Leigh. The neonatal experience can feel so disempowering, but expressing was one thing I could control

The three of us

The three of us

The following story is reblogged with the kind permission of Leigh Kendall. In her blog Headspace-Perspective. Leigh talks candidly about the loss of her son Hugo, HELLP syndrome, premature birth and many other issues. She also blogs for the Huffington Post.

Hugo was born at 24 weeks because I had HELLP syndrome and pre-eclampsia. In the days between the diagnosis and the delivery, I had worried that due to the extreme prematurity I would be unable to provide breast milk for my son. I thought milk only came in during late pregnancy – I had been advised to get fitted for a nursing bra at around 36 weeks, when my bosom had expanded to its maximum size.

A midwife reassured me that the removal of the placenta gives the mum’s body the message to start producing the breast milk. Premature delivery just isn’t something that many expectant mums think about.

I knew how important breast milk is to babies in terms of protecting them from infections, and the benefits it offered mums, too (including helping shift that baby weight!). The skin-to-skin bonding with my baby was something I was particularly looking forward to. Amongst the range of emotions I experienced, I was so disappointed that even if my son was born alive, I would not be able to experience  skin-to-skin bonding when he was born.

Breast milk is possibly even more important for premature babies than it is for healthy, term newborns because their systems are not yet fully-developed. Infection in any neonatal unit is a daily risk and constant threat for premature and sick babies. Breast milk helps offer the baby some of the mother’s protection.

Many premature babies are unable to breastfeed – perhaps because they don’t tolerate handling, or they are ventilated. Hugo was ventilated, and because he hated being handled he was a month old before he was ready for a cuddle.

I was pleased to find out that expressing my breast milk was something I would be able to do for my baby.

Hugo received my breast milk via a naso-gastric tube – through his nose, down in to his little tummy. He also received total parenteral nutrition (TPN) through a long line to help make sure he was also receiving everything he needed to grow and thrive.

Colostrum, which is the first milk your breasts produce, contains many of the vital antibodies your baby needs to develop their immune system. A midwife visited me while I was recovering in intensive care on the day Hugo was born to help me hand-express my colostrum.

Her assistance was so valuable – not only was I recovering from a general anaesthetic and dosed up on morphine, my hands had swollen due to the pre-eclampsia – and there’s a definite knack to hand-expressing.

It took a while for the first drops to appear, but I felt so proud when they dripped in to the little test tube and the liquid gold could be taken to my little man.

My milk was produced by hand-expressing for the first few days. I was unable to do it myself – the hand swelling meant I had little grip, so midwives and my partner Martin did it for me.

Lying back, boobs exposed, with a stranger manipulating my nipples is an unusual experience – but it’s not a time to be worrying about pride, modesty or being bashful.

When I had been able to produce more than a few millilitres at a time, I progressed to the expressing machine.

I was fortunate that the neonatal Hugo was in (St George’s Hospital, London) has a comfortable, well-equipped expressing room.

My day had a strict routine revolving around spending time with Hugo in the unit, expressing milk, mealtimes and trying to rest.

Expressing sometimes felt like a hassle because it meant precious time away from Hugo. The unit gave each mother an expressing set to use while on the unit – the whole set, including the plastic box it is stored in needed to be thoroughly washed and dried after each use. I was meticulous in this process because I was so paranoid about infection, meaning the cleaning could often take nearly as long as the expressing.

After a while, though, I came to see it as a form of therapy – concentrating on the washing and drying meant I could forget my stresses for a few minutes. The neonatal experience can often feel so disempowering, it felt good to have one thing I could assert full control over.

Spending time in the expressing room also offered a bit of reflection and relaxation time, away from the pressures – and incessant beeps and alarms of the nursery. In addition, I chatted to other mums and built up friendships.

Hugo loved my breast milk, and I was so glad that he tolerated it. In fact, he would ding his alarms if his milk was late. Before each feed, an aspirate test would need to be done. This is where a little bit of milk is sucked up from the baby’s tummy through the tube and put on a pH strip, to check the tube is in the right place. Hugo would normally guzzle up every drop of his milk, making it difficult to get any aspirate to check. He would make us chuckle because he would do an appreciative wiggle when the milk reached his tummy.

Thanks to my illness and delivering at such an early gestation, I was never able to produce more than 30 millilitres of breast milk at a time. It sometimes felt disheartening because it seemed like such a pathetic amount in the bottom of the bottle. It felt particularly disheartened in the unit’s expressing room when I could see other mummies producing what seemed to be gallons – it was difficult to not compare.

Hugo’s nurses were very encouraging, telling me that I was lucky to be producing any milk at all, considering how ill I had been. Plus, Hugo was so small (he weighed 420 grams at birth) even the small amount of breast milk I produced was more than enough for his needs.

I learned that proper technique is really important for expressing breast milk. I knew to massage my breast before expressing, but didn’t know to continue to do that while expressing. The unit’s lovely breastfeeding coordinator also told me that I was holding the cup too tightly, which constricted the flow – oops. These tips did help me produce a little bit more milk. Expressing mothers should always ask for help – don’t be embarrassed.

The nurses also encouraged me to express at night, because the hormone is most active during those hours. I did night expressing for about a week, but in the end the overwhelming need for sleep won. While being very aware I wouldn’t have had a choice with a ‘normal’ term newborn crying for a feed at any hour, I was so utterly exhausted because of recovering from the illness, and from the stress of the neonatal unit.

Not doing night expressing made me feel guilty because I felt I wasn’t doing everything possible for Hugo. However, it is important for neonatal mummies to try and achieve some balance somewhere.

Hugo managed to avoid the infections that commonly afflict many premature babies – the protection my breast milk offered was hopefully a contributing factor. Hugo received ‘just in case’ antibiotics a couple of times because of a threatened infection. Any treatment for premature babies is a fine balancing act – antibiotics affected Hugo’s kidneys and the TPN began to impact on his liver.

My son tolerated my breast milk so well, the amount he received each feed gradually increased to the point where he came off the TPN and received 100% of his nutrition from it.  It was a very proud moment.

I began to feel the pressure of being able to keep up with my growing boy’s demand. I also looked forward to eventually being able to try to breastfeed Hugo, just like I had planned all along.

Sadly, it wasn’t to be. Hugo died just a couple of days later, at the age of 35 days because of his extreme prematurity and chronic lung disease.

I donated my left-over breast milk to the unit for the benefit of other babies whose mummies are unable to express. There are many reasons why mothers are unable to express their breast milk, and none should be made to feel guilty about that – the neonatal experience is difficult enough as it is.

Even donated breast milk from another mother can be better for babies than formula, and I hope other babies enjoyed the milk as much as Hugo did.

Leigh.

Milky Mums is a community organisation established to provide support to Mums who are breastfeeding or expressing for premature and seriously ill babies in Australian neonatal intensive care units (NICUs).  Learn more about our work at www.milkymums.org.au

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