Very tough because I was coping iwth bad nights before diagnosis onthe assumption that as she began to eat more solids and eat well regularly, the nights wd fall into place. Now she is underweight, uninterested in food and receiving medication which makes her colicky, plus they say that some aspects of cancer can suppress appetite!
DS has a ng tube when he was 13 months, so not as young as yours. He kept trying to rip it off and succeeded a few times. They get used to it eventually, although had to put gloves on him with tape around them. Sounds cruel, but not as cruel as having to re insert the ng tube.
Hi Titfer, firstly I wish you and your dd strength to get through this difficult time.
How are the ng feeds given? Are they given via bolus (sp) (a lot in one go) or a small amount continously? I found bolus feeds would often be vomitted up as it is a lot of milk going into the stomach in one go, rather than little and often.
Have you been given a high calorie milk so your dd can get as many calories as possible? If not, speak to your Consultant and ask them to speak to a Nutritionist about it.
I would carry on with the bf'ing. The waking in the night is probably more for comfort than food. Once she becomes more secure the bf's will probably become fewer over time.
Also there are different grades of ng tube, some are softer than others. It may be worth finding out about that too.
Good luck and I hope you post again telling us how well your dd is doing
DD is still not gaining weight, we are considering continuous night feeds via pump into NG tube, need to hear from Consultant and see what they say. She is looking fine if a bit pale, and still pretty cheery. Tube feeds are obviously uncomfortable for her tho which is upsetting. I think little and often would be best too, but it's hard work to fit them all in - she has stopped taking a bottle which is a a bit of a nightmare - it's tube or nothing.
Trying to stay positive and focused on op date. REally hope that removing tumour helps solve some of these problems. I'm getting fearful that she's going to have loads of feeding issues later on ... but must not dwell on that.
Thanks for support, it's nice to come to MN and feel a bit of love!!
My baby had an NG tube for a few days as a newborn so our experience is not really relevant but in case it helps - it was obvious that it irritated her and she kept trying to pull it out (often succeeding). She also vomited after every bolus feed, so I would guess that is quite normal. It did allow her to gain weight and more stable blood sugars so it worked.
Quick update in case anyone is looking for info about NG feeds: we've been in hosp and they're feeding her via pump and we're using pepti junior which is a pre-digested milk ie easier for her to break down.
She is coping really well with this and has no vomiting episodes since we started.
I'm here till monday and then will be home to continue with pump. Hope we will have a happier time in the run up to surgery!