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 she was bound to be tired with all the messing about with the tube. Sounds like the nurse wasn't used to it and struggled. tbh it probably is better to have someone do it who does it day in day out!
As someone else said, don't feel to need to post in detail. Just a quick note to let us know how our girls are doing!

Cup I can't believe how much you all have going on with another DD getting grommets and you having your tooth out. I hope you can all have some rest and some snuggling with Bea time. Must be very hard dealing with the feeding tube scares. It can only be normal for you to be weary, low and resentful at times. Don't put pressure on yourself to be a perfect human being with everything else you are dealing with!

cup just read your post about the problems with the feeding tube.
Sometimes it just happens that there is a problem and never will be again but we found that it was really difficult to pass one down ds's left nostril due to his "tubes" on that side having a funny bend, so it might be worth looking to see if a pattern emerges with Bea. It meant DS didn't get the sides changed as often as he "should" have(one nurse who was left handed acould do the hard side!) but that didn't cause him any problems

Have you thought about being trained to pass the tube yourself? When DS first had his tube the nurses offered to train me in how to pass it - and I was very resistant at the thought of doing something so horrible to my baby. But after a few of times of having to take him to the hospital to get it replaced when it came out (as I couldn't get the nurse) I learned to do it myself and found it was much less traumatic all round.

Hi Cup, popping in to see how you are doing. It must take a lot out of you posting these updates but it is great to see that you are geting so much good advice and wise words on this thread. I love hearing how your little Bea is doing though I don't have any personal experience so nothing very useful or helpful to say, sorry. I admire so much how well you are dealing with the medical side (the feeding tubes etc) and simply how brave you have to be when you are all alone with Bea and trying to decide what to do for the best.It is such a great responsibility. You have such a lot to cope with and you are doing an amazing job. As others have said, hopefully Bea will become more responsive with time. Her early birth must play a part too, iykwim. Fantastic news about her hearing though, that must be a big relief to you.

One thing I can assure you of though is that it is totally understandable that you feel resentment and upset at others pregnancies and births. Of course you do, you would not be human if you were unaffected by it. Life can be so unfair, no one will judge you for recognising that and for feeling hurt and confused that things did not go as you expected them to. I hope that you have a good week and that Bea continues to put on weight and to thrive xx

And just to mention the mamas and Papas blanket again, yes I totally understand what you mean about wanting to buy something new and beautiful just for Bea. Are you able to take Bea out and about in a pushchair/pram yet? The lovely blanket will be so cosy wrapped around her.

starfishmummy I have said that I don't want to know how to pass the tube, but as she gets bigger, I might change my mind. Like you, we have to go to the hospital if we can't get hold of the nurse, which is an added complication. They can only get the tube in one nostril, the other is too small, so I hope that will also change as she grows bigger.

HalfTermHero Yes we go out and about, but only really to the shops or the school run. I am planning to take them all to a Safari Park on Friday though- wish me luck!!

I finished filling in the forms today for the DLA, and I saw that we are NOT applying under Special Circumstances (less than 6 months to live), so that is better than I first thought. Funny what constitutes good news these days!

Oh, and we have an appointment for Beatrice's feeding assessment with the SALT next week, and we have heard that the physiotherapist will see us within the next 2 weeks to help uncurl and straighten her hands. I'm not sure if they are going to correct her talipes with the Ponsetti method or wait longer still. However, it feels like people are beginning to help, now that Beatrice is making it clear that she intends to be here for as long as she possibly can!

Oh Brilliant news cup. I know this sounds silly because you have no choice but I do admire your bravery!

And I absolutely adore your little girl!

She is doing reall really well. So is her mum .

Ah cup it's sounds like you've had a tough few days. I do love reading updates on Bea's progress. Hope all goes well with the SALT and that you all get to have a wonderful day at the safari park on Friday xx

Thank you, you three

lovely updates :)

glad things are getting moving with regards to getting Bea some help, and good luck for your trip out!

i didnt get to the PO today, its been one of those days but your parcel is all packaged up ready to go, i was thinking tho how old are your other dd's? are there any magazines they would like? i think its imp for siblings to feel included, so will happily stick something in for them, only i dont know what girls like, (well not yet anyway as dd is too young to let me know!)

anyhow am meeting friend tomorrow and going to park which means going past the po so wil post tomorrow :) xx

An update full of good news! You must be really encouraged that all Bea's appointments are coming through now. Hopefully she will be greatly assisted by the various experts in their fields. It will be wonderful for you to see her progressing. Plus it will be a sanity saver for you to have positive input from medical specialists other than the doom and gloom consultant you have dealt with to date.

Your trip planned for Friday sounds like a whole lot of fun! I have 3 girls too and am trying to decide where to take them this half term. Hopefully we will manage a lovely day out too. I need to get my thinking hat on and follow your example! Looking forward to your next update xx

Like everone else I love reading the updates about you and little Bea, and I'm so glad that she is continuing to progress, well done you and your little lady.

Big hugs to you, your DH and your 3 cupettes xx

cupoftea - I just wanted to congratulate you for your beautiful & brave baby Beatrice. She is so lucky to have you & family. I hope the positive stories on this thread bring you hope. You are coping so well. I'm sure she will not disappoint you.

Hi cups. Followed your initial thread but then lost you as not been on here too much.

Your beautiful Beatrice like a real fighter!

I just wanted to add my best wishes and prayers for all of you but especially the gorgeous baby beatrice.

1st time I've read your updates for a while, cupoftea. So glad Beatrice is able to be at home with you all, and amazed by the strength and love that oozes out of your writing. It is the hardest of times, but you are clearly determined to make the most of her every day.

Not got any experience of SN, so I can't say anything practical. Just want to send love to you all.

Glad about the DLA Form cup, I can totally see how that would be good news :)

Enjoy the safari park, Bea's photos are gorgeous.

oh cup! Good news that the DLA form and the medics are starting to acknowledge that Bea is doing her damnedest to stay around! That's great - must feel better to know that you're not swimming against the tide any more, but that the tide has turned and is supporting you and your family.

Hope the safari park visit goes well :)

Hi cupoftea. Good to see you posting again - I was wondering how things were going. Feeding tubes can be a pain can't they! My DD often used to have one in when she had been knocked out after a seizure - the nurses used to find it difficult to pass (she has one very small nostril) and even more difficult to aspirate. They often used to end up getting an x-ray done just to check it was in the right place! At the age of 12, DD had to have a tube for permanent feeding - we live 20 miles from the hospital and 14 miles from where community nurses are based - so I had to learn to pass the tube myself. She would often vomit or cough the tube up within an hour of me passing it and her 10 yr old brother became a dab hand at helping to hold her head still and hold the tube in place whilst I replaced it and taped it down!!! Thankfully she had it replaced with a MicKey button at 13.
Its funny how you start to see things as being positive that others would find 'traumatic'. The times I've been in hospital with DD when there is a child on the ward with a relatively minor illness who has just been kept in overnight for observation - the parents are behaving as if their whole world has come to an end and fussing over the fact that little 'Joshy' doesn't like the hospital paracetemol and only likes Calpol. You feel like going over to them and telling them to get a reality check and to look at what you are going through!!!
It is perfectly normal to feel 'jealous' of others who are having healthy babies - it is part of the grieving process - grieving for the child you did not have - eventually it will get better. Of course there will always be moments when you think what might have been - DD was 17 this week and all her peer group in MS land are learning to drive - mind you she's had her own car since she was 5 - just needs me to drive it for her. Was quite relieved though when all my friends DCs where fretting over GCSE exams and results in the summer - it was quite nice to sit back and think - "at least we are not having sleepless nights over that one!!!"
Hope you have a lovely day out at the Safari Park - we had a trip there at the weekend for DDs 17th birthday - not sure how much she took in - but at least we felt we were doing something to mark her birthday.
Keep posting on here- whilst the professionals can be very supportive - they rarely understand how it feels to be you - its not something they can learn on a course!

Hi cupoftea just popped in to see how you and Beatrice are doing. I think about you often. So glad to see they are starting to look at things to do for her, physio etc.. How are you coping now? How are DD1 and DD2? Are you and your DH getting enough support? Big hug for your little fighter x

Hello Cup
Only just read this thread and a few of the posts, not seen your other thread but wanted to send hugs your way for all the family...

Hi-I've not posted on your thread before,but just wanted to add my support and best wishes for you and your family.

It is and will be a rollercoaster of emotions as you are discovering-Try to be kind to yourself-Your reactions to not having that initial wonderful time with your beautiful newborn are shared by others on this board. me It is hard.

You sound as though you are coping extremely well and I'm glad Beatrice is doing well.

Love and hugs to you and your family and little Beatrice.

Your love for her shines through your posts and I know Beatrice will be experiencing all that love for herself in that very special way that makes babies feel safe and secure.

I do hope you are able to find the emotional space just to simply enjoy her. Life can rush by in a succession of busyness and problem-solving and I'm forever telling myself to enjoy the moment - just to revel in the wonder of a precious human life and all those snuggly baby things. All strength to you.

Just checking in to see how the lovely Beatrice is doing. So happy to hear that things seem to be moving forwards for you all.