I’m hoping another parent out there can help us out with this. Here is a brief background. Riley has had reflux issues since around 5-6 weeks after birth. Some arching, a little pain, and occasional vomiting. She would have a week where she would vomit once a day and then go a month or two without vomiting. In the meantime, she had all sorts of other feeding issues that resulted in a g-tube being placed in January. Since she has gotten the g-tube, she is vomiting after every formula feeding, not at all with solids though. She is only getting 2 bolus feeds during the day and these are the ones that she vomits with. She is on continuous feeds at night and does fine. Right now, she is getting 3 oz twice a day, at a rate of 68-70 mL/hour with a pump. I have tried slowing the rate down and decreasing the volume but she still vomits. It is usually fairly quickly after a feeding is finished or occasionally during a feeding. Usually her tube feedings are during nap times so she is sleeping. If I can vent her in time, we can avoid losing everything, but she will still retch for a few minutes. She did not have a fundoplication done because her reflux wasn’t bad before the g-tube. Her GI doctor isn’t too concerned since she is still gaining weight really well. She was almost 11 months when she had the surgery and weighed exactly 11 lbs, now 2 1/2 months later, she is weighing over 15 lbs. Anyone have any suggestions. I am wondering if the placement of the tube is the problem. We are going back to the doctor in a few weeks and I am going to bring this up. She is on reflux meds. We are just having vomiting issues, no other major signs of reflux. Any suggestions are much appreciated.
Hannah
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Hannah,
Your situation sounds almost identical to ours. Kendall got her feeding tube at about 9 months and we also had issues moderating her feeding amounts. In fact, she is coming up on 3 years old and we are still trying to find the balance.
What we did was slow down the feeds and eliminate bolus feeds until we could figure out the rate that worked the best. We found that keeping the pump on at a slower rate was better for her (and us) than to try to get her to take a bolus feeding. Kendall would vomit all the time and we just decided to continue her feeds through the day (giving her breaks at certain times) to make sure she got her nutrition. The fact that Riley is gaining so much weight is really good. We were able to plump Kendall up with the continuous feeds, avoiding the bolus feeds. One other option might be to dilute the formula a little more so that it is not as concentrated (still trying to keep her calorie intake the same). We found that to work better at times since water is easier on the stomach. Venting is good too as you have found out.
The one thing that you will want to be aware of down stream is that the night feeds may be difficult to continue at some point if Riley gets active in her sleep. We had to take Kendall off the night feeds because she ended up wrapping herself in the cord, or the pump line got disconnected from her line. Many nights Kendall ended up in a soaking bed or with her line wrapped around her neck. We had to stop her night feeds and she ended up losing 5 pounds in 3 months. We have yet to get that weight back on her and that was over a year ago.
Regardless, we’re still trying to find that balance of what she can take without vomiting. We’re getting there, but it is slow moving. She only vomits maybe once a week now.
I hope this helps…
Dear Hannah,
Amelia had her g-tube and nissen done when she was a year old. When they did the surgery, they told us her stomach was extremely small. The doctor was shocked at how small it was but it made so much sense to us because during my ultrasounds her stomach was what sent up a red flag that something was wrong. They told us to start her feeds on a very slow rate. I think it was like 20 ml over an hour and slowly increase it so her stomach would stretch. We are now up to three feeds at 100ml over an hour and ten hours over night at 30ml an hour. This is has been over a year that it took us to get up to this rate. The surgeon said they never would have known her stomach was so small if they did not do the nissen. She also had severe reflux and was on three medications for it. She vomitted constantly after every feed. She is now off all meds for reflux. Her weight has increased but very slowly. She is about 16 pounds now. She eats very little solids but I think once her cleft is repaired in June she will start to eat more by mouth. We also switched formulas several times. Amelia is now on a mix of carnation and duocal. I am not sure if any of this information helped or I answered any of your questions but I hope you find some answers soon! Chrissy
I think you both have very valid points that apply to Riley. I think she has a very small stomach. Before getting her g-tube at 10 months, she never took more than a 3 oz bottle. I think she also has slow gastric emptying, which we are helping to speed up a bit with probiotic drops, but it is still slow. We started at a slow rate, but maybe I increased it to fast. At night, she is at 30 mL/hour and is fine with it. During the day, she gets 90 mL at a rate of 68 mL per hour. She is on elecare vanilla mixed at 30 cal/oz, which may be too high of a concentration for her. Riley was doing okay with solids after she got her tube, and then 3 weeks ago she had surgery to correct her strabismus and was intubated. Since then, she has developed oral aversion and is rejecting most solids. I have been trying a blenderized diet with her instead and she handles it well. I am thinking about going to an all blenderized diet during the day to eliminate the vomiting and just her elecare at night. So many things to try and look into. Thanks so much for your input.