FAIL

lilis hard palate failed in the middle so it needs doing again :( ive got a appointment for a review with the surgeon the end of september im going to ask if he can do lilis lip re repair and the palate repair in one go because lilis been through too much in the last 11 months and especially this year and im wanting to avoid too many ops next year if needs be

and now were up to date :D

this past year has been so stressful its impossible to describe lilis went from the good baby who slept through from 12 weeks and ate almost everything offered who didnt cry and wasnt clingy to a baby who hates being away from us she whings for nothing shes up every few hours in the night for a bottle and its almost impossible to feed her she has a little then pushs it away why? because shes gotten the stage where she wants to feed her self shes no good with the spoon so we have to feed her and she cant finger feed because foods like bread cake chicken wotsits or anything even remotely finger foody because it gets stuck in her gap.
its been hard getting used to a new face when i was so used to one already ive had professional pictures done in october after the stomach op then january then march just days before her lip repair im still to get professional pictures done of her new face.
it is stressful having a baby with differences but she is like any other child no different in fact at the moment theres nothing to show thats shes different apart from 2 faint scars on her top lip.
we have lots of different health professionals:
chris grant cleft nurse shes been a huge help
mr hodgkinson specialist cleft surgeon
specialist dentist aswell as a normal dentist
speech therapist
i have a shrink whos really nice and ive only seen her twice because she needed to know that alls well and that im coping
dietitian because lilis struggling to gain weight
mr bosman the audiologist surgeon who will deal with any ear problems lili may or may not have mainly because of her cleft palate no far no problems
we still see dr liang from time to time

im really happy with lilis progress through all this she doesnt let anything hold her back shes far from shy and i do hope she stays that way i dont want her to be shy because of her clefts

lilis speech is coming on alot better than i thought it would shes almost a year old and she says 20 different words some of which i though out of her reach but she keeps proving us wrong

AND HER SECOND

end of june 2011 and its time for her palate repair and this is her after her bath the night before the op

in her gown before the op

the morning after the op at 6am

the night after trying to give her something to eat

playing waiting for aunty gill and nanny to pick up us to go home

ITS FINALLY HERE

the big day is here this is lili the day before her op on her way to newcastle for the operation

 this is her on the morning of the op in her gown and one slipper to keep her band on

and after the op

 i hated this face at first but ive grown to love it especially her flat nosey

CHICKEN POX

i was given a date in February for lilis first cleft operation only a few days before she got chicken pox so it was cancelled but on the up side i have another month to prepare for it.

CHRISTMAS

well its now christmas and theres been no more problems lilis now 3 months and is thriving getting big and a little heavy even though she isnt gaining weight like she should be.

THIS MONTH JUST ISNT OURS AT ALL

only a week after getting out of hospital shes back in her sick has turned green we went in the evening and by the following dinnertime i was going from james cook hospital to the rvi in newcastle because noone knew what was happening dye test under xray showed she has a under developed duodenum from xray shes taken straight to theatre im taken back to her room to sign consent forms the nurse asked if there anyone i could call to be with me and i fell apart burst out crying told her im from middlesbrough its almost midnight theres noone who can be with me at this time i fell asleep waiting for her to come back so she was taken to icu until the morning when i can go see her looks the same apart from a big plaster on the right side of her stomach i met my mam outside the hospital and we went to get lili to take her back to our room i prefer newcastles childrens wards better than james cook there are pull out beds for the parents and every room has its own bathroom and the rooms are really spacious lili spent 5 days here before being discharged but 2 days later she was back her stomach came open and was getting infected she spent another 7 days before she was allowed home and from there she got better even though she didnt gain much weight

WORST WEEK OF OUR LIFE

lilis now 8 days old shes been throwing up after every feed since she was born but this was far worse she threw up blood i shouted for a ambulance which arrived within 2 minutes the man messed about asking if it really was blood my dad walked in and told him to get us to the hospital got there chest xray bloods took get taken to the childrens ward and we are shown to a room whilest doctors stabilize her finally get to see her shes in paediatric intensive care unit (picu) the consultant a lovely tall chinese woman called dr liang tells us what been happening and we are told that no ones sure of the outcome shes that ill so we call in the hospital priest a father simon broughton whos from sacred heart church shes baptised there and then and then he demands food to be brought in weve been here since half 10 on the morning and its almost 9pm and havent eaten ive been given a parent room and my mams staying with me lili spent 4 days in picu she had sepsis a fatal chest infection milk aspiration air in her chest outside of her lungs she was on life support to give her heart a rest and she was sedated to keep her calm and slowing she was wiened off the 3 heart drugs heparin dopamine and debutamine she was kept on a low course of adrenaline and fluids and antibiotics. she then spent 7 days on the kids ward before being discharged.

FIRST WEEK AT HOME

good sleeper no crying good feeder

CONTRACTIONS LABOR AND DELIVERY

31st August 10am woke up with niggling pains. I'm thinking I'm starving, got up and stuffed my face. Pains are still there, I might need the loo spent a hour on the loo nothing looks like the big moments on its way texting my friends need to walk somewhere and i dont want to be on my own or go to my mams friends arent in god i have to go to mams get there mam i have pains think its happening and shes more excited than i am bitch ... walked to my nans shouting my mam up the stairs to have a look in the toilet at some white goo its my mucus plug coming away its definately happening ... rang the other half at work told him i was having pains that at this point was getting abit annoying but i was going nowhere without my tea so i went and had a take away ... 10pm mam and aunty came for me to take me to the hospital poor aunty gills shitting it driving me to the hospital and shes pregnant herself waited forever in maternity assessment was given some painkillers finally half 11 i get seen and get checked out its happening and 2cm dilated get moved to the labor ward and was got in a nice warm lavender bath water soothed the pains but as soon as i get out the pains hit me and im given gas and air middle of the night im checked again and im only 3cm i try and get some sleep 8am comes im checked and im 5cm im finally moved to delivery half 10 my waters are broken which was complete bliss as some pressure was taken off my lady parts and 1st september 2010 at 11.15am Lili-Zafina is born weighing 4lb 13oz my first words? shes aweful i dont want her the nurses thought it was funny and told me not to be daft high as a kite on gas and air and i remember saying alot of funny stuff such as midwife sat at the end of the bed talking to me i opened a eye to look at her and i came out with aww norr not you again shes started laughing and asked if we had met before i said no iv been dreaming of this for the last 5 weeks :S then i could the nurses talking about going on holiday and a nurse walked in with a squeeky trolley thing is no one was in the room i told darren i hated him when he asked really i said nor i dispise you i was like the bloody exorcist i remember a nurse saying its time to push and my dad walked out and i screamed for him but he was never in the room my aunty sarah holding my hand and shouting at me not to scratch her nail varnish she had just done it and my aunty gills outside the room crying her eyes out still shitting herself im glad she took the stronger drugs i stuck with gas and air i was given pethidine but it was given too late and only kicked in after the birth

heres our little girl

and yes she does have bilateral cleft lip and hard and soft palates

OUR 3D SCAN

20th May 2010 because our baby would be born with differences we needed a 3d scan to see the extent of the problem we had to go to Newcastles royal victoria infirmary (RVI) it was the most mind blowing thing I've seen. If you think seeing your baby in 2d was amazing 3d tops it the detail is amazing and we were told it definitely has a bilateral cleft lip but couldn't say whether it will have the cleft palate/s and I can finally stop saying it we were told it really is a she. WE'RE HAVING A GIRL.

IM PREGNANT

At the beginning of February 2010 i found out I'm pregnant yay to us i didn't get a scan until April when i was 15+4 weeks. the scan was amazing baby was wriggling around I almost burst out crying until the nurse said she needed a second opinion and walked out leaving a still image on screen of which the baby had its hands in front of its nose making me panic that it has a wolf snout type nose lol. A second nurse came in with the first nurse and took over the scan. she then sat back and told us ... that our baby would be born with bilateral cleft lip with possible involvement of the palate/s I was devastated. having grew up with a cousin who has unilateral cleft lip and hard and soft palates and he had only just had his very last op i knew that there would be operations, speech problems and school teasing but that was being on the outside looking in and as I'm about to tell you it was nothing like that far from it.

and the nurses kept saying such things as SHE doesn't want to keep still does SHE and SHE doesn't want her photos being taken hint hint.