Not borrowing trouble ahead of time, just enjoying each day with Beatrice.

[cupofteaplease]

Thanks to Thumbwitch for inspiring the title of this new thread.

I will do my very best to minimise my worrying about the future as none of us know what it holds. For now, it's all about celebrating Beatrice's life today, every day.

As always, please feel free to follow us on our journey, and thank you in advance for the wonderful advice I am bound to receive from fellow parents, of SN children or otherwise.

Here's to a positive, uneventful thread!

Gorgeous pics, love Bea's smile x

Found you - was getting a bit worried.

Off to look at the new pics.

Oh my! How lovely to see her smiling.

Great thread title! :)

Lovely new photo's too.

ahhh found you
seen photos
just gorgeous
teary

OH THAT SMILE!!! She is edible!! All the new pictures are lovely but that smile! And look at her being so chatty too! Cup she is so full of life, and the look in her eyes is so sparkly - you have one very happy (and beautiful) little girl, that much is clear! And it's great for both of you that you can now share baths with her too - I know from sharing with my kids just how bonding a thing that is.

Sorry to hear you have been fighting with DH - it's no surprise given the immense stress you have been under as a family. Go easy on yourselves.

And yes enter the competition - it'll be fun ... and tbh she should win for those eyes alone!!!

Hugs to you all...

I did lose you, yes - haven't been my normal prolific MN self the last few days. I am very pleased that I have inspired your title - thank you for your acknowledgement, I'm touched :)

Baby Bea just continues to astound, doesn't she? Chatting and smiling away, she's absolutely delightful. Of course you must enter her in the baby competition, tubes and all - at the moment, they are a part of her life (although not part of who she is, we hope she'll grow out of needing them).

I hope your DH can "cut you some slack" - and I'm glad he did some stuff to give you a bit of a break - but he does need to realise that you are mentally and emotionally working your arse off all the time, even if physically you might be sitting down for half an hour. And mental and emotional work can exhaust you physically as well.
I still think it would be good for him to have a whole day alone with Bea to see just what it entails - including all the worry - and then he might realise how tiring it all is for you, day in and day out.

Still in my thoughts, all of you - Bea is still doing so well, long may it last! xx

Gorgeous Bea. Do enter her in the competition. She should win on her eyes alone.

The smile! She is a honey bun. Enjoy your little moments off. You are doing an amazing job under tough circumstances.

Ooh, lovely new piccies cup

So lovely to see the smile - and you both look fab in the bath !

If you and DH are both up for it entering Bea for Baby face of the Year at the show would be a great thing to do !

Like someone else said you can enter her as "Bea - MN Baby of 2012"

What do you think, MNHQ ? OK with you guys too ?

Oh thank goodness! I hadn't realised there was a new thread and I was worrying! x

What a gorgeous little sausage, Bea is!! Obviously loving the bubble bath with Mummy. She'll be wanting girl-time with you down at a luxury spa next.

The "chatting" sounds good. What does she say? "I've got the BEST Mummy in the world!"

Wow! Loving the picture of Bea in the bath and the one of her in her spotty blanket, so smiley and gorgeous :)

Love the new photos, Bea is just toooo cute, those eyes are amazing would love a big hug with Bea!!! She will be the winner for sure if you enter the competition.

What a fantastic smile, she is bloody GORGEOUS!

(I know you know that, but it bears repeating IMHO )

Beautiful new photos. :)

Do let DH enter Bea into the competition, she is so beautiful that it would be a crime not to. :)

I love the pictures! She's a smiler

Put her in the competition - she's a star baby of any year If there's another baby entered as brave and gutsy as our Beatrice I'd like to meet them!

Hey Cup, loving the new thread and photos, especially the one of you and Bea enjoying a bath together. Your thread is aptly named and it is clear that you are trying to live in the present with all of your sweet girls. That is really all that you can do and you are doing it brilliantly. You inspire me in so many ways. I've been meaning to write and tell you that your older girls do need you, more than you know right now. Even if they don't realize it at their young age, you are an inspiration to them. And I imagine your husband, although challenging at times, just needs a little guidance as well. Stress has a way of impacting relationships, even good stress, but you are sharing a bond with three wonderful little girls and hope and communication will see you through. Bea has a gorgeous smile like her mummy. As always, I love your updates and your ability to be honest and frank in a public forum. Hugs to you all!

I quickly wanted to share a little anecdote with you:

There has been a lot of talk in the house of prognosis, doctors' opinions on Beatrice's condition etc, some of which the girls have been privvy to, where appropriate.

Today, dd1 (6) was reading a book and asked me what a miracle is. I told her it is something that happens that shouldn't really be possible. I told her that people believe that Jesus walked on water, which isn't possible, therefore if it happened, it was a miracle.
Dd1 smiled and said, 'Then Beatrice is a miracle'.
'Yes,' piped up dd2 (4) 'Because the doctors said she would never walk on water either!'
Oh how I laughed! You have to love the things children say!

As for the little lady herself, she is having a lovely week. The nurse will be arrivng in an hour to look after her whilst dh and I escape go out for a meal with friends.

The CNN rang me yesterday and told me Dr Doom wants us to put a NJ tube into Beatrice before referring her externally to gastro specialists. Let's hope it works... We are going to see Dr Doom about it on Thursday before our meeting with the paediatric neurologist from Oxford. I might need some praers that afternoon... Bea will need to be admitted to pass the tube and monitor how she copes with it. Fingers crossed.

If anyone has experience of NJ tubes, please, please share them with me!

What's an NJ tube? the only thing I can think of is naso jejunum.
I'm familiar with NG tubes, they can' be problematic but as long as you check their siting, are pretty straightforward.
Enjoy your evening.

Yes, a nasojejunal tube, passed via the nose going straight in to the small bowel. I was wondring silly things like, will she feel hunger? Is it physically possible to be sick with no food in the stomach? Won't the milk be too rich going straight into the bowel if it hasn't been partially digested by the stomach acid?

Heehee!!! bless your dd's what a completely innocent yet hilarious comment! Nice they realise how special Beatrice is though - you know what they say out of the mouths of babes and all that! Keep dd1's words in mind on Thursday - whatever they say (hopefully it will be positive or at the very least productive) - and of course 'never underestimate a Beatrice on a mission' xx

Have a lovely evening tonight, enjoy some grown up time and if I see you tomorrow I'll try my hardest not to envelop you both in huge hugs so you call security at the strange lady molesting your family xxx

Love the story of your eldest two and the discussion about miracles cup
That's a classic
(Glad you've put it here so it never get's forgotten )

Great to hear Bea is having such a good week

And your "silly" thoughts about the workings of NJ tubes sound pretty well informed to me !

Have a lovely evening "off" cup and mrcup

(We never had one but I believe NJ tubes can reduce reflux and vomiting as they bypass the stomach)