a sad day.....

I had a sad day today. Last week I recieved a very odd letter from the hospital saying they had in their possession some of Connors "belongings". I was so shocked when I opened the letter and I stewed over it for a couple of days because I was so fearful of what they had. What on earth could they have had of Connors??? I asked Tim to ring the hospital. Nope, no way was he going to do it. So I waited a few days and rang them. Unfortunately at that precise time, Deacon and Isla decided to have a full on screaming match at each other, so I moved about the house trying to escape the noise only to have them follow me with in an inch of my butt at maximum volume. So I still had no idea what they had "in their possession"! She told me they would post it via registered mail. It arrived today. A small envelope. Now just to add, the last few weeks something had been bothering me. There was something I really wanted. I regretted not asking for an extra lock of Connors hair to put in my locket that my sister sent me the day of Connors funeral and also to put in a beautiful gift that a special friend sent me the other day. I already have a very small lock of his hair but it is sealed in a special frame. And I also wished I had've asked for his blue beanie they put on him when he was born. It just goes over and over in my mind and I can feel myself just wanting it more and more because it was his. He wore it and I just wish I could hold it tight and smell it. Anyway, when I opened the envelope there was a beautiful card done by the hospital with his name printed on the front of it. Inside the card was one of his hospital bands, we already had the others. There was a print of each hand and foot and another lock of hair. I didnt know what to do with myself. Sometimes I wonder if I have a little angel watching over me granting me small wishes, if there is his name is Connor! I desperately wanted another lock of his hair, and my wish was granted. Unfortunately there was no beanie in it and I am pretty sure it is well and truly gone now as they destroy them once worn. There were also 4 photos that they took after he had passed away. I wont go into details but they had fulfilled another of my little wishes. And I am so so grateful but really sad too. Because two days before Christmas I would rather be stroking my babies hair, looking at my babies tiny little hands and feet and taking a million photos of him. Instead I am looking at a tiny little packet with my babys "belongings" and feeling so so broken hearted.

Christmas is coming!

I love Christmas! But this year it means something totally different to me. While everyone is happy and looking forward to that day, I am not. Its another anniversary for me. It will be 11 weeks since Connor died and he would have been 11 weeks and 1 day old, and facing Connors first Christmas without him is going to be hell. Nobody can understand how much that hurts unless they too have lost a child. I dont think there are too many people that can say in the space of two weeks they had a baby, held their baby in their arms and watched it die, then recieved its birth certificate, death certificate and cremation certificate in the space of a week and then recieved their baby back in a tiny little urn the following week. I am dreading facing Christmas day and it doesnt matter to me where it is celebrated and who it is celebrated with because that day is still going to be overwhelmingly sad for me. I cant speak for anyone elses grief accept my own, so this is my grief and this is how I choose to word it. I dread waking up Christmas morning, I can feel the build up in my heart already and it feels so heavy with pain and anger. I cant change anything, and I know that Deacon and Isla will be so excited, and I am excited for them too. But I am also so sad for Connor because he suffered and he is not here. I'm sad for Tim because I know he misses him. What would life have been like with two little boys and a princess in the middle? We will never know! I feel so sad for Deacon and Isla because they dont have their little brother, they both love babies and I know they are missing out. And yep I go back around in a circle again......its not fair, not fair at all! We were ripped off! Its not just the loss of our baby, its the loss of the hopes, the dreams and the expectations we had. I will smile for Deacon and Isla because I want them to be happy, but I know the whole day I will have that heavy heart, the lump in my throat and the tears and I dont want to spoil it for my kids, my husband or anybody else. I know they want to enjoy their day and I dont want to ruin for anybody else. I can feel it building as Christmas gets closer. It worsens everytime someone at the shops innocently says "have a nice christmas". The other day I went late night shopping without the kids and was waiting to pay for my groceries and the lady behind me was chatting away. I kept my conversation to a minimum, and I said I was enjoying some shopping time kid-free and she looked at the nappies in my trolley and asked "do you have little ones?" I just said yes and stopped there. I dont enter into any conversation with strangers because I dont want to end up with the well meaning comments "he's better off where he is?", "be grateful you have 2 healthy ones" or "it wasnt meant to be". They dont mean anything by it, its not said to be malicious but it still hurts. Its like a knife to my heart. Just as Christmas is. Some people have included Connors name on Christmas cards and others havent, and I understand that many people dont know what to say or do, and dont know how to react. I feel so so sad when I dont see his name on the cards, but I will always include his name when we send Christmas and birthday cards. Maybe its offensive to others when they see that we have written our dead childs name on their card, but to me I will always write his name, just as I will always write his name in the sand everytime I visit the beach. Its me, its who I am and just as I have to accept others for the way they are I hope that others will accept me, the new me for who I am. If people are upset by this or think I am being morbid then they do not truly know the pain we feel and fortunately for them, they will probably never know that pain nor understand it. People say to us that Connor only lived for one day, that too is like a knife to my heart. He didnt live for one day I had him from the moment he was created February 2009 (I'll spare you the date!) until the day he died 10:01pm on Friday the 9th of October. Then he continued to stay with me, for weeks afterwards when I experienced phantom kicking. My body thought he was still with me, and my mind and heart wanted him still there. Before people think I have gone crazy, it is a very real experience and also very common for mothers who have lost their young neonates. Then I think about him every minute of my day and also in my sleep. So I didnt have Connor for one day, I had him a whole lot more. I have had him for almost the entire year! And to me he is as much a part of my world as Deacon and Isla is, and always will be.

My Christmas wish is to skip Christmas day all together and wake up and its Boxing day. I will wake up, jump out of bed, pack up all the Christmas cards, decorations and the tree and begin to set up for another weekend of painting. It keeps me busy and the sense of achievement afterwards is amazing! And I love hearing Deacon say "Wow mum, you've done a good job". Its probably one of the few things I can control in our lives.

At the end of all this, I want to wish all family and friends to have the best Christmas you can and I hope that 2010 brings with it all that you hope for. We hope to be in touch with you in the New Year xxx

edited to add: I just want to re-iterate so that people do not get upset. In regards to Christmas cards, I am not finger pointing anybody for not including Connors name. Just as Christmas day draws near for us, recieving Christmas cards is a build up to the day. This year was a huge year for us. We had a baby, and our baby died. So to not see our new little family member on a Christmas card is so sad for us. We do also completely understand that it is not with intent or maliciousness that his name has not been included, more that people dont want to hurt or upset us in anyway. That we understand. I just hope that people are accepting when we include our angels name on cards that we send to others this Christmas and every other Christmas, and also when birthdays come around. Because he was, is and always will be part of our family. I just wanted to make that clear and re-iterate that, so not to offend anyone. And for those that have included his name, it is so treasured by both myself and Tim. We love nothing more than to see his name and to know that he has been acknowledged as part of our family.

Blessed!

I have spent the last 4 days moving furniture and painting and generally keeping busy. It all helps to keep my mind active and to not dwell on what should have been and what I dont have. During that time I have done an enormous amount of work and finally got rid of those tacky blue and yellow walls in the master bedroom. I can finally, after 6 years of living here, lay in bed in the mornings and not feel sick because the walls look so tacky. Anyway, during that time I have had so much time to think. I get angry, furious even at things that havent happened, support and love that hasnt been recieved. Then it occurred to me, I truly am blessed. Because the love and support you need can come from absolutely the most surprising places and I am thankful.

I have been a member of an online parenting forum for the last 3 & a half years, and those girls have given me so much support. They have been there from the beginning and listened to every single little whinge and whine I have had about my journey. They always know just the right words to say and have given me so much peace. They think of me when others dont and let me know just how much Connor means to them. I have made so many "real life" friends on this forum, ones I know that I will have for life. One of them drove across three states for two days just to give me a hug! I am so blessed to have her as a friend. Another one after she flew back from her holiday; she was in the car a day later and drove 800kms for a hug and a chat. She is another dear friend I am so blessed to have. Another one has driven over this week from the next state and we will catch up for the 3rd time in a year. I cant wait to catch up with her again, her support has been amazing especially during her own tough time. I am always thinking of her. Also the girls from the forum have all pitched in not once but 3 times for random acts of kindness to try and make our days a little brighter. I hope they know that their kindness really has done just that. The Wii gives Tim and I some time together; I love kicking his butt in bowling. And Deacon loves to play what he calls the flap flap game on the Wii Fit. And the boxing, I can channel all my anger and frustration and have made some mighty big knockouts. Might make a boxer out of me yet!

I am also blessed to know the girls from another forum who also rallied around and raised a massive $250 and donated to Heartkids in memory of Connor. They sent a huge bunch of balloons and a balloon each for Deacon and Isla which they both loved. Those balloons lasted for over 6 whole weeks! I am so blessed to have them as friends and that they were so touched by our little Connor that they did this. Thank-you girls, your continued love and support has meant so much.

Its been almost 10 weeks since Connors birth and almost 10 weeks since he died. And only just this Saturday I took down the cards that everyone sent. There were so many from our friends. Many were from my forum friends all over the country, most whom I have never even met in person. My grief counsellor who used to visit said a couple of times, "my goodness you have so many cards". I smiled at her and said a lot of those are from my forum friends. Thank-you, it means so much to know that you all care.

Then last week, just out of the blue, another beautiful forum friend sent me a message asking me had I checked my letterbox lately. Sure enough there was a card and a lovely gift in it from her. I was not expecting it at all and was such a huge surprise. Thank-you so much, you are so kind and have a heart of gold.

All of these beautiful ladies have, and they probably dont realise it, have taught me so much in my life. I wont get all philosophical but I see life in a different way now. I know I still have so much more to deal with, but when things get too much for me i think about them and everything they have done for me.

Then there is another angel mum who i met from the forum who has gone above and beyond to help me. Whilst it would be difficult for her to talk to me whilst dealing with the loss of her own beautiful little angel, she phones me on the mobile regularly to chat. I know that she is one person who I can talk to who really does know how I feel. I am so blessed to have her as a friend!

There are also others that I have to be thankful for. My sister! She has been there since day one. She has looked after the kids for us at the majority of our appointments, and still does! She was there when I was in hospital and there for us after Connor died. I am so thankful i have her and would be so lost without her. I am blessed to have her as my sister.


I am so lucky to have my neices. No they are not little girls, all adults in their mid-late 20's. One of them flew from Melbourne to stay with us and help us out the week of Connors funeral. Her presence in our house during that time made such a difference. She is a kind, caring individual who has a heart of gold, and I am so glad to have her as part of my family. My other 3 neices have also been amazing. i cherished thir visits when i was in hospital, and all the love and support that they have given me and still do. I am one blessed lucky Aunty!

I am very blessed that heartkids where able to put me in touch with two angel mums of CHD babies. Thank-you! It really does help to be able to talk to others and know that what you are experiencing is normal, at least normal for US angel mums anyway. It also helps knowing that I WILL survive this...somehow! Heartkids also blessed us with a FunFlight for Deacon and Tim. For us it meant we could get out of the house when we previously had not been out anywhere in several months except to the shops. It was hard for us also knowing that we were looking at surviving CHD kids and babies, but it was worth it because Deacon had a ball. Another thing that Heartkids did for us was give us some cash that we were to use for our trip to Melbourne with Connor, unfortuantely we didnt make it that far. Our social worker visited me in hospital the days after Connor died and gave me Connors box of things and in it was the envelope from Heartkids with the cash in a card saying they were sorry for our loss and that the cash was for us to use in Melbourne but they wanted us to still have it. So we put the money towards a beautiful memorial statue for our garden. We also then bought a garden seat so we can sit by it, and will down the track put a memorial plaque on the statue when we can. We feel very blessed that Heartkids did do this for us, so at Connors funeral we asked family and friends to donate to Heartkids in memory of Connor.

I also have to say we are truly blessed to have a friend that Tim knows through his work. She has been so supportive of Tim and also myself, and has even looked after the kids for us while we went bed shopping. Thank-you, shopping for beds minus children is so much easier. Plus Deacon still hasnt stopped talking about his new little friends he has made.

I am also blessed to have my two children. No its not like what people say "be thankful you have two healthy children", its just not like that at all. But without them I know I would be well and truly insane by now. They keep me so busy and make me laugh. They are my sunshine and make my life go on. Especially moments like now. Whilst i am sitting here Isla has found it is a huge joke to delicately lick me on the arm!!! Hilarious I know......NOT!

And I am hoping that my life will be blessed with Rainbows. Hope is something to look forward to and keeps our dreams alive. I will never give up hope.

I know that there is so much more I have been blessed with and am thankful for, but will have to do another post later...this one has turned into an epic.
The photos above are just somethings we have done lately. The first one, we wrote Connors name in the sand the day we picked up his ashes from the funeral home. The second one was the kids having fun at the beach that day. The third one was an attempt to get some christmas photos but I gave up, my children sadly dont perform for the camera. And the last one is of Deacon on his Heartkids Funflight.

A Checklist for Relatives and Friends

I havent updated the blog in a little while. Life has been full of very few ups and many downs lately, but something I wanted our family and friends to read is a checklist from SANDS designed to help family and friends support grieving parents. I truly hope this helps some of our family and friends understand a little of what we are going through, our reactions are apparently normal and we still need your love and support!

Relatives and Friends Checklist

Help by sharing the baby with the parents. If they call the baby by name they might like you to as well.
Let your sorrow show. This is appreciated by the parents and can open the door for the sharing of feelings. Being receptive to the parents' need to talk about the baby can be important for everyone.

Avoid platitudes. Words like: 'you can always have another one,' 'you are lucky to have other children', 'you'll feel better when,' 'time heals' and ' it was for the best' are all probably true and well meant but of no help at all and may in some cases be detrimental. This baby is not replaceable.
Help by trying to act normally, asking questions about things you don't know or understand. Still visit the hospital, send flowers, etc. Little things like this help make the parents to feel they are normal and also supported in their grieving. Parents need recognition of the fact and that they had a baby. Special difficulty may arise if the baby was one of twins. The parents are expected to be extra happy for their live child. Few people realize that they may have overriding grief for the twin who has died.

Don't expect the mother to be physically well in a few days.

For example, her breasts will produce milk for perhaps some weeks after the birth. The absence of a baby often entices people to believe that she has fully recovered and is ready to return to normal activities. The mother will need time to recover physically from the pregnancy and birth of the baby whether the baby is here or not.

Don't foist constant company on either parent. There is commonly a need for some 'personal' space and opportunity to be alone now and again.
Don't push other babies under the nose of either parent either physically or verbally. If you have a young baby don't be offended if the bereaved mother shows no interest or declines to hold it. On the other hand don't go out of your way to hide your baby from her - act normally.

Help by admitting that you are also feeling you are also feeling unsure and perhaps don't know how to give support. This reinforces the fact that you are also new to this situation and shows that you care and want to try and understand.

Be sympathetic. It is sad when someone dies. This baby was real and the parents need time to grieve. Remember that the father's loss is equally real and stressful. Father's need to resolve their grief in their own way.

Allow time to grieve. Let the parents talk and cry on and on....try to be a good listener. Some mothers and fathers need a long time to recover. It may take many years. Some people make the mistake of allowing what they think is a reasonable grieving time and then expect parents to return to a normal life. This is rarely so. Remember everyone is different, things may never be the same for those parents again. Even after another child, parents will still grieve for the baby who has died.

Anniversaries. Special days - Father's day, Mother's day, Christmas etc. will remind parents of what might have been. Anniversary dates of the baby's birth, death and due date will be difficult days for most parents. Offer support on these days. A phone call or a visit will reassure the parents that you also remember the importance of this day.

Offer help but don't be offended if this is refused.

Let the parents arrange the funeral, put away baby clothing and handle the newspaper insertion, as they wish. The parents need to be in charge of these tasks as a part of the grieving process. Be there and be supportive but don't take over.

Ask whether/when they would like assistance with the housework, shopping or looking after other children, grieving is a high energy activity.
If other people know about the baby's death, the return to household duties and workplace can be less stressful. Ask whether you can help by letting casual acquaintances in the workplace, shops and schools know about the baby's death.

Respect and support the parents decisions.

The decision as to whether or when they will have another baby rests with the parents. Subsequent pregnancies may cause a re-emergence of emotions and parents need special understanding at this time.

If and when a new baby is born do not expect the parents to forget this baby. No matter how long after the baby's death they will remember and still think about him or her.

More bad days

Each year in Australia approximately 58,000 couples experience reproductive loss:
About 55,000 experience early pregnancy loss, 1,750 babies are stillborn
and about 900 babies die in the first twenty-eight days after birth….... Sadly Connor is one of those 900.

Today has been a particularly hard day. I knew that it would happen one day, I just never expected it to happen so soon. I went to the shops to grab a few things and I stood in front of the gluten free section in the supermarket and a lady stopped next to me and screamed at her child "Connor, just shut up!" My stomach just turned upside down and I wanted to scream and cry all at once. I couldnt believe her little boy was called Connor and I couldnt believe she was shouting at him. Didnt she realise how lucky she was to have her Connor? My shopping trip was cut very short and I left without grabbing what I needed. So I come home and whilst the kids are eating their lunch I hop on the forums and found a post about the woman who's 3 children were murdered by her x-partner last year. She has just had a new baby, which is so wonderful and really must be a little bit of light for her at the end of what must seem a very very dark tunnel. Everybody deserves happiness. But her precious new arrival is a boy......and she named him Connor! So, its then that I decide to sit down and have a flick through the new book I bought this morning. Its called "Small Miracles" by the Bonnie Babes Foundation and its about infertility, miscarriage, stillbirth and neonatal loss. I opened the book to page 142 and start reading and I saw Robert Harvery the AFL player and his wife had a story in there. I got to the 3rd line and it reads "Their first child Connor....". I think my little man is here today and trying to tell me something. I miss him terribly and nobody can ever imagine the pain that is felt when you lose a child, unless they have been there themselves. It is the most empty feeling you will ever feel in your life. And not a minute goes by in my day when I am reminded that he is not here with us. I guess moments like these are just my little man telling me that he is still with me. Other people have their babies in prams or slings walking around the shops, but mine is a precious little angel held close to my heart.

Reflections

This is the video that they played at Connors Funeral for us. We had it professionally done and we love it! We think its just beautiful and shows how perfect our beautiful little Connor really is!

Baaaah.....Humbug!!!!

As they say, life goes on. And unfortunately it has whether I like it too or not. And now Christmas is coming! With that comes all the little preparations and traditions that you do every single year. I love christmas, but this year I feel very different about it. But I still have to do it for my kids. So Friday we ventured out and did the annual Christmas photo, and I was rather annoyed to be in yet ANOTHER photo. Unfortunately for my poor sister, she got roped into it too! Both kids threw a hissy fit and wouldnt have a bar of Santa. Sad thing was he looked like a nice old Santa, as in he didnt look fake. But oh well!!!! There goes another years Santa photo. And by the way, yes our hair looks funny in the photo. It was 40 degrees outside and poor Santa needed a fan blowing on him to keep cool and it blew our hair all out of place.

Then yesterday I went and bought a new Christmas Tree to replace the scrawny one we have had for the past 11 years and some new decorations. The arvo was spent assembling it and decorating it. For each of my kids I have bought them a "Babys First Christmas" decoration to hang on the tree which you can insert a photo. I have always put a photo of the kids wearing a little christmas hat that was taken at the end of their first year and written their name and age on the back of the decoration. So this year......we had another baby and I was not going to forget him. So when I was out at the shops I managed to find another of those decorations and yesterday I printed off a photo of Connor and put inside the decoration and wrote his details on the back. The saddest thing was I couldnt find a photo to fit the frame. I eventually found one to fit as best I could make it, but it has brought up so many thoughts and emotions. And now I am back to worrying about Christmas Day. Its not a day that I am going to let people forget about our little baby. He should have been 11 weeks old. He would have been smiling, rolling and he would have been quite a big boy by then. I cant face a day with family where he is just swept under the carpet because people are frightened of upsetting us. I'm not sure why people think that crying is seen as losing the plot or not coping. Our counsellors tell us its healthy for us to cry and we WANT to talk about our baby, but if it upsets others and they dont want us to talk about Connor in front of them or their children because their children dont know he even existed......then I feel extremely sad. They have done our little boy an injustice, and they have done us an injustice. He was real, he existed, he lived, he breathed, he fought. He was not a miscarriage, he was not a stillbirth, he was born a living breathing baby and it doesnt matter how long he lived for, he was still a real baby. He was here!

This Christmas I am trying to think of ways that we can remember our little Connor. I am thinking of getting the kids a helium balloon each and letting them release it for Connor. Also maybe a special candle and light it while we do the presents. I still have Connors present on layby with the other kids presents. I have tossed and turned whether I return it or keep it or give it away to someone else. I'm thinking I will keep it and let the kids open it on Christmas day. I'm still not sure. But whatever we do it will be special and something we will do every year, every Christmas.

Its so sad that a death can really bring out the worst and the best of people because those whom I thought would support us have let us down immensely and then we have been surprised by the love and support of people we barely know. Support can come from places you would never expect. I have been blessed with some very special friends who I will never forget their love, support and kind words. There are a number of others as well that I would love to mention who have helped us and made our days a little easier. I hope they know how much we appreciate them. They are the ones who love to hear about Connor and dont judge us for our decisions and choices, they dont try to change the subject, and they say his name freely without fear of hurting us. I know I have posted this before, but I love it and its so true.

The mention of my child's name,
May bring tears to my eyes,
But never fails
To bring music to my ears.

If you are really my friend
Let me hear the beautiful
Music of his name.
It soothes my broken heart
And sings to my soul.

EDD

EDD. Today was my EDD otherwise known as "Estimated Due Date". Connor should have been due to arrive today....in the perfect world! But as we all know.........its far from a perfect world isnt it??? His due date was the 12th of November 2009. It was a sad day because nobody around us acknowledged or remembered that today I should have been 40 weeks pregnant, or if everything went to plan, if Connor was healthy, I would have been induced a couple of days ago and I would have been enjoying a healthy happy baby. I wonder how many other firsts the people around us will forget, or not acknowledge because they dont know what to say or are frightened of upsetting us? I found something today on my quest to find more answers. It rings so true.

If you don't mention my baby's name
If you don't acknowledge his existence
If you don't say that you miss him too
If you don't mention him in conversation or
change the subject when I do.
If you don't love and acknowledge my precious baby who is a part of me
Who I love
Who I acknowledge
Who I miss
Whose absence I cope with every day and will never accept
Then you must understand that I will come to the conclusion that
you don't love me
because you see it is not possible for you to love me and not to love my baby.

So today I spent my morning at a grief counselling group with SIDS & Kids. I initially wasnt going to go, but I thought why not spend the morning with other people who are just as alien in this wide world as I am. I would probably have only sat around home feeling sorry for myself up to my arm pitts in dirty washing. SIDS & Kids are great because with all of the education they have done with SIDS the numbers of SIDS deaths have reduced significantly allowing them to also deal with neonatal and infant deaths not just from SIDS. I have had a counsellor from SIDS visiting me regularly and she has been great. So I get to the group today and apart from the counsellor there were 2 other mums there. They were fantastic to talk to, but at the end of the session I asked if they were going to hold them regularly and the counsellor said she didnt know she resigned from her position just this week and was moving on! Crap again!!! Seems I make everyone who comes to help me, quit their jobs! The other two ladies have said they will keep in touch and I got their details and we are planning on meeting for a coffee some time. But damn.....I need to find someone else I can talk with. One of the mums mentioned another group called SANDS and another called Teddy Love Club. TLC I already knew a little about but SANDS I knew nothing. So I've left my details and we'll see what happens in regards to getting into a group there. The good thing is that their groups are at night so Tim will be able to come along....just so he realises he is not an alien too!

So another day, another milestone date is over with and as it leaves it brings with it another one. Connor should have been 5 weeks tonight, and tomorrow night it will also be 5 weeks that he passed away. I wonder if Thursday and Friday nights will ever get any easier for me. Or will I always say Connor should have been this old today....its been this long since Connor passed away. I have hated Thursdays for months and ironically I still hate them now because its always going to be his anniversary. Well its not that I actually hate them, its that I feel sad that he was born on that day that i hated so much and now I am grieving because he is not here.

Tomorrow I have decided to do something either fun or torturous for the kids. I'll let you know tomorrow which one it is. But we are off to see Santa and have the kids annual Christmas photo with Santa. I'll be damned if I am sitting on that old blokes lap this year! I'll warn the photographer to get their aim straight while I run and I'll plop the kids on his lap and yell "shoot". Or maybe I should just say "now", shoot might not be a good idea in the middle of a crowded shopping mall. But I will be positive we are getting happy smiling kids this year, again I just wish we had our 3rd child there. I've already told Deacon he HAS to tell Santa exactly what he wants or Santa wont come to visit and the only way you can do that is to sit on his lap and smile sweetly for the camera! Dont you just love bribery? Hmmmm...well see what happens tomorrow. Maybe its child number 2 that will have the screaming fit this year LOL

Bad Days..........

We have'nt had too many bad days until now. That protective bubble seems to be wearing off. The bad days seem to happen when people make their comments. I've tried very hard to ignore them, or shut them out but it just doesnt work anymore. It really hurts! The comments that hurt the most:
- them "Its all over now" - me: "for you maybe!"
- them "It wasnt meant to be" - me:"right and you know"
- them "He's better off" - me:"why??? Are we bad parents?"
Then there are the times that people make comparisons to their healthy child and say that they feel "guilty" because their child is still here and ours isnt. Do people really think that I sit around and have time to think about why their child is here and mine isnt??? Firstly, because Tim, Deacon, Isla and myself are THE ones who went through this I dont want to know how it has affected anyone else. If I cant support myself then how can I support someone else who says they are grieving? Please do not cry on my shoulder when I am not strong enough to stand. I am the one who needs the shoulder to cry on!!! I have been making milestones in being able to meet with other friends who are pregnant and have new babies. Those friends have been super supportive and very sensitive, therefore making it comfortable for me to be able to visit them. I try to see it as that is "their" child, "their" pregnancy. It has nothing to do with me, and I am truly happy for them. I've had my pregnancy and I have had my baby....remember??? He was born on the 8th of October 2009 and his name was Connor Maxwell Gore! When you look at someone elses child or baby it looks like them, therefore my children look like me. I have that bond or connection with my own that I dont with someone elses. Thats how I get through it. So when people say things that they feel "guilty". Dont! I have already reached that milestone, or atleast tried to, where I am making myself feel comfortable in being able to see pregnant women, new babys and go out in public where every second person is either pregnant or has a baby. Those sorts of references that people make to my face only make things much worse for me. Its like there is one step forward and two steps backwards.
Then there are the other things that set off the bad days. The fact that help dies down over time. Our Social Worker from the hospital that we have had for this whole journey has quit due to health reasons. She was like a security blanket for me, and now she is gone! Who am I going to talk to that understands me now? There arent too many people that dont treat you like your an alien out there. We still see a pshychiatrist but I suspect that today may well be our last appointment. Getting babysitters for the kids is a nightmare. We get tired of having to beg and grovel for some one to watch the kids while we have counselling. Its all just getting too hard and I watch while others line up for babysitting just so they can have a piss up! Surely its more important to help a grieving family? Maybe not!
Then there is Christmas! Despite what others think.....it will STILL be Connor's first christmas. I am still going to buy a "Baby's First Christmas 2009" bauble for the tree and put Connors name on it as I have done with Deacon & Isla. But Christmas Day??? We are staying home in our protective bubble this year. Every year our day is split between the two families. But this year, there is no way that I can face Christmas Day when I know that not one person will mention Connors name, whether it be for fear of making me cry or simply because they dont care, or have forgotten him already. Something the minister at Connors funeral read out:

The mention of my child's name,
May bring tears to my eyes,
But never fails
To bring music to my ears.

If you are really my friend
Let me hear the beautiful
Music of his name.
It soothes my broken heart
And sings to my soul.

Then the minister said to family and friends to not stop talking about Connor, because we will always be thinking about the firsts - first christmas, first birthday, every birthday, his due date (which would have been tomorrow the 12th of November) and other days like first day of kindy, and first day of school. They will be significant days for us and talking about Connor, as the poem says "soothes my broken heart and sings to my soul". People dont seem to want to talk about it because if I cry its seen as falling apart at the seems, or not coping, and they dont want to "upset me" in anyway. And family dont want me to cry around their children for fear that I will upset their kids. It hurts when people judge us for our choice in telling Deacon and Isla what happened to their little brother, maybe I should judge them for choosing to NOT tell their children about what happened to Connor??? How can I NOT tell Deacon. He's not stupid! He asked why mummy had a big tummy, he would ask every day if the baby was awake or sleeping and if he could feel the baby moving. He would ask if he could kiss the baby. And it was only right that Deacon and Isla got to meet Connor and also to say goodbye to thier little brother. If they didnt get to say goodbye, what confusion that would have been for them. It was hard enough when I went to my friends house and her baby was lying in the bouncer on the floor and Deacon asked "whats that?" when he saw the baby. I told him that it was that ladys baby. He looked rather confused when he asked, but when I told him that it was somone elses baby and not ours he was happy with that. So it not only affects me, but it affects our kids too. So when you choose to judge me for my choices, dont tell me.....perhaps it is better to keep it to yourself. As they say, if you dont have anything nice to say then please, dont say it at all.
Something that I gave to family to read was a little booklet from SIDS & kids. I was hoping that family might read it and therefore be able to understand what we are going through and be able to better support us. For those who want to read it, here is the link: http://www.sidsandkids.org/pdf/SU3028-difference.pdf
Now just a little disclaimer: apologies if this has offended anyone, I desperately needed to get that off my chest before I either exploded or imploded. And to be absolutely honest I wouldnt need to have this post if I felt that all was ok. All I can do is hope and pray that we have better days to come and that the sun will shine through and light up our dark protective bubble.

Tuesday 3rd of November 2009

Tuesday 3rd of November

Today was a significant day for us. We went back to see the cardiologist at the Womens and Childrens Hospital and debriefed on what happened with Connor. It was a chance for us to ask questions and also to find out the results of the genetic testing. It’s a big thing to be able to go back to the hospital. To walk down those corridors, to walk passed doors where my baby was born, and to walk passed doors where my baby died. I knew it would be hard.
In short, we talked about Connors heart and the cardiologist said that they were all so saddened by the fact that initially Connor had done so well after birth considering the condition of his heart. He said that the heart was so enlarged, and that his right atrium was so grossly enlarged that it was bigger than the heart itself and had actually wrapped itself around his heart. I asked many questions, but at no stage do I believe that any of the medical team involved made any bad choices. I firmly believe they all did the very best that they could and there is nothing that could have changed the outcome. The Cardiologist said that he believes it was the circulation that failed him in the end. This is a little hard to explain if you don’t understand how the heart works. In short, with Connor, he had very severe Ebstein’s Anomaly, what the cardiologisted termed as "lethal". Because the tricuspid valve had such a severe leak, the blood flow jet forced backwards into his right atrium. Because the blood wasn’t going back through to the pulmonary vein it caused that to block leading to Pulmonary Artresia. He therefore had no flow through the pulmonary vein at all. We know about the possibility of this being fixed with a balloon septostimy……but this would not have helped his circulation then and there because of the severe condition of the tricuspid valve ie the jet flow of blood back through to the right atrium there STILL would not have been any blood going through to the pulmonary vein, or at least very little anyway. Not enough to have improved his circulation. That jet force of blood going back to the right atrium was what caused the right atrium to enlarge to the size it had. The cardiologist said that yesterday they had a case meeting with all the team involved in Connors care and the one thing that really stood out for them was the size of his right atrium.
What I got out of todays appointment was that we had made the right decisions with his care. That we were sure that taking him out a week earlier was not going to change the outcome. But leaving him in longer, I would have without a doubt been delivering a dead baby some time prior to 40 weeks. I also came away with some important information. The day I left the hospital after Connors birth, I left with nothing. No baby, not even any information relating to his birth. All I knew was he was born around 9pm on the 8th of October and that he weighed 2790 grams. I didn’t know his length, head circumference exact time of birth and the other thing that was important to me..... his exact time of death. Today I left the hospital with that information. I’m sure someone else wouldn’t understand the importance of that, but it was important to me. I am his mum, and that’s something a mum needs to know about her baby.
Also the genetic testing results came through, and they were completely normal. There were no signs of any chromosomal abnormalities. It was just as I thought, my little boy was just all heart and far too precious for this earth.


The other thing that happened today, we had the dvd recording of the funeral delivered to us and Tim and I sat down and watched it together. It was so beautifully done and I am so pleased with how it turned out. We paid a professional through the funeral home to do a slideshow of 42 of our favourite photos of Connor and he put it to the most beautiful and fitting song “I will remember you” by Sarah Maclaughlan. He also filmed the whole funeral for us and did such a beautiful job of putting it all together. But one thing that stood out for me and I really didn’t notice it until tonight when I watched the DVD. At the very end of the service people got up and walked forward to the casket to say goodbye to Connor, and in between those people Deacon had walked up to the casket and touched it and stood there. The camera man zoomed in on him. He looked so upset with so many tears. He looked completely devastated. It was so heartbreaking. We know that he understands to a point what has happened. Exactly how much he understands I don’t know, but I know he does understand. To loose a child is just devastating, and to watch your other child grieving for his lost sibling is undescribably heart wrenching.


Something else I wanted to add, I heard something terrible today. A relative told my mum in so many words “So what…people loose babies everyday”. Well my reaction to this is they don’t know us, they don’t know what we have been through and they will never know my pain. I’m not really sure why people feel the need to compare my baby’s death to that of a miscarriage or a stillbirth. A neonatal death is very very different. I say this very calmly because I don’t feel anger towards these people, I actually don’t feel anything at all. Something I have learnt from my continuing journey is that sometimes you just need to understand it takes all types of people to make the world go around. You either accept those people for who they are and share your grief with them. If you can’t share your grief with them for whatever reason and you can’t get that support you need then there are a number of things you can do a) either don’t share your grief with them and go to those you can, b) share with them and deflect their comments or c) just shut them out. I think in my grief it has been easy not to feel the pain of others negativity and in a way be numb to it. I recently read another lady’s story who also had an infant loss. What she says is so true and I don’t know that I could have found the words to say what she said, so I have put her words here because I agree with everything, I feel everything she has said. Its simply how I feel.
“The overwhelming impression of those early days is one of being set adrift from the real world – I was functioning and living somewhere outside of and beyond every day normality. I would look at people who were simply going about their day to day lives and want to grab them, shake them and yell at them….’how dare you????’ How could they continue functioning when such a tragedy had happened? Surely the whole world should stop and mourn with us? Every now and then I would catch a laugh, and feel guilty. What are the rules for times such as these? What should I do? Life rolls on, we are in it but not in it. We see what is happening but don’t really participate – there is a bubble surrounding us and protecting us, we don’t really feel. ”

Connor's Funeral

Tuesday the 20th of October 2009

Today was Connor’s funeral. Our baby boy’s funeral. I keep thinking that when you are young and free-spirited you never ever think that you may outlive one of your children.
My day started off by waking at 5am this morning with that same empty feeling I get every morning that I have woken since Connor’s passing. Then I felt it, that dreadful pain you get when your milk supply comes in. Noooooooooo….this wasn’t supposed to happen, not today anyway. Why today???? I have already spent Saturday night stuck back in hospital with gastro thinking I may not be well enough to attend my own son’s funeral. Fortunately, I was well by Monday and fine by this morning. But god!!!! Why on earth would this happen. After Connor passed away the midwives gave me some miracle tablet said to dry up the milk supply and said there would be no dramas and that its very rare for your supply to come through. Well something I have learned over the last few months is that rare is nothing in this household…well I guess even the last few years really!!! For those who know us well would know the full story behind that. But rare means nothing to us, its more likely that it WILL happen!!! If you know what I mean?
So a phone call to my Ob, another trip back to the hospital and some more miracle tablets with a few more pain killers and a script and we were on our way to Connor’s funeral. A day I was dreading, but never thought I would ever have to do.
We arrived a half hour before the service so that Tim and I could spend some time with our little man and say our goodbyes. He was beautiful! He still looked just like a perfect doll. They bathed him and dressed him in a beautiful blue smocked christening gown that my sister Lizzie had made. I am so lucky to have Lizzie and for her to be the smocker, doll maker and baby lover she is, her house could easily double as a baby boutique!!! The gown was perfect on him. Tim and I spoke with him, touched him, I kissed him and I gave him his giraffe teddy I had bought him when I was pregnant. I also put in 2 tops. One said “Ladies man” and the other said “I am as Yummy as my Mummy” just because I know he would have been. I placed a Thomas the Tank Engine with him and told him it was a present from Deacon and a little Upsy Daisy Doll and told him it was a gift from Isla. These are Deacon and Isla’s favourite things and I wanted it to be something special from them. I know it will be and when I can tell Deacon and Isla when they are older, I know they will think it is special too.
Deacon and Isla came in a while later to say their goodbyes too. We hadn’t planned on them saying goodbye to him, but our social worker came in and asked us if we wanted Deacon especially to say goodbye as she thought it would be good for him. We had thought about it over the last few days and we were not sure, so went with it and brought the kids in. We told them both that it was time to say goodbye to Connor. Deacon cried and was upset but not distraught and Isla said “pretty baby” and pointed at him. After we said our goodbyes, it was time for us to close his beautiful little white casket and for our family and friends to make their way in before the service started.
The service was conducted by the chaplain at the Womens and Childrens Hospital, a Baptist minister. He visited us when we were in the WCH and also baptised Connor for us before he passed. The service started with a song that during my pregnancy always made me cry, “The Climb” by Miley Cyrus. It might sound corny but the words of the song were so fitting. It symbolised our struggle. The struggle that Connor and I both shared. The struggle that we all shared, Tim, Deacon, Isla and myself. It sounded so beautiful and powerful, but so sad. When I used to hear that song during my pregnancy I envisaged Connors arrival being tough, but that he would overcome his struggle and triumph. The song gave me hope. It gave me faith to believe that we would make it. Sometimes its that hope that gets us through and keeps us pushing on even when you feel you cant.
The minister then read a few readings that were just perfect for Connor. One that stood out for me was one called “Some People”. Then Tim and I did our readings. Mine was a letter that I wrote to Connor the night after he passed. Tim had asked me to sit down and write up the blog of Connors birth and the subsequent day, and also his passing. I started it, but got stuck right on midday on the Friday the 9th of October. I struggled so hard to remember the events of those two days, remembering that I was quite heavily dosed on morphine and confined to a wheelchair for most of those days. So remembering was and still is extremely difficult. So I decided to write him a letter instead. And that was what I read. Tim read a lovely saying “Sometimes Love is for a moment, Sometimes Love is for a Lifetime, Sometimes a moment is a lifetime”


Hear is my letter:

To my dear little man Connor Maxwell Gore,

Before I was a mother I never realised how much I would love my babies. I didn’t even realise how precious life really was until then. The day you were born was one of the most precious days of my life, it was also the most heart wrenching day of my life. I am so grateful for the 35 weeks we shared together before you were born. Through the heart ache, the tears, and all the pain, I enjoyed every precious moment with you. I treasured every kick, every roll, every little movement, it was so very very precious to me. It was a time for us to bond and get to know each other. It was our time. For me I could recognise that you didn’t like me resting my magazine on my big belly. You would kick it as hard as you could to try and kick the magazine off. This always made me giggle. For you, this was a time that you got to know my voice, I could see that when you opened your eyes as I spoke to you after you were born. I even think you got to know your brother and sisters voice. I watched you in the hospital after you were born, as you lay on your bed, you would jump when you heard your sister do her typical yell because she had a squabble with her older brother over a toy. I know you recognised her voice, I truly know you did, you had heard it many times before from within the safety of my womb. Your little character, personality and quirks shone through. We gave you your name Connor because it means “strong will”, and that you had. You fought with all your might, right to the end. There are so many things I am going to miss sharing with you. I will miss that time where I should have been able to sit for hours just gazing into your beautiful blue eyes, listening to you breathe, and feeling your gentle breath on my face as I hold you tight. Our last cuddle will stay with me forever. I feel so very blessed. I am glad you fought and we had that opportunity to spend together. I am glad you choose to share your short life with our little family. And I am glad you chose me to be your mum, for that I am eternally grateful. You will always know that you were very much wanted and loved by your brother Deacon, sister Isla and your Mum and your Dad. I will always wish that we had more time. But my dear little boy, you were simply all heart and were just far too precious for this earth. Be free and I will love you forever, with all my heart.

Your mummy



We then had a slideshow of our favourite photos of him to the Sarah MacLaughlin song “I will remember you”. It was just beautiful and for us tells the story of his short life from his birth. There was another reading and then our family and friends were asked to come up to say their goodbyes to Connor, take a blue balloon and wait out by the hearse. Tim and I went and had our final goodbyes with Connor and I then watched my loving husband pick up his tiny sons beautiful white casket and carry it out to the hearse. It was definitely the hardest things I have ever had to see in my life with the exception of watching my baby boy pass away in my arms. Tim looked so brave yet so heartbroken. Life really just isn’t fair. I stared as the hearse drove away with my baby boy inside. One blue balloon tied to his casket and a big posy of blue flowers lay on top. The hearse was lined with tulle and a huge white teddy bear was inside. Watching that hearse drive away left me with another new kind of empty feeling and with the thought that I hope I never have to go through this again!
We then all went out the back of the funeral home to release the balloons. Yesterday Tim sat down with both Deacon and Isla and they each drew a picture for Connor and wrote a little letter which we tied to their balloons today. I released mine first and watched it go up to the clouds. Then Isla’s was released then everyone else released theirs. Someone called my name and told me to look up. I saw all the balloons going up together in the one direction………..going up to our darling baby boy Connor. Forever our angel.

(We dont have any photos of the funeral because we had it professionally filmed, but we have a slideshow of the photos that they played at the service, we will try to add them later)

AFTER

The next morning we were visited by my Ob, later to find out it was his birthday! He stayed with us for quite a while and he said that he had arranged transfer back to my private hospital on the general ward and that I could head over some time during the day, either by ambulance or our car. Our car was the option taken, so we left shortly after lunch time. I spent from the Saturday until Wednesday afternoon recovering in the comfort of the private hospital. All of the nurses I had were wonderful. Tim stayed over night with me every night and barely left my side. Staying on my own was a little daunting, so having close family and friends visit was an enormous help. Those that came to entertain me and chat with me I am so grateful for their love and support. Whilst I was in hospital we still had things to do. Tim still had to organise the hot water service and sort out our family assistance. Then there was Connors funeral. We had White Lady funerals organise it for us and it took quite a few days to organise.

I went home on the Wednesday late afternoon and Tim brought Deacon in to pick me up and take me home. He looked so puzzled when he walked in the room and asked where the pram was. He then asked where was Connor. I bent down and said to him “He’s gone” and his bottom lip dropped and the tears started to roll. He backed himself into the corner of the room and said “no no no no no, he’s not not not not”. It was so very heartbreaking, poor little man. He understood, but yet he was so confused. Deacon was ok after a little while and he then helped carry my things out to the car. We went home, where my sister Lizzie and my mum and dad were waiting for us with a prepared meal. It was strange settling in back home that night. But sadly the next morning Lizzie woke with gastro. We were then on our own when we sent her back home to recoup. I wasn’t sure how we would go on our own. Well, the next day was even worse. Tim woke up with gastro as well, and was he sick!!! I burst into tears, how on earth was I going to get through the day without Lizzie for help, without Tim for help and look after a sick Tim and the kids whilst still recovering from major surgery just a little over a week ago and TRY to grieve. I rang my parents, wondering if they could help. Dad was in tears and could barely speak, the ambulance had arrived to take mum to hospital. She had gastro too and was very sick! Oh no, what do I do? I tried to calm dad down, knowing it was gastro I knew they would take her for fluids and keep her in for a while. So I rang Tims mum, she was going back to work the next day and couldnt help me, but she could get some groceries and drop them off to my door. Done deal! I needed loads of disinfectant and basic food supplies. But arrgh!!!! I still had to manage on my own and there was no one who could help me! I was on my own. There’s nothing like being thrown in the deep end. I sat on the front verandah for a few minutes to myself and had a cry, when the post lady rocked up. I signed for the parcel, sat back on the verandah and when I opened it, I burst into tears. The beautiful girls from my online forum had got together and sent a pendant that had Connors name and his date of birth stamped on it. I don’t know that anybody will ever know how much that meant to me and I will always hold it in a special place in my heart. It came at a time when I was at a very low point in my life and I really didn’t know how on earth I was going to get through it. To have been through everything we had already endured, to be whacked with gastro, REALLY sucked big time! There is just no other way to describe it. To know that all my friends from M&B cared so much about us, was what gave me the strength to be able to pull myself together and get back inside and continue with the washing, mopping, scrubbing and disinfecting the toilets and hand basins and continue to make mountains of dry toast for the hungry and demanding hoards.

That continued all day, and through the next until around 6pm on the Saturday when I was on the toilet with a bucket. By around 9pm Tim had to call for an ambulance. Long story short I got gastro too, landed in hospital, had 4 litres of fluid, some maxalon injections, had a heap of blood taken for tests and then discharged myself the next morning at 9:30am because I'd enough of explaining to the Drs and nurses why I was 10 days post c-section and didn’t have a live baby anymore. I came home, took some more maxalon and imodium and stayed in bed sleeping it off for the rest of the day and night. By Monday I was okay to go on with the rest of the funeral arrangements, had to go to the shops to buy clothes for us all to wear to Connors funeral the next day and also had the hairdresser coming to cut Tim and Deacons hair and colour mine. We just kept going and did what had to be done.

The night my baby grew wings & flew to the angels

photos are in sequence - post below explains the photos

Continued from previous post
When we got back to the room, I explained to my midwife that I was itching like crazy and she said it was the pain relief from the self administering thing. It has a name, something like PCU or something. I had started to feel some relief because it was taken out around 7am and wasn’t reconnected until about 11am so the effects were wearing off. Then when she reconnected me back to that horrid morphine drip the itching began!!!! I had already scratched my legs stomach and back to pieces and asked her to take it out. The midwife said no so I very firmly said “If you don’t take it out I WILL RIP IT OUT!!!!” So she took it out. We did a few things back in our room and I was getting anxious to go back and see our little Connor. So it was back to PICU. By that time Lizzie had arrived with Isla and Tims parents had arrived with Deacon. The rest of the day is much of a blur to me, keeping in mind I had just had a c-section and was still doped to the eyeballs on medication, so I struggle greatly to remember certain things about the day. The hospital Chaplain came to visit us whilst the kids were there and asked us if we wanted him baptised, without a doubt we said yes. Carl Aiken was the chaplain and he was lovely, and the baptism was too.

I am glad that we had the kids brought in to meet Connor. Isla was so puzzled and to me she looked enormous compared to Connor. Deacon was upset at times. Tim asked him if he wanted to kiss Connor and he said “No he’s got a bruise on his face”. All we can think of was because Connor had tape across his face that maybe he thought Connor had bruises. But then at other times he would so “Ohhhhhh he’s so cute”. He just loves babies, which makes this even harder for me. I know he would have just adored having a little brother to grow up with him.

During the course of the day, it felt much like time stood still, but at the same time I don’t know where it all went! Our Drs came and went throughout the day a number of times. My Ob came in to check on us a number of times even though he doesn’t practice at that hospital. The cardiologist was also in and out a lot. And the intensive care specialist was with us pretty much the whole day. Connor had constant round the clock care. His nurse for that entire day was Guy, there was also other nurses that helped. But guy was there all the time. Also a number of times Guy would stop and say “Mrs Gore, I’m just going to empty your wee bag for you”. Sorry that may be way too much information, but I was just dumbstruck at how the staff who were looking after our little angel went above and beyond to look after all of us as well as Connor.

Over the course of the day, Connors condition started to deteriorate. He had not urinated and his lactate levels went up which meant his kidneys were not functioning. We could see that he looked more and more puffy as the day went on. Because his kidneys were not functioning that also mean that his circulation was not functioning properly either. Later that day, my parents came in to see Connor. We had Tims parents, my parents, Deacon and Isla and also my sister Lizzie with us. The intensive care specialist Dr, Connors nurse Guy and the cardiologist called us into a private room. The short story is that we were told that there was no hope anymore and that Connor was going to pass away shortly. The ventilator was keeping him going but he was slipping in and out of consciousness and would pass away they thought sometime during the night. We asked about the possibility of taking him off the ventilator to cuddle him to say our goodbyes whilst he is conscious rather than keeping him on the ventilator and having him pass away unconscious. The Drs both said they supported our decision and highly recommended it as we didn’t know when he would pass away. Tim asked if we could have our parents come in so the Drs could explain what was happening. The Drs agreed so our parents came in and they were able to ask any questions that they wished. The intensivist said he would go home have some tea and give us a few hours with Connor and then he would come back and remove the tubes as he would need to be there to remove the machines from him.

When we came out of the room I had decided that if my little boy was going to pass away, I wanted them to get my clothes so I could get out of that damn wheelchair and atleast walk around so that I could see Connor in his bed and touch him properly without being confined to a big cumbersome wheelchair!!! I also demanded that they call the midwives and tell them to get something for my itching and scratching as I was still tearing myself to pieces. So the nurses came up and gave me a drug reversal injection and also an antihistamine injection and then some sort painkillers in tablet form. Finally relief!!! All I wanted was to be able to enjoy some time with my baby and feel comfortable. My wish was granted.

By that time it was time for the kids to be taken home, and as we had no one else to take the kids Lizzie was to take them home for us. My one regret is that we didn’t have Lizzie stay with us. She has been such a rock for us and our one true guardian angel. I wish she could have stayed with us to say goodbye to Connor and give him a cuddle. My dad also went with Lizzie and the kids as he had already seen so much loss over his life, this would have been too much for him. It was so heartbreaking watching Tim say to Deacon that he had to say goodbye to Connor. I could see it in Deacons face that he knew something bad was happening. Tim asked him if he wanted to kiss him and he said no. When Tim told him to say goodbye he said “no no no no no no”. He looked as heartbroken as we felt. I grabbed Deacon and tried to put him on my lap and tried to explain, but he was just so upset so we let him go with my sister Lizzie.

So it was Tim, myself, my mum, Tims Mum and Dad who were left and during that time we had a change over of nurses. Guy went home and the nurse who had looked after Connor on his first night after he was born, Kim, came in to take over from Guy. Also a lovely midwife called Lisa came in and said she was going to be my midwife for the night and she stayed with us. We spent the time with Connor touching him, kissing him and talking with him. Tim took lots of beautiful photos of him. Ones I will treasure for ever. I still could not believe holding his tiny little handy that we had to say goodbye. He looked so perfect. When the intensivist came back, he started to remove the tubes and all the wires. They were finally able to dress him in a little smocked gown that the girls from Country Bumpkin had sent over for him. Finally I got to hold him without the wires and tubes, but he had to be bagged. I don’t know what its called but its where they pump oxygen in manually. Slowly Connor struggled to breathe. At the same time I could feel myself struggle to breathe too. Why why why???? Why was this happening to us. For the first time I could see his beautiful little face and he was so much like Deacon and Isla all rolled into one. He looked so perfect. It all just happened too quickly for me. Then he was gone. No more struggles for him. I held him and just stared at him for so long. I then passed him over to Tim and then my mum had a cuddle and then Tims parents. Then they handed him back to me, and they left. Tim and I stayed with him for 2 hours. I held him close the whole time and didn’t stop looking at him. It wasn’t until his little arm just slide from my arms that I remembered........he was gone. My baby was really gone.

Kim, Connors nurse asked if we would like a copy of his hands and feet done in plaster. We said yes and also ink prints of his hands and feet and a lock of his hair. We then passed him over to Kim and I walked back to my wheelchair over in the corner of the room and Tim wheeled me to our room back in high dependency. It felt like it took forever to get back to that room. I don’t remember much else because I think I slept off and on all night. Tim stayed up and wrote Connors story, of which he will add his version in at a later date. But Tim said that Lisa our midwife who was with us during Connors passing and stayed and took lots of photos for us, came in to check on me throughout the night and he said that she would come to the door and he could hear her sobbing just outside, then she would stop and then come in. I will forever be eternally grateful for all the photos that she took, because all Tim and myself could do is concentrate on being with our Connor. So her presence we are very very grateful for.

9th of October 2009

Recovery was not nice. I felt so uncontrollably numb. I hated it. My head hurt, I couldn’t move and I just wanted it to be all over. To be able to move on to the next bit. After a while, Tim came back because they said they needed to do some things and needed a sterile environment so it was time for him to go and say good bye to our little Connor. They said once Connor was stabilised that we would be able to go back to the intensive care unit to be with him. After a while we got the call and up we went to see our little man. The PICU seemed so dark and there were a lot of people - Drs, nurses, different specialists all around this bed with my little Connor in the middle of it with machines, wires tubes everywhere. I knew this was going to happen if he was born alive, but how does anyone prepare to see their own baby lying on a table looking like they have been crucified??? I don’t think you can ever prepare yourself for that. Never. I remembered lying in my bed, I was still recovering from a c-section less than 2 hours before this and was unable to move. And I remember just looking at my little man and wanting to cuddle him. He looked so helpless. The Drs were talking amongst themselves and then we were given an update. He was doing surprisingly well and they were really pleased with how well he was doing. The cardiologist mentioned that they could even send him to Melbourne in a weeks time and for the first time ever he actually mentioned the possibility of doing a right atrium plication, which is reducing the size of the atrium. I was so surprised. For the first time I actually felt hope. What an amazing feeling!!! He had a chance, well that’s what we thought anyway.
We were taken back to our room which was now in the high dependency unit within the delivery suite. I was hooked up to a catheter and a machine that administered pain relief when I wanted it at the push of a button. Awesome, I get pain…I just press the button and voila….instant pain relief. Works for me. The nurse came in through out the night to monitor me and check up on how I was doing. That was an awful night. I did not sleep at all, I watched the clock to pass the time but it just seemed so slow. Tim was asleep in no time at all so he was no company. I was in pain, I felt restless, my legs were numb so I kept wriggling them to get the feeling back and I had this itch like you wouldn’t believe over my entire body. If it wasn’t my legs that itched, it was my nose, or my tummy, or my back. I thought I would tear myself to pieces. The midwife said it was ok, its just a side effect from the drug in my drip and was perfectly normal. Yeah right! She said she couldn’t give me anything else because of my allergy to paracetamol. My solution just use it when necessary, so I did. So that’s how things went for the rest of the night.
Until the phone rang at around 7am. I yelled at Tim to grab the phone. He had been asleep and was in such a daze, he was stumbling around looking for the phone. I really hoped it would have been family but it wasn’t. It was one of the Drs from the PICU that had been looking after Connor all night. They asked us to come down immediately as they had been having trouble during the night trying to stabilise him. We called for a nurse and asked her to help get me ready so I could go down to PICU to see him.
When we got down there, it was heart wrenching seeing my precious little man on the bed lying there. He looked so different to when I had left him. He was really puffy. His little face looked puffy. They said that they couldn’t stabilise his blood pressure. They kept giving him adrenaline and it would come down, but shortly after it would go up. I know there were many things they were doing for him and giving him, but I was still recovering from having a c-section just hours before and I could still feel the effects of the morphine. I still had that restless feeling and wanted to do so much more, but was restricted to the confines of my wheelchair. I had been feeling so thirsty all through the night and ended up drinking over 2 litres of water but nothing was coming out the catheter bag. Very quickly and suddenly I felt a wave of nausea and said that I felt sick. Someone shoved a bowl under my mouth and up came all this fluid that I had been drinking and away went the nausea feeling. When I was sitting there one of the Drs came and started to talk to me about what was happening to Connor and they were doing everything they could to stabilise him. She said they could try another machine, but we would have to leave and it would take about a half hour to put together, which we said was fine because I was being called back to my room for more drugs and things to be done by the midwives. I asked the Dr about the possibility of Deacon and Isla coming in but said I was concerned they had colds, just runny noses. No coughs, no fever…..just clear runny noses. She said that it was fine and that we should do it as soon as possible. Someone else also asked us if we wanted a religious blessing or someone of a particular religion to speak to us. I said yes, and they went ahead and organised that. I think that was the point that I knew things were really bad and they were not going to go the way I had so desperately hoped for.