Seeking Moms with Premature Infants Who Went Home on Oxygen.

I don't know about that, I'm sorry. I just wanted to say I'll pray for your little one to get better soon. Good Luck!!!!

What a scary time for you. Although I don't have experience specifically with a premature baby, one of my family members did have a premie who also had lung problems. From those experiences, I can only say that you know your baby better than anyone else so do not listen to the Dr.'s if you feel that they are rushing your child. They are not with him on a daily basis and don't see what you see. You are your baby's best advocate...don't let a Dr. intimidate you or talk you into something that doesn't feel right. Good luck.

I had twins born at 31 weeks that went home on oxygen. They stayed on the oxygen for another 2 1/2 months. We were relieved when they went off! They just needed a little oxygen to help their lungs (1/8 liter). The pediatricians told us to put it up if they needed it and then try lower settings if they tollerated it. We were also on an oxygen saturation monitor that let us know if they were not getting enough oxygen. I would assume that if you take them off of oxygen before the baby is ready then it could cause problems. I am not sure if you have a oxygen saturation monitor but that us what we used to know if we could take them off oxygen. When their saturation levels remained above 88% but mostly above 92% for several days off oxygen then we knew they were ready to be weaned. Anyways, I hope this helps.

Hi L.. My twins were born prematurely and Brendan was on the Vent and came home on oxygen also. He was on for about a month after he was released from the hospital - so for about 3 months. Do what your gut tells you to do. Sometimes those Drs and Nurses push them too far too fast. Just keep trying every few days to decrease it, and if he is not tolerating it, try again. Brendan got to the point that he was just on the 1/8 liter but couldn't get him all the way off - we wound up doing the "oxygen game" - we left the oxygen straped to his face and as long as it was there - he was breathing better even though it was not turned on - we would take it off - and his stat would drop! It is very frustrating to wean them off.

On a positive note, he is going to be 5 this month - and has pretty much grown out of any lung problems that existed. In fact, the last couple of years he has done better than his twin brother - I contribute that partly to the fact that maybe the steroids helped to build up his lungs stronger than Austin's.

One thing the Drs never told me that was told to my Cousin that had a baby 10 wks premature was that being on oxygen for months can lead to problems with eye sight. Her daughter has had glasses since she was 2 1/2. I never was told that - maybe my son was not on it long enough for that to be a concern but you might check into at what point that becomes a concern.

L.

have you tried the March of Dimes website?
I know there is some good connections on there..and great information. there is also a place that is 'share your story' where you can connect with other moms.

I wish i could help you. our daughter was born 3 months early at 28 weeks and stayed in the NICU for 77 days but she didn't come home on oxygen or monitors. i do however have a few friends who had their babies come home on oxygen and/or monitors and one that was still on oxygen at her first birthday.
every child and story is different so it's hard to say what they did would be what you should do. but atleast by connecting to other preemie moms you could feel less alone.
it's very scary and i'm sure you just want some sort of answers.
i wish i had something better for you
there is also a preemie magazine.
http://www.preemiemagazine.com/

i'll email some of my friends and ask them to log in and take a look at your question. wish i could be of more help.

also
http://www.kidshealth.org/parent/growth/growing/preemies....
T.

I have a 2 1/2 year old that was born at 27 weeks, spent 10 weeks on a ventilator and came home on oxygen and an NG tube. She was on oxygen full time for 18 months due to her chronic lung disease, and still remains on oxygen at night. I am NOT a doctor, but definitely have experience in this area! With my daughter, we have always weaned when her stats have allowed. Doctor's orders are to keep her at at least 92-93%, but I like to have her at least 94-95%. She has been up and down for two 1/2 years...requiring more oxygen when she is sick, and now down to about 200 cc--hopefully to come off soon with summer here! From what I have always been told, at this point, the oxygen is just doing them good. A 1/4 liter is not much at all...and even if your baby "could" do OK without it, he probably feels much better with it. With my daughter, we found that if breathing became labored and she started breathing faster...her stats would probably drop next and we would have to turn her oxygen up. I wouldn't be in a hurry to get him off of the oxygen...it really just is helping him at this point. As far as the feedings go...the smaller amount is better so his tummy isn't too full and putting more pressure on his lungs, making it harder to breath. We had to be very careful with how much we fed our daughter for a long time...and also did the "every two hours" for a long time. She is still tube fed, but can now handle 8 oz no problem. I know it is frustrating, but things do get better! If I can help in any other way...let me know!

L.,
As the mom of 3 preemies - 1 with an extended stay in NICU and all 3 with problems for years but 2 of them are in college now and perfectly fine, less the eye-sight problems that come with oxygen. My stomach turned reading this because you will never be the same! You worry about every decision the doctors make and every decision you make. So know that worrying is the "new normal" for you. And you must adapt to the term new normal because you will have new normals all the time now.
Feedings for my 3 preemies were 1oz. every hr. remember that you holding the baby, him eating, and digesting the food burns calories and tires him out QUICK! HE needs his energy to breath with his condition breathing is VERY HARD WORK. Also, less food in the tummy takes up less room in the chest cavity. His tummy is only as big as your thumb and pointer connected - that's it.
One of my girls eye sight is horrible because of the oxygen. So you do want to get him off a.s.a.p. but not too soon. My oldest "belly breathed" or "labored" for a long time - like 2 years! The 3rd and 2nd was like a yr. The first and 3rd did have some sleep apnea. IT IS SCAREY. My 1st caught bronchitis as soon as she went home. And when she came off the oxygen, she threw-up mucus bubbles or balloons or balls I don't know what to call it but by the third I knew to have a bulb syringe ready to suck mucus out of her mouth and get her breathing again should she have trouble ridding herself of the mucus. Remember to squeeze the bulb BEFORE you put it into his mouth and sweep from one side to the other as you release the bulb. Have a dedicated syringe for his mouth and one for his nose. If you have the big strong one, you probably don't need to squeeze it all the way. If you do not know how to do this PLEASE write back so I can give you better instruction if they did not at the hospital.
My husband works in medicine and he says, "you are with the baby all day, the Dr. is with her 10 mins. you know what is best". The other thing he tells me is to question the Dr. why are you doing x, is there an alternative for x, do you see x often, can you recommend a specialist? QUESTION,QUESTION,QUESTION. Contrary to what we think, the Dr's do NOT review the childs' file completely before each visit. So my husband suggested that I LOG EVERYTHING into a note book. This is so I could provide quick answers like when does x happen, you look and see in your journal. When the Dr. says what med.s is the child on, again you can look and see. You need to separate your journal into a few sections.
One - med's and results of such meds. (including oxygen)Because the Dr. will ask - how do you think it is working? Or is it working? When are you giving it? How much are you giving?
Two - a section with notes on how the baby is feeding and passing the milk - like how many wet diapers and BMs. Color consistency.
three - a time line of his health - nut shell of whats gone on thus far.
You get the idea of the journal I am sure. Also, I keep a pocket folder with copies of test results so I am able to hand the Dr. anything he might need to make the most of the appointment.
You can call a respiratory therapist and ask questions, they will answer GENERAL questions. You can also contact a pulmonary specialist, there is no reason not to. BUT be sure you have your info. ready when you call with questions. Chances are the little guy has a pulmonary specialist (I am sure he has one form his NICU stay) already and you can call the office and say I would like Dr. X to call me, I have a question. Follow that up with I really do not want the nurse to call me back, I would like to speak directly to the Dr. Remember pediatricians are NOT specialists.
DON'T BE AFRAID TO BE ASSERTIVE, not rude but assertive. Remember if he can't breath, he can't live. And he is in your care so you need to do everything you can for him. And if the Dr. did not think that you could handle it, he would NOT have sent him home with you. So put on your big strong mommy hat and take charge, you can do it! Best wishes and big prayers. M.

I am a mom of micro preemies. They both came home on oxygen. If your child is laboring and reduced feeding call your pediatrician immediately to give them the information.. It may be they will bump your child back up.

And our doctor did use the method of weaning our boys own pace. So we would go down in oxygen and go back and go back down until they could finally handle it. And if you don't feel that he is ready, tell the doctor how you feel and discuss in great detail. Our doctor was always great and would listen mine and my husbands concerns. And for a deadline or how long it would he would need to be on oxygen my boys were on oxygen for 5 months after coming home and apnea monitors for eight months after coming. Nervous mom.

But now call your doctor.

Hi L., My son was born at 26 weeks gestation, spent 4 months in the NICU, and went home on oxygen. He came off at 6 months old. I wonder who your pediatrician might be? If he has reduced the amount of food he can take, perhaps he is laboring in his breathing. He seems to be getting nearly the same amount of food, but you're the best judge of how he's doing. Is he gaining weight? Does he sleep alot more? If you're not happy with the doctor's advice, seek another opinion. Our doctor in Des Moines specialized in preemie care, and he was a godsend. Incidentally, our daughter was also premature, but didn't need oxygen, thankfully. Our son is doing very well now at 6, and has no signs of lung problems! Good luck!

Hi L. F.
Congradulations on your new son. It sounds like he is doing well. I would like to recommend that you get an clean air system installed. There are several types and brands in the market, some are quite spending, but if you shop around I know you can get on at a reasonable price.
Also if he is having laboured breathing, you should talk with your pediatrician. He might want to increase it for a short time.
Let me know how things are doing.
Good Luck,
D.