs for the club foot and putting her to bed was just a jumble of more wires. She also has to wear a bar across her shoes still.
I really do know how you feel, the lugging of all the equipment. It took four people to go shopping with Abby. One for Annie, one for the brother Davey, one for Abby, and two to haul all the stuff. It was amazing.
Well. to make a long story shorter, YOU will be fine. Abby used to unhook her hoses and end up in the other room. or sleeping and the tubing come apart. sometimes I would turn around and remember " OH ! Yeah , Abby needs the oxygen. When she got to the nose cannula it was around her neck like a necklace more than under her nose.
The moral to my story is: you will be fine. My daughter in law used her maternal instinct. Yes you are the mother and you know what your baby can do with or without at this point. I think if you use common sense and yet listen to your heart you will be fine. There will come a time you will wonder what you are forgetting when you leave the house with just a diaper bag and three kids. Your day is coming to be a perfect, loving, wonderful NORMAL family. Hang in there .
come back and vent, cry, or just keep us updated. but most of all don't forget to find the humor in it all. It will be only a memory someday and when you look into those beautiful eyes of your little one. ... You won't feel so bad at all."
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