Johnston Family

“One step forward and two steps back” really does come into play with babies. Aiden made great progress on Monday; he had his CPAP removed and has continued to breath unaided, this was a huge milestone and so positive. However, Aidan had another physical seizure and has had to go back on the brain monitor and which he has remained on since then.

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 last few days have been a whirlwind of emotions, tests, information and enough tears to fill an ocean.

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

On Tuesday June 17th at 12:13am Fleur gave birth to our beautiful son Aiden Graeme Johnston Mitchell weighing 6lb 9oz. Unfortunately, as you have most probably heard, there were complications with the birth which resulted in Aiden being starved of oxygen for some time.

Aiden was quickly taken away and worked on by a wonderful team, the first 2 hours we did not know whether he had survived or not. Aiden is a little fighter and was moved to intensive care unit where the team begun to reduce his body temperature as he was suffering from hypoxia-ischaemic encephalopathy (HIE). Aiden was assessed and the decision taken to transfer him to the Rosie Hospital at Addenbookes where they could further reduce his body temperature to try and stop the spread of the toxins to his brain to reduce further damage.

Aiden was a star and travelled to the Rosie with the ANTS (acute neonatal transfer service) team on Tuesday morning, we were able to follow later that evening once Fleur had been discharged from the hospital. This did take longer than expected because the hospital and senior midwives needed to speak with us and take statements from us in relation to his birth as it is strongly believed the direct actions of the midwife caused Aidens condition, we will not know the outcome for some time but want people to know how wonderful the staff at the Broomfield maternity unit are and that this one midwife who was an agency worker called in due to low staff levels should not tar the image of the hospital and the wonderful people and work that is done there.

At present Aiden is still wrapped in his ice blanket and his breathing is being assisted, he is suffering from seizures which need to be controlled as this can cause further damage to his brain, we may not know for some time how affected he will be. We are spending time with him and reassuring him and love him so much but just don’t know what the future holds for our family and our brave little boy, we thank you so much for your support and we really couldn’t manage without it as this has been the most difficult time ever for us.

We want to respond to all your messages of support but we’re finding it difficult to do so as we’re emotionally drained, we wanted to give you all the information we could so you know what’s happening to us, Aiden is a fighter and we are just hoping and praying the damage is minimal but we are also realistic, Aiden is the most beautiful little boy ever and has stolen our hearts, please keep him in your thoughts as he needs every bit of hope and love out there.

Thank you and we will be in touch with updates as we can, the picture of Aiden was taken a few days ago.

Love,

Fleur and Keith

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Fleur and Keith are keen to give something back to the Rosie Hospital (Addenbrookes) that has done so much for them. Their JustGiving page is here.