Hi ladies, guess many of you would have heard thru Hayley about our journey thru the last two weeks. Dont really know where to start but to say I read your posts of all your prayers and well wishes and wanted to say thank you.
on tues 21st june at 1.30pm my waters broke, my husband raced home and we went to the hospital. very obvious my waters had gone by the amount of fluid loss. baby ok o moniter. No labour said thed have to transfer me, our children arrived at 5.30pm, half hr later they prepping me to fly to a hospital 5.1/2 hrs drive away. 6.30 were on a plane and gone. dont start labour which they expected given antibiotics and steriods for his lungs. no labour so they watch for infection which means we get sick he needs to be delivered. Discharge starts thurs no other signs, fri afternoon odd pains, fri night contracting 5 nin apart taken to delivery, sat morn 2.43 am 21 june our 716g baby boy is born by emergency ceserian. His lungs are underdeveloped as he's 24+2 wks but worse as litttle fluid is in his lungs and when they try to ventalate him his lungs are like cardboard abd the pressure bursts his lung, the next two days are very unstable, he has numerous tubes in his umbilicus, a ventilator breathing for him and massives of machines around his incubator with such a little baby inside.
over the next few days he heals one lung and has that chest drain removed only to blow the other, they say his lungs are very damaged calling it cronic lung disease, on tues they find he has a PDA, a duct thats surposed to close at birth is open pushing blood into his lungs, by tues morn it is making everything very unstable, they were holding off on meds to fix as their are risks of it damiging the gut, the fact he had steroids for lungs after birth complicates things as two meds together greater risk of rupture. They have to give him med, do so thurs afternoon and straight away more stable, overnight no signs of prob, fri lunch they find on xray the worst he has perferated his gut (intestines). He is very ill and only option is surgery. We decide thru many tears that we would rather hold him and let him pass than lose him on a surgery table when wwere not there. the surgon arrives and says wont operate anyway as to risky. only thing he can do is put drains in his tummy like hoses to let the stuff coming out his gut into his tummy out. If anything they say it will give us just a little more time. They tell us he has 12-24 hrs to live. The pain is unbearable and after the emotions of the last week we are shattered, we've gotten to know him. he responds to our voices, he curls his fingers around our finger. his eyes have opened and he looks at us, and not just a mothers bias but he's very cute.
We sit and cry for many hrs then go to try and sleep, the next morning we wait for the signs of infection, the surgon said it wasnt good the amout of blood and meconium in his tummy and it will overwhelm him soon.
Saturday we have a wonderful nurse on thats been with us all week, we have a lighthearted day and take his hand and footprints. we prepare ourselves for him to pass soon so spend the day creating many memories. Many more smiles than tears yet still exhausting, I'm now ready to take him home. I didnt want him to have to suffer, his lungs arnt good he has no brain bleeds but could have brain damage, his blood sugurs are to high, he's blown his lungs 3 times and still has drains in and now he has blood, bile and meconium flowing through his body, and yet its now thursday.
Our little boy has defied all odds and didnt die on saturday, I've been sitting by his incubator waiting for him to turn so we can stop treatment, they wont now because he's fighting to be here. Infection hasnt happened and he's actually very stable, I've cried all week because the pain of knowing your babys going to die then he doesnt followed by when's it going to happen and I just want to go home and see my other children has broken my heart. I dont want this little boy to suffer and the drs now say they dont know what will happen, he's done what they said he wouldnt and now its all up to him.
Its so hard when you prepare your self for him to go and now they say he could beat it to even have hope. I think the pain of building myself up on hope to come crashing down tomorrow would be unbearable.
We are far from friends and family and our children lives have been turned upside down, aside form this I cried no tears today and I changed his nappy, my husbands been doing this as for the past two days i've not wanted to get to close, He's so so little and so precious its been tiring just waiting for him to die, I dont know what will happen now, he's my baby now, 13 days old today. I wish I knew for sure what the future held at the moment its just full of so many uncertainties.
I'll keep you all posted, if he's going to go please pray its quick, if not let the road be easy and give us the strength to get through this
Amy
we had another good day yesterday, thank you all for your words and prayers, so appreciated x
5 1/2
4
2 jamie
bn at 24 weeks 21st june, died 14th August 2008, 54 precious days xx