My NICU baby ~ a mothers experience.

I’m not sure exactly how I’m going to write this post or if I’m even ready too. It’s been almost 14 years and I have never talked about it.

It was the day my daughter was born.

Life changed me on that day. Its where the sadness began, its where my mind and heart learnt how to shut down and go numb.

I remember how excited I felt before the birth and how weird it felt that I was going to bring a baby home. But I was so excited to meet her and, to be her mum and show her around. Everything was ready, I had all her cute baby things waiting for her.

I had absolutely no idea what I was heading into or that my daughter was about to fight the biggest fight of her life. To stay in this world or go back to the one she came from.

It was a typical laboured walk down the hospital hallway with contractions on every second step I took. That was a long walk to the delivery room. I remember most of the labour, I remember the midwives telling me I was doing well and taking the monitor off my stomach. That four hours went pretty quick and my daughter was born. The umbilical cord was cut and she was place on my chest. That moment was the most normal moment of motherhood I remember, because about 30 seconds later it all changed.

I felt so exhausted but so proud of what I had just done. I could hardly believe that I had just done that. It was amazing.

Then one of the midwives started to rub her saying she’s a little purple. They rubbed her more and more and they said to me they are just going to give her some oxygen. I kept hearing them tell me she is ok, she just needs a little oxygen and they wheeled in a incubator and put her in it face down on all fours with the oxygen at her nose and mouth. At this stage I wasn’t too alerted as they kept me calm and reassured me that this can happen and she will be fine. It wasn’t until they sat me up, that I felt something wasn’t right. What I saw was black, everywhere. All over the sheet I was on. At the time I didn’t know what it was and being so tired and exhausted my instinct got pushed aside as I was moved to the shower and then into the room next-door. I now know that the black stuff that was everywhere, was Micconium.  And she was heading into a severe case of MAS (micconium aspiration syndrome). At the time I had no idea what this was and had never heard of it before. It was pulling me into a world that I never could have imagined.

It didn’t feel like 5 hours. Thats how long I was sitting in the room next door staring at the wall. I remember being utterly numb and people coming in and talking to myself and my fiancé. I remember their mouths moving but I didn’t hear what they were saying. I was lost. Like the world had gone.  They often spoke to my fiancé, explaining what was happening and I remember him crying. I didn’t shed one tear. I couldn’t feel anything. I didn’t talk. I didn’t ask about her. I just sat there in the bed for 5 hours staring at the wall. Looking back now, I know I was in shock. My fiancé told me later that he was worried that I wasn’t crying or speaking. That I just became still. Like nothing had happened. I know now, that behaviour was not normal.

A lot of the small details I learned much later. That they were manually bagging my daughter with oxygen to keep her alive for the entire five hours until a medical team arrived. That they had been informing my spouse that the doctor was called pretty much immediately after she was born because they knew there was a very serious problem here. I might also just add here that my daughter was born in a county hospital hours upon hours away from any large hospitals. They kept in touch with him that our daughter had to be taken to the neonatal intensive care unit in Townsville. They wanted to take her to Brisbane hospital for treatment but the trip would be too long for her and she may not make the trip. They decided she would be taken to Townsville Hospital. They wanted her flown by chopper to get there as quickly as possible, however, the copper was out treating for an accident on the highway and wasn’t available. This left only the flying doctors small plane. This plane could only take a minimum number of people, including my daughter and medical team. There was no room for my spouse. I had to go alone.

We said our goodbyes and my spouse was to make the 3 hour drive with my mother.

I remember being strapped into the bed on the plane. I don’t remember the trip on the plane. I just remember them waking me telling me we were there and my first question was ‘is she still breathing’. They said ‘yes, she made it’.

After unpacking both of us from the plane they took her straight to the neonatal intensive care unit reassuring me that I would see her soon. And they wheeled me to a room in maternity. I didn’t know at the time the hospital would be my home for the next six weeks. Within a minute of arriving in the room I asked to be taken to NICU.  I wasn’t prepared for this. I wasn’t ready to see what I was going to see. I was alone. I wasn’t able to absorb any information, I just wanted to see my baby.

From memory I had to stay in that maternity room, levels away from my daughter, for up to a week before they could get me into a room in nicu to be closer to my daughter. As soon as we got up there, I made a beeline for her. But I couldn’t process what I was seeing. She was laying there lifeless with her eyes closed in an induced coma. There was a machine hooked up to her breathing for  her. I also learned later that she was on life support for the entire first week of her life. At the time I didn’t understand what everything was and what was happening. There were so many cords and lines. She had them in both hands, in both feet and multiple coming from her belly button and she was hooked into the breathing machine. I kind of just stared at her in disbelief. No words. People would talk to me and I wouldn’t respond, I remember them being there, but I don’t remember talking to them. They gave me a chair next to her, so I sat. I was still numb. I just stared at her listening to the beeping of the machine. After time I  ended up learning the different beeps, when it was good and when it was not. And after so many years, whenever I’m in a hospital and I hear the monitors beeping, it takes me there. I think it always will.

A couple of hours after sitting watching her, my spouse and mother arrived. This was the first time my mother had seen my new daughter, so it would of been a shock for her. But she did what mums do and she reassured me that my daughter will get through this. They were introduced to the medical team and very shortly after my spouse and I were ushered into a doctors room to be informed of what we were facing. I don’t know how long we were in that room and I didn’t hear a lot of what the doctor was saying, he spoke mostly to my spouse. I was completely incoherent and in my opinion I was wasting time in that room and could be out there by my little girls side.  Our entire conversation was recorded on a tape. I still have this tape but have never been able to listen to it. I want to, but I dont know if I can. So much of me wants to know what was said that day and its the only way I will find out. I have kept it in a very safe place, knowing that one day, I will be strong enough to listen to it.

Again later I learned that the doctor told us that her first 24 hours were critical, that there is a high chance she won’t make it, but if she does then she will have a better chance of survival. This blows my mind when I think about it.

She made it through the first 24 hours.

This is where it gets a little blurry. In the first week, I spent every hour sitting beside her and only went back to my room to change clothes. The nurses encouraged me to try and get some sleep, which I was incapable of doing and I was given sleeping tablets to help with my exhaustion and so it could all stop and I could rest. They would have to reassure me that she was in good hands to get me to get some rest in my room. After about the third day, they became very concerned with her progress. She was on so many drugs, her little lungs were rice paper thin. They were worried about her lungs tearing and she had seemed to stop progressing. They explained it as she has platoed. They could only give her one more does of Surfactant (clears the lungs) and pray that it is enough to push her to respond. This I remember and my response was ‘do it’ and I struggled with why they were asking me such a question, just do what needs to be done.

We were blessed!

It gave her the push she needed and she started progressing again.

Throughout this entire process my milk was coming in and I was having to express into bottles without knowing if it was ever going to be used. In the end most of it wasn’t. In her first week she was on life support so that milk was thrown away.

After a week she became strong enough to come off the life support and be assisted with a permanent oxygen supply hooked up in her teeny tiny nose. And I got to hold my baby for the first time. I can’t really explain what I was feeling when they put her in my arms. I was so worried I would hurt her, there were still so many cords and lines attached to her that would pull on her whenever she was moved. She was in my arms, I couldn’t believe it. Her skin was so soft, she was so light and tiny (from losing so much weight), so fragile. This little girl that was beating the odds that were dealt to her, so tiny but so brave and so strong. I placed a light blanket over all the cords and lines and we just sat together. I admired every inch of her. She was so lovely. And then it was my spouse’s turn to hold his little girl. His tears were flowing, mine were still not.

As she was now being taken off life support we received the good news that she would be transferred to the special care unit (the room next door) to be monitored and recover. No one knew how long this was going to take. A room had also become available in NICU and I was moved up there closer to her, so I could begin the process of feeding and caring for her aswell. Now that this week had passed, my spouse also had to return to his job, three hours away. So I would again be on my own with no visits except weekends. I didn’t want to be alone again, but I had no choice.

I spent my days and nights in the NICU ward, walking the 10 metres from her medicrib to my room. I don’t remember going outside and I was too scared to leave her. I would sit with her all day and the nurses would wake me by phone when she was crying for a feed at night. I have to say this was pretty gruelling, to be woken by phone with someone saying ‘she’s awake’ and I would appear from my room to settle my baby. She fed the best she could, little bits at a time. My problem was that I had so much milk it would almost drown her by gushing. I remember one of the nurses saying to me ‘you have enough milk to feed triplets’, and oh boy did I feel it. It had no where to go, my little girl couldn’t drink that much, she was barely recovering and barely drinking. But it was enough to make her stronger.

There was one time I remember sitting on my bed in my room and one of the nurses walked in and said ‘I have a visitor for you’, they started to wheel a baby in. Now, not long before this they said to me that if she recovered enough she may be able to have a visit to my room and may be able to stay in there with me with the oxygen tanks. So you can imagine my surprise when the nurse entered my room and said we have a visitor and I saw the baby being wheeled in, I nearly exploded. But within two seconds my heart hit the floor with a thump when I realised that it was another baby and her mother. I was so disappointed in that moment. I thought it was her, I thought I was going to get a chance at feeling normal and having my baby in my room. As there were two seperate beds in the room, the woman walked to the other bed, the nurse wheeled the baby next to her. I said ‘hi’ to the woman and she barely acknowledged me. She layed on the bed with her back to me and never spoke to me. She was gone the next morning. I know now that she was dealing with her own struggles, I understand that. But I was so lonely, I wanted someone close. I was so upset by that moment. I was never given any counselling or offered any emotional support while I was there. No one came in to talk with me to help me cope with what was going on and how to process it all. It was literally one foot in front of the other, one day at a time. Sometimes I wish I could go back in time and wrap my arms around myself and say ‘I’ve got you, I’m here with you’. It saddens me nowadays to look back and realise that someone can be left to process this kind of trauma alone, that no one reached out to me to talk or counsel me. And my hope is that women these days are getting that kind of support.

For five weeks I continued the one foot infront of the other, watching my baby get a little stronger each and every day, feeding more, starting to do more baby things. I even started to change her nappies and had the glorious moment of being pooed on. And when you have nearly lost your baby, you will take anything, even if that means you are suddenly covered in baby poo. Even though she was not back to her birth weight she was much bigger than all of the other babies in NICU at the time. It broke my heart to witness these parents with their babies.  I remember a couple coming in everyday to see their twins, which were directly across from my daughter. It was a wonderful and heartbreaking thing to see all at the same time. These babies were so tiny. I remember one baby coming into nicu not long after my daughter, this one was so tiny just 500 grams. I only knew this because I had become a fixture and the nurse at the time told me. The next day this little baby wasn’t there and I was told the little one didn’t make it. My heart sank. This is the reality of nicu, so many stories, so many coming and going.

The walls were lined with pictures of babies who had made it. There was one in particular I remember looking up at right inside nicu that gave me a glimmer of hope.  It was a picture of a baby that was just like my daughter in the beginning and next to that picture was her as a 13 year old happy and healthy.  I took so much from that, I can’t even begin to explain. It is something I would like to do. These stories are sometimes that only thing we have to hang onto when there is nothing else.

Eventually it become our time to leave. I was excited and petrified, there were so many emotions. I was afraid she would stop breathing without the assistance of the oxygen. They reassured me she would be ok and they wouldn’t let her go if she wasn’t. They didn’t give me any oxygen to take and said she shouldn’t need it. Imagine hearing this after spending six weeks trusting them doing it all for her and monitoring her around the clock. I wasn’t feeling very confident. She would be transported back to the hospital she was born in by ambulance, checked when we got there and then they would release us. I was absolutely petrified and I did not want to leave the safety of the nicu walls. But again, I had to take the next step. And we were released.

Our first night home I slept my daughter in her pram next to my bed and I watched her chest rise and fall the entire night. THE ENTIRE NIGHT. I did not sleep. I couldn’t. What if! But she made it through the first night and continued to improve and sleep well and grow stronger.

My daughter is turning 14 in two months.

When she was born I didn’t think I would get to see the day, and now, what happened seems so distant, but at the same time, it will never leave me.

She has never had any related heath problems since, no brain damage, no breathing issue. She is very intelligent and is very excited to go onto university and study science. It is her best subject. She loves school.

I know her life is a miracle, I know there were angels standing over her the entire time. She beat the odds of life, they were highly stacked against her. When I interact and look at her now, I can see exactly how and why she made it. She is such a strong person, she believes in truth, she is a fighter and will not stop until she reaches her goal. I can now see her strength that pulled her through, it was more than will power.  It was a divine power deep inside of her. She was determined to be a part of this world, to live and experience all it has to offer. Nothing was going to stand in her way. Much like she is today.  And I believe she will bring so much to this world. I believe she will change this world for the better and bring so much more light to it.

I don’t think I have fully made peace with my experience or healed from it, but watching her grow into the healthy young lady she is today does help. I’ve never known why and will never know why, other than, she is special and has a message for the world. She had to be here. She had lessons to teach me. And writing about it does help. This is the first time I have done that. I hope by sharing my story I can lay a little support for other parents going through a similar thing. Please know, you are not alone. Please reach out for help, please let others help you. Please know that the universe is watching and guiding everything that is happening.

I have chosen not to include picture of my daughter while  in NICU. It’s hard for me to look at. Maybe I will in time. But not yet.

If you have made it to here, thank you for listening to my story. I admit it ended up being longer than I expected. And there is so much more that could still be amongst these words. It was one of the unforgettable moments in my life, and there are others, that I have experienced. So I wanted to share it in hope of helping another.

Much love

Justustwo xo

 

 

 

 

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