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ourcheethamfamily13-blog · 6 years ago
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Alices story.
Alice was diagnosed at my 36 week growth scan, I lyed there laughing and joking with the scan woman, until she went really quite, she then said she needed to go get someone to help her get a certain measurement, it was not strange at this point as Alice never cooperated in scans so I wasn't Concerned till this lady came in had a look over Alice and said she had to go get someone else to come look... I started to get a little worried I asked if something was up her reply 'would you like me to get your husband to come in' (he was sat outside with Billy), with this I started to cry as I new something was up.
We sat there quietly crying while 3 people looked at our baby.
No one could tell us what was up at first and wouldn't give us a proper answer, they booked us an appointment at Manchester St Mary's hospital to get scanned by a specialist 2 days later.. Longest 2 days ever.
This scan they confirmed the diagnoses, our Baby had  Right sided hernia which give her a lower survival rate, also her heart had been pushed by her bowel into her rip cage on her left hand side, but he said her heart was working fine and in good condition.
He then said the dreaded sentence 'if she survives the first 48 hours' our hearts broke, the baby that was so activally kicking inside me suddenly we didn't no her fate.
We got home and looked at her bed beside ours and broke down, we no longer new if we would ever get our baby home.
We went back a few days later to see the specialist in the nicu, they showed us round and gave us alot of hope with where our baby would be born and the doctors looking after her. He also gave us hope everything would be okay with the fact of how late it was all found, as they couldn't see her lungs on the scan as of how far along I was and how late it was found he saw this as a Good thing, but no one would really no till she was here they booked me in to be induced the week later.
The day came all went well after a quick and painful labour she was born 2.42am. The room was silent she was the most beautiful thing I have ever seen but she made No noise.. The Nicu staff was on stand buy and quickly started there work on her.. They expected her to cry. 
Panic struck are faces no one would tell us what was happening crowds of staff was round our baby girl. After they applied all the breathing tubes we got a quick look before she was taken away.... We waitied... A few hours later the miswife came to collect us to go see her, she was covered in tubes, one of the machines was shaking her whole body, she was sedated, but when we held her hands and she heard are voices she started to open her eyes and kick. This wasn't suppose to happen, they then sudated her more.
The doctor came in to speak to us, he told us it was alot worse that was thought, Alice hardly had any lung tissue on either side, because of this the oxygen was struggling to pump round her body and they was struggling to keep her blood pressure up, she was on the most help they could give her.
They promised they was doing all they can for her and would call Liverpool to see if they would send the ecmo machine (a machine which goes into main vein to help oxygen circle the body).
A few hours later they came for us again she was still on maximum support and was struggling, Liverpool wouldn't send the ecmo as it would no longer help, we got sent away again. We decided to call are parents to let them no she was born and things wasn't looking good.
They came for us again a hour later. Alice skin had changed And was going grey, then he said it 'there is nothing more we can do, even with the top support, she was going and hadnt long left, would you like to hold her' I begged and pleaded for a moment, but I realised I was wasting time.
They passed me my tiny baby girl, she was so beautiful, she was gone.
we sat there crying and cuddling, it felt like a Really bad dream, I really wanted to wake up and feeling her kick once again... This can't be our life... How can she be gone.... The doctor then came to check her heart beat at 9.10am which we already new she was gone which I cried at him even checking and announcing her dead.
They gave us some time then brought in a memory box to put things in for her including the hat she wore in the incubater, there is more stuff in there including a blanket I can't face looking at it just yet.
They then asked if we wanted to take some pictures, I new we should but in that moment pictures seemed weird thing to do and why would I want to remember this. They then started asking if we wanted to move to the butterfly room and if we wanted to bath her. Which I replied I couldn't. This I now regret I wish I took the chance to bath my baby and dress her, instead of waiting for her to be brought back to me, while they had her they did foot casts and hand prints and stuff to add to our memory box.
After calling are parents crying she's gone, both are mums arrived just in time to meet are little girl, she was all clean and dressed and rapped in a lovely knitted blanket, she just looked like she was asleep so peacefully, my heart broke again as its was just another reminder she wouldn't wake up, I rocked her cuddled her, they later brought in a huge moses basket with canopy, I cried once again as they explained what a cuddle cot was, it's a bed to put them in which preserves there body so that parents can spend more time with there baby's after they have passed on.
After a hour we said our goodbyes and for them to take her, they told us she wasn't alone and there was a little boy in the cuddle room with her, in some way this made me feel comfort but in another way my heart broke for the other parents feeling the same way as us in a different room.
I really wish I spent more time with Alice but in that moment I just didn't no what to do, if I didn't put her down I don't think I'd of ever let go of her.
I wish I spent more time with her that day, the day after I needed to see her again, Luke agrees to come with me as it was what I wanted but it was alot harder this time she was cold and her skin started to change, i shouldn't of let luke come with me as this was too hard for him, I sat there cuddling her, luke supported me but couldn't face holding her again we went home that day.
We sorted out the funeral directors and they collected her from St Mary's for us, I visited her on my own a few times at the fureal home, I sang to her, I told her all about the family and how much I miss her and love her, I stroked her beautifully long her, the photographer came to take some pictures of her, this was very strange but was told I'd regret it if I didn't have them. Which I'm so glad I have now.
The funeral I can't thank the staff at the funeral home and the Victor they all did am amazing job, watching the strengh in Luke as he carried the tiny coffin to the church and then to her resting place with my nan, Lukes job was always bed time with are son and as he said it was only right for him to be putting Alice to rest.
We set doves off and thanked everyone for coming to say goodbye, we only had close family come parents, grandparents and siblings and our 2 best friends.
This feeling will never go away we have good and bad days and we are trying are best to look forward to our future as a family with Alice watching over us.
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First picture, just before they took her away to the Nicu.
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help4cdh · 10 years ago
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Take all the time you need #CDH #CDHangel
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help4cdh · 11 years ago
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#CDHangel raising #CDHawareness
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help4cdh · 11 years ago
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Gone but never forgotten... #CDH #CDHangel
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