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.

Wondering how Bea and the whole tea set is going.

saffron love your reference to the whole tea set!
How are you all doing cup? Have been reading your updates and thinking about you lots. It sounds as though you've all adjusted to Bea's arrival and life in the tea household is finding its own new level of stability.

Your love for Beatrice oozes out of the laptop screen, and it really sounds as though you are surrounded by wonderful caring people who want to do whatever you need to help you, Bea, your DH and the other girls.

I can't think of anything else useful to say, other than that I think of you all often.

Hi,

Just thought I'd pop on briefly and say hi. Saffron I love being part of a tea set, how funny!

We've had a busy half term, but apart from a quick trip to the eye casualty on Tuesday (Beatrice can't close her eyelids, so her eyes are vulnerable to infection), it has been uneventful in terms of Beatrice's health, which is exactly what we want! It was so lovely to have a week off from the HV and community nurse, life almost felt normal.

My anitdepressants have really kicked in now and I feel so much calmer than in the early days. I feel like I can really deal with this. I haven't cried for a couple of weeks now.

Bigredbus, thanks for sharing about your dd. We had a great time at the safari park, and predictably, Beatrice slept through the whole day! I only had a handful of strangers enquiring about the feeding tube ... When people ask me, 'Was she premature?', I just reply, 'Yes'. I can't be doing with going into the ins and outs as a form of small talk!

Girls are off trick or treating and to a party this evening with my sisters and their children. I was taking them and my mum was coming to sit with Beatrice, but she's poorly now. I'm sorry to be missing out, but at least the girls still get to take part.

Tomorrow, dd1 has her grommets operation. It's a tiny op that she's had before, but I still don't like watching her going under the GA. Then in the afternoon Beatrice has her feeding assessment with the SALT. I'm not sure whether I or dh will take her to that, it depends on the logistics of what time dd1 is discharged from hosptal.

Off to feed Beatrice now, then taking dd1 and dd2 to play at a friend's house (INSET day here), before Beatrice and I go to Hobbycraft to stock up on bits and pieces for making Christmas presents.

I hope everyone else survived half term!

So pleased to hear you sound so up beat, hope the grommets and salt appt go well tomorrow.

We've survived half term too! Boys go back tomorrow- it'll be quiet here!!

Take care.

Answering questions about prematurity with a simple yes is the best thing to do.

I am sorry to hear that Beatrice is poorly. Is it a cold?

Have fun in Hobbycraft. I love shopping there but can't go for a while now.

Sorry to hear Beatrice is poorly but glad everything else in your update is positive.

I'm so glad you are feeling better and I hope DD recovers from her OP fairly quickly.

We are not on inset here but DS decided the end of half term when due back at school is a good time to get ill! so we are at home.

Best of luck with SALT and enjoy your trip to Hobbycraft (I'm so jealous) and making all your xmas stuff.

Sorry I wasn't very clear- it's my mum who's poorly, not Beatrice, she's fine and dandy!

Have left Hobbycraft £40 lighter- that place is lethal.

Sorry to hear about Beatrices eye infection. And hope the grommet OP goes well for your other dd.

One tip I have is to see If you can get your GP to put some suitable medication on "repeat" prescription and keep some in tthe house it might help if there are future problems - maybe you'd still need to get her checked out but at least could start making here feel more comfortable in the meantime. Maybe the community nurse could put in a word.

Another tip (I've been at it for 13 years so have learned as I went along!!) is that occasionally you just have to say "no, I can't do an appointment next week etc" just so that you get some breathing space. I would sometimes just block a week out and say we weren't available. Obviously you know Bea, and you know which things could be missed for a week.

Great to read your update, glad you are feeling calmer and have had some 'normal' time.
Prayers for your difficult day tomorrow, logistics found a nightmare.
Please keep posting

And if you found Hobby craft shop tempting, don't look at their web site, spent double!

Oh, hope your Mums better soon then!.

and yes to Hobbycraft being lethal but I bet all the DD's will love all the glittery gluey stuff

Brilliant that Beatrice isn't poorly but sorry your mum is.

hope everything goes well tomorrow. best of luck with slt and fingers crossed they come up with a safe way of encouraging oral feeding again.

Good luck with the grommet operation tomorrow. Glad the smallest teacup is doing so well and all power to the whole tea set!

Good luck with the grommets! All mine had them and it made a massive difference.
Sorry your Mum isn't well but glad Beatrice has had an uneventful week!

Grommets went well, dd1 was discharged an hour after coming round from anaesthetic. The feeding assessment didn't go as well. The SALT said Beatrice is to have absolutely no bottles as she is panicking when anything goes in her mouth, we didn't even try her with a bottle, she could tell just from using her finger. She is referring her for a videofluroscopy which should be after Christmas, thus allowing her some time to grow and see if things change, but she said the consultant will most likely want Beatrice to be fitted with a PEG tube. At what age/size do they fit these?

Of course, then I began going to the dark place of What Ifs? What if she doesn't make it through the anaesthetic? And then of course, once I am in the dark place, it's hard to get out. So I spent the evening stressing about why is Beatrice being sick? She was never sick until they changed her NG tube (2 weeks ago tomorrow) and since then we've had real troubles getting an aspirate and she's been sick 4 times. Of course, all babies are sick, but she never had been, so why now? So the nurse is coming this afternoon, as is the HV, and she will have a look at the tube I suppose, but I can't face any bad news today, I really can't. HV will weigh her, but I'm worried about her weight gain as we haven't upped the volume of her feeds in 2 weeks. Due to her being sick, the children's ward nurses thought the increased volume might have been the problem, so we took it back down to 50mls. But she has still been sick on 50mls, and the volume will need to be increased eventually if she is to continue to grow.

Can you see I have moved into a state of paranoia?! I now have her breathing and feeding to keep my mind occupied with worry!

Praying light around you and Beatrice.

I am so sorry you are really worried, Cup, but hopefully the people coming this afternoon will be able to reassure you and answer your questions.

Oh, cupoftea what a worry!
Could her being sick be due to type of formula? Sorry, I don't know if you are giving her breastmilk or formula. I just remember my brother who had bad reflux as a baby throwing up when he was given a particular formula but he was mainly breastfed. A different formula didn't seem to bother him so much.
Don't know much about PEG feeding other than that my cousin's little boy is PEG fed and I think has been since he was around 3? He has Down Syndrome and had an aversion to anything going near his mouth. He seems to do very well with the PEG.

well ihave a friend with a little girl who is 3? and she has a PEG and is fine, running around like any other normal child, she has had it from a young age as she had problems with swallowing and aspirating.

hope the weigh in goes well and you can relax a little bit, thinking of you all xx

I hope that the health profs that are coming can give you some answers. I don't know anything about PEG tubes but I'm sure someone will come along with lots of knowledge to answer your questions.

Big hugs, try not to worry to much about the future, just one day at once.

Dd has a gastrostomy, she has a mini button, we love her button it's made feeding her much much less stressful. I can send you pictures if it would help at any point. The op is pretty straight forward, we stayed in for 2 nights even with Dd's complications. The NG tube can be a long term solution if you don't want the operation, but as far as I understand it can make vomiting easier/more frequent in some people. I hope the HV/CCN visit has gone ok :)

DSis 13 and has a gastrostomy, which he had at 3 - although it was suggested earlier but we were hopeful he wouldn't need it.

Technically his isn't a peg as it wasn't introduced endoscopically due to other medical problems; he had it as an open operation which was a "bigger deal" in some ways but easier in others as he didn't need to go back into hospital for the first change (which I believe happens if it is put in endoscopically).

TBH we were sorry we'd waited as it is much easier to manage for both us and him. I can't offer you pictures like BobLoblaw (he doesn't like people looking at it which is something that has happened as he has got older) but am willing to answer any questions.

We found that the health professionals were rather bad at giving us info about a support group - but there is one which supports all types of feeding (NG, gastrostomy, intravenous) - Its called PINNT (the childrens bit is half PINNT) - www.pinnt.com

Oh I'm sorry to hear your having worries.

I have many children in pre-school (SEN school) with PEGS/ gastrosomies that have had them fitted as babies or up to the age of 5.

I wondered myself if the vomiting was due to reflux and I know that vomiting can misplace the end of the NG tube so it's a vicious circle.

I hope the HV had some helpful suggestions for you.

I'm glad DD1's grommets went OK and she bounced back quickly.

Take care of yourself Cup.

Happy that the grommets went well, is she back to school soon?

Sorry that you have been faced with more uncertainty and a possible operation.

Pray that you will soon be freed from the paranoia