Sarah. I was told my son will probably never be exclusively breastfed.

Sarah & Euan

Sarah & Euan

At 26 weeks and 4 days gestation I was told to come into the hospital so my blood pressure could be gotten under control. I’d been on oral meds for two days, but it was going up, not down. I knew it was likely I’d be there a day or two as even though it hadn’t been diagnosed, thanks to Dr Google I knew I had preeclampsia. But Dr Google seemed to indicate that preeclampsia could be managed for weeks or even months, so I was nervous, but didn’t think there was too much to worry about.

At first everything was fine; oral meds, sitting in a recliner thinking calm thoughts, midwives taking my blood pressure every half hour,…it looks like it’s going to be a boring few hours. Then, when we’d been there about an hour I had my third blood pressure check. The midwife got half way through the reading and gasped “Oh, God” under her breath. She stood up and said “DON’T MOVE. CLOSE YOUR EYES” and rushes off. Next minute there’s three or four midwives on me, bundling me into a wheelchair, rushing me around to the delivery rooms. Not a good sign, right? Turns out my blood pressure had topped out at 220/120 and there was no more waiting around for oral meds to work. They were prepared to deliver my baby that afternoon if they couldn’t get my blood pressure down, but luckily I responded to the IV drugs and by the next morning was stable enough to be moved to the antenatal ward.

I spent three days on bed rest, swollen like a water balloon and battling epigastric pain, but it gave us precious days for the steroids to work on Euan’s lungs. I felt so out of control, I’m used to making plans and then executing them well, and not being able to influence this chain of events was very stressful. So I settled on a plan of ‘just stay pregnant’. My not terribly tenable plan lasted until 26+6 weeks, when all my preeclampsia symptoms started to go bananas again. So, 9pm that night we were booked in for a ‘planned at very short notice’ caesarean, and Euan Raymond was delivered just after midnight.

We made it to 27 weeks, by 25 minutes only, but I’m counting it.

I was so out of it after the delivery. I had been on painkillers before the delivery for the epigastric pain and then I was on post op painkillers. I felt so numb. If a psychiatrist had come in the next morning and told me I had had a phantom pregnancy and actually there was no baby, I think I would have believed them. At that stage I hadn’t even processed all the things I wouldn’t get to do around the end of pregnancy and normal delivery, but I think at that stage I had put breast feeding into the ‘things I will miss out on’ basket, along with getting good use out of my maternity clothes, and having strangers give up their seats on the train. But then the next morning an efficient, no nonsense midwife bustled into my room and said “let me know when you’re ready and we’ll start hand expressing”. I didn’t even know you could lactate after 27 weeks. So my breast feeding journey began.

Those first few days are blurry, but a lot of my hand expressing was done by my husband. He has a fascination with technique and efficiency in all things, and he got pretty good at it. My supply came on pretty well, and by day 3 I was on the pump. There was no coordinated education on the ward regarding what I needed to do to best ensure I had an ongoing supply, and I also had no concept of how long I would need to be doing this, so I was piecing bits of information on the fly. I remember about day 4, still in hospital, using a new kind of pump alone in my room and not getting anything much, just a dribble each side after having had pretty good supply. I sobbed so hard, I felt I’d let my little boy down so much by not managing to ‘just stay pregnant’, and now my milk supply was going backwards. Thankfully, when I changed back to the Symphony I had been using I had much better success, which lead to a frantic ring around of pharmacies to find one to hire. Thankfully we found one and I had one waiting for me when we got home.

So I went home, leaving my baby boy in an isolet and I religiously pumped every 3 hours, and 4 hours over night, getting up twice to pump at about 2am and again at 5am. My supply was fine, not massive, but adequate. Through the early weeks in NICU my son was fed expressed breast milk (EBM) through gavage tube, and we were told that should he get necrotising enteriocolitis (the dreaded NEC) his chances of dying from it were halved if he was breast milk fed. He got NEC after about 3 weeks. At least, it was diagnosed by x-ray but he never showed very clear clinical signs. He never needed surgery for it, and while we’ll never know if the breast milk helped in his situation, it certainly didn’t hurt. Until the NEC episode his breathing had been going okay; he had been just on CPAP after being tubed for ventilation for several weeks and it was looking stable, but the infection sent him backwards.

Thankfully, he was never re-intubated, but required ventilation via mask for several more weeks and his oxygen requirement went up. He was still on CPAP as his gestational age climbed through the 30s, and I was getting increasingly worried about the impact this would have on breast feeding. During this time, I was told by a consultant that he would likely never take to the breast well, and that bottle feeding was much more likely to be successful. I was devastated, and determined to do everything to prevent that.

We hit 36 weeks and I insisted on him being able to have breast contact and the doctors agreed to let him suckle on an empty breast. He was still on quite a high CPAP pressure, and the risk was he would have milk blown into his lungs because he wouldn’t be able to coordinate sucking, swallowing and breathing in the face of so much pressure. The first attempt was a wash. He became tachypnic (breathing too fast) and his oxygen saturations dropped. We only tried for about two or three minutes before we had to stop.

We left it a week and tried again, and things went better. By the time he hit his term date he was on high flow for a couple hours a day for breast feeding, and was allowed a breast with milk in it. We added a nipple shield and he started to do better again. Slowly, slowly we crept toward breastfeeding. It took him some weeks to transition off CPAP onto high flow full time, but he got there finally, about a month past his term date. We were doing pretty well at this stage, about 2 to 3 breast feeds a day. His reflux and wind issues sometimes interfered and he would be too uncomfortable to suck properly, and then we would need to resort to the gastric tube. His increased work of breathing with the chronic lung disease meant we needed to get the calories in come hell or high water, so there was no room for just waiting for him to be hungry enough to suck. Overall though, we were doing okay.

Then came the switch to low flow and the move from NICU to Special Care. He wasn’t a fan. We had been in a lovely, big, quiet area in the NICU and he’d been there for 10 weeks (after 10 weeks in another NICU bay – 20 weeks in NICU in total), and the bay we were moved to in Special Care was cramped and noisy and busy. He stopped sleeping and he stopped eating. I thought, well you were doing it fine in bay 9, we’ll just wait until your hungry enough to suck. But he was too overstimulated and hypervigilant and he just didn’t suck. His weight stalled, and he was not having enough wet nappies, so we went back to tubing almost all his feeds. He also developed a bad pressure sore under his nasal oxygen canula, meaning he was in pain every time he sucked anything and the canula rubbed the sore.

That was last week. We are now in another bay in Special Care, quieter, with fewer acute babies. Yesterday, he sucked at the breast for about 15 minutes. Unfortunately I couldn’t give him my other breast as I have a nipple issue. A small nick that progressively eroded due to the constant pumping, until I had a large sore which earned the dubious honour of owning ‘the worst nipple [the lactation consultant] had ever seen’. The nipple is under control now – I pinched some of Euan’s bactoban for his nose issue, and started using hydrogel pads – but not quite better enough for him to feed from. For the record, hydrogel pads are the bomb.

As I write this, Euan is having surgery to have his hernias repaired. The surgery itself is routine, but his oxygen requirement makes the anaesthesia tricky. There is every chance his breathing could go backwards again in the coming days. If it doesn’t we’re looking like home in the next fortnight. We’re currently at day 154, so it can’t come soon enough. At the moment it looks like we will be taking the nasogastric tube with us. Sucking feeds is still a bit of a challenge for him, either by breast of bottle, and we still need to keep up his calories because of his breathing issues. The up side is I still have a good supply after 154 days of expressing. I have never missed a night time expression, although now I just do one between 1am and 3am, and then get up at 7am and pump again. I’m still hopeful of transitioning to breast feeding but it turns out that the consultant was probably right. He will probably never be 100% breast fed, but at least he’s still 100% breast milk fed.

Sarah.

PM update: Surgery went well, his oxygen is stable same as before surgery. He didn’t feed well today, but he’s allowed to have an  off day after surgery. The journey continues.

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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3 thoughts on “Sarah. I was told my son will probably never be exclusively breastfed.

  1. Just wanted to say congratulations for persevering, and don’t give up on the transition to feeding – if he’s feeding now then that’s a really good thing and should help. Also best wishes for a quick recovery from surgery and for you to be home soon.

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