I’m not sure where to begin with my birth story/post natal journey, it’s taken 12 weeks to feel ready to write something down and until he’s 24 weeks to finish. I won’t go in to all the details of Oscar’s condition as I don’t think the specifics are relevant in terms of this story, but settle in with a large cup of coffee (or wine) as this is a long one!
There is more focus on the early postnatal period than the birth itself so if you’re reading this for birth tips it might not be helpful. I would also like to say that every experience is different and even with all the preparation and planning in the world, as I have now learnt, you can’t control everything….
We were booked in for a planned c-section to birth our little boy for a few reasons, including an issue with my cervix that put me at a higher risk of not adequately dilating. I found the decision of a c-section harder than I’d expected, but my gut feeling was that it was the right choice for us. The process of being ‘signed off’ for a planned c-section was not straight forward, despite the recent maternity scandal and private medical advice regarding my cervix I found it very difficult to make my voice heard. Knowing now that our little boy might not have made it had we been full term etc I will always, even more so, go with my intuition. I had tried not to think too much about the surgery itself as the date approached but in hindsight it would have been a good idea to understand more about what to expect in theatre! Knowledge is power!
We had a lovely team in theatre who tried to reassure me throughout but I found it difficult to relax (this won’t surprise anyone that knows me!). The epidural took a long time to be in the correct position and when it kicked in gave me the shakes particularly in my jaw and arms. The bed was also tilted to aid the epidural and when you can’t move half your body and you can feel lots of pushing/pressure/movement the other side of the screen it’s a bit disconcerting! From the start of surgery to Oscar being born was pretty quick and we were asked if we wanted the screen dropped to watch him be delivered. What would usually happen at this point is your baby is born and everyone is super excited, you might have skin to skin straight away or have the baby checked over first then settled on to your chest for hugs. For us, as Oscar was brought out of my tummy it became clear straight away that something wasn’t right. He made his first cries in the outside world but the atmosphere in theatre had instantly changed. The paediatric team were contacted to come to theatre and assess Oscar and although we had some time with him on me and my husband in theatre it was all incredibly scary.
Once I was ready to head to the recovery ward my husband and Oscar were whisked off for lots of scans and blood tests, it was a Friday afternoon so it all needed to be done before people went home for the weekend. This left me alone for a couple of hours in recovery, unable to move from the waist down. There was no ‘golden hour’ of skin to skin or the chance to try the breast crawl we had been keen on giving a go, especially with the c-section birth. There was no tea and toast. Just me in a bed hooked up to the monitors with the curtain round, very much alone. Outside the curtain I could hear the chaos of chronic understaffing, midwife’s being pulled in all directions as babies and emergencies kept on coming. When my husband and baby finally returned we managed to source some tea and toast as I hadn’t eaten since midnight the night before and it was now past 6pm. Oscar was so so tiny, only 5 pounds, but we put him on my chest for some bonding time. There was no one available to help with latching so we just waited, behind the curtain trying to take in what had happened in the last few hours.
We were moved to a room on the labour ward and left until around 1am when someone came in and asked if Oscar had fed. He hadn’t, he was tiny and we had no idea what we were doing. I had been keen to try and breastfeed, I’d even had a 2 hour 1:1 antenatal session with a breastfeeding counsellor to learn more (!) but because of his low birth weight we were given a formula bottle and left to it. From then we were on a strict feeding schedule set by his medical team to make sure he didn’t lose any weight and in 12 weeks he never has, I will always be proud that we managed that. I tried on day 1 to hand express colostrum for him but could barely get anything out. Id also tried in pregnancy unsuccessfully. My husband brought in the Elvie breast pump as that’s all I had purchased thinking I wouldn’t need it until later on. It’s not ideal to use so early but through gritted teeth (I now know I had the wrong sized flange…) I managed to start expressing the ‘liquid gold’. Due to his tumour he developed jaundice very quickly and was put on phototherapy day 1. He was distressed as the mask was too big for him and we had to keep rearranging it so there wasn’t much sleep for anyone! That night a lovely midwife was on shift and found me in our room at breaking point after only a couple of hours sleep in 2 days. She helped me try and latch Oscar so I could start feeding. This was the first time someone helped me with feeding him.
During day 0-1 the hospital were in touch with Great Ormond Street Hospital (GOSH) to arrange a transfer. We weren’t sure how long it would take for a bed to become available, it felt like weeks but we moved when he was 3 days old. I just remember being at the nurses station trying to find out what was happening and being so upset as I saw other families going home with their newborn babies and we didn’t know when or if we ever would at that stage. The day 2 hormone rush did not help this either and the tears were uncontrollable!
Before we transferred I had my first shower to help with taking the dressing off and to try and feel a bit more human. I was up and mobile as soon as the epidural had worn off as I didn’t really have much choice. I would strongly recommend taking it easy for the first 1-2 weeks post c-section as I have thickened scar tissue and adhesions from repeatedly hauling myself out of the bed. My tummy was feeling very sensitive and so I started light touch/strokes to help with the sensation recovery and this really helped over time to stop it feeling quite so weird! I took the pain relief regularly so I could keep mobile and spread them out rather taking them all in one go which stopped any breakthrough pain. I also became addicted to toast, butter and tea!
When we arrived at GOSH it was evening and we had the most wonderful nurse welcome us to our new temporary home. I was a mess emotionally and very engorged as I hadn’t managed to get the latch properly. She suggested a bath to help the let down and I was so relieved there might be something to help. Unfortunately there weren’t any hospital grade pumps available for me when we arrived as they usually have one on every ward which is amazing in itself. I stepped in to the bath and then remembered, I’d had a c-section, I wasn’t allowed a bath….
I hope you never find yourself at GOSH with your baby/child but if you do, please be reassured that it is truly an incredible place filled with medical experts and an incredible team of staff and volunteers. Our first day at GOSH was filled with meeting our consultant, getting a diagnosis and being booked in for further tests. I can’t begin to explain the emotions when you meet a doctor who’s seen your baby’s very rare condition regularly and has a plan of action! Blood tests were smoother as they were used to such tiny babies and our room had natural light spilling in every morning. This was heaven! They also requested the most incredible nurse visit me to help with feeding. I will NEVER EVER forget her kindness. I was engorged, sore and overwhelmed with what was happening. I’d been forgetting to take my pain relief or iron tablets or anti clotting injections. She sourced a breast pump for me to purchase and helped me express, held my hand as I cried and made me feel like I might actually be able to be a good mum to our poorly little boy. From this point on I was able to express and breastfeed little bits so we could reduce the amount of formula Oscar needed. I had alarms set on my phone for every 2 hours and I expressed religiously to give him what I could. Thankfully, against the odds I had a good milk supply. We had to write on the white board in our room when and how much he fed, when he did a poo and they would also weigh his nappies. My incredible husband took charge of the board admin and we began to find a routine focused on feed, poo and sleep alongside the beeping from the monitors. I really believe it was all this background noise when he was so little as to why he will sleep through most noise now!
The short story (!) is that we were able to go home after 2 weeks as his bloods started to improve and had weekly outpatient appointments for blood tests and weight checks. Oscar had a central line fitted to make it easier to take his blood but also incase he needed chemotherapy. Before we were discharged we had training on keeping the central line clean and what to do if it somehow broke and he started bleeding out, terrifying, but somehow at the time we took it in our stride and diligently followed all instructions. This did make bathing tricky as we had to keep his arm out of the water and dressing was a delicate procedure but we got through it, line and sanity somehow still intact.
Once we were home I was trying to breastfeed more than expressing but Oscar had a small tongue tie and because of his condition we were advised against having it fixed. I used nipple shields to help feed him as it made the latch easier but still had mastitis twice. My god is that painful! I lost count of the minutes I spent either under a very hot shower or wishing I was, just trying to soothe the pain. Not long after the second bout I went back to exclusively expressing as breastfeeding just wasn’t working for us. I’d had help from the nurse at GOSH, a breastfeeding counsellor at home and a lactation consultant but there comes a point when enough is enough. My baby was fed and thriving and that was the most important thing!
In terms of my physical recovery, well that’s still ongoing! It’s been a much slower process to see changes in weight and shape than I was expecting. I was able to get back to body weight exercise and light cycling at 4/5 weeks post birth and progressed from there. I weight trained until 38 weeks pregnant and was keen to gradually get back to training as soon as my body was ready. It was also really important for my mental health to have some space to move and think about something else. I started postnatal core and pelvic floor exercises at around 4 weeks and scar massage from 5 weeks. My scar is still quite adhered and treatment is ongoing but Ive found the Lymphatouch device really helpful at reducing the adhesions and fluid shelf above and below my scar.
I’m finishing my birth story as Oscar turns 6 months old, I’ve been back at work for 11 weeks and the struggle to juggle it all is a challenge. He is still under GOSH but our appointments are now every 6 weeks and he’s finally caught up with his friends in size. I stopped expressing when he was 4 months old as my supply reduced and his feed volumes were more than I could physically pump. I knew when it was taking 45 mins per boob that we were likely reaching the end! We had a morning feed of breast milk one day and I had a feeling it was the last so I tried to enjoy the moment. I’m still very much adjusting to motherhood, the daily ups and downs, the obsession with sleep (!) and trying to get my head around the weaning process. It’s been a harder journey than I ever expected but also the most incredibly rewarding. Every smile and giggle makes it all (even mastitis) worth it!
For anyone else that’s new to motherhood and felt a bit (or very) lonely, like google is your best friend, constantly questioning whether you’re doing it right, loving your body for what it created but struggling to love its new fit, miss your partner, miss sleep, spend hours just staring at their tiny little face and couldn’t imagine life without them, wish for 30 minutes alone but miss them after 10 minutes, I’m with you!