“We’d like to run some tests…”
Reflux

“We’d like to run some tests…”

Follows the post “Admission”

I woke early and realised it wasn’t a dream. We were definitely in hospital and Dotty was still wired up to the machines in the cot next to me. Someone gave us some toast and some tea while gently reminding us that the Doctors were ‘going to run some tests today’.

When I think about it now, I can’t remember us asking many questions as this point. We were scared and apprehensive and went along with whatever was happening, happy to trust the genuinely brilliant people that were taking care of us. One nurse in particular felt like a big sister to me, I had to stop myself from leaping up and trying to hug her each time she walked by. I’ve a tendency to freak people out by being overly familiar at the best of times and this was no exception. Thankfully she was very kind and didn’t feel the need to call the police.

Mid morning, a different Doctor came to examine Dotty. He was a general paediatrician that specialised in Neonatology and he came with 3 medical students that were observing his rounds. Now, I watch enough Grey’s Anatomy to know that the teaching process in hospitals is vital but that didn’t stop me behaving like a wild lioness protecting her cub any time one of them pointed or even glanced at her. Maybe if he’d looked more like Doctor Derek Shepherd I’d have been a tad more accommodating. Hhhmm now there’s a distracting thought. But no, it’s probably a good thing he didn’t resemble McDreamy in any way, shape or form! I mean I’d have been mortified! I wasn’t exactly looking my best. Imagine an anxiety riddled Victoria Wood in baggy maternity shirts and leggings that had more than a few holes in them… mainly in the crotch. Mark begged me to throw them out but I insisted on wearing them for approximately another 5 months because they were ‘comfy’. I’m surprised he didn’t ceremoniously burn them when I finally gave them up!

The first test they performed was an MRI of her head. We had to feed her and settle her to sleep before carrying her through in her car seat, as it was best if she wasn’t awake when they put her into the gigantic machine. I was allowed to stay in the room with her and had to wear a heavy safety vest and some headphones. I was given a big button to push, which would alarm if she or I got distressed and I wanted them to pull her out.

The test lasted about 20 minutes and the noises coming from it were loud and monotonous, making my ears itch as they rumbled through me. My heart was in my mouth as I expected to her wake and scream at any moment but like an angel, she slept through the entire thing. I think that was due to the fact she was still really groggy from the drugs she was given the night before but I wasn’t complaining.

She was out for the count as we transferred her back to her car seat and took her upstairs to the ward. The results wouldn’t be in until later that afternoon so they arranged for us to go to a neighbouring hospital for Dotty to have an EEG while we waited. They told us that we’d be going in an ambulance and to try and hold back her next feed to time it with the test, as again, it would be better if she were calm, feeding and sleeping during the test.Tests_Admisson.2-750x422

She was very quiet and sleepy during the journey and hadn’t had a ‘seizure’ or ‘episode’ all day. She looked so small in her seat, strapped to the gurney as she was wheeled along corridors and out to the ambulance. The paramedics were so lovely, chatting to us on the journey and made us feel at ease the whole way.

They carried her all the way through the new hospital and into the room where we were met by the lady that was to do the test. She was sweet enough I suppose but I didn’t warm to her and was probably a bit prickly and short as a result. Working quickly, she explained what she was doing as she secured what looked like hundreds of wires to Dotty’s head with some kind of Vaseline or putty. She eventually placed a net over them to hold them in place and then propped her up on a cushion in my arms and asked me to begin her feed.

Of all the tests she’s had so far, the EEGs were definitely the hardest. (She’s had two in total). Mainly because they lasted almost an hour and as you can imagine, Dotty protested at having her scalp prodded, pushed and rubbed each time. You’re always told to protect a baby’s head as it’s so soft and sensitive and so I panicked at the thought of them hurting her or causing more damage. Of course they were professionals and the lady performing the test knew exactly what she was doing but it made me feel uneasy all the same. Thankfully Dotty calmed down quickly as soon as the milk flowed and once the test was over, an indication of the results could be given straight away. We were told that they appeared normal and breathed a sigh of relief as we packed up our stuff to leave.

Tests_Admisson-750x422

We travelled back in the ambulance, our attention now turning to the imminent MRI results we were expecting to receive when we returned. Dotty also had to be given her 2nd round of antibiotics through her Cannula and we were yet to find out when she’d be booked in for her 3rd test, an ECHO to check her heart.

When we arrived back in our bay, a nurse came to tell us that they’d made up one of the rooms along the corridor for us, as we’d be staying another night. It was cosy with a single fold down bed positioned alongside a cot, a small sink in the corner with a leather, feeding chair in front of it and a TV on a bracket high on the wall. It wasn’t much but it was appreciated and gave us that little bit more privacy. When we were eventually given her MRI results and heard the words ‘all clear’ we were overcome with relief. Holding back tears, I phoned my parents and Mark’s mum and sister came to visit us that evening bearing gifts of clean pants and mini eggs.

As Dotty hadn’t had an ‘episode’ since she was given the Phenobarbital and her test results weren’t showing up anything obviously worrying, we were told that we could take her home the following day, as soon as she’d had her ECHO. I was definitely worried about leaving but I was also trying to be more positive and was looking forward to being in our own space again, set on starting more of a structured routine once we were home and settled.

We decided that Mark would go home that night and I would stay with Dotty. There wasn’t really anywhere for him to sleep as the ward had gotten busier and it made sense that he nipped home to rest as we were literally 10 minutes drive from the hospital. I managed to get a bit of sleep between feeds and watching the One Born Every Minute marathon on Channel 4 on the tiny tele in the corner of the ceiling in our room.

The next day, Mark arrived early and watched Dotty as I had a shower and got changed (into more holey leggings). I headed down for her ECHO at around lunchtime and this time she was wide-awake. It was lovely to see her look more alert and squawk as the Doctor put the cold gel on her chest to do the ultrasound of her heart. He took a very long time before he eventually starting ooh-ing and aahing at the images on his screen. I had no idea if they were good or bad oohs or aahs and held my breath until he spoke again.

“Aha….I’ve never seen this before… how interesting…”

“WHAT IS?!” I yelped fearing the worst. And then he smiled and told me that she had quite irregular valves and that her blood was pumping around them in an unusual way or something to that effect. Of course she does, I thought. Our Dotty wasn’t going to be typical now was she? No sir! He said it wasn’t anything to worry about, only something they’d have to look at again in follow up appointment once she turned one to make sure everything was growing and working as it should be.

I was all smiles as I left the room but I’d reached my limit now and was ready for us to be discharged. I couldn’t process any more information and just wanted to take our non-typical baby home and get on with our lives. She looked better and I felt more confident at the thought of leaving, praying that whatever glitch we’d been through was now over.

“Who wants to be like everyone else anyway, right Dotty? Let’s get out of here.”

To read the next blog chapter and continue the story click here

7 comments

  1. Anonymous

    More please. Really good once again x

  2. Sarah G

    Well that definitely left me a bit teary. xxx

  3. Sarah G

    That left me a bit teary. 🙁
    You are all very brave. xxx

  4. Sarah

    Reading what you went through is masking me feel a little less alone. We are just now embarking on our journey with a 1 month old with silent reflux and sandifer syndrome. Thank you so much for having this blog. It is beautifully written.

  5. Emma

    That’s very kind of you to say Sarah, I’m so sorry that you and your family are having to go through this. I really feel for you, It’s so hard to see our babies struggle and to stay strong for them. I’m pleased that you found the blog and am glad it’s helping in some small way. I wish you all the best and hope your little one gets to a place where the Refulx is more manageable soon.

  6. Sarah Quillian

    Thank you! Lucy had 5 more episodes on Saturday. We got video of them and her pediatrician referred us to a neurologist and GI doctor. We go to both tomorrow. Praying all goes well and we get a few answers.

  7. Emma

    I’m sorry to hear that Sarah. I really hope the appointments went ok and that you got or get some answers soon x

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