I took breastfeeding for granted with Ezzie. Despite the few days of discomfort at the start and occasionally feeling resentful that it was all on me for night feeds, it was an experience I look back on fondly. I weaned him off when I became pregnant with Etta just because I thought sharing my body with one baby was enough. He happily replaced his morning feed with a banana!
I was really looking forward to breastfeeding Etta and feeling a lot more chilled about it second time round. At the start, breastfeeding is full of anxieties: are they feeding often enough or too often? How can I tell how much they are eating? Are they feeding for long enough? Is that the right latch? If I give them a bottle will they sleep longer at night? Have I eaten something that has upset their tummy? The list goes on! And having come through the other side with happy memories, I was eager to just go with the flow knowing that each baby’s needs are completely different!
But of course that wasn’t meant to be! When Etta was first born, she was nil by mouth. She was put on a drip and given something called TPN (total parenteral nutrition) so was receiving nothing orally. Because Etta’s heart condition reduced blood flow to the lower half of her body, the concern was that her gut would not have enough blood pumping through it to digest food. There was a risk of her developing something called NEC (necrotising enterocolitis) where the bowel becomes inflamed and can be very nasty for sick or premature babies.
I remember finding out while pregnant that I wouldn’t be able to breastfeed Etta before her surgery. I asked the cardiac nurse ‘Won’t she be hungry?’ knowing that a hangry baby is not a good thing and hoping there was some remedy for this. But the answer was that yes she would be- she would be given a dummy to soothe her but she would still be wanting milk. I think this is quite a hard thing to hear as a mum because it’s natural instinct to want to feed your baby (especially if they are crying out in hunger). Sometimes, if she was particularly unsettled (having a heel prick test which she had every few hours, an echo scan or one of many other tests) we would dip her dummy in sugar syrup or some of my breast milk just as a distraction.
You hope that you will feel a bit more knowledgable the second time round. However, the two best moves I had learnt to stop Ezra crying (whack a boob in his mouth or walk and bounce around) I couldn’t do with Etta and sometimes it made me feel like a bit of a failure. Holding her when she was unsettled was hard because I didn’t really know what I could do to stop her from crying. Sometimes rocking and white noise would help- I think she got hooked on the baby crack (sugar syrup) quite quickly too. Often she was just angry to be close to me but not feeding. Not being able to soothe or nourish my baby through breastfeeding was tough- I imagine a bottle would have done the job too!
And then there was pumping…Etta was quickly allowed non-nutritive feeds (a little bit of breast milk for comfort rather than nutrition) and then the idea was to slowly build her up to more normal sized feeds and see how her body coped. I’d tried to express milk with Ezzie so I could share the night feeds but to no avail! And I’d tried to express colostrum in my final few weeks of pregnancy with Etta but also no dice! So I was a bit anxious about being able to pump enough to keep up supply. My hope was that in the future Etta would be able to breastfeed, even if she did also need formula to help her put on weight or need to be fed through an ng tube (tube through her nose into her stomach) for a while- both of which are common for cardiac babies.
My lovely midwife helped me express a bit of colostrum a few hours after Etta’s birth and then every few hours after that I buzzed for a Maternity Care Assistant to come and milk me! But try as I might, I just couldn’t do it myself. I asked to be discharged the same day Etta was born which was much better to get some rest, but it did leave me very stressed about how I was going to continue to express. After recruiting a few family members to express me (thanks Sam and Kim) and texting my midwife friend (thanks Becca) I realised I was probably doing OK and I would get there eventually.
It was the kind mothers in the NICU who really helped me out with pumping- showing where to find the equipment and pointing out when I was using it wrong. They told me I’d be fine once my milk came in and they were right. Some of them had been visiting that little pumping room for months having babies at 24 weeks and waiting to go home- I felt like a bit of a fraud knowing I would only be in NICU for a few days. But it opened up my eyes to the dedication it takes to feed these little poorly babies.
I saw a statistic this week (as it’s World Breastfeeding Week) which said that breastfeeding for a year is usually about 1800 hours, and a 40 hour full-time job is 1960 hours. Breastfeeding is basically a full time job- so expressing your milk and then actually feeding it to your baby (through bottle, tube or syringe) must be like working 2 full-time jobs!! I certainly found pumping around the clock more time-consuming and disruptive than breastfeeding. When breastfeeding, I could basically do it anywhere discreetly, but I didn’t feel that it was acceptable to sit in the middle of a cafe and attach a transparent funnel to my boob and pump- with my areola on full display for all and sundry 🤦🏼♀️. There’s nothing discreet about pumping and especially not if you’ve got a hospital grade pump (think big old machine) attached to you! I suppose it should be acceptable (it would have made my life much easier) but it isn’t yet.
I spent a lot of my time with Ezzie pumping, which meant I couldn’t really play with him the way I wanted to and there wasn’t a pumping room in PICU which meant I just had to hide behind Etta’s bed space. On days where there was a lot going on around the bed space, there was nowhere to pump unless I wanted to get in the way so I would sometimes just go to our accommodation in order to pump- definitely not as easy as breastfeeding. Too much to think about and it came around too often! I would feel like I’d just finished labelling, sterilising and storing the milk before it was nearly time to start again. Cluster feeding can be relentless but for me this was harder- still relentless but without any of the lovely oxytocin of holding my baby.
There’s one memory that really sticks with me. It was the day before Etta’s cardiac arrest and the first day in a while we had been able to hold her properly because she’d had her breathing tube taken out. I had lots of cuddles with her that morning. She had been hangry so I had to do as vigorous rocking as possible while sitting down and without moving too many of her wires. As it was, she would set off the machines every minute or so with her wires in the wrong positions! A few hours later, I was setting up my pump behind her bed and she was crying again. The nurse asked if I would like to hold her again as Etta seemed to settle before but I said “I’m just setting up as I need to pump” so the nurse helped to soothe her. I didn’t get to hold her again until the day she died. I still feel sad that I didn’t take the opportunity to hold her that last time. And I’m not sure if I was using pumping as an excuse so as not to seem completely useless when it came to my own baby.
I think although pumping was time-consuming, it felt like the only tangible thing I could do for Etta. I resented having to schedule it in all the time but also I was proud that the freezer in PICU was bulging with bottles of milk with lots of the staff commenting on my great supply. And I was happy that she tolerated small feeds for a while before and after her first surgery. At least expressing wasn’t all in vain!
A week before she died, when we were told for the first time she was unlikely to make it through the night, I stopped pumping. I just felt it was soul-destroying to be expressing milk for a baby that would never need it and that it might take me away from precious moments at her bedside. Then in the morning, when she was doing better again I felt so wracked with guilt because it felt like I had given up on her. I vowed to myself that I wouldn’t stop expressing until she died and that I would have hope of her recovery until the final moment.
Christmas Day morning was spent in the bath sobbing while hand expressing my engorged breasts to try and remove the blocked milk ducts. I couldn’t even hug Ezzie the day after Etta died because I was in too much pain. But I was just desperate to stop making any milk for my baby that was no longer here. I have huge respect for those mothers who continue to express milk after their babies have died and donate it to those in need- It is a beautiful legacy for those babies who died. I certainly couldn’t face continuing to pump milk and have all the blood and medical tests required to donate it. I just said I was happy for them to bin the lot- they are still finding more bottles months later.
So for World Breastfeeding Week, two very different breastfeeding journeys. But I think what I learnt from both was that even when breastfeeding appears to come ‘easily’, it takes a lot of dedication. There is a reason why breastfeeding rates are so low in the UK- it is hard work, support can be very hit and miss and also there is a lot of anxiety, guilt and self-doubt when it comes to feeding your baby. I am very much of the opinion that fed is best- however you end up doing it. What my days in NICU really highlighted for me is that we as parents (and especially mothers) do whatever it takes to make sure our babies are fed and happy. This week I think it’s important to remember that just trying our best is enough.