Having premature babies, for us premature twins, brings with it certain challenges, time in special units, for us it was a SCBU. It’s hard on the parents, who feel quite helpless and are filled with fear, here’s our story;
Our beautiful babies arrived safely at just before 10am on the Monday morning, by elective c-section. They were born 3 minutes apart from each other and immediately after they had been delivered and fully checked over by the team of paediatricians, they were taken to the Special Care Baby Unit (SCBU). I was only able to see and hold them for a few seconds on their way there, they both needed some support. I asked Chris to go with them, I needed to know that he was with them, I didn’t want them to be alone with strangers. Incredible isn’t it, becoming a mummy that is, how your priorities change, the babies were immediately my priority! Chris on the other hand was still worried about me and wanting to not only make sure that I was ok, but also that I felt involved.
Chris kept coming back in to me, showing me pictures, he even got to change a nappy, which he felt terrible about. He wanted that to be my job, the first nappy and all that. It was surreal, these little people had come out of me and they were whisked away. It was a really odd feeling, suddenly I was no longer able to protect them. I felt a bit like a spare part, I couldn’t get up and go and see them, I just had to rely on other people passing on information.
They say you have an immediate bond with your babies, if I’m honest, I felt an immediate need to protect them, but I didn’t feel that gush of love that everyone talks about. Now, maybe that was because of the C-Section, does that remove that from you, or could it have been the fact that I held them for literally 10 seconds or so. Could it have been the fact that I didn’t get immediate skin to skin, whoever knows.
During our NCT classes, we were advised to write a delivery plan on a separate piece of paper, even me, who was having an elective section. They advised me to ask for the cannulas to be put in level with my elbow so that the tubes and wires didn’t interfere with skin to skin. They also suggested that I request immediate skin to skin for that bonding to start. Of course this was with the view that your plan would be followed. No-one took notice of my plan, they didn’t even look at it, quite frankly, that wasn’t the priority, it wasn’t important, it didn’t even factor in the delivery. It was all about the babies, quite rightly so!
When I had been stitched up, I have no idea how much later, I was ready to go back up to the ward. Thankfully, I was given the option to go, via trolley, to SCBU to see my babies. That was the first real time that I saw my precious babies, so tiny and all wired up in incubators, monitors beeping everywhere, alarms going off, I was terrified they wouldn’t make it. I was only allowed to stay fleetingly. I had a quick conversation with the nurse allocated to them, but if I’m honest I didn’t really understand whether they were doing well or not, there was so much to take in. I was then taken up to my room and pretty much as soon as I got there, food was served, I was ravenous, other than that and feeling quite redundant, I felt great.
Later that afternoon, I was offered the opportunity to go and see my babies, who were still nameless at this point. Naturally I jumped at the chance, not literally you understand! This meant getting out of bed, getting in a wheelchair and going via a lift and down to the unit. The next half an hour, I remember vividly, the wheel chair arrived, in the room was Chris and a nurse, both there to help me. At this point, I should say that the discomfort following the section was minimal, I guess they had pumped me full of painkillers after the section. However, on other people’s advice, I took every drug that they offered me, which was liquid morphine, paracetamol and Ibuprofen.
I had absolutely no idea what was about to hit me, it had all been very easy until that point. I started to make my move to get in to the wheel chair and omg, the pain was horrific. I was in tears and I’m quite a tough cookie, it was horrendous, there were points at which I cried out loud and I was quite caustic with the nurse and Chris. Every slight move hurt, sitting up seemed impossible, I felt light headed and quite pathetic. The nurse said I could try later, but that meant delaying seeing my babies, I needed to know that they were safe, I for one was not giving up that easily. I was struggling with the fact that, whilst technically I was a mummy, I wasn’t being a mummy, someone else was looking after them. After some time of crying and shouting, I was finally in a wheelchair, the pain was horrendous but failing to do it wasn’t an option!!
I felt every bump whilst in that chair, I kept yelling at Chris to go slower, eventually we made it down, I can still remember the ridge in the floor getting in and out of the lift. We were buzzed in and there they were, 2 tiny babies looking absolutely perfect. I couldn’t stand up to see them, but was still able to see into their incubators, I just sat watching them for a while, quite overwhelmed by it all. The nurses let me hold Nelli for a few minutes, we had skin to skin, it felt like seconds, I couldn’t believe this tiny bundle was my daughter. Roo wasn’t stable enough to come out, the nurses told me that he had been in CPAP for a short time, but he was off that now. Whilst the hospital was only a level 1, meaning that babies can only stay there for 4 hours if they needed extra support, they had given Roo an additional 2 hours. After that, the support he needed was minimal and therefore he could stay at that hospital with us. Other couples weren’t so lucky!
I just sat for what felt like hours, watching them both. It’s hard that you just can’t hold your baby, imagine how it feels when you have kept them safe inside you, given them everything they needed to be strong enough to enter the world and then you can’t hold them. It’s crushing but equally you want them to get the professional care that they need, it’s terrifying watching them, the alarms on the monitors going off constantly. The monitors were all explained to me, what was measuring what and of course, like so many other mummy’s with babies in SCBU’s, you become transfixed with them.
Mother nature hadn’t kicked in with regards to producing milk and I was very determined to make sure that they were fed with it. So, whilst I couldn’t do anything else for my babies, that became a priority. Now, no one tells you that when you have a section and your babies are premature, your body basically doesn’t trigger the hormones it needs to, to produce milk. So, not a simple task as those promoting breastfeeding may have you believe. I had plenty of support from the hospital, they taught me how to massage and to try to stimulate the milk flow. The first few times, it took 1 hour to produce 0.5ml and a lot of tears and frustration within that time. Chris would sit while I massaged, and he would withdraw the tiniest of drops into a syringe, as and when they appeared. I was desperate to breastfeed, and every drop was like gold. Chris missed a few drops which made me cry and get really frustrated with him because it was such hard work and once it was gone there was no more. This went on for a couple of days, I did skin to skin when I could but that was really limited due to the incubators. I would express like this 4/5 times a day and once in the early hours of the morning which was recommended.
After a while my milk came in, not masses but enough and 3 days after the birth I managed to latch Nelli on, which was just the most incredible feeling in the world. Day 4 we got Roo to latch, massive progress, it was worth all the hard work and tears. Let me just say, they didn’t just latch on you understand, it had taken many failed attempts to get there. The nurses advised that we buy dummies, something I didn’t want but as they were tube fed they had no idea how to suck, it made sense!
As soon as my milk started to flow I expressed at every feed time day and night to ensure that the babies got my milk only. There were times when I was ahead of the game and had some to store, what a great feeling that was! I used to gloat to the nurses at just how much I had produced, like a child running to a teacher to tell them how good they’d been, every little victory felt incredible. Whenever I could get them out of the incubator to latch on, I did.
You assume that giving them breastmilk, albeit through a tube, they will be fine but due to their prematurity, the nurses had to regularly aspirate their tummies. This affectively is removing the milk from the stomach to see if it has been digested. Its very odd watching them draw back the milk that your babies have had a couple of hours earlier to check it. It was this area that was the most challenging for us because until this was right, we couldn’t really move forward. It was a catch 22 situation because the nurses were trying to increase the volume of milk taken to enable a quicker discharge, yet on the other hand, it was setting the babies back as they couldn’t cope with it.
On the Thursday, so day 4, a consultant from a much larger, level 3, hospital in Birmingham came to do a ward round. He apparently visited weekly. He checked Roo and then left the ward. I asked the staff if he would be coming back to check Nelli and the assured me he would, he’d gone off to another ward. After an hour or so, I went looking for him, something told me he wasn’t coming back, and I wanted him to review Nelli. I found his registrar who confirmed he wasn’t due to come back to our ward, I expressed my concern and she agreed to have a word with him. He very kindly came back and checked Nelli over.
He was comfortable with both and their progress but did ask the nurses to reduce that the milk volume, to give them a better chance of coping with it. We then realised that they would need to be in hospital longer as a result, so on one hand you are happy that their needs are being addressed and on the other you just want them home. He also commented that had we have kept them inside me for another couple of days, it’s unlikely they would’ve needed tube feeding… why don’t they tell you that at the time!! However, once I had seen him, I felt a little better, that’s not saying our hospital consultants weren’t any good, because they absolutely were, but he was just another level!
Roo and Nelli were quite jaundiced during their first week, Roo more so, it became the norm to see them under lamps, I hated it, we couldn’t hold them during the lamp period, it was horrible. The lamps used to give me a headache from just sitting there so it really worried me as to how the babies were feeling under there. I used to panic about their little masks not being on just right, I’d fear it would damage their eyes. I didn’t ever want to question the nurses as they do this day in and day out, but it used to terrify me, I used to reach in and try to subtly correct the mask position to fully cover the eyes.
By day 3, I was beginning to feel human again, still in pain from the section, but it was more bearable. I noticed as the day went on, that the nurses weren’t as forthcoming with the pain relief. Whilst not a lightweight, I needed something to take the edge off the pain, when I spoke to the nurses they asked if I could manage with just paracetamol…. errrr no! Everyone has re-iterated several times that a section is quite big surgery and what, they want me to cope with paracetamol, I don’t think so! I asked for everything at one-point begging in tears. I didn’t rate the liquid morphine to be honest but had it for good measures anyway! The drugs took the sharpness of the pain away, leaving you just aching. I guess the nurses are testing you, to see if you are ready to be discharged because by day 4, I am being told that I’m being discharged.
And so, the next fight begins, there is no way I am leaving my babies in a hospital which is at best an hour away and in most cases up to 2 hours given the traffic on the M6. On top of that I can’t drive for 6 weeks, and I want them on breastmilk only. On one hand, we were relieved, poor Chris had been sleeping on a camp bed since we got there and whilst not a really big man, he’s equally not small and camp beds were not built for comfort; however, we also appreciated how lucky we were that he had been allowed to stay for so long. He still wasn’t allowed to eat the ward food though, they are quite strict on that, the food is for mummies only. There was one lovely lady who served food on some days who would ask if I’d like a little extra, she didn’t have to do that bless her, but it meant a lot.
The next battle was to get us moved back to Wolverhampton, after all that was our hospital for delivery and also we needed to move to be able to stay with our babies. Every day our nurses would ring around our local hospitals to see if they could re-house us and we hounded the nurses to keep trying two or three times a day.
Chris and I are both sales people, one thing we can do really well is schmooze people and get them on our side, it’s a natural instinct and that side of us really came alive at this point, we went into business mode. It’s the only way we knew to cope with the situation and it was so natural to us. We worked really hard on getting the team behind us, we negotiated and reasoned with the nurses, pushing them into doing everything they could to get us moved. I guess for us this was the only element of control that we had, even though we weren’t in control, we were proactively doing something for our babies, we were being a mummy and daddy. Who knows whether this paid off, or whether it would’ve happened anyway.
There were several occasions where we thought we had beds, only to find out that they were soon taken up by new emergencies arriving at the hospital. On one occasion we got the beds but couldn’t get the transport and by the time we got transport, we’d lost the beds. It was yet another roller coaster with emotions running high. Amazingly, the hospital took pity on us and offered us the family room for a couple of nights. The room is kept for when people are ready to leave hospital with their babies who have been on SCBU, so they have a night with them before they leave hospital. Luckily for us, no-one needed it at that time. So, we moved into the room with a sofa bed and set up camp, we were now on the same floor as SCBU and could wander in and out to see our babies at any time. We felt like squatters, as we were determined not to move.
At night I used to go and see them at most feed times, I’d take the opportunity to express, it was all I could do for them and it made me feel like I was contributing to them getting better. We were also allowed to take them out of the incubator on our own, with permission of course. On the one occasion I noticed one of the cannula’s had come out, I applied pressure to the hand to stop the bleeding, the worse part was, the nurses trying to get another back in. The cannula’s popped out quite regularly, they were running out of places to try and insert them. After several attempts, a doctor had to be called, the veins were just so tiny that they couldn’t get back in. It was so horrible to see, your baby screaming as they do it, as they try several times to get a needle in. The doctor was successful thank goodness, the key was not to let it come out again, so it made handling them even more delicate.
During that first week, Chris had to go home to sort out the building work that we were having done, I also needed more clothing. One of the things I was desperate for was more compression socks, I had one pair given to me and to put it bluntly, my feet stank even though I showered daily and washed them out in the sink, leaving them to dry on the window ledge…. nice hey!! Now I know the NHS have tight budgets, but a second pair would’ve been very much appreciated! The babies didn’t need too much fetching from home, as they weren’t in clothes most of the time. There was a lot of pressure on him, I think we forget about the dads sometimes. Whilst he needed to go home, I needed him at the hospital. Thankfully his employers were amazing and gave us the time he needed, I know there is currently a campaign about time given to parents of premature babies and rightly so.
On the Monday, a week after they had been born, at around midday we got the news we were waiting for. Our local hospital had beds for us on their transitional care ward. It was explained to me that I would have a room with my babies and that there would be midwives available. I was also advised that because the babies were going from incubators to open cots that we would be provided with heated mattresses until they could hold their own body heat. Brilliant news, I was packed and ready to go within half an hour, I didn’t want to cause any hold-ups, now we just had to wait for transport. Given we had previously lost beds because we couldn’t get transport, we were still nervous about whether it would happen or not, that was another long day with a lot of waiting around.
I hope you enjoyed this article, thank you for taking the time to read it.