Sheila shares an incredibly moving story with us this afternoon, documenting her daughter’s rather scary arrival at just 31 weeks, and through the 117 (yes, you read it correctly, 117!) days it took for her to be well enough to come home. Such an inspiring story and I’m honoured to be able to publish it here.
Sounds just like a number when I say it now. Quite a large one though. I remember one of my first days and hearing a mum mention her child and 36 days. I was like ‘Wow!’ Little did I know we would be nearly triple that. If you are a NICU mum you’ll understand counting like this. What does it mean? Yes, after 117 days I finally brought my baby home.
My pregnancy was hard going. I threw up all day every day. However, after suffering from two miscarriages I didn’t mind, this was good a symptom. Something to cling to. I think I was pretty naive in my first pregnancy or was it ignorance? More recently in it I felt awful, had dizzy phases, flashing lights, wasn’t passing urine, was puffy and swelling and had awful headaches. This was part and parcel of being pregnant. Wrong! I remember reading an article in a book and it was like a tick list. I had this ‘thing’ called pre eclampsia. I’d never heard of it, then, but I most certainly fit the bill. I read the piece on a Saturday night. I thought I should get it checked out. Not wanting to bother people I decided to go to my GP on the Monday. If the truth be known it was a relief. I am a teacher, I wasn’t given a class as I was going off on maternity leave at the October half term. I was doing a lot of cover. The Monday I decided to go to the GP I was due to cover a reception class, my least favourite year. It would be a relief not to do it.
So, off I trotted to the GP. It wasn’t actually at my own surgery but another one that was attached to my practice. I had my BP taken. I don’t remember the Dr saying anything. She then asked me to give her a urine sample. I tried. I failed. I kept the tap running and staring at it in the hope it would make me go. I have never shared this but I even drank from the tap in the hope that I would. Nothing. I headed back to the GP I said I tried but failed. She didn’t seem bothered by then. She informed me she had spoke to the hospital and mentioned something about my blood pressure being 186/126 (didn’t mean anything to me at the time) and that the hospital wanted to see me. OK I thought. I wouldn’t be going into work today. Then the bombshell, they wanted me to travel in my ambulance. Why? My car was just outside. As far as I was concerned I was fit to drive.
I sat in the Drs receptionist area in tears to my husband on the phone. He said he would come to me. It seemed like forever I was waiting for the ambulance. It probably wasn’t that long. My husband literally arrived as the ambulance did. It felt weird travelling in an ambulance. I was fine. Wasn’t I? I should have picked up the serious nature of my illness when we arrived at the hospital. They took me straight to the labour ward. No triage, straight there. We walked past staff who said, ‘is this the lady from the doctor’s surgery?’ They were expecting me. I went into a room. I can’t remember how many were in there but there seemed to be a lot of people working on me. Before I knew it I had a cannula in, bloods taken, BP checked, catheter in, on magnesium sulphate and I was in a hospital gown. I was also on a trace machine. My bump was small and the straps big so it was held more closely to my stomach with sanitary towels. I must have looked very glamorous. I was sure I would be going home with some tablets that night. I remember a Dr mumbling ‘worse case scenario’ to me. Only in hindsight did I realise what this meant. By late afternoon I realised I wasn’t going home. They were talking more about delivering my baby. No they couldn’t. The baby would die. I had no experience at all of premature babies. I was sure my baby would die. I had a steroid injection. I remember them talking about delivering the baby. ‘Can we see if the medication was going to work’ was my response. Every day was sure to make a difference. I’m not sure if I slept that night, I can’t remember. My arm was sore from the BP being checked. There was a constant light in the room. Martin attempted to sleep on the chair beside me. The Drs came and went that morning. I was pleading to be left. They would review me later. I had a scan to see how big the baby was. Around 3lb 7oz they thought. The Drs came back later that day. I couldn’t have a premature baby. I needed to keep the baby inside me. One consultant kept herself back when the others left. She basically told me how ill I was and that my baby needed to be delivered. It was doing neither of us any good. I agreed my baby would be delivered the following morning at exactly 31 weeks.
Panic set in. I had NOTHING, I mean NOTHING. I had this sudden urge to provide for my baby, it was all I was able to do. I needed clothes for the baby. I needed nappies. My hospital bag didn’t exist. I tried to write a list, guessing, more than knowing, about what I needed. Off Martin went with his list, including maternity towels!
I was first on the list the following morning. It felt weird walking to theatre. I was going to have a baby. Part excitement, part fear. The baby had to be OK. I clung to statistics of 31 weekers given to me by the doctors yesterday. There seemed to be an awful lot of people in the theatre. I didn’t realise it at the time but some of them were NICU staff. It began. It felt like washing up being done in my tummy. I didn’t realise they had delivered the baby until I heard a small cry behind me. My baby was here, 10.26 3rd October 2007 3lb 5oz. A girl they told me. I wanted to feel delighted. Deep down I think I really wanted a daughter. I had already lost my mum and really wanted a daughter. I didn’t want to get excited. The unknown of what would happen was scary. My first image of my daughter came. She was wrapped in bubble wrap and a blanket and before I knew it she was whisked away. I remember a tear falling down my husband’s face. I can’t remember if I cried. I was probably numb. Was this how being a mum felt? I didn’t like it. I was transferred back to HDU. I have no idea how many times I asked him but I kept on at my husband to check our baby. They kept telling us someone would come to us once she was settled. No one came, that couldn’t be right. Something had to be wrong. That must be the reason for why they weren’t coming to us. I got the HDU nurse to phone over. They were still working on her. I needed to be there. A mum looks after their child. This was a ‘great’ start. I have no idea how much time went past but eventually my husband was able to go over and meet our child. It felt like forever for him to come back. I was in an internal room. I had no concept of time of day. It felt like a lifetime, but Martin finally came back. She was doing ‘OK’ he told me. He showed me a photo. She was the image of my brother. The photo showed tubes, wires and a ventilator. My poor baby. I don’t know how many times I sent my husband over to see her. How is she? Any change? How is she? Any……. The day continued. I was a mum but I wasn’t. Apparently I was still very ill, did that matter? I needed to get better for my baby. The day my first child arrived continued. I wasn’t with her.
Aoife as a newborn
Day 2 came. I was finding out how my daughter was via the telephone. A HDU nurse talking to a NICU nurse. I should be taking phone calls about her. People asking me, her mum, how she was. I didn’t know. I was still too ill to go to her. Thankfully later that day an ‘old school’ theatre nurse was covering a break in HDU. I think she could see my pain, my need to see my daughter. She threw the health and safety book out of the window. With a shot of morphine and a ride on a wheelchair for only a few minutes I would get to see my daughter. I don’t think I took anything in on my first visit to NICU. All I clearly remember is the ‘sun bed’ lights. It didn’t matter I was able to look at, not touch, but look at my baby. My beautiful baby girl. You could barely see her face due to the ventilation tube. Martin said I was allowed to touch her. The hatch opens and you can put your hand in. When I think back to this ‘allowed’ I was allowed to touch my child. It didn’t sound right. But I did. My first touch. I wanted her to know that mummy was here. Before I knew it I was heading back to NICU. It may have only been 5 minutes but I had met my beautiful daughter Aoife Bernadette.
Once my BP ‘settled’ (I loosely use the word settled) it became a routine of Martin taking me to Aoife and me spending ages looking at her and trying to hold her hand. So this is what it was like being a mum. What happened to all those sleepless nights? I was being kept awake due to the lights on the ward. Dressing the baby? She wasn’t wearing clothes as the needed to ‘get’ to her with all the wires and monitors. Changing nappies, I was to learn about ‘cares’.
If I was to continue every paragraph starting day 1, day 2 etc. we would be here for a long time. You start to cling for hope with dates your child might be going home. They kept talking about being home by their due date. Although I wanted her to be home now I ‘knew’ she should be home by Christmas.
It felt like forever being in HDU. I was finally transferred to post natal on a Saturday evening. Transferred to the ward without a baby. I was lucky as they put me in a single room by myself. At least I wouldn’t have to talk to other mums about their babies. I didn’t want sympathy for why I didn’t have my baby with me. Yet at the same time I didn’t want to be joyful to somebody else. I forgot to say I had an external window in my room. I was able to see what the weather was like. See daytime turn into night.
So many things taken for granted. I must have dozed off and was woken by some loud drunken cheers outside. I sat by the window watching two drunk men. I had no idea why they were at the hospital. They didn’t seem injured. It felt surreal that they had been out possibly celebrating yet my life and celebrating seemed to be on hold. In saying all of this it was nice to see life. I swear being in an internal room any longer would have driven me crazy.
The NICU nurses asked me was I going to express milk for my baby. It is the best for them. I was shown the ‘milking’ room. Another internal room! It had two hospital grade pumps a steriliser and a screen in it. Little did I know I would be spending an awful lot of time in this room. Reflecting now, five years on, I can still hear the exact noise of the pump. It was a small thing, but big thing. They say breast milk is best and I needed to do the best for Aoife. Pumping, putting the milk into a sterilised bottle and writing her name on a label. Just like I have been writing labels on school uniform lately! She wasn’t ready to have any of this milk yet but I had begun stock piling.
My days in hospital rolled one into another. I quickly got into a routine of pumping, having meals and spending time with Aoife. I was forever being called back to the ward to have my BP taken or see a Dr. I forget how many pills I was on. A lot, trying to control my BP. I wasn’t allowed on the NICU ward between 9am and midday as the Drs were doing their ward rounds. I suppose a ‘positive’ in all of this was being able to recover from your section.
Aoife remained ventilated. They explained they were going to try her on another ventilator. I am sure they called it a puffin. They also explained they didn’t want to keep her ventilated too long as it would damage her lungs. At this point I pretended to understand but really didn’t. It was after day 13 that Aoife finally moved off being ventilated and onto CPAP.
I still can’t remember what ‘day’ I was discharged from hospital. I know I had been in hospital for nearly 2 weeks. I wasn’t sleeping and my BP was still high. However I needed to go home. I felt like I was becoming institutionalised. I would mention it to Drs but they would always leave it for the next dr to review. I think with my BP they didn’t take risks. Eventually I found a Dr who was willing to discharge me as long as I came to the ward twice a day to ave my BP checked. In one way I was excited. I was getting to go home. We had prepared nothing for Aoife at home. I needed to do my ‘nesting’. I knew it would be a while before she came home but I wanted to be prepared. I thought I was ok with it but I wasn’t. I burst into tears when I had to leave Aoife. Why? I had done it so many times before to return to the ward. This time it was different. I was leaving the building. For the first time I was leaving her ‘alone’ overnight. What sort of a caring mum was I? I cried when I was due to leave her. I really cried. What was I doing? I was excited about going home but how could I leave her.
I have seen so many parents walk out with their newborns looking so happy and proud. I left with my husband feeling numb. That magical moment lost forever. Someone once said to me, ‘well at least you don’t understand what it was like to leave with your baby. How do you think I felt after leaving one of my children in SCBU after bringing my others home’. They just didn’t get it.
Being a NICU mum with no other children brings you into a routine. You couldn’t get onto the ward until midday. I used to feel guilty if I wasn’t there around that time. So I would get up, have breakfast and head to the hospital. Oh, and of course express and take my milk bags in!
Day 13 was a special day. Aoife came off her ventilator. Onto CPAP but it was progress. She was breathing on her own albeit with the aid of CPAP and oxygen. A few days later is a day I will never forget. My first cuddle. Day 17. Some parents have the joy of this within seconds of birth. This was so special. She felt so light and fragile. I was worried about pulling a wire out, not giving her the oxygen she needed. I remember her looking up at me. Did she know I was her mum. I look back at a photo of this cuddle of Aoife looking at me. To this day I still feel like she is saying why did you do this to me.
I’ve just remembered the alarms that go off in NICU. When you spend some time there they become second nature. However, at first every time they go off you feel as though your child is going into cardiac arrest. The nurses usually calmly walk over, look at the baby and tell you they are fine. After a while you sometimes even realise why they are going off.
NICU became a daily routine in our lives. Although still fragile we became a lot more confident with Aoife. We would go in, thoroughly wash our hands, look in at Aoife (who was usually asleep) and read her chart. A part of me would hope if she got to a certain weight she would be coming home. I used to ask the nurses what was the minimum weight to get home. I later realised this didn’t matter. Aoife seemed to pass most of her tests. Hearing was fine, ROP eye test, eventually her PDA closed up. However she was just too fond of the CPAP and oxygen. We got used to carrying out her ‘cares’ every four hours. A small thing but it was something to change her nappy. When she was able to have milk we would hold up her feeding tube. A tube which she became fond of pulling out! All small tasks but it meant I was doing something.
As I said a lot of days blended into doing the same thing. Most were spent staring at Aoife or stroking/ holding her hand in the incubator. For me this was me being mum. Showing her I was there. One day as I was sitting there stroking her hand a nurse (not one who normally looked after Aoife) told me I was probably annoying her. By doing this the hairs on her body were fine and instead of giving her comfort I was annoying her. I couldn’t even do this right.
After 76 days of being on CPAP Aoife finally came off it. She now was on oxygen. A fair bit f it but a move in the right direction. Most 31 weekers have a relatively ‘easy’ time in NICU. Most make it home around 37 weeks, pretty much all of them by their due date. This was my goal. I thought at least I will have her home by Christmas. Christmas was 3 weeks after her due date. Early December it became apparent she wouldn’t be coming home. Devastated doesn’t even begin to describe how I felt. It was as if every goal I had was slowly being taken away. Would she ever be home?
Christmas came and went and so it seemed New Year would too. We had already decided we wanted to see the New Year in with her. By this time Aoife had made her way to the SCBU part f the ward. She basically was being kept in because of the amount of oxygen she needed. I went in during the day of New Years Eve to be told she was being transferred to the SCBU of the other hospital. This was good news as the next stage was home. However NICU there had become like a second home. It was very emotional to leave. Aoife got to have her first blue light trip in an ambulance that afternoon.
Aoife at New Year
January passed by quite quickly. We were preparing to bring her home. Home would mean being on oxygen. That didn’t matter. Soon we would be a family at home. I would be able to just lie on the bed with my baby. I could choose what she was wearing every day. My baby was coming home. 117 days after being born we finally brought Aoife home on 29th January 2008. She was nearly 17 weeks old (8 corrected/8 weeks after her due date). We have been blessed with her. The consultant said to my dad she would be in and out of hospital with her lungs. We were lucky. We had 2 hospital admissions. Quite a few A & E visits and I lost count of the nebulisers we had.
Aoife aged 10 months
When Aoife was 18 months old we dumped the oxygen. She has thrived ever since. Aoife started school in September. I know every mum is biased but she is as bright little button. Since September she has took to reading like a duck to water. We have our first proper parent’s evening on Wednesday. I am sure I will find it hard not to cry.
So many people say to me it must have been so hard. I won’t lie and say it wasn’t easy but I knew no different. I believe we were so lucky. Our story could have been so different.
Aoife’s first day at school
15 million babies are born preterm around the world every year—that’s 1 in 10. More than 1 million babies die due to complications of preterm birth and many of those who survive face a lifetime of disability. Both Tommy’s and Bliss raise funds to help both babies and families who are born prematurely and require special care. You can find more about what they do, or make a donation, by clicking the links provided.
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