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.

Just checking in and catching up on Bea's progress 7 weeks - wow! You are all amazing xx

Beatrice is beautiful, and you are amazing, cupoftea. And everyone else on this thread is pretty amazing too - the help, support, information and love that have been poured out here are - words fail me.

You, Beatrice, your dh and your other lovely dds will all be in my thoughts and prayers, Cupoftea.

Another lurker... wanting to add to the best wishes for Beatrice's 7 week birthday!! As a mother (of a totally gorgeous - IMVHO- DS3 with SN) I just wanted to add that unfortunately the letter from all the health care professionals will tend to contain long words, and phrases, that will make you angry, and make you cry, but ultimately you will have the upper hand, because you will know that you are priviledged and blessed to be the parent of your beautiful, unique child. XX

happy 7 weeks (and a bit!).

Also a bit late but happy 7.5 weeks now Beatrice! So glad she is putting on weight and hope she continues to improve. She is such a little trooper! Bless her - and all of you xxx

Hope this has been a good week for you all and Bea.

What a weight gain, well done Bea and family.

Just popping back to catch up on the Beautiful Bea. Can we have more photos soon please? :o

Hi all,

Well Beatrice was weighed today and is now 6lb 14oz, so a weight gain of 6oz this week. Not as good as before, but she is still on the 2nd centile. I feel okay about this, as she is still being sick twice a day so I was worried she might not have gained at all.

We are seeing the orthopaedic team tomorrow. Monday she has her 8 week jabs and I have my PN check up with the doctor. Tuesday she has a jab on the children's ward that protects against a form of bronchilitus (Syntogis? Synogin? Can't remember the name), then has more investigations with the audiologist. Wednesday is the HV to weigh her again and she needs her tube changing at the hospital some time next week, so I guess we'll hear from the community nurse soon.

As for me, I am tired. So incredibly tired. I lay awake a lot at night, just waiting for the morning, worrying that she might aspirate her vomit if I go to sleep. I have had 4 courses of antibiotics since her birth 8 weeks ago, a tooth extraction, been measured for a tooth crown and am going back this afternoon to be fitted with said crown (so all of those have needed lots of local anaesthetic, 5 injections each time). I woke up this morning with a sore eye that feels bruised, I think it might be a stye. I am exhausted, my body and mind need a good rest. But my dh works shifts and puts in 70+ hours a week, 12 days on, 2 days off. So he is tired too. When he got home from work yesterday I was having a 5 minute cat nap. I'd literally just closed my eyes, but today he was grumpy with me and said, 'We can't all have an afternoon sleep' What we don't need is to turn on each other. Until now, we have been doing so well together with all of this.

The HV suggested I tell the GP next week how I am feeling as she thinks I might need my anti depressant dose to be raised. I don't mind anymore, I just want to feel like me again, I thought I was doing so well.

Sorry, this has turned into a moan about me, I've hardly mentioned Beatrice at all. Not much has changed with her, she has had a stable week and has continued to enjoy all her cuddles. We went to a eucharist service at school yesterday and she was a big hit with the clergy people there. They took her details and are going to pray for her in church. That made me smile . We also met up with a friend who has a 3 month old baby. I couldn't believe how much she was able to do! And she was so, so cute and smiley. I thought I'd feel terribly jealous, but I didn't at all. I guess I've accepted that Beatrice isn't like other babies, so I mustn't compare. I don't feel the loss that I felt before, as I can't actually imagine Beatrice being anything other than who she is. Does that make sense?

More pictures soon, I promise.

This is your thread as much as Beatrice's and you need to post whatever you feel you need to get off your chest and share. You are doing an incredible job and your husband too, he must have just felt a bit jealous that you had 5 minutes as he probably feels all he does is work, baby and sleep. He knows what you do really, he is just shattered as you are.

Weight gain is good whatever the amount and you can't really exopect 1lb a week unless you are FAB who didn't realise how big FABBoy would have been if he carried on with that increase.

Hi Cup - great news that Bea is continuing to gain weight, but sorry that you are feeling so rough.

Also lovely to hear that you have reached a plateau of acceptance so that you don't have those terrible feelings of loss.

Bea is who she is, and she is wonderful.

We will redouble our prayers for you as well as Bea. Hope the GP is understanding.
Sounds as if you could with some TLC

I wish I lived near you so I could help. I'll carry on praying though.x

it's all ok - it just means your adrenaline levels are getting back to normal after being on 'must cope' mode for the last 8 weeks.

take some time and regroup - sleep in the day if you get the chance (even if it's the sofa and bea is in her car seat on the floor next to you) and be kind to yourself. it's a long haul, and whilst the rollercoaster is on a huge high or low, you automatically cope - it's the straight and level bits that are often the most difficult as there's nothing in particular to focus on, so the low level fretting and concern for the future takes over. all fine, all perfectly normal.
and so is dh's reaction, he's going through the same sort of thing too.

if you feel that you might needs your ads adjusting, make an appointment and get it sorted.

hope all the jabs go ok. x

and and [sofa emoticon]

stay safe and take some time to breathe x

have you contacted home start btw? the difficult thing for me was always accepting help - i'm a bit of a compulsive coper. really important for you to gratefully accept any help that is offered (and seek some out if you need it) rather than being a hero... heroism is good for the ego, but not great for long term mental health.

Hi, thanks for the update and please feel free to let us know how you are too - your just as important. I guess in some ways it's harder for you because you are aware of what Beatrice is going through, whereas for her it's normal. I'm not suggesting it's easy for her or it doesn't matter but I hope yswim?

Would you mind if myself and others said prayers in church for Beatrice and for yourself Just little silent prayer for all the cup family in your time of need?

I'm so glad she is doing well. It's lovely to hear she is gaining weight and I wish you lick for positive news at your appointments. (((hugs)))

cup - you do need some rest and a bit of time with your dh.

Do you have a children's hospice nearby? Has anyone mentioned the chance of getting some respite? Children's hospices don't just offer end of life care they are there to help all your family. And by respite I don't mean that you need to leave Bea there at all BTW just that you can all go and stay overnight, the staff will do the night-time care and you can have an unbroken night's sleep. Speak with the community nurse about it.

Cup - this is your thread. You never need to apologise for 'moaning' silly! :) It is lovely to hear how Bea is doing, of course it is, but primarily this is to give you what little support we can x You have so much going on, both emotionally and practically - it's no wonder you are exhausted. DH too. It was a pretty crass comment he made, but I'm sure he doesn't think you spend all your afternoons napping - we all snap when we are stressed and tired. Is there anyone who could come and stay over, but stay awake, who you would trust to listen out for Bea so you can get some decent sleep? If you could do that and farm the big girls out for a couple of nights it might help recharge your & DH's batteries.

I just wish I lived closer :( Take whatever help anyone is offering and if they aren't offering ask x

Hey cup I've been following Bea's progress - she is such a beautiful little girl, and doing so well, as are you xx

Can I ask where abouts you are? If your nearby I know a few SN babysitters who might be able to help give you a short break. Once things are a little less busy, you should consider home start help, they are a truely wonderful service.
Keep moaning it helps

8 weeks??

Cup of tea. My ds was prem and very un well when he came home. He aspirated a few times in hospital and choked on his vomit. I bought a angel care apnoea monitor. Would this work for Beatrice? I couldn't sleep at all and was constantly checking him but I can and do now , just a thought.
You are doing so well and it's lovely that you are not comparing or jealous , my ds is behind my friends babies and I hate it, worrying all the time.
Also when ds was in scbu and it was all a bit hit and miss me and dh had moments where we took it out in each other so don't feel your relationship is different but do try and stick together ( hard as it is) ..good luck .

We had a great day with Beatrice yesterday. She was 8 weeks old and my sister and I took her for her appointment with the orthopaedic team. I wasn't sure what we were expecting, but it was a really positive experience. We knew before she was born that she had a club foot, so we had met with the physiotherapists antenatally. Then when Bea was on specail care, one of them came up to manipulate her hands. But the day we got her MRI results, all physio work was cancelled, as it wasn't 'worth it' due to her problems.

So, we walked in and the physiotherapist said, 'Here she is, defying all the odds!' Then the consultant came to see her and said we could start the Ponsetti method to correct her foot- I had no idea this was on the cards! He said her hips are both dislocated, but they won't do anything about it as it wouldn't hinder her from walking. I said it was okay, we knew she'd never walk and he replied, 'Never say never. We see great things and babies proving doctors wrong all the time.' So that was a boost.

They sent her for an xray which showed her bones are all ok, so we went back and they put a plaster cast on her leg, up to her thigh. They consultant checked it, and they were all pleased with how well they had managed to manipulate her foot. They also made some temporary splints for her hands. The permanent ones have been ordered from the States and should be here next week. So, from now on, every Friday we will go to the hospital where they will soak off the cast, manipulate her foot, and recast it. She also rolled from her back onto her side whilst on the hospital bed, and the physio told me I need to keep an eye on her so she doesn't roll off the bed- this is the baby who can't move due to her arthrogryposis.

All in all, it felt like a milestone day.

This morning, however, we received notice from the DWP that Bea is not entitled to DLA as she has not lived in the UK for 13 weeks. So I guess we'll have to go through the application process again in 5 weeks- what a bloody waste of time! That money would really come in handy as all the trips to the hospital are costing a lot in diesel and parking. Nevermind, we're coping.

Have a great weekend everyone, I'm taking the older girls to watch Arthur Christmas with some friends- can't wait.

Go Beatrice rolling already!!

What a difference a nice dr makes! So glad you had a much needed good day xx

Err, where did they think she was living while she was inside you??! Mind you, I know that doesn't count but still. So much daft crap going on at the DWP at the mo.:(

Brilliant other news though!! Fantastic response from the orthopods, faaaarr better than Dr. Death.

Have a virtual (((hug))) and general dance around the room type thing - and a glass of for later in the evening. :)