From: Lea Coleman <leannec72@...>
Subject: Re: [as_ap] Re: Welcome Vanessa
To: as_ap@...
Received: Wednesday, 20 August, 2008, 12:19 AM

Vanessa, I had a bit of a funny last few weeks not really realising (but suspecting all along) that my pregnancy would end sooner than anticipated.  I tried so hard to make very moment with Ben safely in my tummy count, but secretly praying that nature would take it's course and I wouldn't have to walk into hospital and have my planned c-section... I just didn't think I'd be able to step through those doors by choice knowing it would be hello & goodbye.

 

The time leading up to giving birth to a child you know won't survive is so full of strange things isn't it, planning a birth and a funeral just shouldn't go hand in hand, yet for so many of us, it's been a sad reality.  I will never forget the day I finally decided to take the step into the funeral directors, somehow I had thought it wise to go alone....I was on my way there when my mother suggested she come too, I am SO glad she did.  It was wonderful to have her there when I collapsed into a fit of tears when the lovely funeral home lady left us alone for a moment.  I felt so angry having to be there, my big full belly was full of life, how could I be planning a funeral for a child I loved and wanted so dearly?  That moment hurt so badly, I will be there in spirit with you when you go to make funeral arrangments for Matthew.

 

But having mum there, as I said, was a god send.  She knew all my desires for Ben's funeral (my hubby had thrown his hands up in the air about it and decided he was the last person who should be making these choices) and when I was stuck in Brisbane in bed far from home and unable to make the last minute arrangements my poor darling mum stepped in and took over.  How that woman did it so well is beyond me, she was going back and forth to visit with myself and Nara in hospital nearly 200km away almost daily and still she got the funeral arranged, and organised a wake somehow! 

 

And seeing our priest, well that's another thing I planned to do alone, and in the end I did, and that was good.  Alistair, my DH was in a sort of denial state in may ways himself, but being a completely angry at God man during this stage (and still) he wanted no part of chats with priests!  I found speaking with Father Colin so soothing, he really helped me organise the music when I couldn't choose, he made it all so easy on me and when I still hadn't arranged it and the twins came early he just helped my mum by taking it into his own hands and it was a beautiful farewell to Ben.

 

I was so lucky that some caring online friends of mine organised to have castings made of Ben's hands and feet, this framed casting has become my most prized possession, I can't recommend enough having this done.  The lady who did it came to the funeral home to do it, but I would even recommend it being done sooner if possible.  I also recommend you arrange a photographer if you can!  Ask your hospital if there is anyone in the area who specialises in capturing precious memories in such circumstances. ..if you have no luck please come back and ask me to look into it as I think I know someone who can put you in touch but will have to seriously jog my memory (somehow).

 

If you do get some castings, I strongly suggest you have extras made, I regret not realising this could be done as I know a woman who did it and loves to sit and hold one of the dear little castings of her son's hand when she's down....I'd like that for myself, so of course I'd like it for you!

 

Do you  have a lot of photos of your belly?  I just LOVE my belly photos, they remind me of happy days when I could feel Ben moving inside me, oh that memory is a joy even though at the time I looked like a sack full of angry cats was struggling to get out of my tummy with two sets of busy arms and legs going at it! 

 

Hmmm, another thing I regret is not having any video taken of Ben's arrival into this world, or his short but memorable life.  Oh how I wish that this had been considered! 

 

My silly husband also forgot (ok he was a bit stressed he's forgiven) to bring in the bag full of clothes for Ben, hats rugs etc, so we only have photos of him at hospital in the dorky hospital clothes and bunny rug, a big regret, so make sure you have something precious and special for Matthew to wear if that's what you want on hand, let the staff know beforehand exactly what you would like him dressed in if you don't plan on dressing him yourselves.

 

Having had an emergency c-sect I was well out of it, and beside myself with grief and concern for my little girl Nara who was in NICU battling away....it was such a hectic time and neither of us really comprehended how important those precious minutes with our son really were as we came to grips with the emergency delivery and loss....please make all your wishes known and ask the hospital staff to see to it that you are treated carefully after the delivery of your precious son.  There is no way of knowing how long you will have him with you, you hear stories of people's anen babies living for weeks, and yes it can me so, or mere minutes but that time means the world to you and your son, so don't settle for anything but what you want it to be.

 

After you give birth you will be given as much time as you need to spend with Matthew..... but the time will eventually come to say goodbye. It might be a good idea to consider whether youw ill have a viewing at the funeral home before the funeral, we did, we had time to take some beautiful photos and we were all looking a darn sight better than we were in the wee hours after Ben & Nara's birth I tell you....even Ben looked wonderful, all cleaned up and dressed to perfection!

 

Ask the hospital if they can place you away from mother's with babies after the birth, I was placed at the far end of a nearly disused ward basically, it was wonderful and only had a baby near me on the first night (yes, that was very, very hard).  Ask the staff to place a butterfly sticker at your door to symbolise your loss, ensure that they know all staff are to be briefed on your situation before seeing you just in case casual staff come on and put their foot in it, it happens, it happened to me and it hurt. 

 

above all else, remember that you are giving birth to Matthew, a beautiful baby who will always be your son.  Let people know what you think you may want to have happen re visitors etc, but let people know you may change your mind and perhaps allocate a person as your spokesperson for people to check with before they contact you.

 

Often people hurt us by saying nothing rather than saying the wrong thing.  I know many people failed to acknowledge Ben's birth when they wrote a card congratulating us on Nara's arrival.  I tried to let people know how proud I was that Ben was coming.  The cards and gifts I got acknowledging him are so precious.... .if you want congratualtions cards and flowers (hey you will deserve them!  you're having a baby!!!!) let people know, or expect to get sombre sad sorry cards.  Your friends and family will be questioning what the heck to do right now, and when Matthew arrives you'll have people all in a tizz about what to do and say, you can help them now by telling them.

 

Sorry if all this sounds a bit strange, it's pouring out of me as I remember the good/bad & ugly things that happened or didn't happen after I had Ben & Nara.  None of this is fair, it shouldn't be normal but you know what, it's my normal now and if I can help you by sharing things candidly I'm going to try.

 

Please ask any questions you have, nothing is taboo or out of line in my opinion, if you are unsure, feel free to contact me away from the group on email or facebook...or I'll give you my phone number and we'll talk.

 

Best get to bed, sorry for the marathon message.

 

Lea xxxxxx

 

 

Lea xxxxxx

Mum to Sage, Nara, angel baby ~Ben~ and rainbow baby Arden

Give sorrow words; the grief that does not speak whispers the o'er-fraught heart and bids it break.  ~William Shakespeare

 

----- Original Message ----
From: Chris & Vanessa Murphy <chrisandvanessamurp hy@yahoo. com.au>
To: as_ap@yahoogroups. com.au
Sent: Tuesday, 19 August, 2008 8:32:25 PM
Subject: Re: [as_ap] Re: Welcome Vanessa

Hi everyone, Just wanted to update you all on where I'm at. Less than 4 weeks now until Matthew will be born. It is all a bit daunting, but I am finding enough to do to keep myself very busy, and have to stop myself from doing too much and rest! Had a big week last week with our last ultrasound appointment with specialists in Newcastle, an appointment with a senior midwife at Maitland hospital (where Matthew will be born) and talks with our church pastor and funeral director about the funeral. All a bit much actually for one week....My husband is still finding it very hard to have the mental energy to go through all these things which I understand. I am not working any more, so have more mental space to think about things. I'd be interested to talk to some of you more about your experiences of your baby's births and deaths and how you coped with having a funeral so soon after having a baby (if that was the case). Pettina, I'd still like to meet you if possible, but I know that you are pregnant yourself, and if it's all too much I completely understand. I sent an email to the other email address you gave me, but wasn't sure if that was still current. Lea, I have found you on facebook (I think!) and requested you as a friend so I can find the group. Sounds like a good way to network. Any "advice" or thoughts you have on this final stage would be appreciated! Vanessa --- On Fri, 18/7/08, pettinabeves <pettinabeves@ yahoo.com. au> wrote: From: pettinabeves <pettinabeves@ yahoo.com. au> Subject: [as_ap] Re: Welcome Vanessa To: as_ap@yahoogroups. com.au Received: Friday, 18 July, 2008, 10:32 AM Vanessa Im sorry that the week has been soo difficult for you and your hubby. How did Annabelle go with it all? I remember that John and i always had different reactions as well though when Mercy was born its like there was no defect, just our sweet baby. Also her head looked nowhere near as bad as the ultrasounds made it look. I think however during our pregnancy it was more John who held strong but after she was here he struggled hugely whilst i held together without any worries. It amazes me that we swap paths constantly on this emotional rollercoaster so that anyone time we are held by the other. It sounds to me like you are doing an amazing job walking this together. Hope to hear from you soon. Pettina --- In as_ap@yahoogroups. com.au, Chris & Vanessa Murphy <chrisandvanessamur phy@...> wrote: > > Hi Pettina, > Thanks for asking - it has been a difficult week. The scan was OK - Matthew is growing OK, but at the moment is breech, and my amniotic fluid levels are fine. The interesting part was that my reaction this time and that of my husband were very different. I knew that we would grieve differently, and I guess that's what is happening. When we had the 19 week scan, I found it quite distressing to see the baby's head and be hit with the reality of his appearance. Chris on the other hand was quite interested and didn't mind so much. The next scan we had we couldn't actually see the head because he was rammed down in my pelvis - so we have a photo on our fridge of Matthew's chin, mouth and nose and nothing else! Chris loves this photo and so do I. This scan we got what I thought were some really cute pictures of his whole face, but they do show the point where his head ends, and this Chris found hard to see this time. He much prefers the photo we have on the > fridge, which is fair enough. He's been feeling quite down about the whole thing this last few weeks and is prone to depression anyway. It is so hard to see him go through this. Today I came home early from work, cause I just felt teary all day and paralysed - I couldn't concentrate to get anything done, and I have plenty to do and only 4 weeks left before my leave. > Thankfully a mate of Chris' rang this afternoon and they've gone out for dinner tonight -  I hope that they can talk about things, because I know he is craving a friend to talk to. > Vanessa >   > > --- On Mon, 14/7/08, pettinabeves <pettinabeves@ ...> wrote: > > From: pettinabeves <pettinabeves@ ...> > Subject: [as_ap] Re: Welcome Vanessa > To: as_ap@yahoogroups. com.au > Received: Monday, 14 July, 2008, 5:32 PM > > > > > > > vANESSA > how did your scan go??? > > --- In as_ap@yahoogroups. com.au, "pettinabeves" <pettinabeves@ ...> > wrote: > > > > Vanessa > > > > I will be praying for you and your family tomorrow as you see your > > little man again. > > Would love to meet up whenever you are ready. Im sure the girls > > would enjoy a play as well. My personal email adress is > > pettles8@ > > > > --- In as_ap@yahoogroups. com.au, Chris & Vanessa Murphy > > <chrisandvanessamur phy@> wrote: > > > > > > HI Pettina & Lea, > > > Thank you for your lovely messages to me - they meant a lot. > > > I have found it very important lately to search out stories of > > other women who have been through anencephaly & understand the > > variety of experiences women have. > > > We have another ultrasound to "see" Matthew tomorrow. I'm really > > looking forward to it and hope that he is in a good position to > see > > him. We are taking Anabelle with us this time too. > > > Pettina, I would like to meet you if you are comfortable with > > that. So, perhaps we could email further about that if you like. > > > Thanks, > > > Vanessa > > > > > > > > > --- On Tue, 1/7/08, pettinabeves <pettinabeves@ > wrote: > > > > > > From: pettinabeves <pettinabeves@ > > > > Subject: [as_ap] Re: Welcome Vanessa > > > To: as_ap@yahoogroups. com.au > > > Received: Tuesday, 1 July, 2008, 4:43 PM > > > > > > > > > > > > > > > > > > > > > Vanessa > > > > > > Wow.. Our stories sound so similiar. I ilive on the central > Coast > > > and at 6 weeks was told I had most likely miscarried our > precious > > > Mercy Grace but 2 weeks later there her heart beat was. After 3 > > > weeks they checked to make sure the bleed was clearing and i > found > > > out that my daughter had anencephaly. I was 11.5 weeks at the > > time. > > > With a 6 month old at home. > > > My husband and i are also christians tho we kept the news to > > ourself > > > as it was late Friday and we had to have a level 2 scan on the > > > Monday. The anencephaly was confirmed and we were told that we > HAD > > > to abort. Luckily we had the weekend as my husband and i were > > unsure > > > of this decision. When then went home to think it through and > were > > > given a week so the EASY termination option could still be done. > > Wow > > > are some doctors horrid. > > > We decided that we would be best keeping her as long as we > > possibly > > > could. > > > At the 19 week scan we discovered we were having another little > > > girl. Mercy Grace. > > > At 38 weeks 4 days i had a selective induction. Luckily one lot > of > > > gel was all i needed to put me in full labour. > > > On Monday 24th September 2007 our beautiful Mercy Grace was born > > > alive and weighing a whole 4 pounds 5 ounces. > > > We were even further blessed when our beautiful daughter carried > > on > > > living for another 5 weeks 4 days 18.5 hours. > > > Isabella was 13 months when Mercy Grace was born. so a bit > younger > > > than what you are experiencing so was never really explained to > > her > > > that Mercy was sick tho she knew i was pregnant and would > > frequently > > > feed her the bottle thru my belly button. > > > To this day she kisses Mercys photos and cuddles her bear tight. > > > They formed a lovely bond. > > > > > > You appear to live so close so if you would like to catch up > > please > > > let me know though dont feel any pressure. > > > > > > Pettina > > > > > > --- In as_ap@yahoogroups. com.au, Chris & Vanessa Murphy > > > <chrisandvanessamur phy@> wrote: > > > > > > > > Hi everyone, > > > >   > > > > It has been very interesting to read of your experiences at > the > > > moment, especially those going through a subsequent pregnancy > and > > > all the anxiety that this brings. I’m not yet at that > > point, but > > > it is good to know there are people out there who understand > what > > > I’m going through now and will go through in the future. > > > >   > > > > I wanted to share a bit more about myself with you all. I am > > > currently 29 weeks pregnant with a baby boy, Matthew who is > > > anencephalic. We found out at the 12 week scan, and of course > were > > > shocked and upset about the diagnosis. I had been taking folate > > and > > > there was no family history or anything like that for us to even > > > suspect that there may be a problem. In fact during the > > ultrasound, > > > I told the sonographer how all I really wanted to see was that > the > > > heart was beating, and what a relief to see that. She completed > > the > > > scan before sending the radiographer in, who told us they had > > > detected an abnormality and we would have to go and see our GP > > about > > > it. What a terrible 30 or 40 minutes of waiting to find out what > > was > > > wrong! It makes me feel teary and a bit sick just recalling the > > fear > > > that I felt at that moment. > > > >   > > > > Anyway, our GP was lovely and took all the time we needed, > even > > > though it was after 5pm and she had a waiting room full of > people > > > yet to see. We found the decision to continue the pregnancy an > > easy > > > one, and my husband (Chris) and I were both in agreement on this > > > one, thankfully. We are both Christians, and felt that it was > not > > > our decision as to how long our baby should live, and we were > > > prepared to go through with the pregnancy as long as it would > > > happen. This baby, which we found out at 19 weeks is a boy (now > > > called Matthew) is a precious member of our family, no matter > how > > > short his life is, and we thank God for giving us Matthew to > look > > > after for this time. > > > >   > > > > We have had a lot of support from our friends (mostly from our > > > church â€Å"family�) and our own families too, although > > they are > > > facing their own grief through this, I guess, and some of them > > > don’t live close by, which has made communication > > difficult. One > > > of our biggest challenges has been talking to our 2 year old > > > daughter Anabelle (almost 2 years 5 months) about Matthew and > > trying > > > to give her little bits of information about him so her > > expectations > > > will not be too far off when it comes to the birth/afterwards. > She > > > is very clued up about the fact that Mummy is having a baby, and > > has > > > been from very early on (before the scan), so there has been no > > > hiding the fact. She says things now like â€Å"Belle love > > Matthew�, > > > â€Å"Matthew’s nice� and she kisses my belly and > > says hello to > > > him. I would be interested to hear of any of your experiences > with > > > older siblings and how you explained things to them and > especially > > > anyone who may have had 2-3 year old > > > > children at the time. > > > >   > > > > Today we had an appointment with the head paediatrician at > > > Maitland hospital, which is where we will be having Matthew. He > > was > > > really nice and answered all our questions, although we may not > > see > > > him again â€" it is hard to predict what we/Matthew might > need, > > but > > > at least we know they are there if we want to call on them. > > > >   > > > > I’ll leave this email at that â€" I look forward to > > being able > > > to â€Å"type up� my feelings again and share them with > > you - this > > > has been good for me. > > > >   > > > > Thanks for your support, > > > > Love Vanessa > > > > > > > > --- On Tue, 27/5/08, Lea <leannec72@ ..> wrote: > > > > > > > > From: Lea <leannec72@ ..> > > > > Subject: [as_ap] Welcome Vanessa > > > > To: as_ap@yahoogroups. com.au > > > > Received: Tuesday, 27 May, 2008, 11:32 PM > > > > > > > > > > > > > > > > > > > > > > > > > > > > Vanessa, welcome to AS~AP > > > > > > > > I am so sad to read that you are needing the support of our > > group > > > > during your pregnancy, I dearly hope that you will find that > we > > > are > > > > able to give you good counsel as you wade through the ups and > > > downs > > > > of your emotions at this time. > > > > > > > > My name is Lea, I'm co-founder of the group. I gave birth to > my > > > twin > > > > son ~Ben~ and his sister Nara on 8 June 2006 at 34 weeks > > > gestation, > > > > ~Ben~ survived for 1 hour and 21 minutes and he passed away > > > > peacefully in his daddy's arms. > > > > > > > > We live in far northern NSW along with our eldest daughter > Sage, > > > Nara > > > > our surviving twin and our rainbow baby Arden. > > > > > > > > Please feel free to write and tell us all about > yourself...feel > > > free > > > > to ask as many questions and talk as much as you need to about > > > your > > > > feelings, that's what we're here for. > > > > > > > > If you feel you might like to talk to me on the phone, please > > send > > > me > > > > an email and I'll give you a buzz or vice versa. > > > > > > > > Lea xxxxxx > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > Get the name you always wanted with the new y7mail email > > > address. > > > > www.yahoo7.com. au/mail > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > Start at the new Yahoo!7 for a better online experience. > > www.yahoo7.com. au > > > > > > > > > > > > > > > > > > > > > > Start at the new Yahoo!7 for a better online experience. www.yahoo7.com. au >

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