I joined this site in late August 2007. Now, we are 8 months down the line ... through the last 8 months ive been through things i never thought or imagined would happen. Our twins were delivered extremely premature. Our daughter Mia passed away inutero during the second trimester due to severe HLHS and our son Giaan completely stopped growing at around 26 weeks gestation, soon after i delivered them both. He has now been living in NICU for 5 months.

Ive moved all of our updates to the 'blogs area' to free up some space on my profile page. Please feel free to read my blogs and get in touch, id love to be able to offer support to other women going through similar circumstances, or chat with mami's with preemie babies with IUGR, BPD/CLD and heart defects.

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THE COMING HOME ISSUE (written in mid March)

(people keep asking so i thought id write up to avoid repeating myself)

'Normal' preemies are expected to come home from hosp on their due date, however here they are allowed to come home when they reach 37 weeks gestation. They have to be able to feed, breathe and keep their temp up without assistance - this is usually achieved around 35 weeks, depending on the gestation at birth. Because DS had IUGR that added a few weeks extra hospital time. For a long time i held onto these expectations. However having a preemie is extremely unpredictable. Due to infection and RDS DS has needed extended time on the ventilator and as a result he developed BPD/CLD. This chronic lung disease means he has very bad scarring on his lungs. The sad thing about CLD is that it is caused and worsened by mechanical ventilation, however due to the damage on his lungs he needed the vent to keep him alive. As you can see it is catch 22, and a very difficult cycle to break out of. It took me a long time to appreciate the severity of DS's multiple heart defects, im thankful to say he has a wonderful cardio team and he's made it through several surgeries. When i first came home from hospital i could never have imagined we would go through all of this!

In Feb DS spent time on a heart/lung bypass machine, this took the blood out of his body and the machine worked his blood externally as an artifical heart & lungs. This was the scariest time of my life, the issue for us hasnt been about coming home, its been whether he would be alive over the next 24/48hours. During this time the consultants told me his lungs were too scarred for him to survive. Then 3 weeks ago they said he was getting strong enough to have a tube placed through his tummy and throat to keep him functioning enough to get home. I held off on those surgeries, and all of a sudden he is doing really well all by himself! He really is a miracle! Its such a rollercoaster, going from waiting to say our goodbyes - to wondering when we will be home! Im too scared to estimate when he could come home, but if he keeps going like this i think he could come home on oxygen and a heart monitor within 2-3 weeks! Im scared to dream of this, but i have faith in my soljah :)

http://justgiving.com/preciouspreemies

Just Giving.com is a charitable site. It allows you to anonomously and safely donate money. Once you donate the money it sends is STRAIGHT on to the charity, and in NO way benefits anyone else, but 100% to the charity. I have set this page up in memory of our babies who went to heaven too soon. The charity (Bliss) works to prevent premature birth and problems in pregnancy. The work that Bliss do has let my lil man live, without them i would not have had the information, support or even my son here with us today.

Many of you read my story and send messages of support, but could you please find it in your heart to TRULY help, people just like us. There are thousands of parents praying by their babies incubator or even attending their preemies funeral RIGHT NOW. Please can you think about them, and about how blessed you are to be having a healthy pregnancy or how blessed you are to have your own children. Im asking all of you if you can donate £2!! (its the minimum the charity accepts). Thats like $3 i think. It will make no difference at all to you, but it will help to save another families baby, their hopes, their future and their family. Thank you!!! x x

(Bliss is like the UK 'version' of March of Dimes, through this site it means US mommies can help too!

June 25th:

DS most recent x-ray shows significant scarring from the virus he had. His heart is struggling and today the doctor told me his 'honest opinion' is that he doesnt think DS will survive long enough for the surgery. He has gained several ounces of fluid overnight. Im sitting here alone bawling my eyes out, my son is struggling for life whilst MY hubby is with another woman, so i am doing this all alone. My soldier is losing his battle.

I just want to thank each and every one of you who supported me during my pregnancy and since the twins were born. Thank you all for caring, thank you for your prayers. I dont know that i will be coming on here anymore, i cant even tell y'all how much pain im in. I wish you all the best for the future, take care of yourselves and enjoy every single moment watching your babies grow, you will never know quite how precious they are.