Feeding Roslyn

Due to Rosie's cleft she was unable to create suction in her mouth which meant typical bottles were not suitable for her. This meant all the prep I did and the bottles we had already bought for her were useless. Seeing items I had got for her not be able to be used due to her condition was sad to go through as it made it really settle in how much we would need to adapt to meet her basic need of being fed:

Rosie had an NG tube put in from birth and has been feeding via that ever since. My husband and I had to complete competency training on how to feed her via the NG prior to her discharge. She does have specialty bottles but most of her feed goes down her NG. It's been difficult managing all the supplies - the different syringes sizes, the ph strips and not to mention the aching arm from gravity feeds. It's also difficult in that we realized it would be hard to have time for ourselves or use a babysitter at all within the first year as it's not common for them to be NG trained. We spoke with our community nurse who gave use the go ahead to train family member to feed her via NG and have been slowly doing so - this will allow us to have childcare once in a while to have time for ourselves for a date night or just a little break now and then:

One of the things about Rosie's condition which has caused me a lot of upset is being unable to experience breastfeeding with her. It was something I was looking forward to doing and I had heard many stories about the special bond that it can create. I had lots of things at home ready like comfy breastfeeding pillows, nipple cream and shields and was so prepared to give it a go. I was excited to have that bond with my baby. But due to Rosie's cleft and being unable to create a suction she was not able to breastfeed.

I wanted to try and give her the best start I could so I made the decision to try and feed her exclusively via pumped breastmilk. As my supply was getting started she was supplemented via formula but I was quickly producing enough for nearly full feeds. It felt good to feel like I was doing something for her while I was at home and away from her in the hospital but it was grueling to getup and pump every 2-3 hours constantly to establish a milk supply. I am proud that I did this for her but I made the choice to pout the pump down at one month in when she was due to come home as it was too much to mange on top of lengthy NG gravity feeds and even in the hospital I felt I couldn't just enjoy holding her as I was clock watching when the next pump would be. 

I was very upset considering switching fully to formula but fed is best and it was ultimately the best choice for me and for us as a family. I was surprised to be told by a nurse at GOSH that I had already beaten the national average of feeding breastmilk as that is just under a month. 

As mentioned earlier, Rosie does have specialty dr brown's bottles with the valve as this allows a flow of milk to come through the bottle without suction. 

It is not usual for cleft babies to have to have NG feed, and many can feed 100% orally with specialty bottles. However, in Rosie's situation her cleft in combination with her compromised airway managing the swallowing and breathing routine is very difficult and tiring for her. 

She started on ultra preemie teat with the DR brown bottles and enjoyed using them from the get go. She would only ever take about 5-10ml from the bottles before tiring out. It's more about giving her a continued oral feeding experience to make weaning off the NG easier later on. We also use dummy dips in milk and allow her to have that during feed so she associates the taste with her tummy being full.

See below for demonstration of the specialty bottle and Rosie have her first few attempt at taking it:

Once she was fully discharged home we had the opportunity to visit Broomfield cleft team feeding clinic at 7.5 weeks old. We met with a dietician, a SALT and specialty cleft nurse. They watched her have the bottle and were all very happy with how she managed it. They gave us the go ahead to move form ultra preemie teat to the preemie teat and advised us that we could decide when she was ready to try the level 1. 

It was so exciting and reassuring the know that she was doing well. 

She was also weighed and measured when here and she is tracking very well on the 75th centile for weight and the 98th centile for height. She has maintained this for the past 3 months of her life so she is putting on and maintain her weight very well. 

Photo of us at Broomfield hospital waiting to go in for a feeding clinic: