I'm Terrified!!

[divadexie]

I can't begin to write how much I am dying to have Anna home.

But at the same time I am absolutely terrified!

I can't even pinpoint exactly what it is, maybe its just like, well for the whole of Anna's life so far we have had people there all the time, people telling us what to do, how it should be done and when.

How the hell am I going to know what to do when, when she is at home?!

Ok, so at the moment she is getting 49ml of milk every 3 hours. She also gets her nappy changed before a feed (of course if she is smelly it gets done more often).

But how, do I know how much more milk to feed?


How am I not going to go mad staring at her all the time because she hasnt got any monitors on her anymore?!


She was needing 0.02% oxygen over the last few days, it went up to 0.05 at points then was at 0.01 for ages then off for 12hrs, on for 12 now she has been off it for over 36hours. She still has the monitor attached and she still desats a little tiny bit when she is eating.

Its as if she gets over exited Lol and forgets to stop drinking to take a breath. Sometimes she forgets to swallow then has a wee choke. That sets the alarms off and I just keep thinking Oh no they will put her oxygen back on!
Once she is almost half done and been burped twice, she slows down to a good rythm and its ok.
Then she goes to sleep on me for about half an hour until she gets restless and goes to bed for a sleep.


Argh its just been that long, my son is 5 now and I never worried about all this stuff because well we just went home. Ok so I was kept in a few days because I had a CS, but the nurses didnt feed him, nope his cot was next to my bed all the time (unless I went for a shower or whatever) and when he woke for a feed I had to buzz the nurse to get his milk and pass him to me.

 

[JASMAK]

Maybe write out all your concerns and show her pediatrician??? I would be nervous too!

 

[25weeker]

Everything you are feeling is perfectly normal. I remember wishing I could take the monitors home with me for reassurance! 36 hours with no oxygen is excellent and hopefully in a few more days your little girl will stop desatting completely. My little girl was having the occasional desat which were self correcting but in her final few days attached to the monitors she didn't desat at all. I do have a movement monitor in her crib and it def helps me sleep at night.

I breastfeed so can't give loads of tips on how much to feed but when I give ebm if she finished the amount I gave her then I would increase the next one by an ounce. Don't worry though as they get older they get better at everything and she will soon be letting you know if she is still hungry! Before discharge as the neonatal nurses how much formula do they think you should start with and your hv will be able to give you advise at home.

Once you are both home you will get to know her and her needs just like a newborn baby which is what she will be. I am a first time mum so was completely clueless but my little girl is now 11 weeks corrected and thriving.

 

[divadexie]

I know I told my self I wasnt going to get a breathing monitor because I might rely on it but I think maybe just for a piece of mind, until she has been home for a while. That way I can leave her to sleep without staring at her! Lol

I was thinking about one that clips onto the nappy? Then I can just pop it on her if she is going for a sleep in the pram or whatever?

 

[25weeker]

I have the angelcare sound and movement monitor. It is a base that sits under the mattress and I move it into the pram if needed. If it doesn't detect any movement in 20 secs it goes off. Tested it many times as I lift her put and forget it is on! I plan to use it as long as possible as it's a great peace of mind and not disturbing her in any way.

Don't worry about being paranoid as Even now when I take her out walking I still stop and put my hand on her to feel she is breathing. I know it's mad as she is looking lovely and pink but it reassures me anyway!

 

[AP]

I remember that feeling - somehow though - you just know!

I had an angelcare but i didnt use it. At first i was scared having no monitors but i had to remind myself, they wouldnt have discharged her otherwise!

As for milk, just offer that lil bit more at some point and if she takes it - great!

 

[katy1310]

that's exactly how I felt too! But after the first 2 nights it was much better. When we first got her along to our room in the hospital we were staring at her the whole time and poking at her if she was too quiet!! She slept the first 2 nights, we didn't!!

We still worry a bit but nothing like I was expecting. Sophie is really behaving just like a normal newborn and we are pretty much treating her like one. Re the milk, I'm still trying to bf but when we give her bottles, she pushes it out when she doesn't want any more. I worried about her to start with after having a set amount given every 3 hours and she did lose a couple of ounces but soon put it back on again.

Sophie was desatting all the time at Anna's stage when feeding - remember the time she went blue during her first sleep study! But Dona and SB22 told me to give her another week or two and they were right. The hospital talked about sending her home on oxygen but the consultant said she wasn't a candidate for going home on oxygen and that something just needed to click in her brain with the feeding and she'd suddenly stop desatting - and he was right.

You'll be fine

 

[andik]

I think you have just summed up how most of us felt!

I was absolutely terrified of taking my son home as all of a sudden there wasn't anyone to ask and there were no monitors to watch. Our scbu staff were great and actually kept turning the monitors away when I was there as they realised I was relying on watching it too much so they kind of had to teach me to look at the baby not the monitor!

They also advised me against a movement monitor as they thought it would send me crazy (they were probably right) but of course don't take that advice as gospel. I believe they are worth it if it gives you peace of mind but it would have stressed me even more!

With regards feeding it does just work. I started breast feeding and went through four days of him constantly crying as he was hungry until I relented and went on to formula. From there it has been just as everyone says - if he takes the whole bottle then I up it an ounce.

You probably will stare at her all the time and keep checking she's breathing but it's all normal and you will relax more. Like 25weeker Nathan was my first and I didn't have a clue but somehow it all comes together. Plus you always have the support of everyone on here. x

 

[divadexie]

Thank you

I think I will wait, before buying a breathing monitor and just see how I am when she comes home. If I find that I am being paranoid and watching her all the time then I will get one Lol

But you are right, they wont send her home if they are concerned!

Today she didnt want to wake up for a bottle at 5am, she had half her bottle at 8 and a whole one when I was there at 11. I havent rang up yet to see how she has been the other ones so far.
But I plan to be there for most of monday so we shall see if its just for me that she likes to take the whole bottle LOL

 

[nineena]

Hiya ladies, i'm new to this part of the forum so hope you don't mind me posting but this is the problem we're having with Ella at the min, she has a few de-sats after and during feeds coz she guzzles too fast and forgets to breathe and you can see her holding her breath and slowly turning blue. A few days ago we had to sit her up and open her mouth to get her to breath but now she's starting to self correct and in the last 36hrs has only had 2 de-sats but im absolutely terrified of them even turning the monitor off at the hospital nevermind the fear of her not breathing once she comes home but it's reassuring to hear that lots of other babies have had this problem and it does seem to be a very common occurance with preemie babies that settles down quickly and stays resolved.

Sending oodles of hugs to you all and hope your bubs all continue to do remarkably well xx