Why I Share Our Story

I have received numerous messages on Instagram recently asking why I share our story. I mean, after all, I post a varied amount of content, whether it’s positive things or negatives. Sharing our story was a natural transition from when I updated about my pregnancy over on my Instagram. Many people who followed there and read about the complications we had during the pregnancy wanted to know how we got on. After a discussion I had with the psychologist in the NICU, I decided to set Finding My Feet up. I wanted a safe place to discuss what was going on for myself and Jack. There was a lot of trauma and uncertainty when I was pregnant and it has continued since then.

I needed an outlet. Somewhere I could express how I was feeling about our situation. No one expects to find themselves in this situation and for a long time, I found it difficult to process what was happening.

Ten months on, I’m still struggling. I’m still having panic attacks. I’m still waking up after having nightmares. I still feel panic shooting through my body every time I hear an ambulance drive past. I’m still dizzy and have sparkles in my eyes.

Rest assured, I have been checked out, lots of times, the doctors keep telling me that it’s stress. I’ve also recently been told that it could also be a symptom of PTSD, I’ve not started my trauma therapy yet so maybe it will improve once I’ve worked through a few things.

I’m not posting this for sympathy or for people to feel sorry for me. I don’t need that! I’m sharing our journey because Jack is amazing. What he will go through, will be truly extraordinary. I want to raise Jack not be ashamed of who he is and what he’s been through. He is a fighter and I hope that you continue to follow our journey so you can see just how amazing he is too.

In the future, I’m looking into doing some kind of fundraising for Evelina, they saved Jack’s life and I will be forever grateful to them.

Much love,
Hannah

SALT Assessment: March 2021

A few days ago Jack had a SALT assessment. It was a really positive appointment! 

We tried Jack on blended pear with a little bit of green food colouring mixed in it.

The SALT team were confident they heard numerous swallows so this is great news! Jack didn’t need any extra suctioning and what we did suction out was of normal colour (not green – we put food colouring in to see if he was aspirating) there was signs of him swallowing the blended pear so we were very happy to hear that! 

We have been told that he has to ingest 15ml of blended food orally to qualify for a fluoroscopy. We will be practicing every day with him. So hopefully we will be at that point soon. 

We have been trying him on bits of pear everyday so he can get used to the textures and tastes.

Thank you for following our journey.

Much love,
Hannah x

Welcome To Jack’s Room

One evening last week Josh and I had a conversation about the way we are utilising our rooms upstairs and came to the conclusion that we could make more use out of the space that we have. We don’t want to be moving house any time soon so we thought it would be a great idea to move Jack into our room. At the end of the day, we never really spend much time in there and the room is much larger than Jack’s room. With Jack having so much extra equipment and medical stock it made sense to give him the bigger room as there is more space and storage.

His new room is not only bigger but it’s much brighter and I for one feel so much better when a room has more natural light. There is plenty of room for Jack to grow into this room too. We’ve talked about getting Jack a car rug when he gets a bit older and there is a huge space to put it. Downstairs we are very limited for space for toys (although we’ve crammed as much in as possible) so this will be a great space that we can all enjoy as a family.

Everything in the room has it’s set place. Jack has nurses that look after him overnight as he needs to be watched 24 hours a day so it’s even more crucial that everyone knows where things are especially if there was ever an emergency.

We have a small fridge to store Jack’s milk in for his feeds overnight. We measure all the milk and meds up during the day so that the room is all ready to go overnight. We also have a sort of hour by hour whiteboard which we update regularly so that the nurse is always aware of Jack’s routine.

I’m so happy with how Jack’s room is looking. I love spending time in here. It’s a great space to have playtime with Jack. I’m just so glad that we decided to go ahead and do the move.

Of course we can’t forget his favourite teddy. It’s from the book ‘Guess How Much I Love You’

Thank you so much for reading and I hope that you enjoyed this post. Please leave a comment to let me know what you think.

Much love,
Hannah x

THE NICU.

When I had first had Jack I remember the c-section being very calm and stress free but looking back on it now and reading the discharge notes of what happened in theatre. I find myself holding my breath and I have a heavy lump in the back of my throat. I keep thinking in my head how many times we could have lost him in that hour and a half. The reality is, we were so close to losing him. He nearly didn’t make it. Josh and I exchanged looks numerous times as we heard Jack’s little cries from across the theatre room. We kept asking for updates but no-one could tell us anything. The surgeons had finished stitching me up and the drape had disappeared, the room was full of doctors. I felt sick. Even as I’m writing this now, I find myself feeling choked and nauseous. Nearly 8 months on and thinking about what happened still makes me gasp for air. It cripples me. 

We were informed before having Jack that he would most likely require some time in the NICU. I remember going home from our appointment that day and researching what a NICU was. I had never heard of it. After a conversation with my mum, she explained to me that my little sister had spent some time in the NICU before she tragically passed away shortly after going home. 

I felt sad and confused. Everything was so uncertain. No-one could tell me if my baby was going to be okay. No-one could tell me if he would be spending a day, a week, a month in the NICU. We wouldn’t know till he was born. I felt heartbroken. I felt a great loss of the idea of having a “normal” pregnancy. After some time, I took to Instagram to research and talk to other mum’s who’s children had been in the NICU. I’m a planner and organiser so if there is something I can keep my mind occupied with, I need to find it. I listened to lots of mums about their experiences and what they did to cope. They gave me lost of advice on how to look after myself and things to take and do to encourage bonding with Jack. I’m so glad that I took the time to talk to people who had experienced it first hand because I at least had a little idea of what I was walking in to. I also made lots of friends along the way who continued to support me through Jack’s time in the NICU and beyond which was truly lovely. 

I will never forget my first night in the NICU. It was so dimly lit with harsh flashing lights from the monitors and screens that surrounded the tiny babies. I didn’t have a clue which baby was mine. The nurse wheeled me over to the open top incubator and I felt in a daze, I watched closely at the two nurses as they were moving wires and adjusting the baby in front of me. Was that Jack? It didn’t feel real. I felt like I was looking at someone else’s life. Was I a mum? Do I feel different? I don’t understand. My mind wandered as I watched. I don’t understand how this place can be real. What is my life? I need to get away. I can’t do this. My mind wandered to Lois who instilled a saying into my mind the week before to help me. I could hear her voice. “I am strong and I can do this.” but could I? I can. I think. Maybe? I wasn’t sure. Enough time had passed and I hadn’t realised that the nurse had started talking to me. I couldn’t understand her. My mind kept wandering, why is this happening? I felt as though I was drifting back and forth from reality. 

The NICU was the most terrifying thing I have ever experienced. Theres not a day that goes by that I don’t think about our time there.

Our days in the NICU were the same routine for nearly 3 months. For the first few weeks everything was a bit of a blur. I don’t feel like we had any sort of routine. We were just doing everything we could do just get through each day. Jack was sedated for the first week of his life. I wasn’t allowed to hold him or change his nappy. Towards the end of the week I was able to start to help the nurses to feed him via his NG tube. It was odd. He didn’t wake up. I was stood over and staring at my baby who wasn’t responding. He was intubated and on a ventilator. 

 As time went by (and a tracheostomy in situ) and Jack was moved down to HDU (high dependency unit) I usually went to visit Jack in the mornings. I found that it was the time of day that I felt at my most positive and motivated. I would get there just before doctors ward round. I would do some of Jack’s cares and have a cuddle before the daily appointments and check in’s started. The NICU, although very clinical, it became home and a familiar place. By the time we were getting ready to be discharged to our local hospital, I would walk down the corridors of the NICU and doctors, nurses and consultants would stop me to ask how Jack was doing. It felt like home by the end of Jack’s stay.

I will never forget what the doctors, nurses and all the other unit staff do for both the babies and the parent’s on that unit. I am forever grateful to them. They saved my little boys life and that is something I will never forget.

Much love,
Hannah

Tape Changes

Everyday we change Jack’s tapes (the velcro strap that keeps his tracheostomy in place) On average it can take us around 6 or 7 minutes from start to finish. Sometimes it can take longer if we need to keep stopping to suction or occasionally Jack manages to get one of his arms out of the swaddle blanket we use. We’ve had lots of practice so we’ve gotten used the challenges that occur during the changes.

Every two weeks we change Jack’s tracheostomy tube and put a clean and sterile one in. I will talk more about this in a different post.

Every week (usually on Sunday’s) I restock and prepare all the tape change bags for the coming week. I feel that this just helps the process move a bit quicker. Jack doesn’t like the changes, and I would prefer to be doing other things. This just helps us get a head start on getting it over and done with.

Here’s what I put in each bag:

  • x2 packs of gawze (1 for cleaning, 1 for drying)
  • x1 dressing
  • x1 posey foam trach velcro tie
  • x1 swedish nose
  • x1 sissors
  • medihoney barrier cream
  • 10ml ampoule of 0.9% sodium chloride

Many thanks for following our journey so far. I post daily over on my Instagram if you’re interesting in seeing more of our day to day life.

https://www.instagram.com/mumtojack/

Much love,
Hannah x