Riley's feeding has never been normal. When she was first born she was on IVs and getting all her nutrition that way. This was because she has surgery that say after she was born to close her spine. Afterwards when we attempted to feed her by mouth her oxygen level would drop. She could not figure out the the whole suck/swallow/breath combo. I was only able to tried to breast feed her twice, but I did pump and give her breast milk solely until 4 and 1/2 months then I had to supplement because I could not keep up with her.
The NICU put in a feeding tube through her mouth. Normally, they would do this through her nose, but she has small nasal passages and a deviated septum. She would pull the tube out constantly. She developed vomiting after her feeds. They tired lots of different things to stop it, reflux medications, motility medications, moving the tube so that it was in her upper intestines instead of her stomach. None of them worked then they started her on continuous feeds. Where she was slowly getting food in through her tube all day and night. They did a reflux test and found she has serve reflux..which we could have told them. They continued to try different medications.
At one point they thought that maybe she has a milk allergy and out her on soy milk. It didn't help so she went back to breast milk. Through all of this her weight gain was slow as to be expected.
As the reflux got worse the doctors suggest something call a nissen fundoplication. Basically the muscles at the top of Ri's stomach were not doing their job keeping her food in her stomach so she could digested it. So what the nissen does is pulls her stomach up and wraps it around the bottom of her esophagus. Thus created the sphincter need to keep her food in her stomach. The standard practice at the hospital where Riley was was to place a G-tube when doing the nissen. This a feeding tube that is placed in her belly allowing us to feed directing in her stomach.
Her reflux was thought to be playing a big part in her continued breathing issues where her oxygen levels were dropping. The thought was that if we could avoid the reflux with the nissen and the oxygen drops during feeding by placing the G-tube that she would be good to go home. We decided to go through with the procedure. After she healed it worked to stop the reflux but did not help with the oxygen levels. She ended needing a trach placed in order to get her oxygen to stay up. I will do a separate post about our decision for the trach, what it is like to have a child with a trach, and more.
So back to her feeding. Our next goal was to get her off the continuous feeds to what is called a bolus feed. This where she would get her feed all of one time. It was a bit of a slow process. We went from continuous to 4 hours on feeding and 4 hours off, then to feeding over 2 hours, then to feeding over an hour, and finally to over 1/2 hour every 4 hours. Riley started to gain weight consistently after that.
After we had her home for awhile we wanted to try to start her on some oral feeds, but we had get clearance from one of her doctors. First we tried her on milk on a spoon and that did not go well. When we tried some stage 1 foods she did better. The doctor had only give her one baby spoon full of food, in small bites. Then once a week we increased it by one baby spoon fully. It several months to get her eating a enough food that they could do a swallow test on her. In November 2010 we went in for the swallow test, what they do in put barium in her food and they feed her and as she is eating they are x-raying her to watch how she was swallowing to make sure she was not aspirating on her food. We were told that she was doing wonderfully and was not aspirating and was good to start oral feeds full time. We were so excited because it meant that she could have icing for her birthday.
You would never know now that she had some many issues with eating. She does not turn her nose up at any baby food that we give. If we don't feed her fast enough she yells at you. We are now working on getting her to take all of her fees oral and not using the G-tube at all. She is learning to use a sippy cup and is doing wonderful. Though if she sees the food before she finishes the cup you have a hard time getting her to take it again until the food is gone.
Recently we have started her on solid foods. She is getting good at picking up the Gerber puffs with her whole hand. She has had some scrabbled eggs. And I have a few other foods that I am going to try her on in the next couple of weeks (raspberries, peas, avocado). She had some cheese today and seems to like it. We might give a grilled cheese sandwich soon too.
If any one has ideas for fingers food or handmade baby food let me know. I just started today making some of her food and I am looking for ideas.
