A year on

Hoping that Oliver would just magically awaken one day and be just like all the other babies slipped away week by week, four weeks to the day of him being in the neonatal unit we were told that the consultants wanted to talk to us as our results were in. 

Mike hadn’t come into the unit that morning as he was trying to sort out our front so that when we eventually managed to get Oliver back home we didn’t have to fight the bushes to get him out of the car.  Before leaving Mike had joked saying ‘I bet because I’m not coming up they have the results’

We’d established a very hamster wheel routine of get up, eat a bit of breakfast, go to the hospital, stay until around 1. Go home do a few bits and then either go back for the late afternoon feed or the late night feed and a cuddle. Then go home and sleep. 

Or at least try and sleep.

It’s not so easy to sleep when the little sausage you carried for 9 months isn’t where he was supposed to be. 

So this timea year ago we were hopeful we’d get some answers and be able to start making some plans. 

We’d been told what they were testing for so had already done a little bit of research but because there were a few things we couldn’t single into anything. We’d joined a hypotonia group as we knew he was floppy and we were reaching out to see if there’s anything we could be doing to help him.

Ward round was about to happen so after frantically messaging Mike and ringing him to tell him to get up to the hospital because they have the results, we had an agonising wait while they checked over everyone else’s baby and we waited in the parents kitchen.

We were called through and sat down and explained that the results had come back. 

‘The results have come back and he has something called prader willi syndrome’ 

You know how in films when people are told about life changing news there’s a kind of muffled silence where your brain is processing news and can’t take anything else in – well that happened

The nurse who we spent most of our time with cried. I cried. 

Looking back, I thought at that moment I was sad. That I was upset that we’d not got what we wanted. We wanted a baby that we could just take home. I realise now that the cry was relief. There was no more unknown of ‘what if?’ , ‘why?’ , ‘will he come home?’ , ‘if he does will it be by Christmas?’ There was a new unknown but we knew there’d be a path that others had been down.

We made a call to my dad and Mikes mum as they were in work and then went off to do the visiting to give out our news. A comment from Mikes Mum sticks with me, ‘you seem ok with it?’ 

I think every couple are different when receiving life changing news. Some retreat, some take a while to accept, some go into denial. I’m fortunate enough to be in a relationship where we both have a mind set of ‘let’s just get on with it’. This news had the potential to make or break us and all it did was make us stronger.

Being compulsive planners we went straight off and found groups. Every prader willi syndrome group on Facebook and the welcome and support that we received off the families was amazing.

When I put up our diagnosis on Facebook I mentioned that if anyone has any questions please feel free to ask. I still stand by this. After the status went up and the likes etc that was a perceived support system. Only one person sent me a message to talk to me privately about it and ask the questions that I think most people are frightened to ask. Please, please never be frightened to ask about it, it’s also never too late to ask. Don’t think because you didn’t ask questions at the beginning that you can’t ask now.

In the past year we’ve come so far, I’ve had wobbles but when I look at where we started and how Oliver didn’t move and wasn’t able to feed and now we have a baby that you can’t take your eyes off because he can roll himself to the hallway, we may not be crawling but we are sitting independently and we can shout dada over and over and over. Sometimes we remember to shout mum but it’s mainly dada. 

The prader willi world we thought we were entering when we were diagnosed is so far from the truth of what we are currently living.

For any newly diagnosed parents. As scary as everything seems now, I can promise that a year down the line you may not have forgotten all those feelings of worry but they will stop. I now have a crazy one year old, who other than being a bit slower with some of the milestones that babies are ‘supposed’ to have hit by now, you wouldn’t have a clue that anything was ‘up’ with him. He smiles and laughs more than any other baby I’ve come across and he makes me feel proud every single day. 

For those that have stuck by the three of us all the way through and regularly ask the questions about what’s going on and how is he and how we are collectively, thank you. It’s not always easy but having people that are supportive makes everything so much easier. 

Oliver at 1 month, 6 months and 1 year old

1st visit to Alder Hey Hospital 

So today we went to Alder Hey for the first time, we expect that we will be going for visits here regularly.

Today’s visit was regarding Oliver’s testes. When he was born it was noticed by the midwives that they hadn’t descended and after a visit down to the high dependency unit they arranged a scan. At first we were told that he may not have any, after they felt around and couldn’t feel anything. The scan showed that he did indeed have them (phew!) but they were tucked up pretty high. So they arranged a referral to Alder Hey as they said he may need an operation to bring them down.

So we arrived at Alder Hey, a little apprehensive, as the last thing we wanted to hear was that he needed to have an operation. After a relatively short wait we went in to see the consultant. Explained that he had prader willi, as this hadn’t been passed over in the referral as it happened before the diagnosis. He then understood why the testes were undescended and when we explained they had to scan to find them he told us that it would potentially be two or three ops.

We popped Oliver on the table so that he could have little feel to check for any movement, low and behold they’ve moved!! They’ve started to drop down and aren’t that far away from come down in his little empty pouch! We’ve been told to come back in six months to reassess where they are and what may need doing but we have our fingers crossed that they will pop down into place and we won’t need an Op.

Oliver 1 – 0 prader willi

The beginning is a great place to start…

Oliver was born on the 20th October 2016 at exactly 5am. I had been induced due to a number of complications during the pregnancy. After 12 hours of labour (more or less to the minute) he arrived, he didn’t really make any noise but he was allowed to be placed straight on to my chest just before dad fainted….for the second time.

People say we had a rocky start to being parents…Mike fainting twice, the first time hitting a wall with his head and giving himself whip lash. Oliver being taken off us not once but twice, I was ill, they didn’t end up finding the cause of Sepsis but after a week and a half of being in hospital I was allowed home

So a few steps back. Just after the second time Mike fainted, I didn’t really notice this due to being completely overwhelmed with the baby that I had spent months thinking about, planning for, planning our future. After some tea and toast we were moved back up stairs and put back in our room, I never went to sleep. I just peered over the cot at him wondering how on earth I’d managed to create such a tiny perfect thing, whilst also wondering how he ever managed to fit inside me.

I’m not too sure how long after but one of the support team came in to help me breastfeed. Oliver didn’t take to it but I explained that I really wanted to, so they fed him with donor milk from a small cup (something I never even realised that you could donate) he appeared to be struggling but the lady had said that he sounded a bit mucusey so we put it down to that. The next few feeds were the same but he appeared to be taking some. He was also struggling to maintain his temperature, so had to be put on a hot cot. We were told that once he stabled his temperature and had been off the hot cot for 48 hours we could go home. This was what we were working towards.

The following day Mike went home to sort our dog out (Roo) and I was left alone with Oliver. I continued to express as much milk as possible (this is tiny amounts when you first have your baby) so that he had as much as possible off me and then would be topped up by donor milk. That night a paediatrician came in to check him over as it had been noted that his feeding wasn’t great. His overall tone was pretty poor as well but being a first time mum and never really seeing a baby that had just been born I had put it down to just being tired after birth. Oliver also had undecended testes. They mentioned that they thought he may have an infection so it best to take him away, they said he should be back in an hour (it being 4am I went straight back to sleep and being told by so many people to get sleep when you can I thought it an ideal opportunity) when I woke at 6 and he still hadn’t come back I panicked, text Mike to tell him they had taken him off us and I was going to try and find out what was going on. He walked into me crying walking down the corridor as I had found out Oliver was being kept down in High Dependency.

High dependency is not what you want to be told about while you are highly emotional and tired. Mike came down to the unit and we sat with him. We knew when he was born he was a small baby (all 5lb8oz of him) but compared to all of the other babies in the unit he looked huge! After two days of him being down there he came back upstairs to us and I was moved into a different part of the ward, where babies who needed slightly more care are kept. He now had an NG tube, we had spent two days feeding through this on the unit but we were told that we weren’t allowed to do it ‘behind closed doors’ up on the ward. I still don’t understand this. So coupled with the fact that we were wary of taking him out of his hot cot in fear of him getting cold, we also couldn’t feed him. These problems on their own are difficult enough but combined meant that we mostly just tickled his head, we occasionally got him out for a cuddle but he was wrapped up in so many blankets that we felt as though we were just holding blankets. Feeling like a mum or dad isn’t easy when you can’t do ‘normal’ things.

By this point I was so tired, emotionally and physically. It’s hard being on a maternity ward where you can hear all babies crying and you have a baby that isn’t make any noise and that you worry about cuddling and you can’t feed. I had a headache and asked for something for it. Later that night a nurse commented on my breathing and how it seemed laboured. After a quick temp, pulse and blood pressure check they started to worry. A heart rate of 130+ when not moving and a temp of over 38 they pumped some fluids in through an IV and then checked me every hour or so. Again Mike had gone home and when he came back something had changed. My pulse slowly got faster and my temperature didn’t shift. They took bloods but couldn’t work out what was wrong. Looking back now I can see that I really was poorly but didn’t realise it. My only focus was Oliver. They couldn’t look after me on the ward so sent me back down to labour ward where they could keep a closer eye on me. While we were down there Oliver came off the hot cot and we were so excited (we figured 48 hours and we would be going home and starting off life as a real family) the next day we went upstairs and Oliver hadn’t maintained his temperature and his tone hadn’t improved so they said they had someone come and check him over and continue giving him his antibiotics.

Later that day they sent one of the neonatal nurses up to check over Oliver and she explained that he was going to go for a scan. I queried why and said that we had been told his testes were there they were just tucked right up. She explained that the last brain scan that they had done wasn’t clear enough so they needed to repeat it. I stopped her and said that we didn’t know that he had already had one and asked why they were doing it. She explained that the low tone/floppiness that he has is linked to brain damage. To say that this knocked the wind out of our sails was an understatement. I’d never seen Mike cry before but the pair of us curled up together on the bed and sobbed and tried to process what was going on. We had previously googled ‘floppy baby’ and we learnt that medically this is called hypotonia and we looked into it and had realised that this problem happens a lot and that he would probably progress a lot slower than other babies. Brain damage was certainly not on our initial plan when having a baby. Mike had him growing up and playing for Everton and we would never have to work again because our boy would look after us. The results came back and we were told everything was clear. At this point our entire attitude and outlook changed. Brain damage would have been a real blow….anything else we could deal with now.

Oliver never came back up to my room he was kept down stairs in the high dependency unit. We were told that Oliver was going to have some genetic tests. Prader Willi Syndrome and Noonans were mentioned but they weren’t sure.  After a week of my antibiotics my bloods had improved, I had no headache and was medically fine. They said that I was allowed to go home if I wanted but they weren’t kicking me out. Sleeping in a room with a quiet baby that isn’t feeding is one thing, sleeping in a room without your baby for five nights while you listen to all the other babies cry is heart breaking and a constant reminder of how your start to being a Mum is not how it’s told in all the books or shown in all the films. Leaving the hospital that night without him was awful, I cried.

So far this story has been all doom and gloom. There were things that I haven’t mentioned that stopped me falling into a complete pity pit. The consultants that did the ward round started noticing differences in Oliver. We thought that we could see things but being a parent I think you tend to magnify every small thing that you see. His movement had already started to improve. Possibly due to the pulling on the arms that we were doing and the different things that the physio team had showed us how to do.

Oliver stayed in for four weeks. On the day that he was due, I arrived at the hospital and one of the nurses queried where Mike was. I explained that he was sorting out the bushes on the drive so that when we eventually got Oliver home it was easier to get him in and out of the car, she told me that the results were in and the consultant wanted to see us. Oddly we had a conversation that morning and Mike had said I bet because I’m not coming in you will get the results (there is a pattern of when he’s not there something happens) After an agonising wait we were sat down and we were told that his results show that he has Prader Willi Syndrome. We were shocked by it, I cried (before I was pregnant crying was a rarity from me) we were told to go home and process it and tell family. So we did. We both cried a bit as we left the hospital. I rang my dad and told him, his attitude was that’s fine we can work with that. By the time we got to Mike’s Dads we were ‘ok’ we told his dad with no tears, then to see my mum and sisters, again no tears. Mikes sisters, one had tears and the other didn’t…or at least not while we were with her. We explained to everyone that we have a bit of mourning to do for the child we thought we were going to have but we know that we were going on another journey. We explained about the condition and how he will slowly build up and catch up with other children and the issues that we will have with food.

I’ve questioned why us, I didn’t do anything through the pregnancy that I shouldn’t have. I’ve witnessed other couples arguing over who was going for a smoke first, I know of others that drank more than the occasional glass of wine. They came in and had their baby after us and left before us. I’ve realised though that those families probably wouldn’t have the same strength as we have and as much to offer him. I’ve been told on more than one occasion that children with problems only go to special families. Before Oliver came along I wondered how families cope with children that are disabled or special needs. They don’t cope they embrace it because at the end of the day the child is there’s and they will love it unconditionally.

We found a facebook group for PWS families and then from there on we were added to a different private group for UK families. The support and advice that they gave us was invaluable. By the time we had gone back to the hospital the following day ( we had been up late afternoon the day before between visiting families) we had already geared ourselves up and asked when we could get growth hormone and had a list of questions. The team looking after him were shocked to say the least. I think they expected our world to crumble a bit, which I understand but that’s really not how we work as a unit. A conversation later that day with the nurse who had told us about the brain damage possibility probably made it more clear why we were ‘ok’ with the diagnosis. I work for a Children’s hospice. I see families that lose their children and are dealt the worst cards in life. Having a child that may not be ‘normal’ but will live a full life is far better in our eyes than being dealt something much worse.
We are at home now, after the phone call that we received saying when do you want to take him home we’ve not looked back. We have a team of people coming out to help him. He’s still being tube fed but now at six weeks old we can’t believe that the baby that we started off with is now kicking his legs and moving his arms around. Watching the staff that come out react to how well he is doing is amazing and fills us both with pride. He can take 5mls in a bottle which isn’t much but it’s something, we don’t know how long the process is going to be but we are getting there. As I am typing he’s under his play gym trying to get the little mirror. He smiles, I’m not too sure if it’s at me or just while he’s around me but that doesn’t matter it’s the smile and it’s for me in my eyes.

I’ve started this blog after having a bad day emotionally. I’m tired, as any new parent is but I’ve figured that if I write through both my bad days and good days. I will always be able to see how far we have come and hopefully be able to show other new PWS diagnosed families how everyone’s emotions bounce but there is always positives that outweigh the occasional bad day you have

This journey that we are about to embark on isn’t what we had planned when we found out that we were pregnant but I can tell you that I wouldn’t swap this little chap for anything