Please any tips for oxygen/apnea monitor

[holiday]

We just brought home baby yesterday and it's been difficult. She is on apnea monitor and oxygen. We have tanks and we have oxygen from a machine that plugs in the wall.

If her tank is down, I have to plug her into the wall... then she isn't mobile lol. Just to change her diaper or go do something I have to put her in a stroller to stroll her around the house, change her oxygen to a tank etc.

I'm overwhelmed, she also has to be on preemie formula so I breastfeed first then give her bottle. I HATE making bottles... pita. Washing them and making them... which brings me back to having issues getting them done, while she is hooked up to everything.

add in the fact I'm trying to keep 2 dogs and cat away from her *sigh* and I'm on 3 hours of sleep

[bandgeek]

See if they can get you a longer hose so she can be on the concentrator, but it will be able to stretch a lot further. I have a small place, so a 25 ft is enough to get her from one end to the other, with this concentrator smack dab in the middle of the house. When we lived in a bigger house a 50 ft one was plenty.

I would just hold DD, the oxygen in one hand and drag the hose around. Sometimes it gets hung up on stuff, but you learn quickly what things to lift it over.

Can you ask for a pulse-ox instead of an apnea monitor? I think it's important to know what her oxygen sats are as well as her heart rate. And our pulse-ox is a lot smaller and more portable than the apnea monitor we used to have. And less annoying too.

What I did at first while I was getting the hang of everything was I just set up a main living space in the front room. Bed, nightstand, crib, ect. So I could do almost everything from there. I didn't have to drag her around the house for any reason. As I got more comfortable, I started taking her around the house more. I'd put her in the car seat and set her on the bathroom floor while I took a bath. I'd put her in the bouncer while I made dinner. I eventually moved my bed back upstairs and we all slept together (her crib stayed downstairs for when the nurse had her).

There's a learning curve to all of it. You'll get good at it and learn what works best for you.

Any way you can make your main living space a room that can be closed off? So you can keep the animals away at least some of the time so your can get some rest.

[holiday]

thank u

can i ask how often apnea monitor went off. they told us 5 beeps perform cpr.

it has had up to 3 beeps. but i dont know if its apnea or just shallow breathing...the heart rate hasnt dropped and she hasnt changed color?

[bandgeek]

Originally Posted by holiday

thank u

can i ask how often apnea monitor went off. they told us 5 beeps perform cpr.

it has had up to 3 beeps. but i dont know if its apnea or just shallow breathing...the heart rate hasnt dropped and she hasnt changed color?

They never told us anything specific. But they really didn't prepare us at all for taking her home. I truly believe they didn't expect her to live long anyway.

I would watch the baby, not the monitor. If it beeps at ALL, even just once, see what your baby is doing. Does she look good, breathing fine? Do you know how to check her heart rate with a stethoscope? It's important to know what her actual heart rate is vs what the monitor says.

I don't know how I feel about apnea monitors still. Our pedi told us that by the time it goes off (for heart decels) it's usually too late to do anything. If there's a false alarm, obviously that's different. He said that if a baby stops breathing they are without oxygen long enough to drop their heartrate, the damage has been done. Sometimes it's minimal, but sometimes it's devastating. My DD didn't even have heart decels and managed to have a devastating brain injury. So PERSONALLY, I wouldn't resuscitate a blue baby, but that's based on my experience with DD. If they JUST have a low heart rate and it's not from oxygen deprivation, that is different. I think you should go with your gut. Look at your baby and make a decision based on what you feel is right.

[azgirl]

Yay! Your baby is home! Most babies thrive when they come home. Our 26-weeker was on O2 for a few months. A lot of what we did was based on his specific condition:
1. He never had an apnea in the hospital, but all babies on O2 go home on an apnea monitor. Did your baby have apnea in the hospital? Are you going to be seeing a pediatric pulmonologist? Our pulm was so awesome! Anyway, we pretty much went AMA and did not use the apnea monitor we told our pedi and our pulmonologist. We spent 4.5 months in the NICU, our LO had ridiculous reflux and projectile vomit after every bottle etc. we did not need the stress and hassle of that useless apnea monitor. If your baby actually had a lot or severe episodes of apnea, that is another story. Not all babies that need O2 have apnea. We did everything with advice and help from our pulmonologist. Your babies doctor knows the whole story. And you know your baby the best!
2. The apnea monitor did not have numbers. I hated that thing! We couldn't tell his blood O2, which is what we really needed. So, our pulmonologist prescribed a pulse ox. We used it religiously for a very short time. Once we figured out that his O2 settings were adequate we only used the pulse ox when we were worried. Sometimes twice a day. If I was worried about apnea, I would have used the pulse ox 24/7. You set the parameters for the pulse ox, so you it will go off at whatever point you want it to.

Living with O2...we got the huge tank. We got the tiny travel tanks. BUT we requested and pushed for two medium tanks on wheels. They were about 3 feet tall if I remember correctly, maybe 4. Anyway we could carry our babe and walk around with it. Our LO needed just the slightest bit of O2 for months and months. We would pulse ox him and it would take 20 to 30 minutes off the O2 before his stats started falling (when his little lungs and muscles tired out from breathing so hard). Anyway, we started keeping a tank in our bedroom where he slept and a tank in the family room. We would just unhook one, take him where ever and then hook him back in. We had a cosleeper in our bedroom an a pack n play in our family room. We had all his supplies in both places (diaper changing, nose sucker, tape etc.)

Oh, taping the cannula was so stressful and the tape the hospital used and sent us home with sucked. We had the best luck with gentle paper tape from the drugstore.

Feeding a preemie is so hard! Washing bottles, preparing formula, pumping and/or trying to breastfeed, yikes! We bought a lot of bottles and I figured out how to wash them in the dish-washer. We used Dr. Brown's and there are so many parts!! I made up a whole days worth of formula at once. That helped a lot.

Congratulations on bringing home your little one! It seems so overwhelming at first and then it gets so much easier! Well, I had PPD and needed meds, but it did get so much easier

[justmama]

I don't know about oxygen but when we came home on on apnea monitor with a dog and another child to deal with, a sling was a godsend. I shortened the strap on the monitor down so it was like strapped to my body and put her in the sling and we were okay to do things about the house. Setting up shop in one section of the house like the living room was also essential. I stocked a basket of wipes, diapers, outfits, and snacks in the living room and put kid-accessible drinks and snacks in the fridge for the 4 year old and we camped out in the living room. The bassinet was in the living room if I needed to put her down, as was the rocking chair and the 4 year old brought in some toys and we basically lived in the living room for 3 months. It wasn't as depressing as it sounds, I promise!

[justmama]

Originally Posted by holiday

thank u

can i ask how often apnea monitor went off. they told us 5 beeps perform cpr.

it has had up to 3 beeps. but i dont know if its apnea or just shallow breathing...the heart rate hasnt dropped and she hasnt changed color?

on our monitor, we would stimulate her(foot tapping, chest rubbing, etc) to breathe on her own after 5 beeps and be ready to perform cpr at 10 beeps or for color changes and heart rate dropping anytime after 5 beeps. that's what her respiratory therapist suggested. again, like suggested, watch the baby not the monitor. that's hard to do when a machine is insistently telling you that your child is not breathing and in danger but it's the best method.