Breastfeeding my Heart Baby

I have been wanting to write this post for a few months but I knew it would be a biggie so I was waiting until I had the time and right frame of mind to take it on, today seems like the day!  So – as I have previously mentioned, my beautiful second baby was born on Nov 12, 2012 and as far as we were concerned, all was well; he was a sweetheart and his big brother doted on him immediately.  Of course, as I have talked about so often on this blog,  things turned out to be far from well and we discovered that baby was a very sick little boy, requiring life saving heart surgery at 16 days old.

Now, I breastfed my first son until a few months after his second birthday, we had a wonderful breastfeeding experience together, never once an issue – so, of course, I assumed I’d feed number two in the same way. In hindsight (ah hindsight, I have buckets of the stuff, drives me slightly loopy sometimes) the feeding was not that smooth from the start with baby.  He was quite fussy and  struggled to latch well.  I didn’t think too much of it, I worked hard on positioning and felt it would come good in time, I mentioned it to the visiting midwives and health visitors, and they watched us feed, didn’t see too much of a problem and suggested I burp him more.  Little did I know, that his poor feeding was just one indicator of his serious heart condition.

When his condition was identified at ten days old and we were admitted to the children’s hospital in Bristol, I realised I had a massive challenge ahead if I wanted to keep giving my beautiful boy his mama’s milk.  He had keyhole surgery the night we were admitted to hospital which left him in pain and druggy for days.  The feeding, unsurprisingly  went from a bit iffy to much worse.  He was oh so tired and only fed for a few minutes at a time.  We were required to monitor how often he fed , writing down each feed and how long it lasted.  He had monitors attached to his little toes and chest, we couldn’t move far from the machines, we were in a busy, noisy ward, I had one hard and uncomfortable high backed chair to sit on.  Needless to say, not a recipe for breastfeeding success.  The nurses assured me not to worry too much, everything would get easier once he had his main surgery and was ‘mended’ – he wouldn’t be so  tired and his heart would be functioning properly.  The surgery was hanging over us, we didn’t know when exactly it was going to be but we understood it had to be soon. It was the strangest feeling, I was dreading the surgery, but also looking forward to it because I knew it was his only chance of survival so I wanted to get on with it.

We were moved to PICU (Pediatric Intensive Care Unit) in preparation for his surgery, and spent a few days there waiting for the big day.  We continued with the feeding but baby wasn’t taking as much milk as I would like, my supply was still regulating and I was becoming full and engorged so I soon became best friends with the wards breast pump.  Whilst he was on PICU, I stayed in the hospital parents accommodation  2 floors up, and asked the nursing staff to phone up to me throughout the night when baby needed fed. It was exhausting, the parents accommodation felt like a prison cell. I wept, I pumped, I celebrated a whole 10 minute feed, I syringed precious milk into his tiny mouth when he was too tired to suck.  Now, I could be accused of being slightly evangelical about breastfeeding, I just think its the most wonderful gift for a child, and it is intrinsic to my experience of motherhood.  I was so desperate for it to work with baby and I, I knew he, more than anyone, needed the goodness and healing of my milk.

The day before his surgery, the anesthetists came to see me, they explained that he would have to be nil by mouth for 5 hours before his op, which was to begin at 8am.  I asked the nurses to ensure I was called down at 3 am to give him his last feed.  I will never forget that feed, padding down to PICU in my slippers, the ward was quiet but for the beeping of the machines, I held him and cried as I wondered if this was the last time I would feed my boy, I actually wondered if it was one of the last times I would ever hold my boy, the risks of this operation were hard to ignore.

He went into his operation  and 7 hours later came out having done as well as he could have, the first 24 hours were critical.  My husband and I  sat bedside and looked at him, holding hands, in disbelief at what was happening to our family.  Baby boy was unrecognisable, with wires and huge tubes coming out of his tiny body. The cardiac liaison team did a great job in warning us about how he would look but it was impossible not be shocked at the sight of our precious boy.

I continued with my pumping, keen to keep my supply up. Baby was starved for the first day after surgery as it is important that their little bodies do not have to work at digesting food, they simply have to concentrate on recovering from the shock of surgery.  Then they began to introduce tiny thimblefuls of my expressed milk, maybe only 5mls at a time, every few hours.  Baby boy had  an NG tube in his nose and the milk was put stright down the tube into the stomach.

We were moved back up to the cardiac ward a few days later as babies recovery was going smoothly, he was still being tube fed my milk and I was still pumping but I was told we could try and reintroduce the breast when we got on the ward – I couldn’t wait! The first post-surgery feed went pretty well, he hadn’t seemed to forget what to do as I feared he would, my heart swelled when I saw those perfect little lips rooting and sucking as before.  The nurses explained we would alternate between tube feeds and breastfeeds every three hours.  The breastfeeds seemed to be going quite well but the tube in his little nose was a nuisance, it was agreed that we would take it out and go to full breastfeeding – I was delighted!

This should be the happy ending but was probably the toughest time at all for me. After a day of solely breastfeeding, baby was weighed to see how he was doing – uh oh , hes lost weight, not to worry the nurses told me, only day one, of course he will gain tomorrow.  I fed and fed but he wasn’t taking much again, the morphine was still coursing through his little body, he was so tired and weak.  Day 2 came and I waited nervously for the sound of the rumbling wheels of the scales trolley. Lost again, oh shit.  I saw the glances exchanged between the nurses, I noticed they wrote ‘breastfeeding’ with an asterisk by my name on the nurses handover board. I knew we didn’t have much time, this baby needed calories to recover from his ordeal, and he wasn’t getting enough of them from me.  Talk began to turn to putting the tube back in and my heart sank – I instinctively knew this would be the kiss of death for our feeding journey. I began to research and quickly found out that feeding issues were synonymous with heart babies, I couldn’t find any success stories about breastfeeding post open heart surgery. I started to consider whether formula might be the right thing to.  I was emailing back and forth with a very wise and wonderful friend, and I explained to her that heart babies were rarely breastfed and she said something about ‘not taking on other peoples negative stories as my own, we were our own unique case and just to take it one feed at a time’ – I am so grateful for her encouragement, it was just the boost I needed at my lowest ebb.

So we carried on, but I was completely devastated when he lost weight for the third day running.  All other aspects of his recovery were coming along so well except for the damn feeding, the doctors explained to me that it was essential that I get breastfeeding established and fast.  I suddenly mustered the energy to get pissed off – I pointed out the futility of saying I couldn’t go home until breastfeeding was established when I was in an environment that simply didn’t allow for breastfeeding to be established. Let me go home, I said, let me get in my bed with my baby and get skin to skin and feed feed feed, I knew we could crack it if we just had some space, no recording, no timing feeds, no wires. The doctors were having none of it but suggested a compromise – we were going to be put in a private room, given one more night to get the weight up and if there was no gain in the morning the tube was going back in.

The room felt like luxury – it wasn’t, I assure you, but I was in delight with getting a bit of space.  ‘Right, wee man’ I said to baby ‘lets go for it’.  I sat up all night and fed him as much as he could manage,  I lay down on the bed with him, I snuggled him up under my top, I stared out the window at the night time streets below and held my beautiful bundle to my breast.  Morning came as did the inevitable weigh in, and…. big fat weight gain!! Hurrah!!!!!  The relief was immense.  We were quickly given the green light to go home, and the health visitor would visit us weekly to weigh him.

As soon as we were home, the feeding got better and better, our lovely boy learned to smile and it felt like the sun was appearing from behind the clouds.  We took to our bed, often with my 3 year old in tow, we fed and cuddled, and my wonderful husband provided endless cups of tea and treats for me.  It wasn’t all smooth sailing, fate threw in two bouts of oral thrush for good measure, but we cleared that up and kept going.

As I write, I have my 5 month old  baby on my lap – hes gazing up at me contentedly after a feed, milk trickling out of his mouth!  His weight gain is better than we could have hoped for, hes riding high on the 75th centile, having fallen off the charts in hospital.  He is content, relaxed and the smiliest baby I’ve known.  I  feel so privileged to have him in my life and I am so glad we have made it to where we are today.  In the depth of our weight loss despair, I remember googling on my phone and saying to my husband ‘I wish I could just find one story of someone saying ‘I breastfed my heart baby and it all worked out ok”.  I could not find that story, but I dearly hope that maybe some mum will come across my story and take some encouragement from it, because I breastfed my heart baby and it did all turn out ok.

Baby Arthur -1493

4 thoughts on “Breastfeeding my Heart Baby

  1. Such a wonderful post – you are incredible to persist with the breastfeeding when it was such a horrifically stressful time. I am so happy to hear that the little guy is thriving – dribbling milk and on the 75th centile, what a super star! Though 5 months already…time is going too fast!

  2. Wow. Just cried all through making dinner. So happy for you and little man. You are a trojan to do what you did for him xxx

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