Published at some point in 2016, lost the original timestamp when I re-set it to public. Sorry some of the IG pix are missing. Not sure which ones they are now!
Clementine is a miracle and very determined at breaking rules and expectations. Knowing at birth that she has #Downsyndrome, we were told not to expect her to latch and #breastfeed. Since she has DS the best thing for her *is* to breastfeed - all of the wonderful developmental/nutritional/immunological benefits that apply to "typical" children, they all become exponentially more important for a baby with DS. I remember her doing the newborn baby #breastcrawl and being like blown away - here is my baby who almost didn't make it past 18 weeks in my tummy and has a heart defect crawling her way up. I wish I had video but the memory is so clear. She's amazing!
Shortly after we got home she went into #heartfailure sooner than was anticipated so I had to switch to #eping (exclusively pumping) and fortifying with formula for extra calories. Unfortunately, the pumping put me in overdrive and I was pumping 50 oz a day, had to pump every hour around the clock or I would get so painfully engorged. I accidentally fell asleep for 7 hours (had plenty of milk stored up and help on hand to bottle feed her) and woke up with my first bout of mastitis. At a month and a half in - she started throwing up her meds so we took her to the hospital to get her back on track - second wave of mastitis.
Clem was so sleepy that bottle feeding her was an arduous labor of love - she would take almost an hour to finish .5 oz of milk+formula - healthy babies on avg take 15 mins to down 2 full oz. She was failing to thrive and so they bumped up her #openheartsurgery by a month.
I had to continue pumping through her recovery - so my husband sat bedside while I was next door at Ronald McDonald House pumping and crying alone all day and night with quick pop-ins over to her PICU room. Shortly after surgery milky fatty liquid was coming out of her chest tube and she was diagnosed with #chylothorax - a normal complication where a lymphatic vessel accidentally gets nicked and starts leaking into the chest cavity. So we had to stop giving her breastmilk and she went on a high protein low fat special formula. I was told for 6-8 weeks. I went momentarily bananas - I would have to pump for another 6-8 weeks. At this point, I'd had mastitis 2x, my nipples has ripped at the base and bled a few times over, I hadn't slept more than 2 hours at a time for 2 months, a few weeks after delivery I was on super strong antibiotics and had to pump and dump, and I had a freezer full of milk already.
We got her home and she started getting belligerently fussy, screaming, thrashing, constipated, and then came the explosive diapers - it was awful. That special formula was hurting her. I researched centrifuging my breastmilk to separate out the fat - I begged her cardiologist for another option. She said that since the chylothorax was so mild that it might be healed and to try breastfeeding her for 2 weeks and then get a chest X-ray. Thank God! The X-ray was clear and my milk was starting to sync with Clem and we never looked back. Of course, I have lost my milk like when she first started cutting teeth and they were so razor sharp they made me bleed when she bit and I was so nervous I couldn't let down. And most recently last week during the heatwave - while she was recovering from a kidney infection - I barely had any milk at all. And all she wants to do is nurse.
Recently, I have had doctors tell me I need to stop since she's almost 2. Per the World Health Organization I plan on BF until 2 y/o and as long after that as she wants. Up until her kidney infection she did not have so much as a cold since birth - I believe strongly in the immunities that breastmilk provides and for our children with DS / Congenital Heart Disease (weakened immune systems) who spend a lot of time in the hospital for respiratory illnesses that simply give others sniffles - any I am determined to breastfeed for as long as I can, I know it won't prevent sickness forever and she'll wean sometime - but so far I am so thankful I've been able to do this for her.