Alison. Missing the breastfeeding window was one of the hardest parts of my NICU journey.

Alison and Michael

Alison and Michael

My pregnancy was a very long awaited and wanted one, and we were cautious. We told almost no one – including family – until we were reasonably sure that everything was OK, which in practice meant we told people at 17+2 weeks after getting the amnio results.  All was well, although our baby was on the small side.  My mother was very excited and gave me a two year Australian Breastfeeding Association membership – there was definitely an expectation of a routine pregnancy and breastfeeding experience, and I come from a family where breastfeeding is normal and entirely expected.

As it turned out, things didn’t quite go to plan.  At 22+2 weeks the baby was 2-3 weeks behind growth and I went on minimal activity, at 24+2 weeks he was 3-4 weeks behind and we were told the placenta would fail and he would be stillborn that week, at 25+2 weeks he was still alive and at 25+3 weeks I was hospitalised with severe pre-eclampsia when my blood pressure decided to take off during an obstetrician appointment (fortunately for both my son and myself the appointment was in a hospital, and even more fortunately I was responsive to the drugs!). Four days later – after spending two nights in a delivery suite with my blood pressure being taken at 2 hourly intervals, then two nights in a high risk room with blood pressure measurements at 4 hourly and then 6 hourly intervals – I was transferred to a tertiary hospital and then monitored daily to see whether the placenta was failing and how my baby was going as well as the 6 hourly blood pressure measurements and ongoing drug regime.  Finally, at 27+3 weeks, it became obvious that the placenta was not going to last another 24 hours and Michael was born that afternoon.

The following day I started expressing.  To be honest I was kind of surprised that expressing was even possible – it was so early, Michael was so small, and I really didn’t trust my body by that point.  I couldn’t get a baby to term, how on earth was it going to produce milk?  Much to my surprise, and with a lot of help from the midwife, it did though.  Firstly with hand expressing, then with the help of the maternity ward Medela pump – tiny mls which I carefully collected and even more carefully took over to NICU to freeze and give to Michael when he was able to have them.

By the time I was discharged I’d managed to hire a pump from NICU, and was expressing every 3 hours.  It was taking forever though with that pump, so when a friend offered to lend me her double pumping Ameda I jumped at the offer.  Still was expressing every three hours, but at least it took half the time!  I was fairly fortunate that my supply was pretty consistent – never huge, but it kept going and so I did as well.  And so it went, pumping, freezing, pumping, freezing while Michael developed severe chronic lung disease, was on and off feeds (very frustrating from my perspective – I swear he would wait until after they’d defrosted my milk before going off feeds, which meant the milk had to be thrown out), started steroid rounds, had laser eye surgery for retinopathy of prematurity, was extubated and re-intubated twice before finally, on steroid round three, he was able to get to get onto CPAP and stay on it.  Through all this I pumped, partly because it was the only thing I could do, and partly from magical thinking – as long as I kept pumping he would be OK, and I could protect him with my maternal antibodies.

Slowly Michael began to progress and put on weight – after 72 days he finally hit 1kg, and shortly after that was able to transfer from the most intensive care room to a less intensive care room.  At that point I started pestering the consultants to let me do breast contact, as Michael was already past term and I was worried that he would lose the instinct.  Despite reservations, mostly to do with him still being on CPAP and the risk of him inhaling milk, they did finally agree that we could do contact on an empty breast.  So we did – and Michael proved firstly that size is no match for determination when it comes to attaching, and secondly that chronic lung disease doesn’t mean that a baby can’t shriek loudly with frustration because they keep slipping off the nipple.  It was very difficult to get him to attach though – my nipple was considerably bigger than his mouth so a lot of flattening and jiggling was required, and the CPAP tubing was a complete pain, coming apart at regular intervals and requiring me to hold bits in place while simultaneously manoeuvring Michael and my nipple around so he could attach.  Then of course he’d give three sucks and fall asleep exhausted!

After several weeks of this we decided to see whether Michael could cope with low flow for an hour while we started actual feeding – fortunately he could, and so we moved to two actual feeds per day, along with the tube feeds he was getting of my breast milk.  Apart from the always slightly odd question “how much did he drink?” – I dunno, pretty sure there’s no meter on my breasts, useful though that would be – it was wonderful being able to actually hold and feed my baby, especially without having to worry about his breathing system suddenly disintegrating while I was doing it.  Of course during this I was still expressing and freezing, keeping the routine going.

We progressed very slowly but it seemed like things were moving on the right track – his oxygen was very slowly improving, he was feeding well… and then Michael hiccupped his NG tube 14cm out of position, aspirated milk and crashed – in seconds he managed to damage his lungs and lose about three months worth of progress.  Back to the most intensive care area, back off CPAP – fortunately he didn’t have to be re-intubated, as that would have been quite devastating.  As it was breast contact and feeding were back off the table, the most he could handle was kangaroo care again and he slept through it.  After a couple of weeks he’d managed to get back onto CPAP and several weeks after that he transferred back to the less intensive care area and I brought up the question of feeding again.  There was no question of trying him on low flow – he was switching between CPAP and IMV still, and his oxygen levels were still pretty high – but they were willing to take the chance with giving him contact on an empty breast.  So we tried again – and nothing.  No interest in attaching, no recognition that there was even a nipple there, all he wanted to do was cuddle.  Initially I thought that he was tired, and keep persisting, but after a day where I was literally dripping milk onto Michael while he smiled at me and ignored the breast completely (nudging the nipple out of the way so he could see me better at one point) I had to admit that he had completely lost the instinct and hadn’t learned the behaviour.  The window had closed, and we were too late.

Through all of this I kept expressing, dropping the night expression somewhere along the way but managing to maintain levels despite this.  My levels did drop slightly, and I panicked that I was about to lose milk entirely and started motilium – in retrospect I think that was partly due to stress, as a lot of events happened in a very short period of time.  My freezer got fuller and fuller, to the point that we no longer stored food in it.  For my birthday I got a new freezer, which was wonderful – I could store milk by date order AND I had room for food again!  The new freezer slowly filled up, but Michael at least was progressing – after some time he made it back onto CPAP, and finally on to high flow just in time for his birthday.  Through all this he was being tube fed with my milk, although we’d also started solids in NICU to try and keep his progression somewhat normal.  Well, normalish.

Unfortunately Michael couldn’t maintain his blood gases on high flow, so three weeks after his birthday he was back on CPAP full time – and then he developed really bad nappy rash and very bad eczema.  As a precaution they took him off my milk and put him on lactose-free formula – this was quite frustrating as I still had a freezer stuffed full of milk!!  After the rash cleared we slowly reintroduced the breast milk, adding an enzyme to break down the lactose beforehand, and mixing it with formula.  I was still expressing (down to four expressions per day by now), and bringing in milk… and one day I realised that the freezer was getting empty, as Michael was now consuming a lot more than I was producing, even with the formula added in.  Finally the frozen milk ran out, and it got to the point that what I had expressed that day I was bringing in and it was being consumed the same day – Michael was essentially getting two feeds that were lactose-free(ish) breast milk and all the rest were formula.

At this point my friend contacted me to ask if she could have her breast pump back, as she was about to have her third child.  Yes, I had had it long enough for her to have conceived and gone to term.  I gratefully returned it and bought a new second-hand one of the same model off Gumtree.  No, I wasn’t ready to stop expressing – Michael was still in NICU, and so the magical thinking continued.

Meanwhile Michael’s oxygen requirements had slowly started dropping, so it was decided to try high flow again – and this time he was able to cope.  Even better he then showed he could cope on low flow while awake, so we were able to take him home with some medical equipment.  I was still expressing three times a day and adding lacteeze to the breast milk mixed with formula – I wasn’t expressing anywhere near enough for his daily needs anymore!   With him at home the number of expressions slowly dropped down to two per day… and finally, when Michael was 20 months old, the pump broke.  I took that as a sign to stop expressing… and started again manually the following day when my breasts hurt!  Manual expressing was a total pain and really annoying, and over the course of the next month I dropped from two expressions per day to one per day to one every second day until finally I stopped altogether.  Why did I keep going so long?  Partly magical thinking (Michael will be safe from viruses if I just give him breast milk!), partly I was in a routine, partly social outlet (I met a lot of people during our NICU stay via the expressing room), partly I think I was still subconsciously hoping that the instinct would suddenly kick back in and he’d start wanting to breastfeed again.

For me missing the breastfeeding window was one of the hardest parts of the NICU journey – not so much because I was desperate to breastfeed, but because Michael initially had such a strong instinct and for the first time since week 22 in my pregnancy something finally was working as it was supposed to.  I really loved having him cuddled up with me, I loved that he could attach with help, and I loved that I could feed him.  Missing the window and losing the instinct had a lot of knock on effects – Michael came home with a peg, and learned to drink at 3 and a half years old, in an intensive inpatient feeding clinic.  It took a lot of practice and therapy for him to learn to eat, starting from in NICU and finishing with him coming home from the feeding clinic taking in all his nutrients by mouth for the first time.  (Although I have to admit that we still have moments of “how do we give medicine orally??  The peg was so much easier!”)  The lack of oral feeding also impacted on his speech development – the same muscles are used for both – and he is quite delayed in speech.

In the end though I look at it and say that I did manage to breastfeed Michael for 21 months, even if not in the way that I thought I would when I first got pregnant.  Michael was on breast milk exclusively for quite a bit of that time (ignoring the TPN and nil-by-mouth parts!)   I was lucky that my supply was pretty good and pretty constant – I stopped the motilium (forgot to take it a couple of times, then used up the last couple of tablets just before Michael came home and couldn’t be bothered going back to the GP) and dropped expressions without much immediate change.  (Yes, I graphed my supply.  Doesn’t everyone?)  I can highly recommend the Ameda pump, and also the Medela (used that in NICU as well).

A final word of advice – if you’re giving a subscription to ABA to an expectant mother (which is a really lovely and thoughtful gift btw) then please wait until at least 6 weeks before the baby is due, or after it is born, whichever comes first.  Even if you are really excited about the pregnancy!

Alison.

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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