Fleur and Keith say they feel humbled and tearful after seeing the total. Thank you so much to everyone who has contributed or sent their wishes.

Wow what can we say, from the time we sent update 4 we have had the best news, Aiden was discharged from hospital, we are now home where we should be as a family.

The MRI results came back, the general news is that Aiden should have a good outcome, there are a few areas highlighted in the report but at this stage his brain is normally formed, his spinal cortex is fine, it appears he was a bit if a wriggler in the MRI but he is a baby after all, he will need further scans and follow ups but right now this is just fantastic news to us.

As of this minute Aiden is happily fast asleep in his swing after having a feed, both cats are chilled out in the sun and Keith and I are shattered, just how it should be!

We cannot begin to thank you enough for your love and support through this terrible time, we are looking forward to having sometime as a family and then we would love to start seeing everyone and showing off our beautiful little boy.

The last few days have been quick paced and eventful, Aiden was promoted to room 9 and only spent 2 nights here before we were discharged back to broomfield! This was fantastic news as they will only consider moving a baby when they are medically ready, Aiden had been making good progress and it was felt broomfield could handle his care needs from here. The ANTS team arrived and transferred Aiden to the special incubator for the journey, Aiden was kitted out with some yellow ear defenders for the journey, this was less stressful than his first trip up here and he spent the whole journey asleep.

We spent the next hour packing our unit up and saying goodbye to the friends we had made. Driving back to broomfield was both exciting and scary as we knew there would be a flood of emotions going back to the hospital where Aiden was delivered.

We arrived at broomfield at about 2am and headed to the neonatal unit (NNU), Aiden was settled and happy, we spoke to the nurses in charge and then headed home for a few hours sleep in our own bed!

We spent the next day with Aiden learning how to bath him, reading to him and listening to the noises he now makes, he now has the hang of breast feeding and has found his voice. Until now we had not heard Aiden cry and we were worried, however he was just a contented baby and had no need to cry, we mentioned our concern to a nurse and that night she left him to wake himself up and cry when he was hungry, we were so relieved to finally hear him cry!

We were eventually moved to a ‘rooming in’ room which is an ensuite room where baby can stay with you over night as if you were home! Aiden only woke twice and slept for 5 hours straight, mummy and daddy are very proud and relieved to finally get some sleep too!

Now we wait for the MRI results and to be told when we can take our brave precious little boy home.

Again we thank you for your continued support, love, messages and emails as without all of you we couldn’t get through this. To us Aiden is perfect and has already changed our lives for the better, we cannot wait for the day he can meet you all.

Love

Fleur and Keith

We are getting more involved in Aiden’s daily care routine now that many of the wires are being removed, this means we can clean his eyes, wash his face and change his hideous dirty nappies, but we love it as it’s what we would be doing if we were at home.

Aiden had a MRI booked in for Tuesday at 2pm, we took this time to go home for the first time in a week to get some more clothes, check on the house, we were both nervous leaving but Aiden was going to be away having the MRI scan for several hours and it made sense to go, if felt good to go home but we were very eager to get back to Aiden.

The MRI went well, Aiden did have a small seizure when they transferred him from the incubator to the table but he did manage to come out of this when comforted by the nurse. Aiden was sedated for the scan and so spent the rest of afternoon and evening asleep, he looked so peaceful.

Aiden now weighs a little over 7lbs and is being tube feed more milk as he grows, Aiden’s a little chunk compared to the 3 other premature babies he shares a room with.

As of the early hours on Thursday Aiden was promoted to room 9 which is a high dependency room rather than the critical intensive care room he was in before, this is a milestone as it means we can have more free access to him, we can take him out of his cot and hold him when we want without having to ask for help, we still do his cares and change his nappies, read him stories, we have also been shown how to aspirate his feeding tube, check the acidity to ensure the tube is still in his tummy and measure out and give him feds, although he does not taste his food he does seem to enjoy them by making faces and sucking noises.

As yet we have not received any information back from the MRI scan Aiden had, however this may not provide much information, it could mainly be used as a bench mark for further MRI’s.

To be able to stay close to Aiden and have 24hr access to him we have been homed by a charity called The Sick Children’s Trust, they are a charity based organisation who provide a home away from home for people with seriously ill children. There are only 8 units available here at Chesnut House and we are incredibly lucky to have been placed in one, the whole team here have been amazing and a constant support for us, without them we’re not sure what we would have done .

We are both constantly running on adrenaline to cope with the stress of the situation and are emotionally drained with the roller coaster ride of feelings, emotions, the highs and the lows but together we know we can get through anything. We are both eternally grateful for all the love, support and prayers for Aiden and ourselves and thank you all from the bottom of our hearts.

We also would like to thank everyone who has donated to the just giving page set up in Aiden’s name to support the wonderful work the Rosie have done. The Rosie is a truly special place with wonderful staff!

With much love,
Fleur and Keith

The nursing team at the Rosie have been amazing and a wonderful source of strength, they constantly remind us to take everything one day at a time and to cherish each moment we have and to hold those memories close to give us strength.

We have been able to spend more and more time with Aiden, to start with it was very difficult to spend more than 15 minutes at a time at his incubator as the machines and beeps are scary and as we have little understanding of what they mean we found them hard to cope with but slowly we are learning to deal with the monitors, beeps and flashing lights and have learnt that if the nurses don’t come running over, we don’t panic.

The nurses have encouraged us to get involved in his care, so now we know how to clean his mouth when the respiratory tubes bubble and make him dribble, we have changed a couple of nappies which sounds easy but when the baby is connected to lots of wires it isn’t as easy as it seems.

Sometimes when we are not with Aiden we wander the hospital corridors, on one walk we came across the chapel and decided to listen to the service taking place, after, we spoke to the reverend and they offered to spend some time with Aiden and preform a blessing for him and produced a lovely little book personalised to Aiden and us, we are constantly overwhelmed by the love and support we all receive from friends, family and strangers who we have never met before, the experience has been very humbling.

We very much want to give back to the Rosie and one of the ways of doing this was to agree to Aiden being used in a research project, where the baby wears a hat which has many sensors attached, these sensors record blood flow and electrical brain activity, the results are added to a database and used to understand how to better identify ways to treat seizures in babies and those with the same the condition as Aiden. We are now calling Aiden a pioneer as he was the first full term baby to be treated using the ice jacket since commencing the research, we realise that if past research hadn’t gone into the ice jacket that Aiden wore our situation could be very different and if this research can help even just one other baby it’s very worthwhile.

Aiden has made progress since being at the Rosie, the ice jacket was removed after 72 hours and Aiden has been warmed to a normal body temperature. We were concerned the warming might trigger further seizures but Aiden seems to have coped with this well, it’s lovely to see him without the jacket and feeling warm and looking pink like a regular baby.

The next huddle to jump was getting Aiden off his breathing respirator, after numerous failed attempts over several days Aiden finally managed to have the tube removed and is now happily coping on CPAP (continuous positive airway pressure), this was a huge relief for us and we’re so proud of the progress Aiden has made, we are aware that he may need to have the respirator re-inserted if he begins to get tired or struggle, however at present he is maintaining his breathing himself and is coping incredibly well.

Aiden is now being feed expressed milk through a tube inserted in his nose down to this tummy and is digesting this well, this will provide him with all the nutrients and proteins he needs, before this he was just being feed a glucose feed to maintain his calories.

On Saturday Aiden met his two big brothers, Keiran and Joshua, it was lovely to see the boys all together and great for Keith to see his elder two boys and have a bit of normality. Both boys think Aiden is lovely and can’t wait till he’s better and well enough to be transferred back to broomfield.

Sunday was a really positive day, when we arrived at this incubator we realised that his seizure monitor was gone, his blood pressure monitor was removed and his umbilical cord which had been stripped back to its 2 veins for monitoring purposes was cleaned and nothing attached! Even more exciting was that we we’re at the stage where we could finally hold him, we were both very nervous holding him for the first time as we didn’t want to knock his CPAP or wires, holding Aiden was the most amazing feeling and well over due!

We want to thank everyone for their love, support, prayers, well wishes and concern for Aiden, we really couldn’t manage this journey without them, although Aiden still has a long way to go and we’re not out the woods yet we can see a small opening. To support the Rosie we have set up a just giving page in Aiden’s name to raise money for such an amazing place, the nurses and doctors are incredible and have helped to make a horrible situation bearable and we very much want to give back, if you would like donate please have a look at the link below.

http://www.justgiving.com/Aiden-Mitchell

Love,
Fleur and Keith x