Despite knowing when I was in labour Rupert would be whisked away from me mere minutes after being born, I was little prepared for seeing him all wired up in an incubator, and the highs and lows of NICU life.
I have wanted to write this post for a while, in fact I started parts of it late one evening while sitting alone in the NICU parents kitchen over a camomile tea. As much as I wanted to write and share my experience, it has taken five months for me to feel ready to revisit the emotions that come from a stay on the NICU. Guilt, anger, helplessness, and the worry about taking Rupert home. Yet I wanted to share it to look back on how far Rupert has come; additionally in case it could help anyone else facing a NICU stay. Also to show my gratitude and thanks to the Doctors, but mainly the wonderful Nurses who helped to get Rupert home. I will never forget their care and compassion as well as their evident passion for their little patients. I left the NICU with a whole new level of appreciation and admiration for these special nurses.
When I walked in to the NICU to meet Rupert properly on the afternoon of the 29th January, I was first hit by how warm the ward was. After I had acclimatised to the heat, I began to feel like I had landed on another planet. It took me a while to understand what was required of me as I felt my role as Rupert’s mummy was redundant. I worried that he would not know who I was would fail to bond with me.
Later in the evening, I was allocated a bed, it was to be on a ward a floor down from Rupert. I wanted to cry; I felt a million miles away from Rupert and the ward was full of mothers and their crying babies. Hearing the babies crying and watching their mothers picking them up to comfort them was too much for me, at a time when my own baby was in an incubator on oxygen. In addition, I had only been able to hold my baby for a few minutes when he was born. The only plus point was that Chris could stay with me on the ward and I needed his support. Yet if he stayed, he would have to sleep in a chair, something which he was not willing to do after sleeping on the floor the previous night. I felt torn as the only other option was to go home together and return the next day. Leaving Rupert was not something I could have done. We were informed that there was a private room available for £300 per night. We considered this but then thought this was crazy, so I went back to my bed on the ward with the mothers and their healthy babies and started to settle myself in for the night while Chris got ready to go home.
As I was getting into bed, Chris came back and said that the duty head nurse felt so ashamed about the situation I was put in that she had managed to get us in to the private room FOC for that first night. I remember then being given an electric breast pump, shown how to use it and advised if I wanted to breastfeed then I should start expressing ASAP. This was not how I expected my BF experience to start. It was pitiful the amount of colostrum I produced that first night.
Walking in to the NICU early the next morning after very little sleep, the reality of the situation hit home as I took in all the new sounds, smells, machines and ward routines. I felt like Rupert was not mine, that he belonged to the nurses who at the time were strangers, strangers who were able to do more for him than I could. I felt that I had nothing to offer him as his mother. I was living in a fog, a fog that slowly began to lift as I became familiar with day to day life on the NICU, speaking to the other families and settling in my new routine as well as getting the opportunity to be more hands on with Rupert.
Initially Rupert was on oxygen, being treated under phototherapy for jaundice, being fed via a tube and was receiving IV antibiotics to ensure he had not contracted GBS (more on that HERE), it later came about that there had also been a concern over sepsis, thankfully this was not the case.
For the first week in the NICU, I spent my days feeling very much like a dairy cow as I was expressing every two hours to build up a bank of milk, (anyone who has pumped will no just how unfun this process is). I was adamant that I did not want Rupert to have formula if I could help it, as I knew my milk would offer him protection from infection and give him all the tailored nutrients he needed.
Many hours went by where I would just be gazing over Rupert’s incubator taking in every inch of him, his teeny tiny feet and hands so bruised from all the pin pricks from daily tests to check his bilirubin levels among other tests. Taking in his sweet baby smell, watching his expressions and looking on as he slept, wriggling in the ways that not so long ago he used to in my tummy, where he still should have been had he not been so eager to come in to this world.
It was 48 hours before I was able to hold Rupert, something that I found extremely hard as I watched other parents picking up their babies to offer them comfort when they cried or to feed them. At the time I had not considered that they had perhaps been in my shoes days or weeks earlier.
All I could do was offer Rupert a finger to hold, gently talk to him or containment hold him in his incubator by placing one hand on his head and one on his bottom. I was not even able to see his beautiful eyes as he had to wear a mask to protect his eyes from the phototherapy lights. Although the mask was too big and would often rise up.
When we finally did get that first cuddle, it was the most amazing feeling in the world to hold him. Although I felt he may break as he was so small, it was also hard to now how to hold him as he had so many wires coming off of him.
Rupert shared his cot with a few teddy’s and a crochet octopus knitted by Octopus for a Premi, a group of wonderful people who knit and supply the octopuses to hospitals to offer comfort to babies like Rupert, who decided to come into the world a little earlier than anticipated. The tentacles feel like the umbilical cord which comforts them as well as helping to reduce the risk of the them pulling their wires off, something Rupert was very good at.
I found being in the NICU a very isolating and incredibly lonely time. We took the decision early on that Chris would not take paternity leave while we were in the hospital as he would not get any quality time as a family. As such the majority of the time I was alone with my thoughts; I filled my days by getting involved where I could with Rupert’s care, chatting to the lovely nurses, reading books by Rupert’s crib and planning all the places we would go once we got out and were all together as a family. On occasion Chris would bring his laptop in and work from the ward kitchen for the day so that he could pop up the corridor and see us as he pleased.
During the two weeks on the NICU, I only ever left the hospital twice to go home on two alternate of nights, register Rupert’s birth, see the dogs and rest. Upon leaving I would cry all the way home and feel immensely guilty for leaving him (I still punish myself for these two nights away now), but I knew how important getting a good night’s sleep was in order to be strong for my baby boy. On the nights I spent at home I would call throughout the night and early morning to check in on him until I returned to his side. I could not get back soon enough.
One evening I went home after a lovely day of skin to skin and no phototherapy, I was saddened to return the next morning to find Rupert was again under phototherapy as his jaundice levels had risen in the early hours of the morning. I soon became aware that this was quite normal where jaundice was concerned, that levels would rise and fall until stabalising. Rupert came off the oxygen that day, we were one step forward and one step back. He had also been having bradycardia (BCs) where his heart rate had been dropping on occasion throughout that day, I was assured was a normality in a premature baby, yet this was no comfort as this was my baby and my heart stopped every time I heard one of his alarms going off. I quickly became accustomed to what each alarm meant, and the worrying subsided a little.
We kept visitors to a minimum as we wanted to introduce Rupert to family and friends without him being attached to a load of tubes and wires; we were finding it hard enough seeing our precious baby boy all wired up and did not want this to be the way others met him for the first time. We only had out parents visit and my auntie Kim. My mother visited more or less every evening and with her visits came home cooked food opposed to the ding meals we were becoming accustomed too. There was only a microwave in the ward kitchen and tiny fridge and kettle so our dining options were limited.
What made things more upsetting was that only parents could hold and touch the babies on the ward so our parents could only look over the crib.
The nights were extremely long and even more lonely, I remember crying saying goodbye to Chris most evenings. My bed was down the corridor from the nursery in the mother’s room, there was a total of six beds, only one other was occupied during my stay. During the night I would often sit in the dimly-lit nursery next to the crib and express and then when Rupert was strong enough to feed without the tube the nurses would come to my bed and pop their heads around the curtain to let me know he was awake and hungry. I would then feed and cuddle him until he settled to sleep once more. At night despite their being other babies in the nursery I was the only mother who came into the ward at night/early morning (sometimes I was the only one there until 10am, I was in a bubble of Rupert and I loved when it was just us in the nursery.
It took almost a week before Rupert was strong enough to be breastfeed and even then, he could only manage a couple of times a day building up to every other feed before the tube feeds could stop altogether. That first time feeding him felt like such a huge achievement for us both.
After a week in an incubator in the high dependency nursery, he was able to be upgraded to the nursery next door where it would be a case of establishing feeding and growing. With this also came the move out of the incubator into a semi normal cot where he would then need to wear clothes for the first time.
Wearing clothes posed an issue as nothing we had fitted! I never knew that finding clothes for a premiee baby could be so difficult. We were extremely grateful for the Emily’s Star box which had been donated to us, as not only did it contain many useful items there were also a couple of outfits in there to keep us going until we could dash to the shops. We discovered a online store called Little Mouse which we used to buy some bits at the start.
At around ten days old it was discovered that Rupert had tongue tie which was making his feeding more difficult as he was not able to latch on properly. A couple of days later a procedure to snip the tongue tie was carried out (I made Chris sign the paperwork for the procedure as I felt awful that yet again, he had to endure yet more discomfort). Immediately after the procedure Rupert was carried back over to me so that he could feed to help stop any bleeding and offer him comfort. The difference was apparent instantly and from this point we turned a corner and were able to establish feeding.
Once all the tubes and wires started being taken away, we were informed that as soon as Rupert was able to go 48 hours without needing tube feed top ups, we would be able to make our way home as a family. Given this encouragement, I dedicated myself to being in the hospital 24/7. Within a few days we were given the news that Chris could come in and stay the night in the family room, a room that is set aside for when babies were ready to go home to give parents a night or two where they still have the nurses nearby if needed. Hearing the words “you can move into the family room today” I was overcome with emotion. Once one of the nurses has helped Rupert and I move in and the door was shut behind us, I sat in the reclining chair with him, held him tight and cried, I then ate a whole bag of mini eggs! I stayed in the same position cuddling him for hours until Chris arrived from work in the evening.
I learnt so much during our time on the NICU, in a way it was like a crash course in parenting. The nurses were fabulous and attentive, and I will never forget them and be forever grateful for all that they did for us. As we drew closer to being able to go home as a family, I became anxious about going home. As despite longing for the day to come where we would walk out altogether, I had to come to terms with the fact that the nurses, (as my auntie once referred to them the best babysitters you could ever ask for) and monitoring equipment that told me when something was wrong were not coming with us.
We were given the approval at 3pm on the 13th February that we could take our baby boy home. There was still a question mark over Rupert’s weight as he had not yet fully made up his birth weight, (he was born at 4:11lbs and went down to 4.5lbs, and at discharge was just under 4.10lbs). The Doctor signed us over to an outreach nurse who would visit us at home weekly until they were satisfied that he was growing and retaining weight.
We got Rupert dressed in his going home outfit, wrapped him in blankets and I carried him in my arms out to the car and outside for the first time in his life. It was a bitterly cold day that day.
Once out at the car we were reminded of just how tiny he was when we put him in the car seat. It almost swallowed him up! The 40-minute car journey home made us both nervous, despite me sitting in the back of the car with Rupert holding his hand we felt scared to now be fully responsible for such a tiny and beautiful human!
Having now spent time on the NICU it has opened my eyes to all the times that having a baby in hospital and going home in quick succession is not always possible, for so many different reasons. Although our stay in the NICU was only two weeks, at the time it felt like the longest two weeks of my life. There were so many other families on the ward with babies fighting much bigger battles than Rupert’s and their stories will stay with me forever.
Should you ever find yourself where we once were, know that despite the dark days you can do this if you take one day at a time while being gentle with yourself. Having a baby in the NICU is tough, yet your presence will help your baby through what are extremely trying times.
These are the things that personally helped me get through day to day life on the NICU
- As I wanted to BF, expressing every two hours as soon as I could to build up a milk bank.
- Once I was able to, getting as much skin to skin time with Rupert as I could. Not only was this really special time together, studies show it also helps babies grow, reduces both theirs and your stress levels. Skin to skin also helped me to increase my milk supply.
- I offered Rupert reassurance by talking to him.
- I made notes of all I wanted to ask the DRs on the ward rounds
- Being involved with Rupert’s everyday care needs such as washing, nappy changes, this helped me feel part of your his care team and not like a spare part in a well-oiled machine. It helped me to increase my confidence and bonding with Rupert too.
- I was told that babies have a strong sense of smell and that a mothers smell is incredibly important to a baby as it is familiar. So I kept a piece of material inside my bra and then after a day put in the incubator when I was not with him.
- Knowing that if I needed to have a break, I should take one knowing no one would judged me for it.
- Talking to family, friends and especially the other parents in the NICU.
Before I sign off on this post I would like to say thank you to those of you who sent messages of support during those dark days and who often now ask after Rupert, you kindness will never be forgotten and really helped me in those dark moments.