Breastfeeding A Preemie

I was still breastfeeding my 2.5yo. I had plenty of colostrum and started hand expressing around 28w. I went into spontaneous labour 5 weeks early. Luckily for my toddler it was in the middle of the night and my parents came to stay with him and my teens.
Lagertha was born with severe respiratory distress and was taken to the NICU at a larger children’s hospital nearby. I didn’t get to cuddle her at all, and my wishes for delayed cord clamping were thrown out the window when she couldn’t breathe
We couldn’t go in the ambulance with her while she was being transported as they needed extra doctors and nurses in the back with her to monitor her condition. We were explained it was possible that she would stop breathing on the way and if that happened they had the equipment to deal with it, it would just mean they would pull over until she was stable again, so not to worry if it took them a while to get there.
I hand expressed some more colostrum in the car on the way there.
Once we got there it became clear to me how badly she was doing. She was on CPAP with 50% oxygen and anytime she was handled her oxygen saturation would drop dangerously low. So for the rest of her first day we were only allowed to hold her hand. She had an IV drip with saline and antibiotics.

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The NICU is a really difficult place to be for someone who feeds on demand, bedshares and doesn’t follow a schedule/routine.

The strict 3 hourly ‘cares’ was so foreign to me. I wasn’t allowed to change her dirty nappy and had to leave her in it until the 3 hours were up. Babies were either left to cry, or given dummies until their 3 hours came around. I almost felt relieved that bub did nothing but sleep, at least she wasn’t upset.

The next day she was taken in to have curosurf (which stimulates the lungs to produce surfactant). While that was happening I had arranged for a pump with the nurses on the ward and was stressing as my boobs seemed to have forgotten they were producing copious amounts of colostrum only days earlier. I tried expressing next to her crib, no change. Then that night bub started to stabilise and a lovely pregnant nurse told me she was going to find me a folding chair. She came back with a folding reclining camp chair and told me to strip my shirt off, and put my baby on my chest. I sat there for almost 3 hours struggling to stay awake after having no sleep since 2 days ago.
After that skin on skin my boobs realised that bub was alive and we had a tiny preemie baby to feed. I was pumping every 1.5 – 2 hours. Once bubs oxygen levels were reduced a bit more I was approached by a nurse to talk about starting feeding. Bub was still on the drip so any milk was just a bonus. But the big stipulation was that they would not start feeding her unless I either could guarantee I would have enough milk (as they couldn’t stop feeding milk once they start) or I agreed to use formula. I think I shocked the nurse when I flat out refused formula. I knew I had a freezer full of colostrum at home and I knew my milk would start coming in soon, but it stressed me out just the same.
So I kept pumping a minimum of 2 hourly. I was starting to around 50 ml every 2 hours. I was still worried though, and I asked hubby to bring up my frozen stash just in case as a backup. I took it up to the NICU and was dealt a massive blow. I had managed to get the nurse from hell that day and she refused to accept my colostrum, claiming because it wasn’t in the NICU capped syringes it was contaminated. I knew at the time it didn’t sound right so I went back down to the ward and the nurse there put it in their freezer and told me as long as I was confident the colostrum was fine, to just defrost it and take it up and pretend it was fresh. It was such a different environment between the NICU and the ward. We didn’t end up needing it at all, but it relaxed me a little knowing it was there.
At this point I posted in a few different gentle parenting groups and kept being told I should demand breastfeeds for my baby and that “my baby was feeding straight from the breast in NICU” and these type of comments really upset me. My baby hadn’t even woken up yet, it had been 3 days and despite spending every moment I wasn’t eating/sleeping or pumping next to her crib I hadn’t seen her even open her eyes once! How was she supposed to breastfeed? I was torn, thinking I wasn’t a good enough advocate for her (as the only thing I’d managed to do “right” was refuse formula) and desperately wanted to do exactly what they all commented and demand she breastfeed on demand, however looking at her I knew it just wasn’t possible yet. They had taken her drip out though and were ng tubing all her nutrition.
Then we were hit with another complication, jaundice. Luckily now I had heaps of colostrum so that wasn’t a worry anymore, but bub had to have 24hrs of phototherapy UV lights. And sadly another 24hrs with little chance of holding her. After the phototherapy lights she opened her eyes at nappy change. Another 24 hours of weaning off the CPAP, and increasing feed volumes very quickly meant we were ready to be transferred to special care nursery closer to home.
As we were waiting for patient transport the Doctor comes past and tells me I can try her on the breast while we wait. I was so excited. It took a bit to get her tiny sleepy mouth latched and once she was latched she battled a Niagara Falls of milk.
Once we were at SCN we had monitors back on for the rest of the day to be certain after the travel bub was fine. When they retested her biribulim levels she had to go back under lights again. Once she was out we needed to focus on feeding. I asked for the LC to come and help me get a better latch, and I was handed a shield and told that prems just have small mouths and no cheek fat so they need shields. That made no sense to me, all I wanted was some tips to get a deeper latch, and the shield made her latch even shallower (she then didn’t even have any of my nipple in her mouth!). So I ditched that idea and just kept the flipple and burger hold going.
I was told to start with I could breast feed her every third feed. And the other two feeds could either be bottle or tube feeds. But that I should choose bottle feeds if I wanted her home quicker. I asked the reason she couldn’t just have all breastfeeds and was told she would tire out too quickly. So that cemented my decision to keep her non-bf tube feeds, because if the purpose was to prevent her from tiring, a tube feed would be much less tiring than a bottle.
And they agreed that if she woke and was looking for the breast she could have breast. After 24hrs we were 1x breast 1x tube. And another 24hrs we ended up with almost all breastfeeds, just one tube and one small tube top up in the 24 hrs.
During this time there was suddenly a lot of pressure for bub to not lose weight. She had lost around 15% while in the NICU, and now in order to go home she must be gaining weight. Weighing every two days was quite stressful, especially when other bubs around us were losing weight. We were lucky enough to have small gains at all weigh ins. We were lucky enough to be discharged after 7 days in SCN, but were put on ‘weight parole’ meaning the hospital LC worked one day a week at a chemist doing baby weights, so as long as we saw her each week until bub was supposed to be full term (another 3 weeks) and she gained weight we were allowed home.
So once we were home the plan I was given was to let her go a maximum of 3 hours between feeds until she was term as she was still a bit jaundiced. I had a massive oversupply to manage, and a toddler who desperately wanted to just have me to himself. So for the first few days every night when it was toddler’s bedtime we had a huge amount of tears because he wanted to be boobed to sleep (something he hadn’t done for over a year) but we couldn’t physically work out how to tandem feed both so that he could lay down to sleep. After the first few weeks of wanting to boob every time that bub did, he seemed to just lose interest again, and went back to just breastfeeding at bedtime.
Once we got to term she started going less and less time between feeds (we were excited as that meant she was playing catch up), and kept increasing her gains.
Many preemie journeys are very different. We were lucky that I knew I would have massive volumes of milk and respond to a pump really well, that gave us a great head start.
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