Passing the 1st centile line for weight

Now without getting into a breast is best debate. (A fellow blogger and mum friend from The Unit at Arrowe park has looked at this debate see Here) I’d said all along that I’d like to give breast feeding a go and I’ll stick by that. It’s not everyone’s preference and I fully understand that.

When Oliver was born he wouldn’t latch. Most babies with PWS aren’t able to latch and we very quickly learnt that he wouldn’t be able to, so I started expressing. For ten weeks I’ve continued to express. I’ve gone through days of mass milk production and days where I’ve had barely anything and cried through them. When they talk to you in the hospital they don’t tell you about the mental strain that your milk supply dropping can cause, they also don’t tell you about how tiring expressing for a baby with an NG tube can be.

Babies who are formula fed have their bottles cleaned and filled with sterilised water ready for a feed, pop the powder in shake and go! Some even easier, they buy ready made formula and pour into their sterilised bottles and are good to go.

Breastfed babies are a little different but mum has their supply with her and can fed on que.

Mums who choose to solely express – generally become the insane member of the crowd. We still have all the sterilising issues of formula fed parents but we also have to sterilise our pumps that are being used 6/8/12 times a day.

Mums who express and NG feed have the same as above but we also have two different syringes to keep clean and carry with us and litmus paper to test the tube before feeds.

My original routine when in hospital was express when my boobs filled up and I had the opportunity to. Being in the hospital for a good chunk of the day meant that I could use their machines which are better than most of the brands that spring to mind when you think of baby bottles and accessories. I produced so much in the first instance that I filled a shelf in the unit freezer. This changed when I came home. It dropped off significantly and I had to put a few formula feeds in to keep us going. Then after being giving domperidone by the doctors my supply boosted back up, not quite to what it was but enough for me to be able to put a bottle in the freezer here and there. We came home and Oliver was on around 76mls a feed and is now on 116mls a feed. There’s a huge difference there in quantity over 6 feeds a day. I’ve started to get to a point where I can’t do the overnight expressing because I’m so tired. It’s also incredibly draining and lots of people don’t understand, especially those who haven’t breast fed. A feed now takes over an hour. By the time we try a bottle feed, get his expressed milk through the tube and then express enough for the next feed that’s at least an hour. So six hours (minimum) out of twenty four I’m feeding or preparing a feed, if you add on the eight hours sleep you’re supposed to get as well there’s fourteen of my twenty four hours gone. Ten hours left to do everything else. People seem to be frustrated with me not visiting or getting time with me. I now have a time slot of around three hours where I can do things comfortably. I can do things for longer but the discomfort that I have isn’t really worth it.

I’d started having doubts and thought about slowly reducing my breast milk feeds down to try and make other people happy. An odd thought to have to some people but until you’ve been doing what I’ve been doing and having restrictions you cannot really judge my thought process. With Mike back at work in January I know I can’t carry on at the rate I’ve been going. I’ll never be able to leave the house between feeds, expressing, appointments, SALT visits, dietician and neonatal nurse visits and doing household chores – I should probably remind people that it’s my choice and until I decide to stop then you have to fit in with Oliver’s and my routine.

This week oliver has finally passed the 1st centile line.

Both I and the dietician cheered when this showed up on her graph. Olivers weight has been so low since birth that he didn’t even follow the very bottom line, he was creating his own line. The neonatal consultant had even mentioned that he may need to go on a higher calorific feed once a day if his weight didn’t pick up.

I’ve no idea if formula would have had the same/better/worse effect. I just know that all of my efforts are working and that’s good enough reason for me to hang in there. I know that my milk will start to drop off and probably eventually disappear to nothing over the coming months but until then I’m going to stick with it.

I think that it’s odd that he’s going to go from one extreme to another, struggling to feed to not wanting to do anything but feed. He’s doing really well feed wise now, we’re building him up and he now takes around 30-35 every feed by bottle and we’re going to start trying to add another feed in to build his stamina up. He’s finally started letting us know when he’s hungry as well which is a huge step forward for us.

We’ve managed to cross off another goal and now we’re on our way up to between the 2nd and 9th centile to fit in with his length. Hopefully this won’t take long! 

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