June 2012

June 3^rd 2012, I have only got 19 days until I see my consultant again and until I see my little man again, I can’t wait. I will be asking my the consultant to tell me the sex again as they said they were pretty sure they saw boys bits but were not 100% sure, let’s see what he says as it will be interesting to see if they change my little mans sex or not. I wrote to some true life story magazines to try and put some knowledge out there on Edwards’s syndrome by using my story so far. In all the time I have read true life magazines I can’t ever recall reading a story about Edwards Syndrome, I asked my mum the same question and she said no too. I have had a reply back from take a break and they have said no, I have had a reply back from real people asking me for some more information on our story for Wednesday so hopefully I will get a reply from them. I haven’t yet had a reply from pick me up, best or that’s life as yet. I looked on my blog again today and have had 455 view to date and it was only put on a week ago. I have had 372 views in the UK, 64 in the US, 5 in Canada, 4 in Australia, 3 in Gibraltar, 2 in Denmark, 1 in Switzerland, 1 in Germany and 1 in Ireland. I have had some lovely comments left too. I will put the comments in to here as some have been left on my blog and some on facebook. 

Stacey this is amazing and has brought a tear to my eyes I am here if u need me and can’t wait to see picys of the 4d scan xxxx love shell x

So much love and hugs to you and your family hun, can't wait to see pics on here and dio xx charis xx 

Reading this has brought tears to my eyes Stacey. You are all being so strong. Every day you are all in my thoughts. Keep strong for your son. Sending lots of hugs. Look forward to seeing your next scan pics. Love Teresa xx

everything you have said reminded me of how I felt in my pregnancy had a baby girl Isabella Louise edney with full t18 she was due 22/3/12 but arrived on the 2/4/12 she was 4lb 11oz we asked for feeding tube if needed but no breathing tubes but oxygen if needed and she did she was on feeding tube for 3 wks and went from strength to strength. . 13th June I rushed my lil to hospital struggling to breath and later went on to life support then to Bristol children hos were she got stronger but everything then changed in minutes on the 19th June were we decided it was best if we took tubes out and let her breath on her own and go when she wants she sadly past at 23.11 in her mummy’s and daddy’s arms, her funeral is 31st but all I can say is treasure every minute of the pregnancy and how ever long u have with your lil boy :-)x x x best of luck huni I hope all goes as smoothly as pos x x x

Please keep us updated hun. You are such a strong woman and mum. Angelo will be so proud. Lisa XX

Stacey, you are amazingly strong and reading your blog brought tears. Wish you love xxxxx CraftyMummy

It's very interesting and it's lovely you've decided to share your journey x Emma

U deserve every view nd many more ur amazing Hun x Roxanne

Stacey your blog is wonderful. I had tears in my eyes. Wishing you, Joel and Angelo well, lots of love Donna and my angel India xx

So far a journey to treasure already, chin up and always keep smiling, here if u need me cuz. Xx Diane

Have read your blog, and find it heart warming, and inspirational,I think its great that your so positive, and can appreciate your decision to give your beautiful baby boy a chance in this world x x Holly

Beautiful babe x Kim

 A lovely blog, thank you for sharing xxxx beautiful blog and beautiful scan pictures xxx Leonie

 beautiful hun xx Charis

 beautiful xxxxx Shelley

So beautiful you are such a strong person and an inspiration x Sarah Louise

So beautiful I am sitting here in tears, you are a very brave couple xx Rachel

Sat and sobbed through this, you are such an inspiration and so brave! Im sure angelo knows he has wonderful parents! Massive love for you both x Hana

Thats a beautiful blog, and shows the bond and strenght of a Mothers love. Casting crows lyrics are amazing, I love their songs. Love to you and your family xxxx Theresa

so beautiful. You are an inspiration. I cried so much...so much admiration for you. Your little boy is so lucky to have you both. Xxxx Naomi

aawww so lovely tears in my eyes bless ♥ xxx Sammy Jobo

 So beautiful made me cry, your so strong and I admire you for it xxx Cleo

Oh wow Stacey u r an amazing person and Joel too. I was in tears reading this. Angelo is a very lucky little man xo Nadene

 Stacey, this is beautiful and so powerful. sending you, Joel and Angelo so much love and hope xxxx Jenna Jayne

I've been wondering how you've been getting on so will be really interested to read this. Will save it for a bit later though when my lo is in bed and I can concentrate. X x x Just finished reading. Wishing you, your husband and baby Angelo the very best. Nothing stronger than a mothers love and your living proof of that x x Emma

This blog is so beautifully honest, you are so brave, wishing all 3 of you teh very best xxx Terry

Thank you for sharing this with us stacey xxx Kerry

 Theres nothin I can say that can take ur fears away. Its really touching to read and your little baby boy is loved by all. Chin up hun, ur stronger than anyone can imagine xxx love to u all x Lindsey

xXx xXx John n Lou

♥ Rebecca

Beautiful ♥ thank you for sharing xxx Colleen

thanks for sharing my daughter is 15 years old with trisomy 18 Jude

We will be praying for you and little boy Angelo....and Joel. ♥ Sarah

Very touching. All the best to you Karin

hi stacey.iv just read ur blog.just want u to know that u r entitled to a free 4d scan on nhs.they do it at 30 weeks.i had a brillant consultant and I would of had one but I only got to 29 weeks.i was in the same boat we couldnt afford it so I spoke to her about it and she offered it for free.just try if not good luck and I look forward to reading ur blog x Katie

Wow Stacey , I read every single word you wrote in your blog x you and joel are incredible y brave and strong , I'm balking my eyes out x if you ever need anything please let me know your amazing. Me 2 kylie x don't even know how I'd cope x least she knows every single lady here is supporting her and all the other people out there who have met her and joel x Joanna

Echo what Joanna said, you are truely inspiring. It really does make you think about life in a completely different perspective. I actually feel privileged to be able to share this journey with you. X x Kylie

I really admire you and your hubby Stacey :) both so brave x x Sarah

Hey I jus read ur entire blog and omg I thought I was reading my life wiv what I went throu wen I was pregnant with kayla the exact same emotions the exact same things wot the consultant sed that she wnt able do nethin blah blah but I kept sayin she deserves a chance but I look at her now n think I've glad I kept to my decision because I wudnt have my beaut now!! My pregnancy was hell but soon as she came out screaming all that disappeared!! Stay positive hun they may say its all bad now but wot ur little man achieves is a bonus :)) that's how I thought neway xx Claire

Stacey, you are one amazing young lady!! Remember what we said when we met, they told us so many things were wrong with William, and they were wrong. The same as you we decided to let nature take it's course, and as you say, whatever will be,will be. He has loads of things 'wrong' but he still overcomes, despite the medical proffession. I have to say though, without medical intervention he wouldn't be here now, so push for what you feel is right, and check out your legal rights when it comes to the decisions made by'people in charge'. Much love to you, Joel and baby Angelo. Can't wait to meet you both again, you are so inspiring! XX ♥ Lizzie

Hi, It is a very important and good blog. Thank you. Hugs Karin

Because it's amazing...and so brave :) x Naomi

I have it bookmarked, I've made most of my family read it, they all think you and Joel are amazing x Hana

 I may have it bookmarked.... :) Terry

Just had a read and a little cry, what an amazing lady you are x Laura

Awwwww thats awesome babes, just read the whole damn thing and blubbed, reminds me of my lil man, and his lil blog...lol we are so similar hun. Its lovely xxx Mel

 Honestly Stacey, having not been in your situation I have a limited understanding but I really enjoyed reading your blog. It's a lot more understandable than medical jargon and as heartbreaking as some of it is it shows just how strong you are. Plus after reading that I feel a bit more informed and less likely to say something stupid/offensive without realising IYKWIM xx Kirsty

On 5^th June 2012 I had an email from Substaing grace saying  Yes, set up an appointment with See Your Baby and let me know when it is. Thanks, God bless, Scott and Diane Peterson I was sure by now, God, that You would have reached down and wiped our tears away, stepped in and saved the day. But once again, I say amen and it's still raining 
as the thunder rolls I barely hear You whisper through the rain, "I'm with you" and as Your mercy falls I raise my hands and praise the God who gives and takes away. And I'll praise you in this storm and I will lift my hands for You are who You are no matter where I am 
and every tear I've cried You hold in your hand You never left my side and though my heart is torn I will praise You in this storm- Casting Crowns. I sent one back saying I have tried to set up the appointment with see your baby and its going straight through to payments and not showing up any dates or times. Baby bond show up dates and times on the booking page, would it be better to go here as its simpler to set up?? I would like the 28th July at 14.10 Thanks Stacey.

On the 6^th June 2012 I had another email back from Substaing grace saying Sure.  Do you need me to do it from my end?  Do you need to pay at the same time as you set up the appointment?  If so, let me know some times that work for you guys and we can set it up and pay at the same time. God bless, Scott and Diane Peterson I was sure by now, God, that You would have reached down and wiped our tears away, stepped in and saved the day. But once again, I say amen and it's still raining 
as the thunder rolls I barely hear You whisper through the rain, "I'm with you" and as Your mercy falls I raise my hands and praise the God who gives and takes away. And I'll praise you in this storm and I will lift my hands for You are who You are no matter where I am and every tear I've cried You hold in your hand You never left my side and though my heart is torn I will praise You in this storm- Casting Crowns. I sent one back saying hi, yes it needs doing from your end, yes they want payment at the same time as booking appointment. not to fussed on the time as long as its afternoon, 2pm onwards is good. thank you Stacey and Joel. Finally 20 weeks so we are now half way there, carry on fighting son and proving the doctors wrong.

On the 8^th June 2012 I had a day where I was feeling very down in the dumps, I couldn’t stop crying. Joel was there to pick me up again, he gave me a lovely cuddle and we sat and had a long chat about our son. All we both want is to get whets right for our son not to be told that he’s incompatible with life, we want medical professionals to have more hope and faith and to stop going on textbook cases.

On 10^th June 2012, I looked at my blog and looked at the statics again today so far we have had 668 views. We have had 569 in the UK, 72 in the US, 6 in Australia, 5 in Canada, 4 in Gibraltar, 2 in Denmark, 2 in Ireland, 1 in Switzerland, 1 in Germany and 1 in Hungary. I can’t believe the comments that we have had and how many people have viewed it. By doing this I hope to raise people awareness on Edwards syndrome and I want our journey to help other people. Only 12 days until we see our son again, can’t wait.

On 18^th June 2006 I have been thinking about the girls in the due in October group who have sadly lost their babies and have now got angel babies. It has bought home reality to think that this may well be me at some point, I just hope and pray that my little man is strong enough to hold on and carry on fighting so that we can meet him and have a cuddle because that is all we want more than anything else in the world. We have been listening to his heartbeat at night before we go to sleep, some nights he is far too active to be able to hear his heartbeat and other nights you can hear it perfect. I treasure every little movement, turn and kick that I feel him do; I just wish he would do it a bit harder so that his daddy can feel him too. Waking up in the mornings my belly is a very odd shape; it looks like my belly has been sucked in at my belly button so I haven’t got a clue what strange position my son is in. We only have another 4 days until we see our son again, we are hoping that the scan doesn’t show up any other problems than the ones that we already know about, but we just have to sit, wait and see. We are still thinking positive and taking each day as it comes, yes it’s not always easy but I believe that we have been given this special boy for a reason. I also believe that Mel’s angel baby Liam is helping to keep me strong, I also believe that it was Liam who got Mel to put her blog up and him who got me to read it before I knew about my Angelo. Yes Angelo does have his quiet days but he also has his days where he’s so active and won’t go to sleep. We are 22 weeks on Wednesday so he is fighting all the way; this just goes to prove it. No matter what happens I will love my son and he will always be special to us, in the long run he will make me and Joel stronger as a couple too. Our blog now has 928 views to date. It’s had 752 views in the UK, 131 views in the US, 12 views in Canada, 6 views in Australia, 6 views in Gibraltar, 4 views in France, 2 views in Germany, 2 views in Denmark, 2 views in Ireland and 1 view in Switzerland. I just can’t believe that every time I look that more and more people have read my blog and its going more and more around the world, I just hope that it opens people’s eyes and raises so much more awareness out there.

On 19^th June 2012 I received an email from Substaing grace saying my wife is going to try to set up an appointment on Thursday or Friday this week after 2:00.  We will let you know when it is set up and paid for. God bless, Scott and Diane Peterson
I was sure by now, God, that you would have reached down and wiped our tears away, stepped in and saved the day. But once again, I say amen and it's still raining as the thunder rolls I barely hear you whisper through the rain, "I'm with you" and as your mercy falls I raise my hands and praise the God who gives and takes away. And I'll praise you in this storm and I will lift my hands for You are who You are no matter where I am and every tear I've cried You hold in your hand You never left my side and though my heart is torn I will praise You in this storm- Casting Crowns. I sent one back saying ok thank you very much, when its booked will you confirm which one it has been booked with for me please? Thank you Stacey

20^th June 2012, we are now 22 weeks pregnant, little man quite active today. 2 more days until we see him again on scan, can’t wait just hoping that he carries on fighting proving the doctors wrong and hopefully they don’t pick anything else up that is wrong other than what we already know. Took a photo today of my bump. Dad sent me an email with some links for another case of Edwards Syndrome. Reading these makes me so much more determined to fight all the way. The links are http://news.bbc.co.uk/1/hi/wales/north_west/3738874.stm, http://www.dailymail.co.uk/news/article-323247/Why-doctors-convinced-baby-Luke-die.html and http://www.socialsecuritydisability.tv/compassionate-allowances/edwards-syndrome-social-security-disability. There is no way I will give up without a fight. Nature can do whatever it wants to do but I won’t play god with my son’s life as he is our little star, he’s our fighter. Love you so much Angelo Jack. Spoke to Dad on the phone for an hour tonight about Angelo Jack, bloody miracle, dad never stays on the phone for that long. I received a phone call from Substaing Grace tonight and an email confirmation saying that they have booked my 4D scan for the 28^th July at 14.10, I have my 4D scan at baby bond in Milton Keynes. I am having option 1 done which means we will get a well being checklist, growth report with fetal weight estimation, complementary sexing if desired, 3d thermal black and white images throughout the scan, 6 colour gloss 3d scan prints, a DVD scan recording in a sleeve, and baby bond USB memory stick with 3d still images with a choice of a blue, pink or white baby bond bag to take home. Can’t wait to have my 4D scan done now, so excited about it, as I am sat writing this tonight I can feel Angelo Jack moving around, it’s his playtime now.

On 22^nd June 2012 we saw our consultant with the specialist midwife, he did another scan on our son, and he printed us off 3 precious scans pictures. He didn’t pick up any abnormalities that we didn’t already know about, the only new thing that he picked up was that our son has got rocker bottom feet but that really doesn’t bother us at all as we will love our son no matter what. My placenta is working well on the left hand side but poorly on the right hand side, they have said that overall it is ok and nothing needs to be done at this current stage. We have been told that they will monitor me intermittently with the Doppler so I don’t have to have continuous monitoring if I don’t want to. I have already decided that I want to be able to move around while I am in labour and not strapped to a bed. I have been told that they won’t do a caesarean section under any circumstances as they don’t want to put me through major surgery. Originally I wanted a home birth but have since decided that I now want a hospital birth even though I have been told I can still have a home birth. I may well go for a water birth if I they allow me to as I have told them I want to be treated as low risk as possible. We have been told that Angelo will probably have difficulties breathing at birth due to his diaphragmatic hernia but they won’t ventilate. I don’t have to see the consultant again until I am 32 weeks pregnant however he wants me to see the midwife every 2 weeks to keep an eye on my blood pressure We saw another specialist midwife called Jane who we discussed with baptism of Angelo, we have been given her phone number so that we can contact her with any other questions. We have had the referral done to the paediatrician team; we will get an appointment in the post. Next appointment is on the 12^th July with my community midwife, then 4d scan on 28^th July and then on 31^st August to see consultant again. I only have to go back to the hospital before August if Angelo is not moving but his so active at times so yes we will carry on living on hope and faith, carry on taking each day as it comes and carry on preying that Angelo carries on fighting and proving the doctors wrong. I am over the moon today as I have seen him and I know that he’s ok, he’s still growing. He is a strong boy and he’s our little fighter, love you so much Angelo Jack Smith.

23^rd June 2012 been out most of the day today, went to Laurissa’s school fete with mum, peter and Laurissa,  I sat with the kids for a bit while mum took Nicholas to get his suit for his school prom, then I came home had a shower and got ready to go out all over again. We went to a special party tonight, a party that would have been one of Joel’s friends 30^th birthday party. RIP Michael, sleep tight. Everybody lit a candle for Michael and floated it on the pond. Even though I didn’t know Michael, from everything that I have been told about him he has got a special place in my heart and I know that he will look after our son with my sister and granddad  if he goes up to heaven to meet him, he will play football with our son. It was a good night but I did get a bit tearful as it made me think of me and Joel in the future as we don’t know what the future holds for us with our son, we don’t know if he will be an angel or if he will be here with us. Given all of his problems he will probably be an angel as the doctors have given up on him, but even if he is an angel he will still be our special boy and we will still be a mum and a dad but just in a different kind of way. Angelo Jack has had his feet in my ribs most of the night tonight; he’s been a little wrigglier, hopefully he settles down before I go to bed. I have got a few pictures to go with tonight’s update but I will upload them as soon as they are emailed across to me.

24^th June 2012, we are now 22 weeks and 4 days today. I laid on the sofa this morning listening to music, little man quite active this morning, saw my belly move for the first time ever, tried getting him to do it again so that I can record it to show his daddy but he’s not done it since. Feels like my boobs have started to leak some sort of fluid too as I woke up this morning with clear wet stuff on my arm and it lined up perfectly with my boob, I haven’t got a clue what it is though.  Rang my mum saying mum my boobs are leaking clear stuff what the hell is it? Mum was laughing and said its ok it’s all normal, that will be something that we never forget. My boobs have defiantly started leaking now. Joel is over the moon as he finally felt Angelo Jack move and kick him, it’s the first time he has felt him so it brought tears to his eyes and he went to sleep with a big smile on his face. It took ages to get Angelo Jack to move and to kick Joel, we had to play football songs to him to make him move, he’s defiantly his father’s son but he’s got both of our stubborn streaks in him.

27^th June 2012 went to Laurissa’s sports day at school today then went back to mum and dads after. Laurissa enjoyed her sports day and she did really well bless her. My little man was wiggling around while I was sat watching her, Laurissa said to all the other children this is my big sister and she’s having a baby, bless her little heart.

28^th June 2012 I received an email from sustaining grace saying Hi Stacey: I'm so sorry -- Scott and I were supposed to send you the confirmation info for your appointment. We are in the process of transitioning the paperwork and emails for Sustaining Grace from Scott to me (Diane) and we haven't gotten our act fully together yet (and I think he was confused about the date you wanted, but I found it in an old email). In any event, yes, you are booked at the Milton Keynes location for the date and time you requested: July 28 at 14:10. You confirmation is attached. I booked the largest package I could get for you so you would get as many photos and the DVD, as well as the maximum time. Please confirm that you received this, and let me know if you have any questions at all!  I promise I'll be better about answering more quickly.  :) I will call the facility and pay the balance of the cost before your appointment. Please go and have a wonderful time!! God bless, Scott and Diane Peterson I was sure by now, God, that you would have reached down and wiped our tears away, stepped in and saved the day. But once again, I say amen and it's still raining as the thunder rolls I barely hear you whisper through the rain, "I'm with you" and as your mercy falls I raise my hands and praise the God who gives and takes away. And I'll praise you in this storm and I will lift my hands for You are who You are no matter where I am and every tear I've cried You hold in your hand You never left my side and though my heart is torn I will praise You in this storm- Casting Crowns. I sent an email back saying Hi Scott and Diane Yes I have got the confirmation, when I have had the scans done, I will attach them all in an email so that you and Scott can enjoy them too. Thank you so much for doing this for myself and my husband, it means so much to us. Stacey and Joel.

29^th June 2012 we are now 23 weeks and 2 days, little man is still going strong, and he likes to wiggle around in the mornings and last thing at night. Have got lots to do today so need to get on and do it but really can’t be bothered today but its jobs that have to be done.