My experience having a tubie

Darcy is now 16 months old and has been tube fed since birth. We always knew this would be the case due to her bilateral cleft lip and palate alongside her heart condition so it wasn’t a shock when she was born. It was a bit daunting at first when the nurses started teaching us how to feed her but I found it more uncomfortable because I had someone watching me which made me flustered and fumble quite a bit. Having to be taught how to feed your own baby is not a nice feeling and it made me feel less like her mummy and more like a carer who was new to the job. It didn’t take long to get the hang of it though and as soon as the nurses knew we could feed her competently, they left us to it and I became a lot more comfortable.
At 16 days old we took Darcy home and again it was quite daunting doing her feeds for the first time because we were so used to having nurses there to help if we needed. Now we were on our own. As with anything new, it just took some getting used to and it became a standard routine which we didn’t think twice about anymore. Unfortunately Darcy has had a difficult time with her tube because it’s caused some bleeding internally and discomfort, sometimes to the point where she would cry constantly unless we held her both through the night and day which really took its toll on us, especially as we have a toddler too. She has had to endure broken, bleeding skin on her face due to the tape aggravating it and it made going out with her very difficult when she was a newborn because I wasn’t comfortable feeding her in public for a while so it meant we stayed in a lot and she didn’t get to socialize at all. I did overcome this however and now I’m happy to feed her wherever I am so I guess this was just another case of getting used to a new way of doing things.

My husband and I can’t say we’ve had a good experience with Darcy being tube fed being it’s utterly heart breaking having to watch your baby crying in pain knowing no one will help her. We have argued with doctors about something needing to be done as it’s not fair to leave her in pain all the time and Darcy should have been referred for a peg after 6 months of having her tube yet she wasn’t. We know that having a peg fitted would benefit her greatly and take away a lot of this pain but when we finally began the process to get it done, we have been told the waiting list is 12-18 months long so it’s even more agonising knowing there’s something that could help her but not being able to give it to her. We have fought with doctors to get her on the surgeons list and we continue to phone constantly and push for a date to get her peg fitted so hopefully Darcy will be more comfortable soon and we will be able to see her beautiful face every day.