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.

What a total star! Am loving the photos.

She is a lucky girl to have such a wonderful Mummy. Xx

Bea is lovely. The new photos are beautiful. I'm so glad she's doing so well.

Lovely photo's Cup and i hope the sickies have stopped.

Am loving the new photos of Bea, she really does look so yummy :)

Glad she is back home.

Such beautiful photographs. She is chubbing up so well! (if "chubbing" is in fact a real word )

Another proud member of Team Bea

Wow, cup! You can really see how she's filled out. And virtual ner-ner to Dr Death!

I'm so glad Bea is liking the mobile :) Bella loves hers too. The new photographs are lovely, all your girls are very beautiful.

Hi cup of tea. Your thread title says everything about your amazing attitude to what life has thrown at you all.Lucky Beatrice to have been born into such a loving and positive family.

Lots of love xxx

Those pictures are beautifull btw,they are all so gorgeous.

Just catching up with your updates. Delighted Dr Death was kept quiet! The power of prayer! Beatrice is doing so well and so are you cupoftea - your response to this situation is inspirational. No baby could ask for a better mother

Argh! 2 steps forward and 3 steps back Oh, and watch out for the rant that is about to follow...

On Friday, we went to the hospital for Bea's cast change and I was delighted! Her foot was at a 90 degree angle to her leg after only one week. We weighed her without her cast and she was 7lb 2oz. Got her home and after her 1pm feed she was so sick, that she vomitted the ng tube out of her nose It was only hanging in by a couple of centimetres. So I rang the nurse, she told me to pull out the remaining tube as I couldn't get it back down, and take her to the hospital to have another tube put in.

Now, I'm sure I've moaned mentioned before that we don't live near the hospital, and I had already been there in the morning. So, I had to go and collect dds from school first, take dd1 to a pre-organised play date, then take dd2 with me to the hospital where they made us wait in the playroom until they had 2 nursers available to put the tube down. Now, bearing in mind the consultant has said, 'Stay away from germs, stay out of hospital as much as possible' (Umm, I'm trying ), I couldn't understand why we were put in the playroom with toddlers coughing their germs everywhere and coming over to take a look. The mums saying, 'Aww, look at the pretty ickle babby, aww are you stroking her head?' And the tiger inside me is screaming, 'Get your germs away from my baby, an infection could kill her' Sorry, I know that is uncharitable and I am being PFB, but I'm working so hard to protect Beatrice, and it all gets undone at the bloody hospital.

We had to wait in the germ infested pit playroom for over an hour before the nurses were free. I asked what I should do, bearing in mind Beatrice's sickness still hadn't stopped, and she said to wait until Monday then bring her in again. But we've been told to keep her away from the hospital! I then had to battle through the Friday night rush hour through the town centre with a crying Bea who by now hadn't eaten for over 5 hours, and a hungry dd2, who had been a little gem. Then had to pick dd1 up from playdate on the way home. So by the time I got to bed on Friday, I felt like I had been hit by a bus. Dh went away for the weekend with a friend, so my mum came to stay and I began to teach her how to tube feed. Beatrice continued to be sick.

We waited it out until this eveing, then dh rang the nurse's office, but noone got back to him so he tried the GP who has prescribed Gaviscon to see if that helps the sickness. But it made the feed so thick I had to push the entire feed through the ng tube, rather than a gravity feed, and Beatrice was still uncomfortable (but hasn't been sick yet, fingers crossed...)

So, the sickness hasn't stopped. I don't know who to ask for help. I don't know what to do for the best. I'm sick of conflicting advice.

Sorry, I told you I was moaning tonight.

Oh love, if anyone has the right to moan you do - but that's not moaning!!

I am so pissed off for you that things are so hard and that people who could make it easier/better aren't.

I am, however, going to send you some special ChippingIn Don't Mess With Me strength! You need to speak up for yourself OK - when they tell you to wait in a public area - you tell them you cannot, Bea is too compromised for the germs in there. Stay firm until they find you and empty room/office/broom closet. If you end up somewhere with other children - you have to tell parents how ill she is and that her immune system is compromised so she can't be coo'd over 'terribly sorry and all that'...

You need to get the hospital to help you find somewhere closer that can help you with her feeding tube or brave up to learning to do it yourself. I learnt, you can too admittedly my 'patient' was a lot bigger.

I hope DH doesn't have any other weekends away planned in the near future - it needs to be all hands on deck right now - no matter how sucky that is. A night out, fine - weekend away, much less so.

You need to have another talk with the consultant about Bea being sick,

Great news about her foot & a good weight gain!!

I agree. Can you ring tomorrow and speak to the consultants's secretary to ask for an asap appointment - or get your GP to ring for advice?

The playroom thing - have you the energy to write a brief letter addressed to the Matron for Childens services asking that they ensure you can wait away from other dcs in circumstances like that.

It's lovely to hear how well Beautiful Bea is doing - sorry to hear about the sickness though.

Rather than Gaviscon you could ask them if they think using a thickener such as Thick N' Easy might help? You can use as much or as little as you need to make the milk feeds just slightly thicker so you can still feed by gravity rather than push.

You've come such a long way

Oh thanks for replying quickly, ChippingIn (and I get the needing sleep thing!) So, you don't think I'm over reacting about the germs? I hate making a fuss and thinking that people will criticise me behind my back for being precious (the nurses), but I sit there feeling like the crappest mum for compromising Beatrice and exposing her to germs.

As for the tube change, she needs to be near oxygen, so I can't do it at home, apparently. I might talk to the nurse/HV/God knows who about getting the tube changed at the local GP surgery in an emergency instead?

Yes Northernlurker Perhaps I should ring the consultant's secretary...

Sidge, I wasn't happy about using Gaviscon as the dr at hospital had said we would try Domperidone if the tube change didn't work. But this is the problem- we don't have one point of contact, we never see the same person and noone seems to want to take responsibility for making a decision. So when the GP said Gaviscon, dh just agreed.

I feel a bit overwhelmed all of a sudden, like I need a spokesperson. I haven't felt this way before.

In a way cup of tea i like to hear of your normal-ish stressy days cos it shows you are all alive and living.
I hated my baby's ng tube and she was constantly pulling it out too.
I am a right bolshy old cow now after having 2 babies with health needs.Its a skill you learn as if you dont speak up for your babies nobody else will.

No, I do not think you are over reacting re the germs, not one bit. Playrooms/waiting rooms in hospitals/Drs are just not the best environment for immune supressed patients, especially tiny patients and neither are other children :(

You have to make a fuss on Bea's behalf when other people either don't know or do know and don't have the required common sense to assist you in avoiding these bugs.

The nurses & other people should not criticise you for looking after Bea - and if they do, who cares? I was going to say they could go fuck themselves but it's not very polite

Oh, we didn't need to be near oxygen, but as I said, my 'patient' wasn't a tiny newborn. I would be wary of getting it done at the GP's as they generally don't have too much experience but it would be worth asking if there's anyone there who does have the experience?? Or is there a smaller hospital, some kind of specialist or anything closer? Or can you not have Oxygen at home??

Thing is - I'm pretty sure everyone who you meet at the hospital means to do the best for Bea. They mean to make their system work for her BUT because of shifts and the time of day stuff happens and being busy with oither cases etc the only people who always see everything with BEa are you and dh. YOU are the experts in her care and the hospital should recognise that. I work in a hospital. We can do amazing things and we can also be amzingly crap. So next time you go to the children's ward just say 'it's winter, Bea is staggeringly vulnerable, I can't wait with other children. If there is nowhere on the ward then here is my mobile number, I will wait elsewhere. Please call me when you're ready for me.'

Oh sweetie it's so hard isn't it? Reading your posts takes me back 7.5 years!!

Do you have a paediatric consultant for Bea? It could be worth trying to identify him or her as Bea's overall decision maker. I appreciate they're not there all the time but if you can set up an appointment whereby s/he writes a sort of 'care plan' - this is what needs to be done if x, y and z happen.

Re changing her tube at your GP surgery - this is unlikely to be possible as it's just not something us practice nurses do - we're not trained to do it, and very very few practice nurses are paeds trained.

However I see no reason why you couldn't have oxygen at home and be taught how to do tube changes. We did them for DD2 (good job too as she had her NG for 18 months!) but we also had home oxygen for her.

Hugs to you all xxx

Oh you poor love. Just caught up (again) and sounds like the weekd has been so tough on you all.

I love the new photos. I adore the one where you are ready for the safari park. Bea's little face! She reminds me of DS2s little face, we called him Pea as his head was so lovely and round like one

I have no advice (crap as I am) but I do hope the vomitting stops for Bea.

yy, agree totally with sidge. you need to be able to do it yourself, and they need to train you/ equip you to do so. i think they just haven't got round to that yet, so maybe it's time to start pushing in that direction. i think it is a natural progression and part of you taking on her care needs.

you aren't over-reacting about the germs thing. dd2 was only at home for a week before being re-admitted with a chest infection due to germs that dd1 and ds1 brought home. and they were just the common or garden school yard germs, not 'take me to the hospital' germs.

fwiw, we used gaviscon fairly long term. because dd2's swallow etc was so underdeveloped, i think there was just less natural resistance at the top of the tummy for feeds, so she was far more likely to vomit, just because of the muscle weakness, if that make sense. i was always astounded she was putting weight on. she has low core tone, and it makes sense for the muscle (assume some sort of sphincter lol) that prevents reflux to be weaker too.

sending healthy germ-free vibes x

Not expert enough for advice I'm afraid but here

oh Cupoftea, so sorry to hear your troubles! And no, like the others said, you are definitely not over-reacting about the germs - the last thing Bea needs is a cold/cough!

I hope the vomiting thing gets sorted out very soon, and I also think it would be a good idea for you and your DH to learn how to do the ng tube insertion, with an oxygen canister on hand. The hospital should have oxygen tanks they can lend you, or even hire out to you if they have to.

Next time you go to the hospital, make much more fuss about keeping her away from the other children - you need to unleash your inner tigress!

Fingers crossed that she stays germ-free and stops being sick soon xx

Oh Cup - so sorry to hear of your struggles. Being passed from pillar to post must be so distressing for you and you are being so brave. As others have said, you will have to start demanding, and not caring what other people think.

Much love to you and Beatrice the Brave.