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Tips from a mother with a premature baby

Submitted by Petra on Tue, 08/15/2017 - 10:02

Thank you Iona :-)

"From the outset my son’s entry into the world was never going to be straight forward. From week 20 of the pregnancy I was warned that he was growing slowly. By week 30 I was told that he would not make full term and that I should prepare for an early delivery in week 35, but it was not to be. At 32 weeks I went to A&E with what I thought was food poisoning. It was not until 18 hours after being admitted that a student doctor recognised my epigastric pain as a primary symptom of a rare form of preeclampsia called HELLP syndrome. By the time my son was delivered by emergency caesarean, we were apparently hours away from a crisis situation that could have ended very badly for us both.

He was delivered safely, and the first image I remember is of trying to crane my head to see him while reaching out to touch him, but restrained by cannulas, wires and tubes. All I could do was point ET-like with one finger towards this miniature alien-being, wrapped in a foil blanket proffered by a nurse, before being whipped away from me and taken to SCBU. I was then transferred to the recovery unit for observation as I was still at risk of complications after the birth.

I was very lucky that a friend of mine knew that I was in hospital and also knew how important it was to me to breastfeed even if my baby arrived early. She got in touch with the breastfeeding specialist in the hospital who visited me in the recovery unit and showed me how to hand express the ‘liquid gold’ or colostrum into a small test tube. I was still bedridden, attached to multiple tubes and machines, in extreme pain and separated from my baby. The one thing I felt able to do was to get my colostrum to him, so I painstakingly squeezed and coaxed millimetres of the stuff into a pipette, only to meet with a disparaging “let’s wait till you can manage a bit more” from the duty nurse. I was incensed – didn’t she know how important even one tiny little drop of this stuff could be for my baby? Evidently not. In my enraged and hormonal state I made sure that SCBU knew that I had colostrum and insisted that a nurse come down to my floor to get it at regular intervals. Later on I made sure that my care plan included that my expressed milk would reach my baby. I also made an appointment from my bed to see the breastfeeding nurse on the SCBU. She helped set me up with a breast pump which I was able to use at my bedside.

I was put on the general ward with other mothers who had recently given birth normally. It was utterly torturous to hear them through the night, being able to have their babies in their arms and nurse them when they cried. It was almost 48 hours before I was mobile enough to be able to see my son. Before that I had to rely on my partner and my parents bringing me reports, and a very grainy photo that my partner took on his mobile. Finally after breaking down and crying, I was escorted to SCBU in a wheelchair to meet my baby. Nothing could prepare me for this moment of helplessness, to see my tiny tiny child in a glass box attached to wires and tubes.  But as I rose painfully out of my chair he opened his eyes and looked directly at me with his deep brown eyes, as if to say “So here you are! What took you so long?”

I was frightened to touch him, he looked so frail – all angular limbs and a large perfectly formed head. I was so very grateful for the wonderful nurse Sam who had prepared for my arrival. She was so incredibly sensitive, but challenged me to overcome my fears. She helped me for the first time hold my baby against my skin and I watched as I saw my heart rate slow on my monitor, and the oxygen levels rise on his. I sat for hours and hours over the following days like this. I found out that I could visit at any time so I spend some beautiful hours holding my baby in the middle of the night, rather than being awake listening to other mothers with their babies on the general ward.

Very soon Sam encouraged me to try Aryam at the breast. To increase his interest she held back his feed so that he would be hungry when I visited. The first time to my great astonishment, he latched on confidently. It didn’t look physically possible given that my breast was bigger than his entire body! My nipple looked like a large apple going into his little mouth! But he was very happy to hang out and nuzzle. So a routine developed where I became confident in taking him out of the incubator, holding him on my chest skin to skin, giving him his tube feed while he nuzzled, and then doing his ‘care’ (nappy change and cleaning). Aryam began to timidly suck after about a week of nuzzling – but I wasn’t confident that I was producing anything despite an arduous regime of pumping that I had begun. I also wondered whether he would ever be strong enough to suck efficiently to get any milk from me.

I was then lucky enough to meet in a hospital corridor, my friend and breastfeeding counsellor Petra, who I’d met previously when I took my firstborn to a local breastfeeding cafe. Petra came into the unit to meet my son and I proudly showed him off and his great latching skills! She lent me an amazing book which outlined the importance of kangaroo care for prem babies and went into the research about benefits and possibility of breastfeeding a preterm infant. This helped me to understand that the process of learning to breastfeed for a prem baby and mother is completely different in timescale to that of a full term baby, and that I needed to be patient and persistent to be ready when he was.

In my second week I began to be more focused on trying to get Aryam to breastfeed as I was becoming more confident that he could. So I timed my visits for when I knew he was due a feed and made sure that I offered him breast before a tube feed. For some days the SCBU nurses were happy for me to do this and then top up with a tube feed afterwards based on my estimate of how much Aryam had taken in. I was wildly underestimating how much milk I was producing for him as I still didn’t seem to be producing much through pumping. But by the end of the second week he had put on the target weight ahead of schedule and graduated out of the incubator into an open cradle. He was still being tube-fed at regular intervals.

There was some debate among the nurses as to what point he was ready to be exclusively breast fed. I kept feeding him through the third week and by the beginning of the fourth Aryam was beginning to ‘demand’ his feed. He was one of the most vocal babies on the unit and he became so hungry and loud especially at night, that the nurses eventually realised that the time had come to see if we could go it alone. It came to a head when one of the nurses gave Aryam a bottle at night to calm him as he had been crying for me all night. I had specifically asked for this not to happen, and was pretty disgruntled that he had been given a bottle and a dummy against my wishes. However I took this incident to mean that Aryam was now strong enough to assert himself and demand a feed.

So at my request we booked into the ‘going home suite’ for a trial of two nights. For the first time, Aryam was not attached to a monitor or intubated. I co-slept with him all night, and couldn’t sleep of course because of the combination of joy - just watching him breathing all by himself next to me, and the fear of squashing him or him rolling out of the narrow single bed! By the morning I knew that we were going to be okay. He had fed at four hourly intervals through the night and importantly it felt so right.  We were discharged the following morning and sent home!

My learnings for mothers in the same situation:

Ø  Make an appointment to see the breastfeeding specialist in the SCBU as soon as you can to ensure that you are linked into any available support

Ø  As early as possible find out how to express colostrum by hand and get it to your baby. You may only be able to squeeze out a few drops but this is still highly beneficial for your baby if you can get it to them. Speed is of the essence and most nurses/midwives know this.

Ø  Even if you are separated from your baby initially you can express milk for them, so find out where the pumping station is, or ideally ask for a pump beside your bed so that you can begin expressing as soon as you are able. This will also help you build up your milk supply.

Ø  Look after your own health, healing and energy levels. After the physical shock of a C-section, the SCBU routine is exhausting physically, mentally and emotionally. You must get adequate sleep, eat well and make time to process your emotions. Pull in whatever support you can from those around you. This will ultimately benefit your baby and ensure that you leave SCBU sooner rather than later.

Ø  When other mothers around you are producing pints for their babies, you may feel inadequate. However there is no competition! Go easy on yourself in terms of your expectations. Your body has gone through an enormous shock.  You have also started to produce milk before your body was scheduled to. But you are more than likely to be able to produce what your baby needs at the rate and quantity that they need it (which is millilitres at first!).

Ø  Make sure that your wish to breastfeed is written into your care plan for you and your baby from as early as possible and that all care givers are made aware of the implications of this for the feeding schedule and methods.

Ø  If you wish to establish breastfeeding, ask staff not to use pacifiers or bottles to feed your baby to avoid nipple confusion. In my opinion this is one of the main reasons that so many babies leaving SCBU do not successfully breastfeed as they have already got used to being given bottle feeds from very early on.

Ø  At some point you may meet with resistance to breastfeeding from some staff. This is because breastfeeding may conflict with the regular feeding routine set up within SCBU – and because it is a variable which is less controllable than feeding via tube or bottle. I was able to reach a compromise where breastfeeding took precedence over tube feeds until my baby reached his target weight. Thereafter I had to prove my confidence to look after my baby and breastfeed on demand. Happily my baby was totally agreeable to this plan and made his opinion known loudly!

Ø  Be confident, assertive and identify which key staff are your allies and will actively support you in establishing breastfeeding. At the end of the day most will be supportive because it is in their interests for you and your baby to graduate from SCBU as soon as possible."

 

This is the book: 

Front Cover