One Year Ago........

One year ago today..........we walked our 4 and a half month old son out of hospital and took him home for the first time.

A day at times we wondered if we would ever see, and a day I can now look back at and feel such pride at.

Bringing Hugo home was such an amazing and special time for us and finally completed our family.

Hugo's first photo at home

In our homecoming we cherished our little boy and made a vow that we would always do EVERYTHING we could to try and protect him and keep him safe.

This has so far resulted in Hugo only having one re-admission to hospital, something we are very grateful for and a big acheivement in the world of CHARGE.

Last weekend we took Hugo to his first family get together. It was a day of fun, laughter and enjoyment and Hugo stole the show. His older cousin's looked after him, played with him and cared for him with such love and devotion, it made us very proud of all of them.

Mummy and Hugo at the family get together

Thoughts

Sometimes you wonder why things happen to you.......

Every day I wake up and see my son and I look at him and say a little prayer of thanks that he is with us.
I have never wanted anything more than having my own babies and I am truly blessed with Hugo.

He might not be able to see me properly, or hear everything I say to him, he might sometimes hurt and feel pain, but he never fails to smile.

As he gets bigger and stronger and develops more his personality shines through, John and I are lucky enough to already have a caring, gentle, funny little boy who truly lights up our days.

Claire.x

Look what someone learned today.....

Hugo decided this morning to back crawl out the lounge - look where I found him!!!

John and me Expecting Hugo

My Hugo bump!

Until 13th January 2009 I had never heard of CHARGE syndrome. Its funny how quick life changes and now CHARGE is such a huge part of mine and my Husband John’s life.

Hugo James was born on January 10th 2009, our first child and as we now put it, he threw us in at the deep end!

It was so weird but I knew from early on that we were having a boy. I cant tell you why I knew, some people perhaps don’t believe it, but I knew he was a boy and that is why at about 14 weeks pregnant I named the bump Hugo.

During my 20 week scan it was detected there was a problem with the baby’s heart, we were referred to Great Ormond Street Hospital and were told that he had a very serious heart condition called Tetralogy of Fallot.
The doctors and nurses were fantastic and extremely helpful in giving us information, we were offered some different options. Because of the type of condition there was a greater risk that the baby could have a genetic disorder such as Di-George syndrome or Downs syndrome. An amniocentesis ruled out Downs syndrome and Di - George syndrome. We continued with the pregnancy blissfully unaware of what lay ahead - and looking back now, for that we are incredibly grateful.

Four days before Hugo’s birth John was diagnosed with chicken pox and told he could not be present at Hugo’s birth, to say we were devastated was an under statement!
On Friday 9th January 2009 my waters broke. When I look back at that night I often reflect on what a strong and brave man I married. It must have been so hard for John watching me leave while knowing that he was going to miss his first child’s birth, especially considering the situation we were in.
It broke my heart saying goodbye to him and even now when I think of it I always feel sad, it almost seems an omen of what was to come to us.
We had planned everything so carefully for our stay away from home and Hugo’s birth, but never did it occur to us that anything would come between John seeing Hugo born.

In labour waiting for Hugo to arrive!

Preparing to go to theatre

Hugo James was born on 10th January 2009 at 6.17pm by emergency caesarean weighing 7lb 2½oz, he was pink in colour, had no apparent blueness and looked to me perfect, it took me a few seconds to hear him, his cry was so quiet. He was shown to me and I noticed that one of his eyes was wide open, while the other tightly shut. These were my only fleeting concerns. I was shown him quickly and then he was whisked off to SCBU where he was put onto prostaglanson drug to help keep his ducts open and his heart working. After seeing him in SCBU I noticed that one of his ears was a different shape to the other.

Newborn Hugo

Hugo On SCBU

The following day Hugo was transferred by the Children’s Acute Transport Service to Great Ormond Street hospital. One of the CATS team mentioned to us that it had taken a while for them to pass a tube down Hugo’s nasal passage, she asked us if we had noticed any thing different about Hugo, we mentioned his ears but that was all.
Thankfully the hospital had allowed me to go with him only 24 hours after my caesarean, promising to take it easy and not over do it, John was still not allowed to come with us so my Mum also came with us. We arrived late at night and it was very daunting walking through that famous hospital with a team of professionals trying to explain what was about to happen. After seeing Hugo in the cardiac intensive care unit I left for some rest and sleep.

The following morning on my arrival at Hugo’s bed side he had a horrible looking mask over his face, I was told this was CPAP and was helping him to breath a bit better, it looked horrible and was squashing his nose, Hugo blatantly didn’t like it either.

Hugo on CPAP my first hold with him

Later that day Hugo had to be fully ventilated after dropping his sats and becoming bradycardic during an ultrasound. We were told that while doing the ultrasound scan on Hugo they found he only had one kidney, he had also had eye tests which showed him to have significant sight problems and it was likely he would be severely sighted possibly blind.

It was at this point I started to become a little concerned that things were not quite as straightforward as expected.

That evening John was finally allowed to come to the hospital after getting the all clear and I had to tell him the news about Hugo.

The following day we were told that Hugo was showing all signs of having CHARGE syndrome and was very ill. I think that any one of the parents with a CHARGE child will say the same, nothing prepares you for finding out that your child has a something wrong with them. You have two choices, fall apart, or pick yourself up and carry on.
We took the latter.

Hugo’s TOF had changed from first diagnosis and he now had Pulmonary Atresia, not stenosis. This meant that he had to have a shunt inserted ASAP.
A day later he went down for surgery to insert a shunt allowing blood to flow from the heart to the lungs. The operation went well and within days Hugo had come off the ventilator and was on the road to recovery.

2 days after surgery to insert a central shunt.

Our first family photo and hold of our baby boy

Hugo one week old

At 7 days old Hugo was moved off of the cardiac intensive care and up to the cardiac ward HDU.
We were making plans to return home with our son and loved calling family to let them know how well everything was going.

Hugo at 8 days old, in our eyes we were on our way home - how wrong could we be?

Hugo and his Daddy having a lovely cuddle

On Monday 19th January Hugo went into respiratory arrest, he collapsed in John’s arms and a crash call was given, very quickly the room was filled with people and they were trying to resuscitate our baby. Hugo was rushed back into CICU. This was the start of four months of living in the unknown.

For 8 weeks Hugo remained fully ventilated on full life support, he had numerous procedures to try and find out what was stopping him from staying off ventilation. We were told he would need to have a tracheotomy, (thankfully he didn’t) he had queried aspiration, was diagnosed with vocal cord palsy, facial palsy, had a ph swallow study, and 48 hour ECG tapes.

An MRI diagnosed a small cerebellum and Brain stem hyperplasia - Dandy Walker syndrome. We were told he was on the severe spectrum and would probably struggle with mobility and learning difficulties.
He was diagnosed with Hypoparathyrodisim, and put onto supplements.

Hugo continued to deteriorated and became weaker and weaker. During a routine procedure to insert a new central line Hugo had a cardiac arrest.
Things really didn’t look very good and we now ‘lived’ at GOSH. I never left Hugo’s bed and John only went back home when we needed to sort out our pets who were in kennels.

Hugo and Mummy in CICU

Hugo managed to come off ventilation on 19/02 onto a CPAP prong, he came off CPAP on 23/02 and to our delight and was moved off CICU to HDU on 2/03.
We were understandably nervous about him leaving intensive care and the one to one nursing, we also didn’t feel that he was strong enough, something both John and I felt. For some reason we just knew that Hugo still wasn’t right and call it instinct but we had a feeling our journey wasn’t over.

For three weeks Hugo remained on the Cardiac ward, he had major feeding issues, failed to tolerate volumes and rate changes, which meant he frequently vomited. He continued to have de-sats and go grey/blue, many times he was checked over by doctors but no one could say why it was happening and so we were slowly being pushed in the direction of home. We were told Hugo needed to have a gastrostomy and because we were waiting for a slot to do this it held off our leaving date.

Hugo and Daddy on the cardiac ward. Hugo looking very 'blue'

On 20/03 Hugo had a very worrying turn, he became tachy cardic and was unresponsive, after being checked over we were told he was ok and it was nothing to worry about, his heart rate went back to normal but he was reconnected onto a monitor to keep an eye on him. He started to need oxygen wafts to bring his sats back up and something told me that things really were not right!

Hugo needing his oxygen waft!

On 26/03 Hugo began to really struggle, the doctors discussed him having a respiratory problem. He continued to need regular suction and he began to de-sat each time with his hands and feet going blue. At around 4.20pm he had a big de-saturation, the doctor was just outside his room and ordered a blood gas and started to do an ECHO.
Hugo was ok for a time but became more distressed by the ECHO. His sat’s were dropping lower and lower and had dipped into the mid 40s%, it had become very scary. The Doctor then told us that he could not see the shunt clearly and was worried there was a problem. A crash call was given and we again had a room full of people very quickly.

We were then asked to leave the room and the doctor explained that he was not able to see the top of the shunt and Hugo was being taken down to CICU where he would be ventilated until he was stable. We were eventually allowed into CICU to see Hugo after he had been incubated. He was hooked up to so many drugs and was heavily sedated, he looked awful, we were both physically shocked by his appearance. We were told the next 24 hours were critical and if he deteriorated they would have to operate on his heart.

The following few days were awful. Hugo was given an accidental overdose of heparin which masked the real problem and we had a couple of days of uncertainty. He was given more Echo’s and none of the doctors could now see a problem with his shunt, eventually it was decided that he had to have a CT scan.

Finally it was confirmed that his shunt had failed and he would need to have the full Fallot’s repair as soon as possible.

On April 6th 2009, weighing just 3.98kg, Hugo was taken down for his full repair, something we had been told would not happen until his was a lot bigger and stronger.
We had been warned it was a very risky operation and not everyone was happy with it going ahead. Hugo had a higher risk of death after the operation due to his CHARGE problems and was expected to need peritoneal dialysis as his single kidney was likely to suffer after bypass.
After just over 6 hours Hugo was bought back to the ward, it had taken over 2 hours to get a central line in before surgery and they had ended up having to put it into his atrium.
When we first got into see him, John and I both asked why he was so red and were told that he was actually just pink, we had become so used to seeing him grey/blue. He had sats of 100% it all seemed too good to be true.

Hugo and Daddy, this was taken just 4 after his full repair

Hugo’s recovery was slow, he suffered a phnumothorax on his lungs, liver problems and problems weeing but thankfully his kidney stood up to the bypass and he stayed of dialysis. He also had a chylothorax which meant having to change him onto monogen milk. He had a Picc line inserted and came down with a number of infections but just 15 days after his full repair Hugo left Intensive care for the third time.

Our first family photo and hold after Hugo's full repair

He spent another month on the cardiac ward slowly recovering.

Hugo's first smile caught on camera while in the HDU

We were given more diagnosis’s for Hugo, Genetics testing confirmed he had CHARGE, he was diagnosed with Bulbar palsy, Swallowing problems and we were told it was unlikely he would ever eat orally. Two weeks later Hugo had a gastrostomy.

Hugo waiting to go down for his gastrostomy

The following week we finally left GOSH after 123 days for our local hospital and life started to regain normality.

On 27th May 2009 John and I bought our Hugo home for the first time, it was a milestone day and one we will never forget.

Our first photo at home

Hugo and Daddy in Covent Garden, London

Hugo and Mummy in Covent Garden, London

Hugo and Mummy posing at playtime

Hugo posing at playtime

Hugo wrapped up in his feeding tube!

We have had a busy few weeks (yes again!) of appointments so I am going to do a more detailed update on the specific appointments we have had. I also want to do an up to date summary of Hugo’s condition as I know there are some new ‘followers’!!

Hugo was born with CHARGE syndrome.
Hugo has the following conditions:
Tetralogy of Fallot with Pulmonary atresia - surgically repaired on 6/4/09
Severely visually impaired - bilateral colombomas and left microphthalmia (left side of his face smaller than right)
Hearing impaired - wears hearing aids in both ears, although problems with right ear deformity so aid does not fit very well in right side.
Brain stem hyperplasia - Dandy-walker variant
Bulbar palsy

Single Right Kidney
Right sided facial palsy
Left sided vocal cord palsy
Gastrostomy fed
Unsafe swallow, requiring regular suctioning - queried aspiration risk
Tongue tie
Developmental delay
Gastro-oesophageal reflux
Hyperparathyroidism
Genital abnormalities

After his bout of tonsillitis Hugo responded well to antibiotics and within a few days he was obviously feeling and looking much better.
On 19th April Hugo’s equipment arrived which the Occupational therapist had requested. He now has a bath support which is brilliant and now means I can just about bath him alone with out John having to be there, this is the first time I have been able to do this with Hugo since he was tiny and makes a huge difference. We have also received a special support seat for him which again is brilliant and is already making a big difference especially for feeding.

Hugo had his ophthalmology review on the 21st of April. The eye test went well, Hugo responded for the first time to some of the card test’s they did. He had eye drops in to dilate his pupils, so they can check the retina.
Hugo got a little fed up with the waiting and was trying to go to sleep, they are often running behind on appointments and we were about an hour behind time.
When we got in to see his consultant , she was very happy with how he is using the vision he has got in his right eye. It is almost certain that he has no vision in his left eye.
We also discussed the operation they want to do on his left eye at GOSH, Hugo’s consultant discussed this further with us.
Because his left eye and side of his face is very small they want to put a shield over his left eye to encourage the eye socket to grow at the same rate of the right side of his face. It would mean surgery and we are not happy about this, but she suggests we see what they think at GOS and go from there.

The following day we had an ENT appointment at GOSH. We decided to make a day of it for the first time. We left at 11am and got into London by 1.30pm, a record journey in! we parked up at GOS and then walked down into Covent Garden where we had a lovely walk around and then had a bite to eat in one of the restaurants. The weather was wonderful so we were able to sit outside and relax without worrying about other people coughing or sneezing all over Hugo. Hugo was a complete show off and kept looking around at people who in turn then tried to talk to him and make a fuss of him, he really loves all the attention, especially with the ladies!
We left Covent garden at around 2.30pm as our appointment was at 3.50pm.

Hugo’s ENT consultant is very happy with his progress. One thing that I had noticed was that Hugo has a slightly forked tongue, on mentioning this his consultant had a look and confirmed that he does have a tongue tie, this means the little bit of skin that attaches the tongue to the bottom of the mouth is too tight, Hugo will need to have it snipped off. They wont do this until he has an operation obviously because of the risk of putting him under anaesthetic.
He then asked if we had moved any further forward with Hugo’s feeding. We explained about Hugo’s meeting in the dysphagia clinic with the neurologist and SALT. There was nothing written in Hugo’s medical notes so he could not see what the outcome was or what had been suggested for Hugo. When we explained that we had been told not to pursue any feeding and that we are supposed to stop the water he was very surprised, he asked how many chest infections Hugo has had - none.
He then said that he could not understand the findings of this and that in his own personal opinion, Hugo is showing no real signs of aspirating. He feels that unless we try to get Hugo to eat/drink he will never move forward and he wont overcome his vocal cord palsy. The reason being that the vocal cord works like a muscle and needs to strengthen over time and if Hugo is not eating/drinking it is not going to get used and wont become any stronger.
If we start giving Hugo food and he becomes ill with chest infections then we will know he is not safe, but unless we try we wont ever move forward. He apologised for the different opinions and has told us he will write to the clinic asking for a full details on the findings and suggesting that they inform us and Hugo’s other doctors why they feel so strongly against Hugo eating/drinking.

Hugo’s ENT consultant has been involved in his care since he was a couple of weeks old. It was this particular doctor who thankfully stopped Hugo having a tracheotomy, so we value his opinion and take on board all that he recommends to us.
From now on he will only see us if there is a reason or issue that needs to be looked into, he is happy with how Hugo is progressing and will obviously become involved in his care if needed but we will not have to attended regular clinic. This is great news for us.

After leaving the appointment we had organised to meet with John the Chaplin at GOSH. It was wonderful to see him and we sat and had a cup of tea with him in the chapel. We were having a lovely chat and catch up when Hugo decided to surprise us all with a vomit!! It all happened quite suddenly and poor Hugo was very unsettled by it. Unfortunately our suction unit decided to run out of battery very quickly? Not sure why as it is always on charge, luckily John (Chaplin) was able to pop up to the ward and get us a lead to charge it up and we sat for another half an hour while Hugo settled and we charged the suction. So thanks again John for saving the day!!!
Thankfully once Hugo was in the car he woke and was much better and seemed much happier, and we managed a problem free journey home.

On Monday 26th April Hugo saw his physiotherapist, she is pleased with his progress, he was a little show off for her and as soon as she arrived he decided to back crawl over to her, roll onto his tummy and pull himself into her lap!! As you can imagine she was very impressed by this. He also did two small shuffles forward on his front which was good progress too.

Later in the day we had an audiology appointment for Hugo to have a hearing test, unfortunately I forgot his right hearing aid - not a good start! Hugo was very good though. We could not do left sided responses, because of his lack of vision he does not respond on that side even with the left hearing aid. However he responded very well on the right side (yes even without his hearing aid) It is more a visual response with the left sided hearing, its all a bit complicated with Hugo!! Anyway he responded well for about four goes then got wise to the test and started to look at the jumping monkey. At the same time he had realised that we were clapping him each time he looked at the noise, so now Hugo is clapping himself each time he got it right, we can’t help but laugh at his clever little game and so his hearing test was stopped due to him ‘searching’ for the noise. All very high tech eh!!!

Hugo is currently hearing around 50-60 decibels with his hearing aid in. ideally should be around 30DB, so not great, but the plan is to keep going as we are for now.
They took another mould of both his ears and they are planning on a different way of trying the mould in his right ear to fit it better.
After leaving audiology we took Hugo into the children’s unit to get him checked over, he still has a rash over his arms, legs and face. (he has had this since his tonsillitis) Its definitely not eczema which is good news and we just have to keep putting cream on every day.

Wednesday 5th May, was Hugo’s cardiac review at Hinchingbrooke Hospital with one of the GOS cardiologist’s.

A quick re cap on Hugo’s heart condition and repair.
Hugo’s heart condition is Tetralogy of Fallot with pulmonary atresia and ventricle septical defect. His pulmonary valve was completely blocked stopping blood from flowing to the pulmonary artery into the lungs, he also had four holes in his heart, one very large one between the right and left ventricle and three smaller ones.
When they did his full repair they cut the valve open and put a patch over it to allow the blood to flow properly. They repaired the holes as best as possible only having to leave a very small one open. Because of how his repair was done on the valve he now suffers with pulmonary regurgitation. This means that the blood should be flowing directly into the pulmonary artery and through to the lungs. However because of the patch, Hugo’s blood also flows back from the pulmonary artery into the right ventricle of his heart. This repair was always a short term solution, he will eventually need to have the valve replaced.

Unfortunately our usual cardiologist could not make the appointment but to our delight the replacement was one of the cardiologist’s who had spent some time with Hugo when he needed his second operation. He knows Hugo well and was pleased to see how much he has grown.

He asked us first if we had any concerns. Before Hugo became ill back in March and was admitted we had noticed that some of his chest veins were standing out more, we had mentioned this to Hugo’s cardiologist who felt they could be veins trying to re-route from where he had to have so many lines in when he was so poorly in GOSH.
Since then they have become more noticeable and in the last few weeks he has begun to have very prominent veins showing up on his neck, we mentioned all of this.
After a check over, he listened to his chest, checked his liver and felt the veins, then he did Hugo’s Echo. After also doing a scan on his neck veins he had a chat with us about Hugo.

Hugo’s heart is working well and he is happy with how things are looking, however the regurgitation has increased slightly and because of this the right ventricle has become very slightly more enlarged. The veins in his neck are more open because there is a greater blood flow going to them. This does need to be monitored.
He wants to increase Hugo’s diuretics, this is manly to help keep his fluid retention down and also allow him to have a bit of extra energy as we have also noticed that at times he does pant a bit and become out of breath. His Cardiologist wants him to be able to start crawling (still not there) and doing other activities without getting out of breath and too tired which would put too much pressure on his heart.

Although this is to be expected with Hugo’s heart condition, it is slightly sooner than we had expected. We had always known that he would need to have his valve replaced and our Cardiologist at GOSH had told us that best case scenario would be ten years old and worst case age three, we are looking at possibly four or five. They will not allow Hugo’s right ventricle to become too enlarged as this could lead to heart failure in adulthood, so once he starts to get too much regurgitation then they will think about replacing the valve.
He is happy with Hugo’s overall progress and how bright and alert he is, also compared to the colour he used to be, he was highly impressed with his skin colour and glad to not see the blue/grey boy that he used to be!!
We said our goodbyes and said how lovely it was to see him and left the hospital (after picking up Hugo’s new ear moulds)

By the time I got outside I was shaking and feeling sick. It breaks my heart to think any further ahead than now. I try with all my might not to think about the future and what may or may not happen. It is the only way to keep going and keep my ‘chin up’
John and I had a hug and then discussed the appointment. We try to stay upbeat and not let it get to us, but it is hard and we can’t help worrying about Hugo and his future. We are disappointed that he is already showing signs of RV enlargement, although as always are so thankful that we have the experts opinion and in our eyes the best looking over him. One thing we were told was that we are now in the summer months and that if Hugo can stay well over the next few months it is good for him. Obviously each time he becomes ill with a cold or bug it puts pressure on his heart so the stronger he stays the better and we will do all we can to make sure he is well.

Wednesday night John and I sat down together and had a large glass of wine each (wow not done that for a long time!!) put some music on and just talked about our wonderful little boy. I had a good cry and felt better for it, I don’t see the point in bottling things up and I am so lucky to have such a caring and wonderful husband who is always my shoulder to cry on or the boost I need to pick me back up. I probably don’t always tell him enough, but I love him to bits.

Thursday Hugo woke with his right retina fully dilated?? As we were at GOSH for ophthalmology we decided to see what they said rather than contacting HB.

Friday 7th we were again in London, our first appointment was at 1.40pm, so we left home at 10am. We got to GOSH by 12.30pm which was a great run.
When we were in GOSH we bought Hugo a cheap buggy with a car seat for pushing him around. We have never really used it since coming home and while sorting some bits to move we decided to take it with us and give it to Ladybird ward where Hugo spent so long. So we took it up and they were delighted with it, but more delighted to see our little boy. We were lucky enough to see lots of the nurse’s who cared for Hugo and some of them have not seen him since we left. Typically he showed off blowing raspberries and smiling for all, He really did make us proud!

Unfortunately our appointment did not go so well, Hugo fell asleep just before the appointment as he had not slept all day and it was ridiculously hot. To our dismay it was not an appointment to see the head consultant but a routine eye test to check his vision, the same as we had locally only three weeks ago!! Not amused!
We got into see the eye doctor and we explained about his eye, he was not really concerned and just did some eye checks, waking Hugo up in the process. He then said we needed to come back and see the consultant about having the eye surgery and when we explained that we were unhappy with the idea of it, he basically cast aside our concerns and said that there was no hope of vision in the left eye. We asked some more about the surgery and are led to believe that they would put a shield over Hugo’s left eye which would encourage the eye socket to grow. However it would mean a general anaesthetic to do the initial surgery and then he would need a new shield putting in every 6-8 months, again requiring a GA. This would continue until he was around ten. John and I both feel strongly that although this would make Hugo’s face look more symmetrical #, he really has enough to deal with on a day to day basis without having to have more surgery and discomfort. We are now having to ask the opinions of Hugo’s Paediatrician and Cardiologist.
We left feeling quite annoyed at the way the appointment was dealt with and that we have travelled Hugo all the way down to London when he really didn’t need to be seen.
Hugo was very clingy with John and didn’t quite seem himself, we assumed this was because he was tired and not in his usual routine.
After leaving the hospital we met up with Matt, Keeley and Betty who were all looking very well. We went for a coffee and catch up and it was great to see them all.
We left London and were home by about 8.30pm.

Saturday morning Hugo woke at 6am with a very rattly cough and a lot of secretions in his upper airway. He was pale and had a high temperature and the pupil in his right eye was still dilated. He only managed 75mls of his first feed and we decided to ring our local GP to try and get an appointment as we felt that we should use them instead of taking him down to the hospital. They were closed except for emergency’s and I couldn’t get through, so we decided to see how he went. At 2pm he had got no better so I rang through to Holly ward who said they would get the doctor to ring us back.
Five minutes later Hugo’s paediatrician rang back (she was on call) I went over how he was and she suggested that we bring him in for a check.

We got in at 4pm, temp still high, but the little monkey literally took one look at the nurse and started to laugh and jump around in his cot as if nothing was up!! Obviously we were pleased to see this, but worried we were wasting the doctors time.
Hugo was fully checked over, his chest was all clear apart from the upper airway secretions, but she was concerned about his eye. Although he is showing no other signs of neurological problems there is a concern as to why the pupil has become so enlarged. She is going to speak to his ophthalmologist on Monday morning and see what she thinks it could be, but there is a chance he may need an MRI scan to check that his brain is ok.
We left with antibiotics and got home by 7pm, as soon as we arrived Hugo’s tummy became very upset so we started the antibiotics straight away. He remained unsettled and eventually went to bed at 8.30pm, I followed suit as it had been a long couple of days and I was also very tired. John was due to work but decided a the very last minute that he really didn’t want to risk leaving me at home with Hugo with him being unwell. I woke at 11pm to put on Hugo’s feed and was very surprised to find John still at home!

Hugo has managed through the weekend and is a bit better but still not 100%, hopefully once he has had the course of antibiotics he will be much better. His eye has returned to normal, we are uncertain as to why the pupil dilated like it did, and we are just to keep a close eye on him (excuse the pun!!) they wont do an MRI just yet unless he shows any other signs of problems.