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Evie's journey to Alder Hey

Evie's journey to Alder Hey

Hi everyone,

This week we had an appointment for Evie at Alder Hey Children’s Hospital. When she was around 3 months old, we noticed that she wasn’t using her left hand as much as her right. She held it close to her and in a tight fist. We decided to keep an eye on it, but after seeing little improvement we took her to the GP to get it checked out.

Unfortunately, the GP confirmed that we were right to bring her in as there was definitely some inconsistency in her left arm and hand. Because Evie and I had a difficult time during her birth (I’ll be doing a post on her birth story another time…I’m not quite ready for that yet!!), there were a few options as to what might be causing this inconsistency. The first was potential nerve damage after attempted use of forceps in delivery and the second was possible brain damage (caused by lack of oxygen at birth) affecting her motor skills. His recommendation was for Evie to see a paediatrician for a more extensive examination.

The GP made the referral that same day, but it was going to take over 2 months for Evie to get an appointment on the NHS. It should be said that after living in America for so long, there is no one that appreciates the NHS more than me! However, we felt that 2 months was too long to wait for an appointment. Babies change and develop so quickly! With that in mind, we decided to take Evelyn to a private hospital for her appointment.

The paediatrician gave Evelyn a full examination from head to toe. He agreed that she had what is referred to as ‘increased tone’ in her left arm. He ruled out the possibility of nerve damage as he believed that it would have been evident from birth. He believed that cognitively, Evie was developing just as she should; she was alert, smiling, laughing and babbling away to herself. It was his recommendation however, that she should go for an MRI brain scan to further investigate. I left the appointment and was filled with worry. Even though I knew it was best to find out what was going on, my mind was going into overdrive on what *might* be wrong.

Whether we went privately or through the NHS, it would be another 6-8 weeks until Evie could have her scan. She was referred to Alder Hey Children’s Hospital and we were eventually given an appointment on November 23.

Because of her age, Evie had to be put under general anaesthetic for the scan. Her appointment was at 2:30pm so that meant she could have solid foods until 8:30am and bottle feeds until 10:30am. After that, it was water only until 1:30pm. As a Mum, I was dreading these hours leading up to her scan! I was imagining the drive from Manchester to Liverpool with an upset and hungry baby in the back seat. However, when the day arrived Evie was a superstar.

We followed the instructions from the hospital and Evie coped with not being fed amazingly well. I fed her as much solid food as I could until 8:30am and then she took her regular morning nap. When she got up, I tried to give her a bottle, but I think she was still full from breakfast! She barely had any of it and I was worried that in a couple of hours she’d be hungry and I wouldn’t be able to feed her. Again she surprised me; we set off to Liverpool and she fell asleep in the car for pretty much the whole way there.

When we arrived we were checked in and shown to a waiting area. The nurses that saw us were lovely and so good with Evie. They took her temperature and weighed her and we were taken to another area to wait for her general anaesthetic and scan. By this point, it was about 3pm. Evie was now starting to get a bit fed up with not being fed- who can blame her!! The anaesthetist came out to explain to us what would happen and by 3:30pm, Evie was taken in.

For me, I had been so worried about how Evie would respond to her disrupted schedule up to this point that I hadn’t even thought about everything that was about to happen. Looking back I feel like I should have been more prepared and I’ve spent the past couple of days with plenty of ‘Mum guilt’ over the things I should and shouldn’t have done.

We had been advised that Evie should have her anaesthetic administered via gas, rather than an injection. It was safer for her at her age and wouldn’t stay in her system as long. For me, it was this part of the day that was the scariest. I held Evie while the anaesthetist held a mask over her nose and mouth. Evie became quite upset, but we’d been told beforehand that it actually helps that the babies get upset; they take bigger gasps and therefore inhale the gas and go to sleep more quickly. She just looked so scared, looking at me as if to say “Why are you letting them do this to me?!” I tried to hold it together as long as I could, but all I could do was cry with her, telling her it was going to be ok and that she just needed to have a little sleep. Within about 15 seconds or so, she was out. But it wasn’t like she was asleep when she usually falls asleep on me. I lifted her onto the bed (the regular sized bed, she looked tiny!) and she was completely limp. I gave her a big kiss and then I had to leave her while she went for her scan.

My parents came with us as the hubby had to work, and as I left Evie I cried my eyes out on my Mum. We had to wait about 45 minutes for the scan to be done and decided to wait in the main refectory area with a coffee. The time seemed to go by so slowly but eventually we went back to see Evie.

She had already been woken up when we went into her, which I must admit was the one thing I wish they’d done differently. She was in a strange place and disorientated- surely it would have been kinder to her to have had her Mum there when she came around. She was understandably upset, but there was nothing I could do to console her. I tried feeding her and she would take a little bit but then cry again. She had been quite colicky as a new born and it reminded me of those early months. Her eyes were pretty much closed though and it was as if she was still asleep. The nurse that had been with her kept saying how normal it was that she was so upset, but it really didn’t do much to reassure me. She advised that we take her out of the recovery ward, because usually the change of scenery does the trick. We took her down to the refectory area and within about 30 minutes she had calmed down and was no longer crying.

I would say it took a good hour for my Evie to really come back. We sat and had lots of cuddles, watched some Peppa Pig (this pig is seriously a life saver!!) and eventually she took another feed. By this point she was smiling again and babbling away as usual. It was only by this point that I felt ok to take her home (baring in mind we had a good hour in the car back to Manchester!).

The next day, she was doing fine in herself but you could still see the affects of the anaesthetic across her eyes. She was more tired than usual and was definitely off her typical schedule, but was in good spirits.

Now, we will have about a week or so to wait for the results of her scan. In all honesty, I think the hubby and I are expecting that there will be some kind of damage to see. What we would like to know more than anything at this point, is how we move forward. With any of these things, it’s the not knowing that makes it harder.

I cannot say enough good things about the staff at Alder Hey. They took such good care of our little girl. I know there are major flaws in the NHS, but the doctors and nurses that work in these hospitals are just amazing and don’t get nearly enough credit. THANK YOU!!

A big thanks to all of our Instagram followers, too, that sent us well wishes on the day of Evie’s scan- it was so appreciated. There should also be a special shoutout to Evie’s grandparents (what would we do without them!!!!) who came with us and gave both of us so much support.

I’ll be keeping track of Evie’s results and progress here on the blog, but in the meantime, we’ll be keeping everything crossed for promising news in the coming weeks.

Feel free to follow us on Instagram for daily posts and updates!

Thanks for all your support!

Little Evie and Me xx

Our family; bye bye Opera (for now!), hello baby!

Our family; bye bye Opera (for now!), hello baby!

Welcome to Little Evie and Me

Welcome to Little Evie and Me