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THE STORY OF MILLIE AND ME

 

ABOUT THE BLOG

After lots of back and forth, I have finally decided to create a blog of Millie's story. When we first started on this adventure a few people told me to start one, but I couldn't bring myself to do it. I did however, take huge comfort in keeping a diary for our daughter, during her time on NICU. In my last diary entry to her I congratulated her on her discharge. Our little fighter had spent 12 days in intensive care, 50 days in high dependency and 18 days in special care - A total of 80 days in hospital. 

She was given 40 different drugs whilst on the unit, and was extremely close to not making it at all. Naively, we thought that was the end of our premature baby roller coaster. We soon found out, however, that even though you've made that last entry, closed the diary and finally left as a family of 3 through the NICU doors you tirelessly walked through every day - The roller coaster doesn't end there...

This is Millie's story

 
 
 
 

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Neonatal mental health awareness week

I haven’t written a post for a while, we have been so busy with Millie’s audiology appointments! If you have been following our Instagram @28weekmillie you will see that she had some hearing aids fitted today. We are going to see how she gets on with them, while they start further tests to see if she can have a cochlear implant fitted. I will write a post on how she is getting on with her hearing soon. However, I read earlier that today marks the start of the first ever Neonatal Mental Health Awareness Week, so thought it would be fitting to write about our experience of this.


The first thing everyone is told at the start of their NICU journey is that every baby is different, and it is down to each individual baby to decide how his / her journey is going to pan out. We saw some born at 24 weeks who sailed through NICU, but also babies who were born at term and needed to be ventilated. No matter how each journey goes, parents all go through similar emotions at some point or another.


The start of our journey was by far the hardest, and it affected my husband and I both physically and mentally. I don’t remember a single day in the first month where one of us did not break down, and need the support of the other to prop ourselves back up. We were constantly up and down emotions wise, and the most difficult thing was that no one understood what we were going through – Except those who had already been through it. That’s why I started this blog. I remember finding a scrap book a mum had made of her little girl’s time in NICU, who was also born at 28 weeks. I read every single page, and went through every single photo because she had survived her experience of NICU, and it gave me hope that Millie could do the same.


I don’t think either of us slept much at the beginning. However, when we did, we both suffered from extreme nightmares. I remember having a recurring one where I am bathing Millie and turn my back on her for 1 second. When I turned back around, she has slid under the water and is drowning. As she is drowning her face is disappearing. Despite putting my hands under the water and frantically scrabbling around, I can’t grab hold of her, as all of her features fade away in front of me…


I have no idea what it means. I assume feeling helpless at the time.. but wow, that was difficult to write out – Even now, 4 months later. My husband also suffered nightmares, and would wake me up in the night panicking, asking where Millie was. It was so difficult to explain to someone who is half asleep, and has dreamt and believes his daughter is next to him (like a normal family), that actually she is in intensive care. When ever this happened, we would call the hospital to check nothing had happened to Millie. I lost count of how many early morning phone calls we made to the unit, but the staff were always so great and supportive at giving us updates any time of day or night.


We were lucky enough to be offered counselling during Millie’s time in NICU. I remember the psychologist saying it is very common for parents to suffer from PTSD (post traumatic stress disorder) following the birth of a premature baby. We both dismissed this, but after discussing with the psychologist how we felt, soon realised we were both showing symptoms of this:


We both suffered from intensive physical reactions to reminders of difficult times.


We were both constantly on high alert, with an irrational and intense fear of anything going wrong.


We had difficulty concentrating and would burst into tears at the slightest sign of a struggle or set back.


We had difficulty sleeping, and suffered from severe anxiety which occasionally developed into panic attacks.


Our moods were constantly up and down. We went through days where we felt absolutely ecstatic in the morning, to completely drained and upset in the evening.


We were encouraged to focus on the “now” to help us get over the events we had experienced. We both managed this in very different ways. I started to use Millie’s knitted square. If I ever felt anxious, worried or I had woken up from a nightmare I would grip the square as tight as I could and remind myself of how far she had come. She is still with us, and in a much more stable condition than when we started out on this journey. I found it extremely comforting, however, I think my husband struggled with this more. The psychologist was great at getting to the bottom of his worries by simply asking him – what do you think your role as a dad is? He answered with what any dad would answer with..

His role is to protect us..


Until that point, I hadn’t even thought this was how he felt. But of course he felt this way!! It was such an emotional conversation to have between the 3 of us, as he hadn’t been able to do anything to protect me during my pre-eclampsia – and I nearly died.


And now, there was nothing he could do to protect Millie – and she had nearly died more than once!


Just simply talking about and acknowledging these feelings were what helped him through. You wouldn’t think it reading through my posts, but speaking about my emotions is always something I have struggled with. I rarely show them. However, this experience has shown me the power of talking about how you are feeling – and we will always make sure Millie has the confidence and trust to talk to us about anything.


And of course, now we are home and well, my husband is the most protective and loving dad Millie could ask for – We couldn’t live without him.


For all families currently on their NICU journey. We would encourage you to keep talking, and take any help or support offered to you – Even if you think everything is fine, because it may not hit you straight away. It might hit you later on, and having the tools to deal with mental health challenges will equip you with everything you need to get through NICU.


In this picture, Millie was 1 week old. We weren't meant to touch her.. But I had just broken down in tears as she was rapidly deteriorating and was about to be put on an oscillator. I knew at the time, the nurse had only let me hold her because she knew how poorly she was. Actually, my memory of this was that it happened at night time. However, looking at the photo now, it must have been during the day - It just proves the dark place I was in with my mental health at the time...


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