I have been trying to get this posted since Monday and I can't believe it has taken me almost a week! I have been doing my best to keep the blog updated, but going back to work full-time has really been hard on me, especially the weeks when I work 6 days out of 7, like this one.
On Monday Kinley had another appointment at Children's Mercy. She was seen in the Special Care Clinic and by the occupational therapist. I was pretty disappointed that I had to miss it because of work. We try to get all of Kinley's appointments for times that Kevin and I can both attend, but it doesn't always work out that way.
This is what I was told about her appointments.
During her assessment at the Special Care Clinic, Kinley was weighed and we are happy to report that she has not stopped gaining weight. She was up to 13 pounds and 14 ounces! This continues her trend of 30 grams per day weight gain, so that was great news. The nurse practitioner also mentioned that Kinley is doing really well with her height. She is around the 50% percentile for both height and weight. Kinley also sated (don't really know if that is a word, but everyone always talks like it is) 100% when they measured her oxygen saturation. Kinley's Prilosec dose was increased because of her weight gain, but other than that, no changes to note.
The occupational therapist observed Kevin giving Kinley a bottle. Kinley has been eating very poorly for Kevin and I at home, but she always seems to do better at the clinic with an audience. Show off! Kinley ate a little better at the clinic, but still not great. She ate 55 mls, which is not even 2 oz, or half of what she should be getting at each feed. The occupational therapist was actually pleased with how Kinley ate. I guess Kevin and I just have higher standards for Kinley since we know what she is capable of eating. We know that she can eat 100 mls at a feeding because she has done it before, but lately she has been eating less than 60 mls (2 oz) at each feed. There have even been a few feeds where she will refuse the bottle altogether and has to get the entire feed (120 mls or 4 oz) through her NG tube. I think another reason Kevin and I would like to see her eating more is because we are the ones who have to put her NG tube down whenever she throws up or pulls it out. We really can't wait until she can be NG tube free, but we have a long ways to go before we even start to think about that. I guess it is not as bad as I make it sound though. The occupational therapist was happy with the feed because Kinley is a lot less fussy at the feedings. She screams a lot less and I think she is not as stressed out at her feedings anymore. I think the fact that Kevin and I are not forcing her to eat more and the fact that her milk is thickened is helping a little. I just wish that if feeding is not as unpleasant as it was she would eat more. Oh well, baby steps I guess. The occupational therapist did suggested that we try a nipple with a higher flow on Kinley's bottles so that she gets the milk a little quicker. Our main problem lately has been that Kinley will lose interest in her bottle or fall asleep before she can eat enough. We will see if the higher flow helps or not. (FYI-since I am writing this post almost a week later I can tell you that it doesn't seem to have made a difference. Bummer. Maybe they will have some more suggestions next time.) For the time being Kevin and I will continue to offer Kinley a bottle 5 times a day and give the rest of her food through her NG.
Kevin was able to make Kinley's next appointment on a day where we will both be off and can attend, so I was happy to hear that. I felt so bad, not only did I miss her appointment, but Kevin had to get Kinley ready and down to Children's Mercy all by himself. It is not easy taking care of Kinley by yourself, but Kevin is a great dad and if he had any trouble at all he didn't let me know about it.
Tuesday, September 30, 2008
Thursday, September 25, 2008
Happy 4 Months!!
Today Kinley is 4 months old. She has come such a long way and we are so proud of her! Yesterday Kinley was in a really good mood and that worked out great for Kevin and I because we were both off. Kinley slept a lot during the day, but when she was not sleeping we were able to have some fun. Kinley enjoyed tummy time for a while, and yes, Kobi was right by Kinley's side. Kinley is also at the stage now where she wants to put everything in her mouth, mainly her hands. I decided that it would be fun to tease Kinley and act like I was going to put her hands in my mouth. Kinley's reaction was priceless! She actually tried to laugh. She doesn't quite have it down yet, but it was so cute to watch her. We went back and forth for a while and Kevin and I were cracking up. If only we had it on video. My explanation doesn't come close to describing how cute and funny it was. Hopefully next time.
Sunday, September 21, 2008
Found some more pictures
When I was looking on my camera for the pictures of Kinley napping I came across a couple from a few days ago that I had forgot about.
Everyone together, well minus me because someone had to take the picture.
Kinley is quite the Guitar Hero player. She must have worn herself out rockin so hard.
Kinley is going through a stage where all she wants is to be held upright so she can look around. It is so fun to see her get so excited about the smallest things.
Everyone together, well minus me because someone had to take the picture.
Kinley is quite the Guitar Hero player. She must have worn herself out rockin so hard.
Kinley is going through a stage where all she wants is to be held upright so she can look around. It is so fun to see her get so excited about the smallest things.
Kinley's first outing
We have taken Kinley on a few errands here and there, multiple times to doctor visits, and a couple of times we have brought her over to a friend's house, but yesterday was the first time we took Kinley for a real outing. We went downtown to the Plaza for the art festival. We had a good time and the weather was so nice. It was great to get out of the house and do something fun as a family. Since I had to work during the days this weekend, we went to the art festival in the evening. This meant that while we were out we had to start Kinley's tube feeding. This is not really a big deal. Kinley's tube feeding pump has a little backpack for traveling, so all that people really see is Kinley with her NG tube in, and a little white tube going from her NG to the little backpack. It was probably just my imagination, but I felt like so many people were staring at us. A couple of ladies even walked by, looked at Kinley, and then looked at each other and said "oh, that is so sad". I wanted to turn around and tell them that this was not sad at all!! Kinley is finally out of the hospital and we are getting to take her out and do something that "normal" people would be able to do with their kids. My sister said that people were probably staring because Kinley is so cute. I think I will just go with that. The only sad part to the whole outing was that we forgot the camera, so there are no pics to post. Sorry.
Soooo close
Kinley is starting to get the hang of rolling over on her own. She gets so close and then her arms kind of get in the way and she can't quite roll all the way over on to her stomach. I don't think it bothers her at all though, she seems to like laying on her side lately. Here are some pics I snapped of Kinley while she was napping in her crib.
Thursday, September 18, 2008
Surgery follow-up and surprise swallow study
This morning Kinley had her scheduled follow-up visit with the surgeon who did her repair surgery. He looked Kinley over very quickly and could tell that she was doing well. He said that she was healing nicely and he would like to see her again in another 6 months. It was a pretty painless and quick appointment once we got in. We did have to wait for about an hour because the surgeon got called into the operating room for an emergency.
While we were waiting we received a call from the radiology department at Children's Mercy. There was a cancellation today and they were wondering if we were free to do Kinley's swallow study at 1:00 PM. That worked out great since we were already in the building. The surgery appointment was done around 11:15 AM, so Kevin and I went to get some lunch, stopped by the NICU to see some friends and we even got to see Kinley's nurse Katie even though she was not working in the NICU for the day. Then around 12:50 PM we headed off to radiology and were right on time for our 1:00 PM appointment!
The swallow study was very interesting. There were several people involved in the study, a speech pathologist, a couple of occupational therapists and a radiologist. Kinley sat in a chair while one of the occupational therapists fed her barium liquid and we were able to see her swallow on the monitor live. The OT started out by feeding Kinley barium that was nectar thick and room temperature. The speech pathologist said that Kinley was "penetrating" with the liquid. Penetrating means that when Kinley swallowed most of the liquid was going into her esophagus (good), but a little was spilling over into her trachea (bad since it leads to the lungs). The good news is that Kinley was able to recover and redirect the liquid that started going to the trachea back to the esophagus before any got to the lungs. When liquid swallowed does go into the lungs that is called aspiration and it is not good because it makes oxygenation harder and makes a person more prone to lung infections, like pneumonia. Since Kinley does not have as much lung tissue as a normal person we obviously want to avoid pneumonia, especially now with cold and flu season fast approaching. We want to do everything possible to keep her healthy!
After the nectar thick-room temperature barium liquid, the OT tried feeding Kinely some nectar thick-cold barium liquid. Kinely was able to swallow that liquid without any problems. The speech pathologist explained that Kinley seems to have a slight lag in her swallow which is causing the problems. The cold liquid helps because it is another sensation in her mouth that will trigger the swallow. She explained that if we keep feeding her room temp liquids Kinley doesn't pay much attention to it, but the cold liquid kind of shocks her and stimulates a swallow a little sooner.
Even though Kinley was penetrating on the nectar thick-room temperature liquid, the speech pathologist wanted to try a couple of swallows with thin (regular consistency) cold barium liquid. Kinley started to penetrate with this liquid pretty quickly, so they stopped the study.
The speech pathologist and the occupational therapists took Kevin, Kinley and I to a conference room to discuss the results of the study. Basically, we will be thickening Kinley's milk to a nectar thick consistency at least through the winter months and probably into spring. We are also supposed to try and give Kinley her bottle cold, right out of the fridge. We were told to make sure Kinley gets plenty of tummy time because that helps to strengthen muscles that help with swallowing. The speech pathologist and the OTs think Kinley will outgrow this little problem fairly soon, as long as we help her by encouraging tummy time. We also need to keep Kinley's reflux under control. What happens with reflux is that the acidic contents in the stomach come out of the stomach and up the esophagus and that acid can damage some of the nerves that help her swallow. As long as we keep Kinley's reflux meds going we should be OK and we were told the nerve damage will heal over time.
We were also told that while Kinley did not aspirate during the study, she most likely has been aspirating a little. The speech pathologist said that since Kinley was penetrating on cold-thin liquids, she most likely was aspirating some of the time on the room temp, or slightly warm thin milk that we had been feeding Kinley, especially when we were feeding her and she was getting tired. Luckily it doesn't seem to have bothered her lung function much.
The good news from the study is that Kinley will now be on thickened liquids which should make swallowing easier for her and prevent penetration and aspiration. I feel much better now that the study is done and we know for sure how to help Kinley. I had asked about a swallow study a few times when Kinley was in the NICU and was told that she didn't need one because her heart rate never got elevated when feeding and her oxygen saturation stayed the same. I can understand not wanting to expose Kinley to all that radiation if it wasn't necessary, still, in the back of my mind I thought maybe a swallowing problem was a possibility. From this incident I have learned that maybe I have a few motherly instincts (who knew?!?) and I should be a little more aggressive next time.
While we were waiting we received a call from the radiology department at Children's Mercy. There was a cancellation today and they were wondering if we were free to do Kinley's swallow study at 1:00 PM. That worked out great since we were already in the building. The surgery appointment was done around 11:15 AM, so Kevin and I went to get some lunch, stopped by the NICU to see some friends and we even got to see Kinley's nurse Katie even though she was not working in the NICU for the day. Then around 12:50 PM we headed off to radiology and were right on time for our 1:00 PM appointment!
The swallow study was very interesting. There were several people involved in the study, a speech pathologist, a couple of occupational therapists and a radiologist. Kinley sat in a chair while one of the occupational therapists fed her barium liquid and we were able to see her swallow on the monitor live. The OT started out by feeding Kinley barium that was nectar thick and room temperature. The speech pathologist said that Kinley was "penetrating" with the liquid. Penetrating means that when Kinley swallowed most of the liquid was going into her esophagus (good), but a little was spilling over into her trachea (bad since it leads to the lungs). The good news is that Kinley was able to recover and redirect the liquid that started going to the trachea back to the esophagus before any got to the lungs. When liquid swallowed does go into the lungs that is called aspiration and it is not good because it makes oxygenation harder and makes a person more prone to lung infections, like pneumonia. Since Kinley does not have as much lung tissue as a normal person we obviously want to avoid pneumonia, especially now with cold and flu season fast approaching. We want to do everything possible to keep her healthy!
After the nectar thick-room temperature barium liquid, the OT tried feeding Kinely some nectar thick-cold barium liquid. Kinely was able to swallow that liquid without any problems. The speech pathologist explained that Kinley seems to have a slight lag in her swallow which is causing the problems. The cold liquid helps because it is another sensation in her mouth that will trigger the swallow. She explained that if we keep feeding her room temp liquids Kinley doesn't pay much attention to it, but the cold liquid kind of shocks her and stimulates a swallow a little sooner.
Even though Kinley was penetrating on the nectar thick-room temperature liquid, the speech pathologist wanted to try a couple of swallows with thin (regular consistency) cold barium liquid. Kinley started to penetrate with this liquid pretty quickly, so they stopped the study.
The speech pathologist and the occupational therapists took Kevin, Kinley and I to a conference room to discuss the results of the study. Basically, we will be thickening Kinley's milk to a nectar thick consistency at least through the winter months and probably into spring. We are also supposed to try and give Kinley her bottle cold, right out of the fridge. We were told to make sure Kinley gets plenty of tummy time because that helps to strengthen muscles that help with swallowing. The speech pathologist and the OTs think Kinley will outgrow this little problem fairly soon, as long as we help her by encouraging tummy time. We also need to keep Kinley's reflux under control. What happens with reflux is that the acidic contents in the stomach come out of the stomach and up the esophagus and that acid can damage some of the nerves that help her swallow. As long as we keep Kinley's reflux meds going we should be OK and we were told the nerve damage will heal over time.
We were also told that while Kinley did not aspirate during the study, she most likely has been aspirating a little. The speech pathologist said that since Kinley was penetrating on cold-thin liquids, she most likely was aspirating some of the time on the room temp, or slightly warm thin milk that we had been feeding Kinley, especially when we were feeding her and she was getting tired. Luckily it doesn't seem to have bothered her lung function much.
The good news from the study is that Kinley will now be on thickened liquids which should make swallowing easier for her and prevent penetration and aspiration. I feel much better now that the study is done and we know for sure how to help Kinley. I had asked about a swallow study a few times when Kinley was in the NICU and was told that she didn't need one because her heart rate never got elevated when feeding and her oxygen saturation stayed the same. I can understand not wanting to expose Kinley to all that radiation if it wasn't necessary, still, in the back of my mind I thought maybe a swallowing problem was a possibility. From this incident I have learned that maybe I have a few motherly instincts (who knew?!?) and I should be a little more aggressive next time.
Wednesday, September 17, 2008
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!
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!
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