After having a tricky start to breastfeeding with my son, which turned into a successful 17 month feeding journey, I was passionate about breastfeeding when I found out I was pregnant again.
A Challenging Start to Pregnancy
At my 12 week scan, the sonographer identified that my baby’s NT measurement was a tiny bit over the threshold and we were sent for further testing. We had a NIPT that came back with a 99.9% chance that my baby would have Trisomy 21, Down syndrome. This was a huge shock to us. I was signposted by the hospital to the ‘Positive About Down Syndrome Expectant Parents ‘ group on Facebook.
I tried to gather as much information as I could to ensure I was as prepared as possible. This included attending an online breastfeeding session with Down Syndrome UK’s (DSUK) lactation consultant and parent peer supporters who shared their stories.
I worried that this would be another difficult breastfeeding journey from the outset and questioned about how long it would even last.
Preparing for Feeding With a Down Syndrome Diagnosis
A few ultrasounds down the line and we discovered that our baby not only had a large hole in her heart, but also Duodenal Atresia, which is an intestinal blockage that required surgery. This would mean a lengthy NICU stay an hour away from home. She would be nil by mouth until surgery and Ng and TAT tube feeding, in the short term at least.
Knowing that I would initially be just pumping for my baby was daunting. I researched breast pumps and prepared myself – but when I went into labour in the back of the car in the way home from holiday at 33 weeks, my preparation hadn’t been done early enough!!
An Early Arrival and NICU Stay
Our daughter Ivy arrived early then next morning and was taken straight to NICU after a very quick hello. There was no skin to skin, no golden hour and no first feed. It was very sad and lonely to be apart from her.
Knowing I wanted to provide her with breast milk, I got hold of a hospital kit as soon as I could and started pumping. It was a slow start and the first night I had to stay in some hospital accommodation with no pump. I had to hand express through the night until I could get access to a pump again in the morning.
Finding Strength Through Pumping
In NICU I stayed organised by setting alarms on my phone and making sure I got away from Ivy’s bedside to take a breather and pump. It was a good excuse to get away from sitting there all day.
Expressing rooms in hospitals aren’t always the most relaxing place to be and people can be very inconsiderate! I’ve experienced a lot of very loud video calls and people taking their partners in when they aren’t allowed! But having a selection of pictures of Ivy and aswell as a snack makes it a bit more relaxing.
Ivy stayed in NICU for 44 days in total and I pumped throughout.
Ivy’s First Breastfeed
We only had the chance for her first breastfeed on day 35. Because of her Trisomy 21, Ivy has low muscle tone and was very floppy. But an amazing NICU nurse at Peterborough Hospital stayed with me and helped me to position her, and her first feed was really good!
Due to her heart condition, Ivy was always been very sleepy and so continues to have her Ng tube even now at 11 months old. However, she has had her heart surgery and we are hoping to get rid of it very soon. She now breastfeeds like a champion and I barely have to pump anymore!
From Pumping to Donating: 150 Litres of Milk
During Ivy’s time in NICU at the Rosie Hospital, I was approached by the lady who ran the Milk Bank. Initially I wasn’t keen to donate milk – but storage of my milk became an issue! I’ve now donated over 150 litres to the Milk Bank and I’m proud that my feeding journey with Ivy has taken me down this route.
Looking back, I cannot express quite how proud of I am of Ivy and our breastfeeding journey!
