Bring on the thickener

Just as we were getting into somewhat of a routine with Kinley and her feedings, she decides that it is time for a change. (Kinley likes to keep mommy and daddy on their toes.) Yes, that is right, we are now thickening Kinley's milk to a nectar thick consistency. You might ask why since the swallow study did not show any problems. Well, I was a little misinformed. We did not actually have a swallow study like I thought. What we had was called an upper GI and basically they only looked for anatomical abnormalities that might cause a problem swallowing. They didn't actually look at her swallow. So, Kinley is going to have an actual swallow study done at a date to be determined and in the meantime we are supposed to thicken her milk. We will be using Simply Thick, a gel thickening agent that we just add to her fortified milk.

This was all determined today at Kinley's occupational therapy appointment at Children's Mercy. However, it was part of the plan from her last visit at the special care clinic, also at Children's Mercy. At that appointment back on September 2nd, it was decided to just increase Kinley's reflux meds and if there was still no change as far as how much Kinley was able to take at a bottle feeding, then thickening was the next step.

Speaking of Kinley's bottle feeds, I guess I have to backtrack a little since it has been a few days since my last post and Kinley's feeds have changed. (Again, Kinley is keeping us on our toes.) Kinley had slowly been eating less and less out of her bottles, so in turn her nighttime feed that we run with her pump through her NG tube was getting longer and longer. It got to the point where her night feed was over half of her daily intake and the tube feed lasted 12 hours. With that kind of night feed, Kinley was not as hungry during the day and got used to not eating very much during the day. Obviously this is not the direction we wanted to go. We took the advice of Kinley's occupational therapist from Infant-Toddler Services and tried leaving Kinley's NG tube in during the day. Kevin and I thought it was worth a try and started leaving in the tube to see how long it would take before Kinley would throw up her tube. Much to our surprise and delight Kinley has not thrown her tube up nearly as much as she had been when we first took her home. We are not sure what caused the change, but we will take it. Having the tube in during the day has allowed us to get Kinley back on track with her feedings. She is not eating much from her bottles, but we are able to give her what she doesn't eat orally from her bottle through her NG tube so that she gets used to the feeling of having a full belly every 3-4 hours during the day and only a short tube feed at night. I think having the NG tube down during the days is overall a good thing to get her back on track. The down side is that she just doesn't eat as well with the tube down. I think it just bothers her. Her bottle feeds have been anywhere from 20 mls to a very good bottle which is 80 mls. Kinley is supposed to take 105 mls at each feed, so she is not very close.

That said, back to the present. The OT at Children's Mercy observed Kinley eating a bottle today. She thought that Kinley was still working too hard to breathe and eat her bottle at the same time. She also noticed Kinley having difficulties latching on to the nipple of her bottle. Kinley ate 45 mls of her bottle before the OT tried adding the thickener. Once the thickener was added Kinley took another 15 mls, but by that time she was pretty tired and fussy, so we just stopped and fed her the rest through her NG tube. We were given a 2 week sample of the Simply Thick to see if it improves Kinley's oral intake or not.

Once we got home Kinley took 2 bottles in a row of 98 mls each!! Keep in mind that she still has her NG tube in, so that is really great. That is way more than she had been taking, so we just hope that trend continues and it will be worth the extra effort to thicken her bottles. It is a little more work because now I have to mix up two batches of breast milk for Kinley. One thickened for her bottles, and one not thickened that will go through her tube. Both the thickened and not thickened batches are fortified with Enfamil still. I am sure in a few days I can get this new routine down, especially if Kinley continues to like the thickened milk.

All of the tweaks that we have been making to Kinley's feedings sure seem to help with her weight gain, that is for sure. Today Kinley weighed 13 big lbs!! That is a gain of 37 grams per day since we were seen in the special care clinic on the 2nd. Laurie, Kinley's nurse practitioner at the special care clinic popped in to check on Kinley today and was very pleased with her weight gain. Kevin and I were pretty happy with the weight gain also, but we were pretty sure she was gaining weight. We have noticed that Kinley's cheeks have been filling out even more and her legs are looking a little chunky also. Lets just say she is looking very healthy. Yeah Kinley!