looking for some advice...

[soton123]

Heya, i posted a few months ago on this forum, i was expecting twins and had a problem with one....

Anyway,I had my twins at 26 plus 6 weeks very suddenly and unexpectedly!! One of my babies passed away after 24 hours,... so as you can probably imagine its been very difficult for me and my family, like a rollercoaster ride really trying to grieve for one whilst saying strong for the other.

Zak is now 13 weeks old, and weighs 6 pound 12 (, he's on 0.03 of 02, and is being tube fed and also bottle fed every four hours (eg - he'll be tube fed, then bottle fed, then tube fed) I have read many stories on here about other prem babies that finally went home so it gives me hope that Zak will come home soon!

Id be very greatful if anyone could tell me how much longer it took for their baby to come home at/around this stage? i know all babies are different, and he'll be home in his own time but i would like to have an estimated date where i can think he'll be home soon! Thankyou

 

[Marleysgirl]

I can't answer, but I didn't want you to think your thread had gone unread!

Hugs to Zak, I see he's now full-term, which is one of the rough guidelines to going home. And he's a good weight too!

Could you perhaps ask your NICU what their conditions for discharge are? That would give you something to aim for.

 

[Bec L]

Poppy was in for 2 weeks but she was only 6 weeks prem. We wre told to expect her to be in until her due date but the main thing was for her to establish her feeding. Once she could demand feed, her tube was removed and I breastfed her on demand instead.

Hope it happens for you soon. Congrats on your LOs, I'm very sorry for your loss xx

 

[soton123]

ok thanks for the help, i will ask when i go up tomorrow about their guidelines to coming home.i guess i just have to be patient! im just starting to get abit desperate for him to come home now! lol xxx

 

[MandaAnda]

For his feeding, they'll want him to be tolerating his four hourly feeds and, ideally, waking and demanding his feeds. They'll really not want to send him home NGT fed. Maybe you can see if they think he's ready to start working up to full feeds during the day and demanding them (can you be there throughout the day?), then once he's done that you'll be a lot closer.

Also, I see he's still on O2. That may come down as he starts feeding better. If it doesn't, ask the nurses if they discharge babies home on home O2. If units do discharge babies home on home O2, it's then monitored by the community nurses, and they're left at 0.1L (I know it's more than he needs, but they tend not to use the low flow in the community) with the community nurse weaning the O2.

Hope that helps a bit.

 

[TwoBumps]

Hi, my twins were born at 31 weeks plus 3 6 weeks ago. They are still in SCBU but Ben is ready to come home and we are just waiting for Joshua to wean off his O2 and then they will both come home.

We have been told that the twins needed to be feeding on demand by bottle, putting on weight and ideally to be off their O2 before they could come home. My hospital will send babies home on O2 but prefer not too so probably best to speak to your hospital.

In terms of timescale, as we have found out with the twins, every baby goes at their own pace even twins!! My boys progressed from alternate NGT/bottle feeds to solely being on bottle feeds within about a week and this coincided with when they would have been about 35 weeks gestation which appears to be the magic age for feeding as this is when they would develop the suck/swallow/breathe reflex.

O2 weaning as I have discovered is very difficult to predict....Ben weaned gradually over about 4 weeks making massive progress over the final week when he went from doing about 4 hours a day in air to 18!!! Joshua is refusing to give his O2 up even though he is on so little that they can't even measure it!! So we are having to push him up by a couple of minutes a day and wait for him to "turn the corner" which the nurses say they do when they are ready and that it can be very quick...I really hope so!!

Good luck, and I hope you get your little one home soon xx

 

[Marleysgirl]

Quick question, seeing as the last two posters have mentioned demand feeding - my premie is now on 4-hourly feeds, but they're still by NGT. For the last week, the nurses have tried cup-feeding if he's awake, and I'm trying him at the breast when I'm there, again if he's awake.

But my worry/problem is, he's not "demanding" food. He's now 37 weeks (but small for age due to IUGR), and still sleeping almost all the time. I've never seen him wake and cry because he's hungry. And the nurses won't wake him to try to cup-feed, if he's asleep then they feed him by tube.

So how do we get him to demand food, if this is one of the criteria for release? Sounds horrible, but will the nurses actually skip a feed to see if he wakes and is hungry?

(Apologies for thread-hijacking!)

 

[premmiemum123]

Hello, am so sorry to hear about your loss of one of your twins...was the twin a boy as well?

As everyone has mentioned above it is hard to give you a timescales as to when your little one will come home as all babies are so different. Hospitals do have set criteria for discharge which they evaluate against the baby. It sounds like Zak is doing well and he will eventually turn a corner, Emily was always like that, you thought her little episodes (de-sating down to zero) would last forever yet one day she just stopped frightening everybody and had sats of 100.
Our babies are so strong and such fighters. When Zak is ready to go home you will know and hosptial will definitely know.
I know it is really frustrating as you have done 13 weeks already, the final stretch is the hardest as it is not about survival, it is about them coming home and you being a family finally. Your day will come. I would see if they have an idea of a discharge date, even if they say it will be his due date, at least then you will have some idea, I am sure you are keen to get everything ready for him.

Is it your first baby?

x

 

[MandaAnda]

Quick question, seeing as the last two posters have mentioned demand feeding - my premie is now on 4-hourly feeds, but they're still by NGT. For the last week, the nurses have tried cup-feeding if he's awake, and I'm trying him at the breast when I'm there, again if he's awake.

But my worry/problem is, he's not "demanding" food. He's now 37 weeks (but small for age due to IUGR), and still sleeping almost all the time. I've never seen him wake and cry because he's hungry. And the nurses won't wake him to try to cup-feed, if he's asleep then they feed him by tube.

So how do we get him to demand food, if this is one of the criteria for release? Sounds horrible, but will the nurses actually skip a feed to see if he wakes and is hungry?

(Apologies for thread-hijacking!)

Is he still gaining weight well? If so, and if it were me, I'd be tempted to speak to the consultant on the ward round and see if we could try to get him to demand. For instance, the nurses can tube feed him overnight, but you get there first thing in the morning and stay all day, if possible. That way, he can demand BF (I'm assuming you're BF'ing since the nurses were cup feeding). I still never would let a baby with weight concerns go more than 5 hours without waking them.

So, say 5 hours comes and he's not woken. You wake him, change his nappy, put him on the breast. If he takes a few sucks or a full feed, maybe only half top him up down his NGT (eventually no top-ups) because, if you're there all day, you'll be there to feed him if he wakes up in two or three hours for his next feed. If, after a couple of days of this, he's still not demanding a few feeds, maybe he's not ready yet, and you can try again the next week. But, really, at 37 weeks, I would think he needs to be challenged to feed. He's never going to get hungry (as horrible as that sounds) and know he wants a feed if he's just given a tube feed while he's sleeping. It's very difficult to say without knowing the actual baby, but from a nursing point of view, this is what I'd be thinking and trying to get happening.

 

[soton123]

Thanks for the help everyone! i really appreciate it The nurses did try to demand feed recently but they said it's just not for him and they weren't going to try it again? or atleast until he's stopped tube feeding aswell. When i went up to see him last night he had mainly bottles, and just one tube so i know he's getting closer to being on just bottles. He has 95mls each feed, (im not sure if thats seen as alot or not? lol.) He's putting on weight fast, he was weighed yesterday and weighs 7lb1 now, he makes my arms ache when i hold him now!

He's now on mainly 0.02, sometimes 0.01, although when hes feeding it goes upto 0.03, he's also on gaviscon which has helped him loads as he had bad reflux, which is alot better now.

Zak is my first baby, I had twin boys, non identical. Zak weighed 2lb2 and Max weighed 1lb10 which apparently was a good weight considering how many weeks i was.

I asked the nurse yesterday how much longer she thought it would be until he can come home as his due date was on sunday, and she just said not long now, im really hoping he'll be out by halloween, i'd love to dress him up as a pumpkin!!

Thanks again for your help its great to get help and advice from people that have/are in the same situation as me and know how you're feeling xxx

 

[AP]

95mls is brilliant! Alex never took more than 80 in the hospital. as for the o2 it took alex 1-2 weeks for it to get to zero - i really believe your lil man will be out by halloween, easy!

 

[soton123]

Thankyou, thats made my day!! I sure hope so i cant wait for him to see the real world. Me and my OH have made a bet on it now. I think he will be out by halloween, and he doesn't lol xx

 

[hopedance]

95mls is excellent, sam was on 50mls every 3 hours when he was discharged.

about demand feeding, sam was a sleepy undemanding baby, i never thought he'd start screaming for his milk. but one day i was washing my hands before going in and i could hear a baby screaming like mad. and it was Sam! as i went in all the other mums were like, OMG that's sam - he never makes a sound, whats going on!! he was screaming for his feed, he also yanked his feeding tube out, so the nurses sad lets see how many feeds he will take by bottle before we have to replace it. but he didnt need it back and got discharged 10 days later. i have swapped him from bottle to breast now we are home, he's fab!

so hopefully your little one will suddenly wake up and know what he wants!

just as a side note, we did split bottle breast and tube feedings with sam - at first i said no bottles, but we tried one one day and it was like it taught him how to suck, and connecting sucking with lots of milk as bottles are less hard work than breastfeeds. so suddenly he got loads better at breastfeeding too!

 

[soton123]

Thank you hopedance!! thats exactly what zak's like he just cant be bothered to feed when he's woken up so maybe he might start demanding soon. Hes getting much better when he takes the bottle now, hes been tried on bottles all day and has managed to complete nearly all of them. And hes been on air for 3 days now so he should be staying off oxygen now! im so proud of him! xx

 

[Foogirl]

Congratulations! It sounds like Zak is making great progress.

Abby was 3lbs 07 born at 29 weeks. She spent 6 and a half weeks in NNICU and was released at a little over 6lbs.

Once she started taking to the bottles, there was no stopping her. I think there was only about 2 weeks between her taking her first full bottle feed and her coming home. She was on 95 mls of EBM every 3 hours when she was released. She didn't demand too many feeds though so I'm not sure that's a requirement.

I'm with you. Zak will be home by halloween

Sorry to hear about your loss. The same thing happened to a good friend of mine and she found it hard being sad and happy at the same time. Happily her wee boy is coming along in leaps and bounds (He's 2 now). They have planted a memory tree in their back garden and Ewan loves caring for it.

 

[soton123]

Thankyou! it does seem that girls do better than boys when they are born so young doesn't it. I have some great news, if all stays well Zak will be coming home monday!!!! yay! he cant come out at the mo as hes only been of oxygen a couple of days, but omg i cant believe hes actually coming home, he'll be 15 weeks when he comes home, its been such a long journey!

Thats a lovely idea what your friend done in memory of her baby, i think i will do that aswell. Im glad her other lil man's doing well though. I think this is one of the worst situations anyone could be in, you're just a mixture of emotions. I think the hardest bit has to be that when people ask me many children i have, i have to say one instead of two.

 

[Foogirl]

That's excellent news. How much will your husband have to pay out on this one then?

It will be great to have him home at last.

 

[soton123]

i cant wait!!!! im so excited its been 16 weeks tomorrow, we've just roomed in at the hospital for two nights and it was great, he slept through the night, we had to wake him up for his feeds.

We only bet a tenner (or KFC) lol, i might be greedy and make him give me both haha x

 

[hopedance]

is he home now? congrats!!

 

[soton123]

He's home now! he's been nicked by my family and i havent seen him for quite a few hours now haha, he's settled in straight away, im soo proud of him!