Let me introduce Frankie, a clinical psychologist from Leicestershire. On Instagram, Frankie is known as @nugget_frog_andthe_tinysprog. Her mission? To share the reality of having a baby, and importantly, the experience of having a premature baby. With honesty and humour, she articulates perfectly the experience of being a preemie parent, something which isn't spoken about as much as it should be.
So here's Frankie's story....
Hello! I had Arlo, in October 2019, he was born at 31+1 weeks, he's currently about to turn 8 months actual (6 corrected) and is an incredible little human. I didn't have the easiest of pregnancies, including losing a twin at 10 weeks and debilitating pelvic girdle pain which meant that I was signed off sick from work at the end of my second trimester until I had given birth, I thought that would mean months at home waiting for the baby to arrive, but I was wrong. I contracted severe pre-eclampsia in my third trimester. To start with, it was high blood pressure, I had to spend 5 days in hospital whilst they found the right type and dosage of medication to reduce it, I mostly felt fine, I just had a big headache. I went home and continued thinking that I had weeks left until I met my baby, but at 30 weeks and 4 days, my blood pressure was high again and this time I had protein in my urine. I remember being in hospital and the Doctor telling me that I would probably need to stay in hospital until Arlo was born and thinking, I can't stay in hospital for another 9 weeks, I didn't realise the seriousness of pre-eclampsia or what it could mean for me or my baby.
The day before I gave birth, they showed me around the NICU, but still, I don't think it quite clicked what that would mean or how long I would be there for. Everything else is a bit of a haze, but I know that the protein levels in my urine were high, the pressure in my head felt unbearable, I couldn't walk as I felt like I was going to fall over, I couldn't see straight and I started to get a pain in my stomach, the doctor said that she thought that meant that my liver wasn't working properly and that I was at high risk of fitting or stroke, so said that the baby had to come that day. They started me on magnesium sulphate and prepped me for an emergency section. They had given me steroid injections when I was first admitted to develop the babies lungs, but told me that there was a high risk that he would need to be on oxygen for some time. So, I was in on the Saturday and gave birth on the Tuesday, the entire process of having pre-eclampsia was 3 weeks.
When I had the section, I was very still, blank and numb. The anaesthetist was great, he introduced me to the room full of people and let me know what was happening as it happened. My husband stayed by my side and also narrated what was going on, which was good as I had something to focus on. I don't remember there being any pain or distress, just numbness. I saw Arlo fleetingly as they took him out of me, he let out a little cry, which was amazing, as it meant that his lungs weren't as bad as they thought. He still needed some oxygen and it was very quiet as about 6 of the staff attended to him at the side of me. All I saw was that he was tiny, I couldn't really see much else. He was 3 lb 1.
I went to recovery with my Mum and my husband followed Arlo into the NICU, he was on oxygen and they put an NG tube down his throat. As soon as I got back onto the ward, Ryan sent me some pictures, so that's how I met my baby. I wasn't allowed to see Arlo for the next 12 hours, they told me I needed to be strong enough to get into a wheelchair, so I made it my mission to get my body into that wheelchair. When I got wheeled through, I was in a lot of pain, I poked my hand through the incubator doors and he peaked at me with one eye. I couldn't see properly, because of being in the wheelchair.
The next day, I was able to hold him. I propped him up on loads of pillows and held my baby. It was not how I imagined it, I imagined giving birth, having the baby being placed on my chest, starting to breastfeed. But instead, I was looking at photos of a baby I hadn't really met and was hand expressing into a syringe to try and collect any colostrum for him that I could. It took about 5 days for my milk to come in properly, I was expressing every 3 hours and to start with it was really demoralising getting small amounts, but it soon came and I was providing lots for Arlo, more than he needed as he was on a few mls every three hours, within his first week, he was producing green bile in his stomach, the doctors thought this could be a sign of NEC so they made him nil by mouth for 36 hours and started TPN through a long line, I found that so hard, it's such a primal instinct to want your baby to have food he dropped to 2 lb 9, thankfully it worked and after that he was able to increase the amount he was getting through his NG tube slowly.
I had to stay for about a week after having Arlo as my blood pressure was still high, I was on a labour ward with Mothers with their babies, or heavily pregnant women. I cried to the nurses and told them that I found it really hard, they managed to find me a side room, but seeing all of the other women on the ward, holding their babies, going home, I struggled. I spent most of my day downstairs next to Arlo, but then would return to my ward for monitoring and medication.
We had a mixed experience with the nursing staff on NICU, there were some nurses who were incredibly family focussed, they prioritised kangaroo care and me holding Arlo whenever I wanted to, putting him to the breast whenever I felt like he was hungry and helping us to learn how to do his cares. There were some nurses who told us that he needed to be left alone and not to touch him too much, who would make you feel like it was an added chore to get him out of the incubator and almost as if he wasn't mine, he was theirs. I think that's one of the hardest things I found, as it took me a while after coming home to rely on my own instincts and not feel the need to ask someone else all the time about how I was looking after Arlo.
The night when I got discharged myself and I had to return home without Arlo was probably the most difficult thing, I always imagined leaving the hospital after giving birth with your baby, it felt so unnatural to leave him there. I hated the idea of him crying and not being attended to if the nurses were busy, I hated the idea of him not being cuddled if I wasn't there. I spent most of my time at home anxious or crying and longing to get back in, but we hadn't done anything to prepare for Arlo coming home, I didn't have a car seat, pram, cot, clothes. I was going to do all of that in my third trimester, so I had to spend some time getting those bits and nesting, as that urge was still there. I balanced between the two, but I found that hard.
As Arlo got a little stronger, he would sometimes wake up as we were about to leave to go home and I never felt like I could leave if he was awake. I also found it hard when the nursing staff said that he seemed hungry, it was normally when I wasn't there. As I was trying to breastfeed, I felt like there were lots of missed opportunities to try and feed him myself, I also didn't feel like I knew what I was doing when it came to breastfeeding and it felt odd putting him to my breast, he would just mouth around and it didn't feel natural, it wasn't until I was able to stay over night and have a bedroom on the ward, where I was able to relax on my own with him where it felt more natural. We had to feed him through an NG tube for about 8 weeks, it was nerve wracking, especially needing to get an aspirate and making sure he didn't pull the tube out. Our hospital allowed us to go home with the NG tube as long as I could do two full breastfeeds within 24 hours, so I made it my mission to do so. I stayed over night for about a week trying to establish breastfeeding, my husband had gone back to work, his paternity leave had finished and we hadn't even got Arlo home yet. The hurdles mostly were feeding, but he also found it hard to maintain his temperature and that's what kept him in for the last week. He was in NICU for 5 weeks, he was home at 35 weeks old, 5 weeks before his due date. He had his NG tube removed about two weeks after we got him home.
I am grateful for the nurses who made me feel like a Mum, who gave me opportunities to bathe him, to feed him, to look after him and develop a strong bond with him. I loved that first time we got him into clothes, I had this tiny little outfit and he looked like such a proper baby in them. I met a Mum whilst I was there and we've since developed a really good friendship, she is the only other person I know who I can meet up with and discuss what it was like for us in the NICU. I mostly kept to myself, I didn't speak to many people, but I am glad that I managed to make one friend there and would encourage others to do the same if you can. I have also found great comfort in the Instagram community that I have developed, there are some wonderful Mums that I have connected with who really know what it is like to have a premature baby, I have found it really therapeutic telling my story and being able to help others in a similar position to me.
In terms of getting through the experience, I logged everything that was happening every day, I wrote, I kept in contact with friends and family, I took loads of photos and I ate a lot of biscuits! I think that all helped! You have to be kind to yourself whilst you are there, you yourself are physically healing, you have been through a massive trauma and it is OK to feel however you feel at any given time, your feelings are valid. There are big feelings around guilt, loss, grief, worry, that don't go away as soon as you're out of the NICU, they are things that I know that myself and so many other premmie mums are still dealing with to this day. Being a Mum to a premature baby is one of the hardest and most rewarding things I have ever done and if you are going through it, know that you are not alone in how you're feeling and there are others out there who know it too.
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