Settle in this could be a long one…..
DD is now 10weeks + 3 days.
she has Down Syndrome, small mouth plus protruding tongue. She also defies typical expectations and is without any major health concerns.
I was determined I needed to breastfeed my baby as soon as I discovered I was pregnant and even more so upon finding out the potential extra chromosomes.
Having already raised a now 14 year old our nursing journey all that time ago was short, uneducated and unsupported.
jump to C section delivery at 38+ 4 due to low placenta. Baby girl born shouting, chunky and 7lbs 10oz in good condition.
Stuck in theatre room due to transfer bed not being brought for 20 minutes.
recovery room no support for breastfeeding.
on ward assisted with one latch attempt.
It seems the prejudice overruled common sense and midwife was soon getting me to hand express colostrum into syringes as I watched helplessly as other people syringe fed my baby. (Bearing in mind I could not mobilise and my mental state was already defeated).
I wanted to keep my baby undressed and on my chest but there seemed quite a lot of insistence thereafter to dress her. I consoled myself that fed is best and continued syringe feeding my baby.
I was however soon strapped in to electrical leg compressors and was on this bed at a very difficult and uncomfortable position i just couldn’t adjust and had no help with. Throughout that day nurse’s would do my OBS and assist with syringe feeds but as night came we seemed forgotten.
in my pain wracked and generally exhausted haze suddenly it was 4 hours since I’d really seen anyone. After 10-15 mls of hourly colostrum collection throughout the day i suddenly was only getting drops.
I called for help, what I got was a ‘midwife’ who told me I didn’t want to wake the baby to feed the baby and made me feel so threatened.
after realising we were now closer to 5 hours unfed I told her i just wanted skin to skin and I’m not getting colostrum any more. She expressed me, achieved nothing fed the few drops to baby and left again.
from there I realised just how alone we were in this and I was terrified.
by 5 am same nurse came back and proceeded to remove catheter.
as the time ticked by and i was having to call for pain relief , baby feeding assistance, and awaiting my SO to bring some previous harvested and frozen colostrum in.
I kept saying I was starting to need to Wee and could i have help getting up along with pain relief to kick start it…. They would agree, leave and another 30 minutes would pass… oh how i felt like a burden.
1 shift change later finally I had someone with a bit of common sense, removed the straps on my legs and helped me to stand and assist me to the bathroom.
oh how it hurt , but my mind was mind up I would be feeding my baby no matter what. Knowing too that it was no easy task with xxl breasts and flat slightly inverted shy retracting nipples. The most natural thing in the world from previous and current experience was so awkward with one good side and one bad.
Skin to skin, multiple latch attempts. Zero support and only suggestions of formula or NG tube. By afternoon it was clear my baby was jaundiced….. I’m guessing 5 hours without food would contribute to that.
By default of chromosomes I would have a sleepy baby but add jaundice and she wouldn’t wake with hunger or anything.
I found myself raising the bed dangling my bad boob in … hurting my back but i didn’t care my baby needed feeding and I needed to feed.
well in spite of her low tone and jaundice this babe could latch! She could feed! And she loved it! But, I struggled… I would top her up with syringe feeds frequently in between trying to keep her at the breast as often as possible.
I ordered some nipple shields addressed to home as I awaited my now prison sentence to come to an end but by day 2 midwives were measuring me for nipple shields and there i was trying to learn something else entirely later discovering they were too small anyway so it’s a good job neither of us took to them even as a midwife tried to support (and clearly failed having not listened to me that something wasn’t right with my nipple position).
2 nd night i was told there was a lactation specialist in who could help me. Well she wasn’t sent my way until the previous failing midwife realised something else was needed. Even then this LC type simply shoved my boob in babies mouth and left for an hour.
great, but for 5 minutes after she left baby detached and I found myself telling fibs just to get through the paperwork and stay clear of their bottle feeding suggestions.
babies latch became shallow and uncomfortable but bearable anything to get us home. I continued with syringe top ups too.
3.5 days later no need for light therapy as bilirubin levels were steady or dropping we were finally discharged and then i knew the real work would begin.
luckily the shields were there and what a game changer they were especially as my milk had come in. My baby fed with ease but i still had to insist on waking her every 3 hours at most or shoving these prosthetic nipples in her mouth and hoping she would eat… often times it could take longer than an hour and every trick in the book to rouse this baby.
within 24 hours my nipples hurt every time so i ordered size up on the shields and there we were set for a journey that should have been so much easier.
the midwives, /every HCA we came across insisted on telling me to ensure i express after every feed or i could get mastitis.
well that was counterproductive because i ended up with an oversupply by week 3 i had mastitis. !
week 2 we were clear of jaundice and baby was thriving despite an initial loss of 5% and bad professionals communication and weigh ins.
still telling me to empty my breasts ( well at this point free flowing milk establishment shield wielding how could they ever be empty? Hindsight is wonderful)
oh how i loved and hated these shields here are the pros:
1: easy latch for baby.
2: baby fed.
here are the cons:
1: messy milk spillages constantly soaking everything!
2: placement, latching, positioning, all extra difficult.
3: being prepared at all times with a clean shield.
4: baby straw sucking rather than opening big.
5: not discreet for public use.
6: creating bad habits.
i’ll stop there even though i am sure there is do much more I’m forgetting. I never had the problem of reduced milk not even because of the pumping after. Baby still took what baby needed and probably then some. She always managed to feed from them chin to breast massage as if she was feeding text book from bare breast.
Mastitis seemed to create our next problem….. green poops!!!! Of course me constantly trying to feed or express from the bad boob brought more milk to the table.
lactose overload…! I was obsessed with trying to correct these poops. I had people tell me from so many forum it was the antibiotics or food allergies. So i set about a 24 hour bottle feed express to match marathon and there we were with beautiful yellow nappies again. I thought maybe it would help regulate my milk too but no such luck. So with advice we block fed for a few days.
i had also invested in haakaas and attempted milk removals before feeding which again just add to problems really.
we saw SALT and an IBCLC in clinical settings and it was just more frustrating than helpful. We got a referral to another LC but was offered morning appointments in a setting 40 minutes away and I literally couldn’t think of anything worse considering how many appointments we already achieved for various checks and me having to take prepared bottles because of how awkward feeding was.
well by week 5 yellow poops we’re starting to come back in and then boom mastitis again! But this time self resolved…..
I also happened to realise at week 6 baby had almost completely lost her ability to open her little mouth. It was far too easy to suck draw these silicone teats from shield or bottle.
the constant back ache from poor position and the only one that worked to negotiate attachment of shield, stilling baby, latching baby and being prepared for the flooding, choking, overspills and quick relatches.
so many times i cried, despaired and considered giving up breastfeeding entirely. Absolutely exhausted and pained too. PP recovery. Surgery recovery. Adjusting to the life with a newborn.
the loneliness, guilt, heart ache becomes almost unbearable.
The turning point!
I tried for so many weeks to bare latch to attempt free latches at every variable… baby content… tried… start of a feed… middle of a feed… after a let down… you name it I probably tried it! She would latch occasionally but it wasn’t what she had become accustomed to. It was harder work and she would get upset.
but then one weekend at 9 weeks I started all the tricks. A bath together…. Skin to skin…. Calm here’s my nipple it’s all fine… I then clued into how much these shields were more my crutch than hers. By the Wednesday i was defeated again but she was having her injections that day too and i think we both just kind of decided enough! So here we are 5 days ditched still learning positions and comfortable ways but feeding beautifully….
comfort nursing way tooooo often! But hey we just learned a new skill. Gorgeous yellow nappies… frequent with lots of wet ones too. We are winning! My aches are easing, my laundry has lessened. My inner strength ever increasing. Baby rests better (unless it’s night).
less gas!
but with it a new set of concern…..
baby doesn’t stay at the breast as long as she used to. ( possibly just more efficient feeding) getting all the milk too instead of it spilling out.
worry for other factors. Such as recently evening 1: cluster fed /tanked up, slept 7 hours solid… woke… pooped… brief top up feed 1 side slept 5 hours again.
evening
2: (now) cluster fed, / chewed in boobs for hours in between slept 8 hours unbroken, woke pooped short fed 1 side and back asleep!!!
at no point have I felt engorged or uncomfortable. So worried i will lose my milk if it’s another 5 hours before she even tackles the other breast. But I don’t want to be pumping for milk she may not need and setting myself back on the path to oversupply. Even though that’s better than under supply I also just need boobs and milk to follow her not live by panic.
she also won’t favour feeding above sleep so i can’t schedule her.
well if you made it this far Thankyou for staying with me. There’s probably a lot i have left out but if anyone out there wants or needs to chat then feel free I’m certainly no expert but I am a sympathetic set of eyes and fingertips