Pre Eclampsia support

For Women & their families who have suffered with Pre Eclampsia, Eclampsia, HELLP syndrome, Pregnancy induced hypertension (PIH) and related conditions.
 
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 Emily Update

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HayleyP80
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PostSubject: Emily Update   Fri 10 Oct 2008, 2:27 pm

Hi Guys,

Thought I would start a new post as it feels like so much has happened since the last update.

At the start of this week we sat and had a long chat with Emily's consultant. Being so drugged up for so long after my op, I really didn't understand what had happened in the first 10 or so days of her life.
Sadly, the bleed on her brain is worse than we initially understood. They class a Grade 1 and minor up to a Grade 4 as severe... Emily has a Grade 4 bleed on the right side, and a Grade 3 on the left. They are almost sure there will be lasting damage and she will have some type of difficulties/disability but we wont know the extent until she starts to try to move/crawl etc. We are "ok" with the fact she will have difficulties but find it hard not knowing what and therefore not being able to prepare ourselves. The consultant said it coud be very mild that only a doctor would notice (but explained this is very unlikely in her case) or it could be something along the lines of cerebral palsy. We just won't know for a good while yet.

Also, after 5 lumbar punctures the fluid still continues to be an issue so after a week back with us in Swindon, they transferred her back to Southmead Hospital in Bristol. My poor little baby underwent her first surgery yesterday at just over 3 weeks old. They have put a reservoir under the skin in her head with a little tube attatchd which goes directy into the ventricle in her brain. When they need to drain, all the will have to do now is pop a needle into the reservoir and drain that way. Sounds horrendous to me but apparently it's a lot less traumatic that repeated lumbar punctures. The reservoir isn't a premanent solution so long term they may need to consider a shunt. We are keeping our fingers crossed it won't come to that. It's so heartbreaking that she has been through so much already in her life, I wish there were something I could do. I feel so blooming helpless.

So, thats where we stand at the moment. She is stable today and tolerated the surgery well. We are finding it so hard to split our time between her and Oliver. We have taken Oliver to see his sister a few times but he gets so bored bless him. He has started headbutting and slapping Simon and I (but thankfully no-one else!) so if anyone has any tips on how to deal with that, they will be truly appreciated.

Thanks all, shall let you know any further developments.
Love
Hayley xx
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Liz Pidgley
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PostSubject: Re: Emily Update   Fri 10 Oct 2008, 3:06 pm

Hi Hayley,

Ive already PMd you, but I just wanted you to know that we are all here hoping and praying that Emily continues to stay strong & that you, Simon & Oliver have all the strength you need to help Emily along her journey and to help Oliver adjust to having a new baby sister which means sharing his mummy & daddy.

Lots of cuddles & reassurance that you love him just as much as ever and that it will never change. Include him in decisions for Emily, making her pictures for her cot that are filled with kisses. And little gifts from Emily to say Thank you to her brother.
Be honest with Oliver - he will sense your anxiety however you try to hide it. He will just know when something isnt right with Emily & maybe cross with her for making you sad. (In his eyes.) Children are often far more resilient than us adults and than we give them credit for.

Helping him to understand how he feels using colours can be insighful. Choose a pile of 'happy' colours with him and then a pile of 'sad' 'angry' etc colours. Ask him to draw his family & seeing what colours he chooses, can he describe his picture. Then you draw a picture using the same piles of colours to explain to him.
Using different textures can be fun too!

It might be something really abstract that worries him, I know Ryan got panicky when 1 particular looked after Aimee. He described her as the lady with the 'scratchy voice'?!

However, when a situation becomes chaotic as it does when you have a child in NNU, it is really important to keep to a childs routine. It acts as a safety blanket - the constant if you like, that kids respond to.

Wishing you every strength & good health.
Liz

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Nicki D
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PostSubject: Re: Emily Update   Fri 10 Oct 2008, 3:42 pm

Hi Hayley,

I just wanted you to know that I am thinking of you and your family. This must be such a confusing time for poor Oliver, but as Liz says, kids are far more resilient than we give them credit for. He just needs to find a way of understanding what's going on, why everything has changed so dramatically.

It's going to be a rough ride for all of you, but know that we're all here for you, whenever you need us.

The offer of some more practical support still stands, if you need me.

Take care Hayley,

Much love,

Nicki xxx
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Caroline
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PostSubject: Re: Emily Update   Fri 10 Oct 2008, 7:23 pm

(((Hayley)))

This must be such a worrying and frightening time for you all. I wish that there was something I could say or do to help but please know that you are all in my thoughts so much.

Sending you lots of love
Caroline xxxx
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mouse
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PostSubject: Re: Emily Update   Fri 10 Oct 2008, 7:57 pm

Hayley so sorry to hear what you & your family are going through. I'm thinking of you all & sending massive hugs.
I don't have anything to add to the good advice given so far re Oliver, but there are lots of charitable organisations who should be able to help & have lots of experience in similar situations. Found this on the Bliss site:
http://www.bliss.org.uk/page.asp?section=21&sectionTitle=Families+and+carers
Hope it helps
Big big hugs to you all
xxx
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Carrie06
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PostSubject: Re: Emily Update   Sat 11 Oct 2008, 9:01 pm

Dear Hayley, congrats on the birth of Emily. Wishing her all the very best on her journey through the neonatal unit. Cxx
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HayleyP80
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PostSubject: Re: Emily Update   Sun 12 Oct 2008, 6:13 pm

Thanks Ladies,

Oliver has had a better day today, still a little clingy but not so aggressive (if that's the right word to use). I know he is confused by all thats going on and I guess we just have to strike the right balance between being a little "softer"/more relaxed with things but not letting him run riot (if you see what I mean?!). We are also trying to get back to his old routine too, he definately likes routine!

As for Emily, she's doing fine. They have given her a third blood transfusion today as her haemoglobin levels were a bit low. They are also doing daily taps of fluid at the moment and measuring her head before and after. They are aiming only to tap every second day but are trying to see some pattern in the amount they drain hence the daily taps at the moment.
They also took her off CPAP for a while and just used high flow (I think they called it) nasal prongs. She managed fine for a while but then got tired so they put her back on CPAP. The plan is to alternate between the two. She is on 21% oxygen at the mo so we are getting there!

Think thats all for now, hope it makes sense. My brain isn't quite fully functional lately Wink

Thanks for all the well wishes
Hayley xx
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ingrid
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PostSubject: Re: Emily Update   Mon 13 Oct 2008, 4:46 pm

Hi Hayley

Thinking of you all and willing emily to get well and for you to get better. I am sending all my virtual hugs to you.

I have a daughter who has Downs Syndrome she is now 24 yrs old and at first they gave us the worst senario saying things like she might not walk, talk and other things but hey she is what is classed as high grade she has no heart problems ect walked early took longer for her speech but cant shut her up now and loves singing and she can do certain things for herself trouble is its like having a teenager with all the raging hormones constantly. lol!

I am sure you and your family will enjoy emily no matter what she is your bundle of joy and every milestone emily will come across and achieve you will feel so sproud and burst with excitement .

Take care

Ingrid xxx
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Laurie
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PostSubject: Re: Emily Update   Mon 13 Oct 2008, 6:06 pm

glad to hear that things are settling down a little bit with Oliver. I loved all of Liz's suggestions! He really loves you, I'm sure you can tell, but just can't express his anxiety, frustration and fear. You will all get through it, though.

Hayley, I hope that you have people telling you daily that you are doing brilliantly. Just coming on here and giving us all updates is awe-inspiring. I would just close down and not want to speak to anyone.

My grandmother, who was deeply religious, used to say, "God never gives us things we can't deal with." I don't think you have to share her faith to understand why believing something like that is wise. If you truly believe that you have the resources within yourself to withstand whatever comes your way, you will do much better than otherwise. I'm sure you have times when you are overcome with waves of self-doubt, but from the outside we watch you with wonder and respect.

Emily sounds like a little fighter - you must be extremely proud of your children.

Lots of love to you - still holding you all in the light.
xx
L
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Jodie
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PostSubject: Re: Emily Update   Mon 13 Oct 2008, 10:10 pm

Hello Hayley. I just wanted to say that I'm thinking of you and your family. Lots of love. x
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HayleyP80
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PostSubject: Re: Emily Update   Tue 14 Oct 2008, 8:18 pm

Thanks Ladies,

All your support is what keeps me sane! It means so much so thankyou! And Laurie, your words nearly had me in tears! I have to admit these past 4 weeks have shaken me to the core.
So much has happened over the past three years, I'd like the next 3 to be rather boring and uneventful please!

Well, the good news today is that Emily is back in Swindon, she was transferred early afternoon. Her head increased by just 0.4cm so they didn't need to drain today either. When I visited tonight she was off CPAP, had no cannula's etc and actually looked like a proper baby! I think it's all finally starting to sink in.

I'm so proud of both of my little one's and, of course, not forgetting Joshua too. It truly has been one heck of a journey but I feel so blessed regardless of what "difficulties" we may have to deal with in the future. As long as they are both happy nothing else matters.

Getting a bit emotional now so off before I make a fool of myself Wink

Hayley xx
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alka
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PostSubject: Re: Emily Update   Wed 15 Oct 2008, 9:12 am

Oh Hayley, you're being so incredibly brave and you've been through so much. It's sounding positive about little Emily. Hang on in there, what a little fighter your new addition is!

Lots of Love

Nic x
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Liz Pidgley
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PostSubject: Re: Emily Update   Wed 15 Oct 2008, 9:54 am

Hi Hayley,

Im so glad Emily is able to be nearer to you in Swindon now.
I remember when I saw Aimee for the first time 'tubeless' and its as you describe - a 'proper baby'.
It sounds as though all 3 of your children are very strong willed! (So advance good luck for toddlerdom!)

Both you & Simon are showing such courage & commitment to both Oliver & Emily, one day they will look back & say how lucky they are to have you.

I hope the good news continues.
Warmest Wishes
Liz

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