10th July 2021 we had a beautiful little boy called Louie.

At my 20 weeks scan we found out our little boy was diagnosed with complete heart block,  which was to late to try and reverse as his hearts was at 75bpm. Being told we don't know how this pregnancy will go and if he's stable enough and all goes well you will need an c-section and heart stays above 70 he will need a pacemaker at some point in his life depending how high or low his heart rate gets.
So I had to have twice weekly scans at burnley women's and every 4th week over to Liverpool womens .
His heart kept dropping and dropping each week , many drs telling me he can die in utero.
Each week I was so upset his heart was dropping lower and lower. This was my first ever pregnancy I was heart broken , a nervous wreck each week waiting to see how his heart was getting on. Later on in the pregnancy he got bright bowel and bright kidneys and larger heart towards the end getting larger so I had to go to Liverpool more times a month to see what was going on and for different opinions.
Saturday 10th July 2021 36+4 weeks
Was a normal day, my partner chris had gone to work
I went in for my 2nd steroid injection for my babies Lungs as I needed a c section at 37 weeks
I woke up and something didn't feel right,  I had the 1st steroid day before and movements had slowed down that morning I felt nothing so went in and explained , shoved my hair up and my comfies and up I went to the womens unit. They did a doppler on him about 8 times, His heart had dropped to 42bpm!! so had to get the more detailed scanner , this was a weekend no1 was in who knew what to do, no1 was in that could deliver my baby as he was such a complex case hour later Liverpool said bring me over here .

But little did I know on the 10th July I would of been took in an ambulance to Liverpool womens for an emergency c section! Luckily I had packed my case for a 2night stay weeks before after being told he might have to come at anytime his hearts starts to fail...so my partner followed us after ringing him I think we're gunna have our boy today I was shocked , not prepared or anything.
So we finally got to Liverpool another detailed scan said he was developing fluid around his heart and organs she said calm as anything " he needs be delivered today like asap"
I'm worried sick my babies heart is dropping , is he OK? Is he going to make it ? So they had to find me a room and get me gowned up get me ready and down to theatre we went , epidural and 8.21pm my boy arrived. There was no sound I remember crying why Is he not crying?? Panicking... they got him round and to cry then his heart dropped and dropped down to 32bpm!!! they whisked him off and away he went in to nicu. I seen him for 10 seconds a quick touch with the nurse holding him with a oxygen mask on, while they took the quickest picture ever.
As you can imagine I was worried sick but thought he's crying and he's in the best place surely he's ok... He never come back in... they sewed me up I thought ok ill get back to the ward and he will be there  and fine with dad and I can have a cuddle after recovering. He wasn't there he was still in nicu telling me he's not had any surgey so I'm thinking where the hell is he then why haven't I seen him , I got no recovery toast or drink hadn't eaten that morning cause I was worried and wasn't allowed anything before surgery . I was exhausted
Finally got to see my boy at 1am !
Dad got to see him first and spend time with him.
I was heart broken , there he was in a little incubator 100s of wires and tubes and people around him.
They tried loads with him and lots of meds and gasses he was deteriating hour by hour 6am they got him in special travel incubator and off to Alderhey children's hospital he went. They said there's nothing else we can do here so he has to go alderhey . My world broke , a child's hospital cause no1 in the women's could help and he was going grey and grey each minute I seen him. I knew something wasn't right. I couldn't go cause I was in so much pain and wasn't allowed to leave so I had to go back the ward/ room lonley no partner and no baby and try and sleep.
11th July I had a phone call asking for my consent... I was thinking what the hell???....to do a external pacemaker so I knew he was poorly cause not even 24 hours and he needed this external pacer. So of corse I agreed , I didn't expect he would need it within 24 hours!
11th July 11.30am I cried to see my baby I needed to see him after his procedure, so Liverpool womens was going to send me in a taxi over to him I declined as I didn't feel safe in taxi on my own after a c section if anything happened ,so my partner come from Alderhey and got me and took me up to see our poorly baby boy . I walked up them stairs the adrenaline in me I forgot I had a C section I was on strong pain killers. Chris said you need a wheel chair,  that was the last thing on my mind feeling sorry for myself I walked as fast as could down that corridor got to see my baby all the meds and wires and beeps and team around I cried I kissed his head.  He was so swollen looked like a complete different child! I was in agony and the hospital rang said I need to go back for top up pain killer and have a rest so I went back around 7pm had the pain killers and what rest I could and discharged myself on the 12th but earlier that morning I got a phone call to say he was deteriating again his leg went black then asked for my consent for a internal pacemaker. So he went on to have this, his heart agreed he then caught sepsis in his leg where it had gone black , his pacer was put in at 140bpm his heart got thick so they turned it down cause it began to get thicker and thicker so kept turning it down and down due to workinh to hard ,got to 80bpm and he settled with this . But he now has cardiomyopathy. Being told his heart was getting thicker and if it over takes there's nothing they could do cause he wasn't putting weight on and they even contacted Newcastle but he didn't meet the criteria for a heart transplant.
As you can imagine my heart broke hearing them words there's nothing else we can do if his heart continues to get thicker and he doesn't gain weight and Newcastle cant do anything.
My world fell apart , making hand and foot prints for memories. I lost so much weight I was depressed but I had to keep going for my baby!
His right lung had collapsed and he had wet Lungs ,he had a leaky valve so had to go back down to theatre to have a PDA device band fitted in to his heart to stop this leaking.
This worked,  his pacer was fine . He has a VSD.
He had been on ventilator from day one :( , he failed 3 extubations and the 4th he pulled his own breathing tube out, he went grey and needed a blood transfusion and tube had to go back in . Lost count of how many transfusion he's had and how many lines he's had in his body!
During theese months they turned his bipap to cpap breathing.  But didn't take his tube out just incase he couldn't cope again .. and on day 2 he couldn't cope he went grey again and needed a blood transfusion and back on full ventilation .
So after pulling his own tube out and again went grey and blue and emergency buzzer pulled he failed it again so they managed to put a mouth tube in to keep him alive the morning after they said he needs a tracheostomy, this was very overwhelming news to us as we knew he would need a pacemaker and thought that's it and he would be home. But thinking omg my poor tiny tiny baby needing a tracheostomy. He was skin and bones struggling to put weight on. 9th November 21 louie got his tracheostomy.
He was struggling with his feeding and being sick so he got a peg tube in belly on 7th March 22.
Louie caught covid at 7 days old we had to go home home and isolate for 11days
On the 15th July my grandad sadly passed away , louie is his first great grandchild he unfortunately never got to meet him :( no1 had met him yet as we were in ICU.
On the Friday 30th july was my grandads funeral I could not attend as we was isolating :(  my dad went to his own dad's funeral on the Friday 30th July and was fine went to the after do and went home.
Then On the Saturday 31st July at 6.30am my dad had a massage major life changing stroke . Words can't describe how heart breaking this is ,my dad is my best friend my whole world . He had have emergency life saving surgery on his skull a craniotomy, They had to take away half of his skull and suck out the clot . They couldn't save his skull so he was waiting for a metal plate . He has lost use of all his right side and speech only saying a few words , memory has gone and some site had gone :( he now has irregular heart.
He was in a rehabilitation home till december  and having physio ,He has worked all his life and couldn't wait to be a grandad and look after my son while I went back to work but this is unfortunately not going to be able to happen :( he needs so much rehabilitation its life changing he won't be able to drive again no1 knows if he will get his right side back again and be able to walk fully , his speech isn't the same . I'm still in shock this has happened to my dad he is the nicest caring man in the world and so fit and out going! And his life has been taken away just like that! We all work we get help with nothing.  My mum lives in a up and down house so my dad won't be able to use normal facilities in this house again so will have to do a full refurbishment to the kitchen living room for a bed and wet room And have ramps and things put in to place and then pay for extra physio as you dont get free physio forever , hes trying his best to walk he just wants to hold louie properly hes only met him 3 times ! Due to covid the hospital is very strict and it's getting transport over as my dad cant get in a car unless he helped by people which takes ages,  And same at our house to help him come down to see his grandson we dont live ona flat road so we need to do adjustments for both louies pram with oxygen on it and my dads wheelchair. I'd love to be able to buy an electric wheelchair for my dad .
My parter is self employed , so he doesn't get any help or paternity or any paid holidays and we have bills to pay so he had to unfortunately go back to work when louie was 4 week old , but due to being in Alderhey for just under 10months now!! And no date for home yet!!!!! As we are awaiting a Mickey button and scope to see how his airway is. And now my maternity has finished we are struggling to keep a roof over our heads! That's the last thing we want is to loose our home when our child is sick in hospital and no maternity coming through and we can't get help with grants due to chris being self employed and me working. Chris can't take any more time off work and missing day time with his son and all the milestones he's missed out on already with him, chris goes to work mon-fri and has every weekend with louie and sees him every night after work which is after 6pm then gets to see louie till he goes sleep till about 9 , then we go across to mac house and sleep and off he goes to work at 5/6am and I come back over . We are awaiting a care package! As my son needs to be watched 24 hours cause of his tracheostomy and the pulling and being sick and the peg feeding tube. So I physically can't do a waking shift and Chris is working and even if we was home my mum is know my dad's full time carer so I can't rely on my mum and dad for help.
13th April 22 louie went in to septic shock and we ended up in ICU for 5 days and then HDU for over a week , so chris had to take this time off work as louie went lifeless and grey and emergency buzzer had to be pulled, they unfortunately had to put his pacemaker up to 135 bpm as his heart took a hit the septic shock and and functions went in to failure and his liver went to over 10cms!! And he now has calcium stones on his kidneys as he went in to dehydration and temp over 39° was so lifeless he needed a IO line drilled in to his leg and put 2kg on in fluid.
This just proves how louie can change in a split second and tiny infection for him is massive , he had been failed cause he was dehydrated and went in to septic shock and his heart took a hit dispite telling the drs something isnt right the night before.
My son is now under ENT , respiratory,  cardiologists and now kidney clinic , and when we finally do get discharged it's all over here in Alderhey still. So all the travelling we will do. We have to keep en eye on his heart on function and if it gets enlarged which this is so worrying. 

I want to raise money to help us keep a roof over our head, aswell as all the energy bills going up , we will have oxygen on 24/7 , suction machine, sats monitor , feeding pump , nebuliser.
When we finally get home chris can have a couple of weeks off work fully and not worrying about bills to pay and we can settle in and catch up as a family in our own home and enjoy the time we've missed (10 months so far) and let us be with our son as a family,And later in the long run when we finally get home for good, my dad has a wheelchair and louie has a tracheostomy and peg and all the equipment we have to travel with , i want to make memories together as a family and let my dad come with us having days out and let louie live a normal life and also my dad, help adapt our home for my dad and louie cause he is oxygen dependent and rely on this to keep him alive. 

In the future he needs a mickey button and pacemaker upgrade as this battery on this one has 2 years left and he needs a longer life battery and an extra lead to help with the function of his heart.

My son has low muscle tone due to being in ICU for 5 months sedated and paralysed, so we are awaiting pram from wheelchair services .I want the best for my son and special adapted seating isn't free as we don't meet the criteria due to chris being self employed we don't get anything or any help.

Louie is only 10month and he's been through so much in his short little life already-
External and internal pacemaker, a PDA band , has a VSD , had 101 lines and a broviac line, a tracheostomy,  a PEG and heart catheter through his neck ,101 chest infections, cardiomyopathy, got a collapsed lung at the top hyper inflated in the middle so his rib cage sticking out on the right side and the bottom has to much air in it , sepsis TWICE , low muscle tone and very delayed development. So love to be able to take him specialist physio/swimming and baby groups.

I just want to give my son the best life possible , let my dad keep living his life , and not have any stress worrying over bills for the first month we get home to enjoy as a family and let chris actually have time off work and spend time together as a family.
We aren't entitled to anything due to chris being self employed and me on maternity which has now ended and we have no coming home date :(
He's had the worst start in life has our little man! I want to give him the best start on life when we get home