A thread for Beatrice: Because a life filled with love is a life worth living.

[cupofteaplease]

We are back from the hospital, Beatrice has been fed and dh has gone to work. So I have time to sit down and start the first post about the journey ahead, which I hope will be a long and happy one.

Beatrice was born at 36 weeks weighing 3lb 14oz. After an initial diagnosis of Edward's Syndrome was proved to be incorrect, an MRI and genetics tests were carried out and today we have some initial answers.

Beatrice's brain is very small and underdeveloped. The consultant described it as 'simple', because it does not have all of the detail expected in a typical brain. She explained that we should expect Beatrice to be severly disabled. She is also very small and delicate, and at risk of catching infections. They anticipate that she may suffer from fits. They have told us to watch out for her breathing during feeding, as her muscles are weak. They also commented on her shallow breathing pattern. They believe the problem was caused by a gene that both dh and I must carry, but they haven't got the answers yet and admit that they may never know. They have ultimately described her condition as life-limiting.

However, we have left the consultation feeling at peace. We don't know what the future holds, but realistically, neither do the doctors. We have great faith in Beatrice, she amazes us every day, and she is surrounded by so much love from us and her wider family.

I would like to use this thread as a space to jot down how she is doing, and how we as a family are coping with life. If anyone wants to check in and follow her progress, please do. We couldn't have got through the past 2 weeks without MN.

Cup I can totally understand the germ thing. When my waters broke and we had to go in to hospital to have it confirmed they kept whittering on about infection and how they wanted to induced me within 24 hours (but we argued because we wanted home birth) and there was a child behind the curtain who threw up EVERYWHERE. Then his Mum made some comment about knowing already he was ill, DH and I were ranting to each other about the hospital telling me about infection and there is a toddler barfing behind the curtain!

Anyway, I digress. The Nurses will not think bad of you, DH is a Nurse and he agrees about the playroom/germ thing and really I think as long as patients explain their reasons (can we wait elsewhere due to Bea being poorly) in a calm fashion they will not think you are being silly. You must ask, do not let it fester as it will only stress you out.

Also I don't know about how these things work but could they not give you an oxygen cylinder at home? Def ask about trying to get it changed at the GP's though, I would have thought the Nurse there could do that kind of thing.

hi, reading quietly and wishing you all the best.

I would ask for a pump for the ng feeds, it will cope with the gaviscon and will send her milk into her at a predictable even rate which may help with the sickness as you can slow it down abit if needed.

From a parent that has spent along time passing ng tubes on their child I agree with asking for the oxygen and learning how to do it. It is not easy emotionaly to being with but you only pass tubes on your child so you will know every bit of their anatomy. EG when passing ds tube I know one nostril goes straight and the other has a kink, how far the tube goes in before throat so wait a minute, blow on his face to make him swallow and away it goes etc. All this will mean you will probably do a better job than the nurses, I can not bear to watch them try as I know they are professionals but they just shove the tube in. You will be able to do it in under a few minutes even on your own if you swaddle her, this will make you life so much easier.

However if the risks are still too great for you to be happy to do this every time you go to hospital INSIST on a cubicle/ isolation room whatever they call them where you are. Do not ever go into the playroom, we still don't and still have a room. You are not causing a problem, she needs it and you are well within your rights to insist to keep her safe.

X

Thank you so, so much for your responses. The practical advice and emotional support I have received these last 9 weeks on this board has been immense. Thank you

Right, where were we...

After the Gaviscon feed last night, I could see dd was uncomfortable, so I didn't add it to her 10pm feed. During the feed, up came the last feed, full of Gaviscon chunks. Lovely.

This morning I rang the nurse and was brutally honest about everything, the feeding, the waiting in the hospital playroom, the not having a point of contact or care plan, the fear. Poor nurse, she listened really well and rang the consultant (Dr Death) before calling me back.

We have a plan.

We are keeping Bea on her Infatrini, but trying her on 40ml instead of 50ml, to see if that stays down. No Gaviscon (Consultant said if it is reflux, she should have been prescribed a liquid medicine, as I thought). She has referred Bea for a barium meal, to rule out reflux. If it is not reflux (which both the nurse and consultant don't think it is), then she will be given medicine to aid digestion. The nurse also said Dr Death is now thinking towards the future as Bea is developing well ( ), and saying that a barium meal will be necessary before she can be fitted with a gastrostomy. I said I was surprised, as I thought Bea couldn't have a general anaesthetic due to her breathing pattern, and the nurse said that her breathing may stabilise enough as she grows. Come on Bea, you can do it!!

Just spoken to the nurse, as she was sick after and during her last 2 feeds too, and she is emailing the consultant to keep her informed, and the nurse will ring me tomorrow morning to see how she got on overnight.

I'm not sure what we will do in the short term before the barium meal, as that won't be for 10 days or so. Poor little Bea keep being sick- you can tell she is so uncomfortable when feeding.

Poor little love - but fingers crossed. I know it would be a massive pita, but can you halve her feeds and give them twice as often? Just so she's only got a little bit each time. Might help? Also, if she does have reflux, do you have her slightly raised at the head end? You can raise her cot by putting the head end on two bricks, as she's too little for a pillow - it might help, might not.

Did you ask about learning how to do the ng tube yourselves? What did they say about that?

Glad Dr. Death has revised her attitude - hope she's really learnt something from this!

C'mon Bea - you can cope with this, get through this bit - you've done so well so far, you can do it!

Yes Thumbwitch, we always feed her in a raised position, and her moses basket has the head end raised.

Sorry, I missed that bit off of my last post- the nurse has said that next time her tube needs changing, she will come to the hospital and do it personally. Then she will know that Beatrice can cope better with the tube change and she can do it at home again. She also agreed that now Beatrice is more stable, she would feel happy to teach dh and I to pass the tube too.

tooloudhere, Beatrice has one nostril that is so kinked that they can't get the tube down it at all! So the side with her tube is more stretched than the other!!

Your first update was heartbreaking but your second one was much better and well done for standing up for Beatrice.

You need to tell anyone that is telling you to do something that isn't in Beatrice's best interests that no, you can't sit in a communal area and actually Johnny can't stroke the baby's head as she is unwell. People might not realise unless you tell them.

Stop caring what anyone thinks. These people will be a distant memory in the future. Beatrice will never be a distant memory and until she can fight for herself she needs you to do it.

Were you okay with DH going away and did you and your mum manage okay?

cup We are just through the reflux jungle and i have a great moses basket wedge which was fab for dd.I can send it to you if you like,it really helped.
Dd ended up on ranatadine and dom peridone and then omeprazole which she has just stopped and was very effective.

I just turned away a close friend who came a calling with her snotty nosed toddler,felt a bit bad but hey ho she'll get over it and my baby isnt half as vulnerable as little Bea.

Pm me if you want the wedge xx

Sorry the wedge is much more effective than the propping btw.

Don't worry FAB, I think I now realise that I need to stand up for myself and don't worry about what other people think, especially strangers.

Yes I was fine with dh going away, it was booked before Beatrice was born. He went to watch the Red Hot Chilli Peppers with his best friend and they stayed in a nice hotel. I was only a bit as it was our wedding anniversary weekend, and he'd worked lates on the actual day, so we didn't get to celebrate in anyway. Never mind.

My mum was good company for me, and she had a go at tube feeding. She has also offered to look after Bea one day a week when I go back to work next September, if I want her to.

Ooh ledkr that'd be great, thanks. I'm just going on the school run, but will pm you my address later if you don't mind.

You are strong, turning away a friend. I need to get like that!!

cup On a lighter note.I remember cooking a meal for me and dh's anniversary,candles,kids in bed the lot. He was really late home and i ended up sat there like a lemon,hank marvin
He eventually got in and we sat don to eat the crispy offerings. Then dd woke up crying and puking so i saw to her. Sat down again and then ds3 came through the back door and grunted "'ave i got any dinner?"
I gave up and put me pjs on

Sounds like amazing Bea is teaching Dr Death how strong babies can be.

Nothing wrong with putting your child first, hope that you and the. Medical staff find the right way forward soon and you have time to enjoy being a family in-between the feeds

Hi, so sorry Bea is still being sick. Bella is on domperidone and omeprazole, they have helped lots (she got very constipated with gaviscon). A barium meal seems like a very proactive way to proceed (way to go Bea). Do you have a community nurse? Ours will come out to change tubes etc. But if they won't it is written in Bella's notes that we don't wait in waiting areas/play rooms if there is a cubicle available, I have had to stamp my feet occasionally. Our GP is a bit rubbish with Bella, can you see a paed? Or a gastroenterologist? That may need a paeds referral though.

I used to dilute Bellas milk if she was un-comfortable, but you need to talk it through with the community nurse or dietician, Bella also tolerated SMA high energy much better than the infatrini which may be worth asking about. It may be worth trying a lactose dairy free formula too, just to rule out that as an issue.

Sorry lots of ramblings, I hope Bea is ok, I do a very good line in stroppy demanding parent now but needs must.

well done cup!
well done bea! is she still putting on weight, cup?

Great job today. What a fab advocate for your Bea you are!

God you are a brilliant mum :)

Hi,
I haven't commented before but i do keep up with Bea's amazing progress. And her amazing mum as well.

Have you tried hypoallergenic formula? DD is cow milk and soya intolerant and although she became fully breastfed we did top up to start with after our NICU stay and she would scream in pain, vomit, shuffle etc, and once I fed her a lot less but more often and also switched formula she settled, even at 16 months if I eat dairy she gets a poorly tummy again and possets.

Also, I used to think I was a fairly confident person, nope, I now have shiny balls of steel and I am like a tiger mum to get the services and help my DD Access the things she needs. I learnt I knew my child better than the doctors after they left a seizure for over an hour whereas the correct drugs could have stopped it within 5 minutes, so I take the approach I am in partnership with dd's doctors, they don't get to lecture me about my daughter. I still don't let people who are openly unwell to be around my toddler and I am cautious about waiting in the GP surgery etc, I have asked more than one child when DD was much younger not to touch her. It's hard as it feels so impolite but necessary.

You are all amazing

Hey, don't be nice to me, or I might cry!

A couple more photos added- for a baby who keeps being sick, she doesn't look very poorly, hey?! I reckon there might be a smile there one day...

BobLoblaw Yes we have a community nurse, but a) she's part time and b) she refused to pass the tube at home because the one time she did it Bea decided to stop breathing! But, she's been fine since, so she will begin to pass the tube here again and teach me, too. Our paed is Dr Death, but now she's finally on the case, I feel a bit mean giving her that name. Dr Reluctant, maybe?! Dairy-free milk is a good idea...

madwoman She only put on 4oz in 10 days. I will weigh her again this Friday during her cast change.

I LOVE the new pictures I know 4oz isn't much but at least she's gained. That's really good considering the struggle you're having.

How about Dr Dire? (as in dire predictions...)

cup I have never commented before, but been following the progress of Bea. I have just looked at your recent photos. Bea is perhaps the cutest little thing I have ever seen. Those eyes are amazing. Seriously.

You should be so proud of yourself.

she is just the cutest. v funny - i wonder what's going on in that head? she looks like she's going to have a lot to say for herself.

the smiling thing is interesting. i was obsessed completely as i felt it was the first clue towards communication. dd2 was 6 mos before her first smile and we had all just about given up hope. can't stop her now. i don't think bea will be able to wait that long, judging by the look on her face!! such a sweetie!

Wow, 6 months madwoman - you were very patient! I think that's it about the smile, if she can smile, she is communicating that she is happy. My mum said at the weekend that Bea doesn't have any emotions and I felt a bit .

Thanks for the support, pleasethanks!

Yes NorthernLurker any gain is a gain, I guess.

I don't think I have ever seen such an adorable little girl! Sorry to be so slushy and sentimental but Bea is just such a darling. Still praying for her healthy development.

Difficult isn't it when the experts are telling you what to do and you are gradually learning what is best for Bea and being assertive about that. They will respect you for being assertive and you'll become confident and knowledgable about doing it.

Wishing you so much strength. Love hearing about Bea's progress.

dd2 also had that 'botox' look as she couldn't really move any of her facial muscles, so it looked as though there were no emotions etc (except when she was screaming the place down with regular monotony lol) so the smile was a really big thing for us. she has great fun now trying to move her eyebrows though . i found it really difficult to see other newborns pulling faces - she was just completley deadpan. v difficult. it still makes me well up now now when i see an nt baby just wiggling and squirming and sticking their tongue out and yawning and rubbing their face and whatnot.

bea has lots of emotions going on in there. she's just got to wait for her body to work out how to let them out. she's working on it

she is gorgeous though. those eyes are utterly fabulous.

Ah Cup love the news photos. That's definitely near a smile She is so cute. You are being such an amazing advocate for her.

A friend on Facebook just posted a link to this tube feeding site and I though of you and Bea xx