Special Care Clinic

Today Kinley finally had her special care clinic appointment. I have been looking forward to this appointment so that we could finally get some help with Kinley's feedings. I was looking forward to the appointment so much that...drum roll please...we were on time and went on the correct day!!

Kinley's appointment was at 10:15 AM and we got right in. First off the nurses had to get some stats on Kinley. They checked her length and head circumference, no big changes there. They also tried to get Kinley's blood pressure, but Kinley was moving too much so they were not able to get that. They checked Kinley's oxygen saturation which I have been wondering about and it was 97-98%, so that was great. Lastly, they got Kinley's weight. Kinley weighed 11 lbs and 13.8 oz. That figures out to an 18 gram per day weight gain since Kinley was discharged. I didn't think that was so bad considering all the feeding issues we have been having and trying to deal with on our own, but the nurse practitioner really wanted that to be closer to 25 to 30 grams per day. Overall though, the nurse practitioner thought that Kinley looked great and we even heard a couple of comments that we didn't belong in the special care clinic. That was nice to hear.

After Kinley's initial physical, we moved to our exam room and guess who came by to visit, Dr. W! It was so nice to see Dr. W. Kevin and I have enjoyed being at home with Kinley, but we do miss the great people that took such good care of Kinley for the 83 days that she lived at Children's Mercy. Thank you so much!!

Once we started going over Kinley's history and the problems that we have been having with her feedings Laura, the nurse practitioner, seemed to really listen to our concerns. It was such a relief to finally get some one's one-on-one attention devoted to Kinley and her feeding issues. (Kinley's pediatrician listened to our concerns, but he stated that her issues needed to be addressed by Children's Mercy instead of him.) We explained how Kinley would start off great taking about 30 - 4o mls by bottle, but then we would have to stop and burp her. After getting a couple of good burps out of Kinley we would try and give her the bottle again and she just screams and puts up a fight against the bottle. Each time this happens we try to switch feeding positions, try swaddling Kinley, check to see if she has a dirty diaper, try switching feeders and try to cheer Kinley up by playing her noisy toys for her and singing to her. This process lasts for about 30 minutes to an hour each feed. By the time we finish a feed Kinley, Kevin and I are all tired. To make matters worse, we have to start preparing for the next feed in just a couple of hours. Kinley has been taking anywhere between 60 to 120 mls at each feed. The goal has been 100 mls with each bottle, and she has been averaging close to that. On a side note, Kinley has not been throwing up much after we started taking out her NG tube during the days. She even took 2 bottles of 120 mls yesterday with no throw up!!

Laura decided to consult Nancy, the OT that worked with Kinley while she was an inpatient, the dietitian and radiology to address Kinley's feeding issues.

Nancy witnessed me feeding Kinley her 11:00 AM bottle. Kinley started off great as usual taking 45 mls. Once we had to stop to burp her, in typical Kinley style, she started to scream and fight the bottle. Nancy also observed that Kinley was breathing pretty hard after her initial portion of the bottle and sounded a little congested. Nancy had a couple of theories. First of all, since Kinley arches her back and cries like she is in pain Nancy is thinking reflux. Secondly, since Kinley was breathing hard and sounded congested she though it might be that she is having difficulty swallowing thin (regular) liquids. Finally, Nancy is worried that by forcing Kinley to take the bottle back she will develop an aversion to bottles and then we would be in big trouble. We tried thickening the second portion of Kinley's bottle and she ended up taking the entire bottle in about half an hour. We are not sure if it was the thickener that helped or the fact that we gave Kinley her bottle a little late and she was extra hungry.

The dietitian stated that because Kinley has grown, and because she should be gaining weight faster than she is right now, we should increase her bottles to 105 mls. Great...just as we were getting close to 100 mls now we have to try for 105. I asked about possibly fortifying Kinley's milk more (right now we fortify breast milk with Enfamil to make 24 kcal per oz) and she said that we do have room to go up to 26 kcal per oz, but then you have to worry about proper hydration. Kinley needs to take in enough fluids to maintain good hydration.

Finally, radiology was consulted for a chest x-ray. Difficulty feeding is a possible sign of reherniation and Laura wanted to rule out that possibility. Also, if Kinley was having swallowing problems (food going down the wrong pipe) it might show up on an x-ray. According to Laura, the x-ray looked even better than when Kinley was an inpatient. No concerns about a reherniation and both lungs looked well inflated. I am guessing the fact that Kinley screamed during her x-ray helped a little. While she was an inpatient all the x-ray tech had to do was slide the film under Kinley's bed. Kinley hardly knew what was happening. As an outpatient she had to go and sit in front of the x-ray machine with someone holding her arms up in the air. She was not a fan to say the least.

OK, so what have we learned at this visit and what is the plan from here on out? Well, we learned in the hospital that Kinley does not like a lot of changes all at once, so we are going to try one thing at a time. First of all we are going to increase the meds that help with Kinley's reflux. Both her Prilosec and erythromycin doses were increased. We are also going to put a time limit on the bottle feedings. Kevin and I are now going to stop feeding Kinley after 30 minutes no matter how much she has taken by bottle. We are still going to offer her a bottle every 3 to 4 hours during the day depending on if Kinley acts hungry or not. We will increase her nighttime feeds through the NG tube and give whatever Kinley does not take during the day through the tube at night. For instance, Kinley is now supposed to take 840 mls per day. If she eats 440 mls during the day that leaves 400 mls for the tube feed. We are supposed to run the tube feed at a rate of 50 mls per hour, so Kinley would need a tube feed for 8 hours that night. We will increase or decrease the time of the tube feeds based on what Kinley eats during the day.

Kinley has an appointment with the occupational therapist at Children's Mercy outpatient clinic in a couple of weeks and we will re-evaluate at that time. Kinley will also have a swallow study done at that appointment to make sure she is not having any problems that can be fixed by thickening her milk.

Kevin and I thought this would be a quick in,weight check and out appointment, but that was not the case at all. Our 10:15 AM appointment lasted until close to 2:00 PM. I was not prepared for that. Luckily I had enough diapers, but I only packed one bottle for Kinley. I think she was getting pretty hungry by the time our appointment was over. Oh well, live and learn I guess. Poor Kinley.

Even though our appointment lasted much longer than we expected, we couldn't leave without stopping by the NICU to say "hi". We saw Katie, Kinley's first primary nurse, and Dr. M who took care of Kinley while she had her surgery on ECMO. It was so nice to be able to show the people who took such good care of Kinley when she was so sick how well she is doing now. It is all thanks to them! The best part about visiting the NICU was that when we left we got to take Kinley home with us.

We also ran into Brian and Cassi Reed, Elli's mommy and daddy, when we were up in the NICU. Elli is another tough CDH baby who had her repair surgery on ECMO just like Kinley. Elli is now off ECMO and on her way to recovery. Please keep them in your thoughts and prayers. If you want to check up on Elli she has a blog also. The address is babygirlreed2be.blogspot.com.

Well, just like our appointment this morning, this post is a lot longer than I thought it would be.