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Good News/Bad News? *Please read if baby went home on oxygen!*


Forum: Preemies/NICU

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  #1  
July 29th, 2011, 06:41 PM
SarieP's Avatar Mega Super Mommy
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Sooo we got some good and bad news today.....good news is that Liam should come home in the next week! As long as he continues to take his feeds well the doctor said today that he might be able to come home Tuesday or Wednesday The bad news is that he has to come home on oxygen I really wanted him to be able to come home without a bunch of crap but I guess that's not in the cards for us.

Anyone has experience with this? I would really like to hear from someone who's been through this
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Last edited by SarieP; July 31st, 2011 at 04:53 AM.
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  #2  
July 30th, 2011, 09:14 AM
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Michael didnt come home with oxygen but several babies on here did so i just wanted to say congrats! And i'm sure the other ladies will be along with advice
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  #3  
July 30th, 2011, 12:26 PM
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Ditto Sam, Jim didn't come on oxygen but I know we've got a lot of moms here whose kids did, so hopefully one of them will chime in. So exciting that Liam is coming home, though!!! That is great news!!! How big is he now?
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  #4  
July 31st, 2011, 04:55 AM
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He is now 6lb 3oz!! He seems like a giant to us! LOL
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  #5  
July 31st, 2011, 06:37 AM
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Travie came home on oxygen. He also had a feeding tube and was on a monitor, so unfortunately we did not escape without any of that . After he had been there for as long as he was (142 days) I think I would have happily taken him home on a ventilator if that is what it took.

People told me that I would get used to the oxygen and it wouldn't be a big deal. That was partly true, I did get USED to it, but I honestly hated it. It was just irritating to take him anywhere and try to walk around the house, dragging the tubing everywhere. BUT, in reality it wasn't a huge deal. I was just so happy to have him home. He ended up needing oxygen for almost a year after he came home. Hopefully your little guy will get to ditch it sooner than that. But if not, just remember that at least he is at home and not stuck in the hospital for that one thing. If you have any specific questions about oxygen at home, feel free to ask!
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  #6  
August 2nd, 2011, 06:19 AM
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Wow, I've been out of the loop for a while. Sorry!

Sarah Beth came home on oxygen. I did get used to it. It was ALWAYS a hassle if we wanted to go anywhere, but since it was winter and RSV season, we didn't go anywhere, so it wasn't a huge deal to me. We had a tiny house and our concentrator could sit in one room and with the extension set it would reach throughout the house. We also stopped using the big bulky apnea monitor during the day pretty quickly and would just hook her up at night. And I figured out how to tuck her and everything else into my Moby wrap when we'd go out, so I didn't have too much to actually carry, it was just in the Moby wrap.

How are things going?!!
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  #7  
August 2nd, 2011, 02:49 PM
Just_Marie's Avatar Platinum Supermommy
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the twins didn't come home on O2, but I'm so glad little Liam can come home soon! And he's so big!!
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  #8  
August 2nd, 2011, 06:36 PM
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Quote:
Originally Posted by army_wife1008 View Post
Travie came home on oxygen. He also had a feeding tube and was on a monitor, so unfortunately we did not escape without any of that . After he had been there for as long as he was (142 days) I think I would have happily taken him home on a ventilator if that is what it took.

People told me that I would get used to the oxygen and it wouldn't be a big deal. That was partly true, I did get USED to it, but I honestly hated it. It was just irritating to take him anywhere and try to walk around the house, dragging the tubing everywhere. BUT, in reality it wasn't a huge deal. I was just so happy to have him home. He ended up needing oxygen for almost a year after he came home. Hopefully your little guy will get to ditch it sooner than that. But if not, just remember that at least he is at home and not stuck in the hospital for that one thing. If you have any specific questions about oxygen at home, feel free to ask!
Wow a whole year?! OMG I don't think I could handle that I'm glad to hear that it is tolerable and I totally agree that it's better to have him home then just sitting in the hospital everyday.

Quote:
Originally Posted by SarahBethsMommy View Post
Wow, I've been out of the loop for a while. Sorry!

Sarah Beth came home on oxygen. I did get used to it. It was ALWAYS a hassle if we wanted to go anywhere, but since it was winter and RSV season, we didn't go anywhere, so it wasn't a huge deal to me. We had a tiny house and our concentrator could sit in one room and with the extension set it would reach throughout the house. We also stopped using the big bulky apnea monitor during the day pretty quickly and would just hook her up at night. And I figured out how to tuck her and everything else into my Moby wrap when we'd go out, so I didn't have too much to actually carry, it was just in the Moby wrap.

How are things going?!!
How long was Sarah Beth on oxygen? Our nurse did say something to us about only having him wear the pulse ox when he's feeding or at night....that would be a good idea.

So the new date is Saturday...which is his due date and exactly 100 days in the NICU. It would be sooo nice if he came home then. He is on day 4 of his 7 day watch so 3 more days to go. He brady'd tonight while eating because he choked and we were freaking out but the nurse said it wasn't a big deal. We made her finish feeding him! I don't feel like he needs the oxygen anymore (last week yes he did but not now)...his saturations are 99/100 ALL the time even when he's eating. Hopefully we can get a follow up appointment pretty quickly and get him off of it.
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  #9  
August 2nd, 2011, 06:46 PM
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She was home on oxygen for 3.5 months. She spent 2.5 months in the NICU, so total she was on oxygen for 6 months. I think they would've rather her stay on it longer, but we had a miscommunication and she was off it for a weekend and then I told her pulmonologist that she'd been off it and never even looked dusky so he said, "Well, I guess she is ready to go without it." LOL.
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  #10  
August 2nd, 2011, 09:35 PM
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My 25wkr came home on her due date too, at exactly 100days. I just thought that was pretty cool.

I had 2 babies come home on O2. The first was on O2 and a monitor for 3 months after she came home. She was also due in August. My 2nd came home with O2 and a monitor but we only used it when she was eating. We ditches the O2 after a month but kept the monitor for 4 months.

Some advice, get a half tank to take out places. No one told me about them so I carted around a huge tank for a month before I asked if there was something smaller. Also, ask for extra long tubing to use when home. I could walk into the other room without carting a tank around. Much easier. I also only used the monitor for eating and sleeping. If I was holding the baby, I could feel her and look to see if she was dusky.

I'm so excited for you! Can I let the Aug ddc know? They are having their babies now but I know everyone still wants updates.
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  #11  
August 12th, 2011, 06:52 AM
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Quote:
Originally Posted by Halfbaked View Post
My 25wkr came home on her due date too, at exactly 100days. I just thought that was pretty cool.

I had 2 babies come home on O2. The first was on O2 and a monitor for 3 months after she came home. She was also due in August. My 2nd came home with O2 and a monitor but we only used it when she was eating. We ditches the O2 after a month but kept the monitor for 4 months.

Some advice, get a half tank to take out places. No one told me about them so I carted around a huge tank for a month before I asked if there was something smaller. Also, ask for extra long tubing to use when home. I could walk into the other room without carting a tank around. Much easier. I also only used the monitor for eating and sleeping. If I was holding the baby, I could feel her and look to see if she was dusky.

I'm so excited for you! Can I let the Aug ddc know? They are having their babies now but I know everyone still wants updates.
We are doing alright with the oxygen. It's a pain in the butt but way better then going to the hospital everyday. He has been on oxygen the whole NICU stay and now he will be on it for at least two months at home. We have a pulse ox monitor as well but we stopped using that except for at night. He is totally fine during the day and we got sick of hearing it beep when he moved a toe! We asked about getting a half tank but no one has gotten back with us yet....no surprise there because it took a couple of days to get the oxygen concentrator here. We have 50 feet of tubing and it allows us to move through the whole house. We are so used to the cords from the hospital that it doesn't bother us at all!

Yes, you can let them know, thanks

Did any of the babies in this thread get put on a "weaning" plan to come off the oxygen or did they just come off?
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  #12  
August 12th, 2011, 09:24 AM
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We went to see the pulmonologist every other week. He would change the settings on the oxygen while we were there if they needed to be. He did the weaning for us.
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  #13  
August 13th, 2011, 05:50 PM
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I'm so glad he's home!!
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  #14  
August 14th, 2011, 09:54 AM
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I am so glad that he is home! what a little fighter, and you guys are so strong! Hugs to you guys!
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  #15  
August 17th, 2011, 02:37 PM
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hi there, I don't post too much on JM anymore, but have just been reading through the NICU forum and wanted to reply to this.
My daughter was born very early and was on the ventilator for 32 days and than on oxygen and came home on low flow oxygen. She came home in Feb and came off the oxygen completely in June of that year. So in total she was on oxygen for almost 7 months.
We had an oxygen machine that was plugged into the wall in her room instead of the huge canisters and than we had a long 50 foot hose. We had small canisters that could fit into a little bag or in her diaper bag for when we went out.

When it came time to weaning her off, we had a lady that came by every week to check her weight/feeidng and oxygen levels and between her and the perinatal clinic at the childrens hospital they were able to wean her off, starting with taking her off for a determined amount of time during the day and eventually she was only on it at night time. At first it seemed like having the tubes and everything was a PITA but you get used to it.

With that being said, the day that they took all of the bottles and the machine and everything I was sooo happy! I finally felt free from the NICU when she was finally off. She will 4 in november, and she's perfect and healthy. It may seem like a pain right now, but it's just a bump in the road. he will be off it in no time and life will start to be somewhat "normal"
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