Intro

All content of this blog is my own opinion only. It does not represent the views of any organisation or association I may work for, or be associated with. Nothing within this blog should be considered as medical advice and you should always consult your Doctor.

Share your experience - Alice's story

I had the crappiest possible start to breastfeeding and honestly it is a miracle I am still breastfeeding my almost one year old daughter (only one feed a day now though). It honestly is the hardest thing I have ever ever done in my life (labour was a worse experience but this was harder experience!) and also the thing I am most proud of achieving! (And now I know what to answer in a job interview if they ever ask that question!).


I scribbled some of the barriers to breastfeeding on a breastfeeding support thread before when DD was 3 weeks old- but then MORE came up (lucky me! ).

So I just wanted to share the list again plus the additions to record how far I came now my daughter is almost 1 and maybe to give hope to other mums who are struggling:

1) Breast reduction 9 years ago (large reduction 7lbs taken out- one nipple doesnt function so well)- not even sure if I can breastfeed until I tried. HCP's all know this and assume am going to fail at breastfeeding so negative from outset.

2) Flat nipples so baby can't latch on without the discovery of fabulous nipple shields (genetic issue but not helped by reduction), then had to wean her off them gradually so incase they affected supply. By 6 weeks she was feeding without them.

3) Extremely traumatic hideous horrible delivery and baby in NICU for first 5 days- no cuddles for first 24 hours of baby's life, limited skin to skin- tricky with all tubes etc. Baby was oxygen starved (possible brain damage) and initially showed poor suck reflex but that improved within a day or so.

4) Baby being tube fed my EBM every hour means baby full and has no interest in latching- keeps falling asleep at the boob- i have to maintain these nasogastric top ups but once they are reduced to three hourly I can sometimes also get her latched for a feed. Except I also still have to pump and invariably she gets hungry just after I have expressed and there is no more milk! Breastfeeding support at hospital limited (lactation consultant promised everyday and never materialised) had help from speech and language therapist with latch though which was fantastic.

5) Baby has to have MRI, she is sedated with suppositories she keeps pooing out (effectively enemas)- she ends up going without a feed for 6 hours (at 8days old and already lost 10% of weight) due to the sedation, I pump in meantime but this mucks up the baby hungry, mums boobs full thing again plus difficult to get her feeding due to sedation. Loses yet more weight due to the "enemas".
6) By day 7 breastfeeding was still a massive struggle as we had to always give her nasogastric tube 32ml top up every three hours and it was always at a time which caused her to fall asleep and not be awake for a feed. We hated that nasal tube and so did she - used to pull on it during breast feeds and would look uncomfy during top ups. So in the end we had to say no more tube feeds and do her top ups with a syringe in mouth (easyish) or cup (good skill to learn but spilt everywhere and resulted in very windy baby). This was kind of against medical advice as they wanted to keep tube feeds going but we persevered and as a result breastfeeding was able to be established must better basically because we stopped trying to work to nasal tube feed times and did on demand breastfeeds plus top ups instead. The doctors were all freaking out and saying she is a big baby and you won't sustain her etc but it's what we had to do. With hindsight I think if more breastfeeding support had been available at hospital we would have figured out how to sync up the tube and breastfeeds but we aren't medical people so were just following instructions until they really stopped working for us but is scary to go against medical advice!

7) First week after leaving hospital (12days old) Baby loses 14% of bodyweight in total (not helped my mri enemas etc). Sent to hospital for dehydration check- supoosed to take an hour- takes 7 (and results come back fine). I don’t have enough to eat or drink and feeding is tricky in hospital as doesn't have pillow etc, and its not home. Anyhow of her 14%weight loss the majority of that was in hospital and after her enema. She did still lose a tiny bit more once we went against medical advice with not tube feeding her, but it wasn't massive and her weight is now fine so it was the right but scary decision for us. Really had to battle with hospital not to readmit us (I would have lost my mind- being completely loopy from the 8days in hospital the week before)

8) Baby put on intense regime of feeds- Every 3 hours -feed at breast, give 40ml top up, then pump next feeds top up then sterilise everything for next feed. We don't stop with the top ups really for about 10weeks.

9) Baby is really slow to gain weight (6weeks to regain birthweight). Have to give a formula top up sometimes as don't have enough EBM.

10) For first week of her life she had a canula in her arm for her antibiotics. This made feeding on the right breast very difficult as this sore arm would get in way and hurt her if positioned wrong and she didn't seem to feed as well in the rugby ball hold. creates supply issues in right breast.

11) Feeds would take HOURS, I would feed for an hour and she would still want more 20minutes later. It was relentless- finally her posterior tongue tie was discovered and snipped at 7 weeks. Had bad cracked nipples that made me want to throw DD across the room with the pain and unfortunately post tongue tie snip meant dd had to relearn her latch and completely knacker my nipples again. Then also got infection in nip so it wouldn't heal. I had painful feeding from 10days to 16 weeks as a result varying from agony and tears to grit teeth and curl toes. If it was agony all the time I would have definitely given up- as it was I just wore my teeth down from all the gritting!

For me breastfeeding wasn't easy or painfree until DD was 16weeks old (when she suddenly grasped it and feeds took minutes instead of hours!) and although it took weeks to wean dd off the formula top ups she was predominantly bfed (bottle formula at bedtime as supply never got up to full capacity) until we started weaning at 5months so am a little bit proud of how far we have come (and almost never want to completely wean her from breastfeeding because having finally got her going on the boob I don't want her to ever stop!- Although for me I probably draw the line at still breastfeeding a 12 year old!).

I would never wish on anyone what I went through but unfortunately I have read many similar stories so I hope my story helps someone have hope if they are at the same point of "one more feed then I am giving up" like I was.

6 comments:

  1. Wow Alice you did amazingly in the face of such adversity; as you say I would like to say your story is unusual, but sadly it's not. As I got reading I was thinking sneaky tongue tie, sneaky tongue tie - and then you mentioned it was found and snipped!

    Some hospitals I have found give terrible support when they have a non gaining baby and a breastfeeding mum - not only in terms of helping mum shift from naso to alternative supplementation, but emotionally and mentally too. I've landed myself in it with hospital staff this week for going and supporting a mum in a very similar situation - I want to ban the words "three hourly" LOL To get through that hospital experience alone you are truly a supermum!

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  2. amazing well done!

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  3. Wow, amazing story. You are an absolute star, and are right to be immensely proud of yourself.

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  4. That's utterly amazing. WELL DONE :)

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