Little Wren and I have had quite a journey so far, and I couldn’t be prouder of how far he has come!
A Challenging Start
Wren was born 9 weeks early at the Norfolk and Norwich University Hospital with Down syndrome and a large hole in his heart, as well as several smaller ones.
Weighing just 2lb, his lungs were immature so he needed respiratory support. He was on home oxygen until he was 8 months old, but he didn’t let it stop him from doing anything! Initially he fed through a line in his bellybutton and then tube fed my milk with a fortifier to help him gain weight.
Initially he fed through a line in his bellybutton and then tube fed my milk with a fortifier to help him gain weight.
Beginning Our Breastfeeding Journey
I started expressing milk the day Wren was born by C-section and soon became a milk donor for Hearts Milk Bank, as he was initially taking only small amounts!
When he was 35 weeks I began putting him to the breast as we had been offering him a dummy during his NGT feeds and he had started showing an interest in sucking.
We were at West Suffolk hospital in the NICU at the time and the nurses were very supportive of my desire to breastfeed. However, Wren had difficulty latching due to his tiny mouth and hypotonia. Added to that, I was not always able to stay with him due to accommodation limitations and living quite far away from the hospital. He was also very sleepy due to his medical problems so we were lucky if we got one opportunity per day to practice breastfeeding!
Wren had difficulty latching due to his tiny mouth and hypotonia
Setbacks and Struggles
Wren became poorly not long after this and ended up having sepsis screening, which meant going nil by mouth and having to build up his feeds again, so we were not allowed to breastfeed for a little while. We continued practising as soon as we could and began using a nipple shield, which did help but he still struggled to latch and despite feeding for up to half an hour sometimes, he was still just getting a belly full of air!
At around 38 weeks, Wren was still very sleepy and I made the difficult decision to begin offering a bottle as well as the breast. I knew that he would find it easier and I didn’t want to hold him back from orally taking milk, especially as I couldn’t be there around the clock and we were still only getting one chance per day, usually. We never knew when it might be either!
A Breakthrough with the Koala Position
The nurses on NICU helped us, but I was feeling pretty stuck. After a couple of weeks at Kings Lynn, breastfeeding counsellor Emily Lunny suggested we try the koala position, known to help babies with hypotonia to maintain their latch.
Breastfeeding counsellor Emily Lunny suggested we try the koala position, known to help babies with hypotonia to maintain their latch.
It was a game changer for us! Wren began taking a significant amount of milk during his attempts at breastfeeding and it felt like such an achievement for both of us.
Building Strength and Overcoming Obstacles
Over the coming weeks, he became stronger and we had further support from the infant feeding team who would rush over to NICU to help if they were free during our breast feeds. Wren would drop his oxygen saturations due to the effort of feeding, sometimes changing colour and needing extra oxygen, and we had to be very careful not to let him overdo it.
He was also on a fluid restricted diet due to his heart condition, so we were limited to two breastfeeds per day because of this, but by the time we left hospital at around 44 weeks he was mostly breastfeeding!
Life After NICU and Open-Heart Surgery
A month or so after leaving NICU, his feeding tube came out and we are still breastfeeding, with my partner and a few other helpers bottle feeding him my expressed milk. He transitioned to skin-to-skin feeds without the nipple shield a couple of months after coming home, which feels like another milestone for him.
Wren had open heart surgery at 7 months old and needed to be tube fed whilst he recovered but going back to breastfeeding felt so precious. It has been a real comfort to both of us and certainly helped him to regain his strength and feel safe again.
Thriving Against the Odds
Wren has had several respiratory infections including flu, but has not become very unwell, which I am sure is largely due to breastfeeding and the immunity it provides. He is weaning now but we will keep going with breastfeeding until it feels right to stop.
He is weaning now but we will keep going with breastfeeding until it feels right to stop.
Wren is a little superstar, and I can’t thank those who have supported us enough for helping us get to this point!
