Literally. Today Kinley proved that she can roll from her stomach to her back. Up until this point she was only able to roll from her back to her stomach and then she would get "stuck" on her stomach. It is so nice that she can now get off her stomach if she wants to, but it looks like we will have to do some baby proofing of our house now that she is somewhat mobile.
The other big news is that Kinley has been without her NG for the past 6 days!!! Her goal volume is around 840mls, but 700mls is the minimum required amount to maintain hydration. As long as Kinley hits the magic 700mls mark during the day we let her go without the NG tube feed at night. We have been taking it day by day, but like I said, it has been 6 days since we have had to do a tube feed. Kevin and I are really excited about the progress Kinley has made over the last week. (And I am sure Kinley enjoys a break from getting the NG tube replaced each night.) She went from eating 500mls a couple of weeks ago to at least 700mls a day lately. Yesterday she ate 750mls and today she had a record breaking bottle...180mls (6 oz)! I don't want to get ahead of myself and say the days of NG feeds are over, but for now we just enjoy each day that is NG free.
Kinley continues to play with spoon feeds and so far we have learned that she likes sweet potatoes the best. She does a lot better eating if you let her feed herself rather than trying to feed her. Apparently stubbornness and independence are characteristics of a CDH baby. Either that or she just takes after me. Either way, she has really had a productive week and Kevin and I could not be happier for her.
Thursday, December 11, 2008
Sunday, December 7, 2008
Wednesday, December 3rd - 6 Month Check-up
Today Kinley had her 6 month check-up with Dr. S. Yes, we are a little behind getting this check-up, but we wanted to wait a few days so that it worked out with my schedule so that I could attend along with Kinley and Kevin.
Dr. S had only good things to say about Kinley's progress. She weighed 15 lbs 8 oz, so not a huge gain since we were in for her RSV shot, but she is staying on her growth curve, so that was good. Kinley is at the 50% for weight, 95% for length and 70% for head circumference. She is maintaining her curve nicely. Dr. S said that we should try and convince the Special Care Clinic at Children's Mercy to let us be a little more aggressive in treating Kinley like a more "normal" baby. He said as far as he is concerned we can start feeding Kinley any baby food that we choose, but to stay away from anything with honey, nuts or shellfish. That is what he tells everyone at first. He also asked if we had considered a trial off the NG tube. We told him that we did actually try it a few days ago and that it didn't really go all that well. He said not to get too concerned and he thought it would be OK to try again in the near future. We will see what Kinley does with her feedings. Overall he said Kinley is doing really well!!
Kinley did need to get 3 shots and an oral vaccine at the appointment. She took it all like a champ and was back to her old self by the time we got home. I did have to give her one dose of Tylenol once we got home, but other than that, Kinley did great. One of the shots that she got was the flu shot since she is now 6 months old. I feel much better now that Kinley has had her flu shot. We will try to get her booster flu shot in a month, but the nurse warned us that they may be out of the flu shot by then. Dr. S said he would try and set a dose aside for Kinley since she is probably the kid that needs the booster most out of all the kids he sees, but that even if she does not get the booster shot at least one shot is better than nothing at this point.
As long as everything continues to go well Kinley will not need another appointment until her 9 month follow-up. She will still go each month to get her RSV shot and hopefully her booster flu shot, but I don't really count those as actual appointments. Kinley has a Special Care Clinic appointment this Friday and I can only hope they will be as positive as Dr. S is with Kinley's progress.
Dr. S had only good things to say about Kinley's progress. She weighed 15 lbs 8 oz, so not a huge gain since we were in for her RSV shot, but she is staying on her growth curve, so that was good. Kinley is at the 50% for weight, 95% for length and 70% for head circumference. She is maintaining her curve nicely. Dr. S said that we should try and convince the Special Care Clinic at Children's Mercy to let us be a little more aggressive in treating Kinley like a more "normal" baby. He said as far as he is concerned we can start feeding Kinley any baby food that we choose, but to stay away from anything with honey, nuts or shellfish. That is what he tells everyone at first. He also asked if we had considered a trial off the NG tube. We told him that we did actually try it a few days ago and that it didn't really go all that well. He said not to get too concerned and he thought it would be OK to try again in the near future. We will see what Kinley does with her feedings. Overall he said Kinley is doing really well!!
Kinley did need to get 3 shots and an oral vaccine at the appointment. She took it all like a champ and was back to her old self by the time we got home. I did have to give her one dose of Tylenol once we got home, but other than that, Kinley did great. One of the shots that she got was the flu shot since she is now 6 months old. I feel much better now that Kinley has had her flu shot. We will try to get her booster flu shot in a month, but the nurse warned us that they may be out of the flu shot by then. Dr. S said he would try and set a dose aside for Kinley since she is probably the kid that needs the booster most out of all the kids he sees, but that even if she does not get the booster shot at least one shot is better than nothing at this point.
As long as everything continues to go well Kinley will not need another appointment until her 9 month follow-up. She will still go each month to get her RSV shot and hopefully her booster flu shot, but I don't really count those as actual appointments. Kinley has a Special Care Clinic appointment this Friday and I can only hope they will be as positive as Dr. S is with Kinley's progress.
Green Beans
Kinley had her first taste of "real" food a couple days ago. Up to this point she has had some rice cereal and applesauce, but her first "real" food was green beans. Kinley's OT recommended that we just let Kinley play while spoon feeding at first. We also try to let her feed herself with a little direction and encouragement. Spoon feeding is still just a developmental step for Kinley and we don't count anything that she eats towards her daily intake. Here are some pics of Kinley having fun eating her green beans.
Two fistin' it
What a cutie!
Is that a smile I see?
Two fistin' it
Wednesday, November 26, 2008
What A Week!
Kinley (and her dad and I) had a very busy week last week. First of all I tried out a new work schedule. I worked the overnight shift from 10 PM to 8 AM for 7 nights in a row. That meant that I worked 70 hours last week! The good news is that I get this whole week off, 7 days in a row. Yea! It is especially nice since it is a holiday week. With me being gone every night last week, and having to sleep some during the day, Kevin had extra Kinley duty. As always, he did a great job picking up the slack and took excellent care of Kinley.
There was one little change to Kinley's care last week that made it a little easier on Kevin. Kinley went NG tube free! Well, for a few days that is. If she was off the NG for good you could have bet that would have been the title for this post. Anyway, Kinley was doing very good (for her) on her oral intake, so we decided to leave the NG out for a few days to see if she could keep up the good intake and even increase it without that pesky night time tube feed running. Kinley was at the point where she was eating anywhere between 500 and 600 mls from her bottles during the day. If you remember, her minimum oral intake to meet her hydration needs is 600mls, but we would like her to get closer to 800mls for weight gain. Kinley has been eating this much from her bottles for some time now and we can't seem to get her to eat anymore. We thought this was as good a time as any to pull the tube and she what she could do. The first couple of days she did pretty good, but her oral intake didn't really increase much even without that night tube feed. By the third day she was not eating as much and she had not had a poopy diaper for 2 days. Not a good sign. This brings us to Wednesday.
Last Wednesday Kinley had 3 appointments, and I made it to all of them thanks to my overnight schedule.
The day started out with a home visit from her occupational therapist. We told Kinley's occupational therapist about how we were trying Kinley off the NG and she thought Kinley was doing pretty good. She said that we might put some prune juice in one of her bottles since she was most likely getting constipated from a little dehydration. The constipation was probably causing the slight decrease in appetite for the day. After we talked about bottle feeds for Kinley the occupational therapist watched me feed Kinley some rice cereal. She gave me tips on how to make it more fun and interactive for Kinley and Kinley liked spoon feeding much better after that. The occupational therapist gave us the ok to continue to exclusively bottle feed, but said that we needed to watch out for more signs of dehydration.
Next up was a home visit from Kinley's friend at Parents as Teachers. Kinley liked playing with the new toys that Bridgett brought and she even left a little bag of goodies for Kinley to continue to play with. Bridgett still said that Kinley is looking good and gave us some new ideas for toys that would stimulate Kinley's learning and development. I am always looking for a good excuse to buy Kinley new toys.
The third appointment of the day was at Children's Mercy. We packed a cranky Kinley in the car and headed off to the Special Care Clinic for Kinley to meet with a child development specialist. The appointment was later in the afternoon and Kinley had really been eating poorly that day. I think the constipation was making her not want to eat, but she was still hungry, and she had not taken a nap since she had so many appointments, so like I said before, she was just cranky! The visit at Children's Mercy did not help matters at all. Kevin tried to feed Kinley while she was in at her appointment and the developmental specialist kept asking Kevin and I what we were doing and why. It was like she was judging everything that we were doing. We explained that we were trying to wean Kinley's NG and that the last couple of days went pretty well, but she really had not eaten much today and we thought she was getting a little "backed up". Plus she had not had a nap. The developmental specialist told Kevin and I that she thought we were pretty educated and we should start a log to track Kinley's eating because it probably wasn't as bad as we thought it was. To which Kevin and I stated that we had a fairly large spreadsheet to track what time Kinley started a bottle, what time she finished the bottle, how much she took, if any drugs were given with the bottle, if there was any throw up, if the NG tube was in or out for the feed, etc, etc, you get the point. We then told the developmental specialist that if she wanted to know exactly how bad Kinley was eating for the day she had eaten 85 mls total, and it was after 3 PM by this time. She was a little shocked that Kevin and I knew the exact amount that Kinley had eaten and told us we should go home and give Kinley some prune juice to try and help her out. That was exactly what Kevin and I had just said we were going to do. Anyway, after that was all out in the air, the developmental specialist tried to get Kinley to play with her, but with Kinley not being in a good mood to start with coupled with the fact that she cries for all strangers anyway, it did not go well. We were told that she could not do her assessment on Kinley and that she would like to see Kinley back in when she is a year old. As we were leaving the room the developmental specialist told us not to make the next appointment though, she would call us.
After that fiasco we took Kinley home and tried to give her a bottle with some milk and prune juice, but Kiney didn't want anything to do with it. We ended up having to put the NG back in and start a tube feed. As soon as Kinley had some food in her belly she slept for hours. It was a little disappointing that the trial off the NG did not go as well as we hoped, but now we know she is not quite ready yet. We are back to feeding her bottles during the day, around 500mls, and then a 200-300ml tube feed at night. We will continue to do this for a while and maybe try to wean in another month or so. We will see what Kinley wants.
Last Thursday Kinley had yet another appointment. She went to Dr S's office, her pediatrician, for her first RSV shot! Yes, they were approved! Well Kevin and I were happy, not so sure about Kinley. She did pretty well though. She had to have the shot broken up into two injections because of her dose, so she got one in each leg. As soon as it was over Kinley calmed down pretty quickly and we were on our way. Dr S's office let us bring Kinley in over their lunch break so no other kids were there. That way Kinley was exposed to as few germs as possible. That was so nice of them!
Now for the fun news. Kinley turned 6 months old on Tuesday!! Since I worked 7 days in a row, I got 7 days off in a row, so I was home all day to help Kinley celebrate. We didn't really do much, just hung out at home, but after last week with me working so much and having all those appointments it was nice to stay home and relax and play.
There was one little change to Kinley's care last week that made it a little easier on Kevin. Kinley went NG tube free! Well, for a few days that is. If she was off the NG for good you could have bet that would have been the title for this post. Anyway, Kinley was doing very good (for her) on her oral intake, so we decided to leave the NG out for a few days to see if she could keep up the good intake and even increase it without that pesky night time tube feed running. Kinley was at the point where she was eating anywhere between 500 and 600 mls from her bottles during the day. If you remember, her minimum oral intake to meet her hydration needs is 600mls, but we would like her to get closer to 800mls for weight gain. Kinley has been eating this much from her bottles for some time now and we can't seem to get her to eat anymore. We thought this was as good a time as any to pull the tube and she what she could do. The first couple of days she did pretty good, but her oral intake didn't really increase much even without that night tube feed. By the third day she was not eating as much and she had not had a poopy diaper for 2 days. Not a good sign. This brings us to Wednesday.
Last Wednesday Kinley had 3 appointments, and I made it to all of them thanks to my overnight schedule.
The day started out with a home visit from her occupational therapist. We told Kinley's occupational therapist about how we were trying Kinley off the NG and she thought Kinley was doing pretty good. She said that we might put some prune juice in one of her bottles since she was most likely getting constipated from a little dehydration. The constipation was probably causing the slight decrease in appetite for the day. After we talked about bottle feeds for Kinley the occupational therapist watched me feed Kinley some rice cereal. She gave me tips on how to make it more fun and interactive for Kinley and Kinley liked spoon feeding much better after that. The occupational therapist gave us the ok to continue to exclusively bottle feed, but said that we needed to watch out for more signs of dehydration.
Next up was a home visit from Kinley's friend at Parents as Teachers. Kinley liked playing with the new toys that Bridgett brought and she even left a little bag of goodies for Kinley to continue to play with. Bridgett still said that Kinley is looking good and gave us some new ideas for toys that would stimulate Kinley's learning and development. I am always looking for a good excuse to buy Kinley new toys.
The third appointment of the day was at Children's Mercy. We packed a cranky Kinley in the car and headed off to the Special Care Clinic for Kinley to meet with a child development specialist. The appointment was later in the afternoon and Kinley had really been eating poorly that day. I think the constipation was making her not want to eat, but she was still hungry, and she had not taken a nap since she had so many appointments, so like I said before, she was just cranky! The visit at Children's Mercy did not help matters at all. Kevin tried to feed Kinley while she was in at her appointment and the developmental specialist kept asking Kevin and I what we were doing and why. It was like she was judging everything that we were doing. We explained that we were trying to wean Kinley's NG and that the last couple of days went pretty well, but she really had not eaten much today and we thought she was getting a little "backed up". Plus she had not had a nap. The developmental specialist told Kevin and I that she thought we were pretty educated and we should start a log to track Kinley's eating because it probably wasn't as bad as we thought it was. To which Kevin and I stated that we had a fairly large spreadsheet to track what time Kinley started a bottle, what time she finished the bottle, how much she took, if any drugs were given with the bottle, if there was any throw up, if the NG tube was in or out for the feed, etc, etc, you get the point. We then told the developmental specialist that if she wanted to know exactly how bad Kinley was eating for the day she had eaten 85 mls total, and it was after 3 PM by this time. She was a little shocked that Kevin and I knew the exact amount that Kinley had eaten and told us we should go home and give Kinley some prune juice to try and help her out. That was exactly what Kevin and I had just said we were going to do. Anyway, after that was all out in the air, the developmental specialist tried to get Kinley to play with her, but with Kinley not being in a good mood to start with coupled with the fact that she cries for all strangers anyway, it did not go well. We were told that she could not do her assessment on Kinley and that she would like to see Kinley back in when she is a year old. As we were leaving the room the developmental specialist told us not to make the next appointment though, she would call us.
After that fiasco we took Kinley home and tried to give her a bottle with some milk and prune juice, but Kiney didn't want anything to do with it. We ended up having to put the NG back in and start a tube feed. As soon as Kinley had some food in her belly she slept for hours. It was a little disappointing that the trial off the NG did not go as well as we hoped, but now we know she is not quite ready yet. We are back to feeding her bottles during the day, around 500mls, and then a 200-300ml tube feed at night. We will continue to do this for a while and maybe try to wean in another month or so. We will see what Kinley wants.
Last Thursday Kinley had yet another appointment. She went to Dr S's office, her pediatrician, for her first RSV shot! Yes, they were approved! Well Kevin and I were happy, not so sure about Kinley. She did pretty well though. She had to have the shot broken up into two injections because of her dose, so she got one in each leg. As soon as it was over Kinley calmed down pretty quickly and we were on our way. Dr S's office let us bring Kinley in over their lunch break so no other kids were there. That way Kinley was exposed to as few germs as possible. That was so nice of them!
Now for the fun news. Kinley turned 6 months old on Tuesday!! Since I worked 7 days in a row, I got 7 days off in a row, so I was home all day to help Kinley celebrate. We didn't really do much, just hung out at home, but after last week with me working so much and having all those appointments it was nice to stay home and relax and play.
Monday, November 17, 2008
Stranger Danger
Kinley has entered into the phase where she only wants her mommy or daddy. If anyone else tries to hold her, play with her, or in some cases even look at her she will just cry. I must admit it was kind of cute at first, but now it is a little old. It would be a nice break for Kevin or I if Kinley could handle someone else looking after her for a little while, but that is not the case right now. Kinley has picked up the "stranger danger" lesson early in life. Now we just have to work on teaching her who really is a stranger and who are family/friends.
As far as feeding goes, we have hit a plateau. Kinley is taking about 500mls from bottles and 200 mls during her night tube feed. We have been stuck at this point for a couple of weeks now. Kinley sees her OT from the Infant-Toddler program this week, so we will see what suggestions she has for us.
Other than that, Kinley has an appointment at Children's Mercy and a Parents as Teachers visit this week. The last week or so has been pretty nice without a lot of appointments, but that little rest is over. Back to business Kinley!
As far as feeding goes, we have hit a plateau. Kinley is taking about 500mls from bottles and 200 mls during her night tube feed. We have been stuck at this point for a couple of weeks now. Kinley sees her OT from the Infant-Toddler program this week, so we will see what suggestions she has for us.
Other than that, Kinley has an appointment at Children's Mercy and a Parents as Teachers visit this week. The last week or so has been pretty nice without a lot of appointments, but that little rest is over. Back to business Kinley!
Saturday, November 8, 2008
Kinley's Big Day
Today marks a pretty big milestone for Kinley. That is because today Kinley has been out of the hospital more than she has been in the hospital for the first time in her life! (Don't tell her that most babies hit this milestone before they are a week old, she is pretty excited about it.) Looking back I can't believe how long she was actually in the hospital. It seems like she has been home for such a long time when in reality she was in the hospital just as long. So, thanks to everyone at Children's Mercy Hospital who helped all three of us make it through those long, tough days and nights. Also thanks to all our friends and family who have been so supportive both while Kinley was in the hospital and since coming home. I don't know how we would have made it through without so much support. We really appreciate everything and feel so blessed to be where we are today. Here are some pics of Kinley on her big day because I know that is what everyone really wants to see.
Kinley and Kobi
More tummy time
As much as I try and stop her, I think Kinley is just going to be a thumb sucker for now.
Here Kinley is trying to play, but the college football games are on and Kinley loves to watch football.
Kinley and Kobi
More tummy time
Wednesday, November 5, 2008
A New Feeding Plan?
Well, today Kinley had an appointment at Children's Mercy. She saw her nurse practitioner at the Special Care Clinic and the occupational therapist. We were told that Kinley is still doing well with weight gain. She has not gained as much as she did the last time we were at the clinic, but we have been trying to wean her off the NG, so she has not been eating quite as much as she used to. Today Kinley weighed in at over 15 lbs. Way to go, still good weight gain!
This was the first time that we have discussed weaning the NG with Kinley's NP and OT at Children's Mercy. We have been weaning based on recommendations from Kinly's OT from Infant-Toddler Services of Johnson County and her pediatrician. The NP and OT today were not opposed to us trying to wean Kinley because she is still keeping up with her growth curve, but they thought we should go about it another way.
It has been a little while since I posted an update on Kinley's feeding progress, so just to get caught up here is the latest. Just like any other kid Kinley has her good days and not so good days. For the most part though, she is doing well, slow and steady progress. For the past couple of days Kinley has taken 500 mls from bottles during the day, and Kevin and I have been giving a 200 ml/hr bolus feed at night. We feel pretty good that she is taking over 50% from bottles. The problem is in how Kinley is taking her 500 mls from the bottle. Kinley still does not eat a large amount of food at one sitting. She is more of a "grazer." This may be healthy for adults, but is not necessarily the thing you want an almost 6 month old to be doing. Kinley will have some bottles that are as small as 30 mls and then she is a little hungry an hour later. She will take another 30-60 mls then. Occasionally she will have a good feeding over 100 mls, and then she can go about 3 hours before eating again. This has been going on for the past month or so, ever since we started weaning and trying to feed her based off her hunger cues. It has been really hard on Kevin and I. We are basically confined to the house since we are feeding so often. If Kinley does have a good feed then we quickly try to get out of the house to run errands if we need to. We can't really go anywhere with Kinley or do anything if she is eating every 1-2 hours. Kevin and I have been doing it this way though because we were trying to feed her based on her hunger cues rather than on a schedule. Like I said earlier, it is working to get Kinley to take more by bottle, but it is not the ideal situation.
The NP and OT suggested that we go back to feeding Kinley on a schedule because that is how most healthy (normal) babies eat. They thought it was important for Kinley to learn to eat full quantities less frequently and get on a normal schedule. Plus as an added bonus for Kevin and I we would hopefully not feel like the whole day revolves around feeding Kinley. Their suggestion was to feed Kinley 130 mls 6 times per day. (FYI Kinley is still getting fortified breastmilk that is thickened to a nectar consistency.) We would try the bottle first and whatever Kinley does not take by bottle would have to be pumped into her via her NG tube.
I am not sure if I am totally on board with this new plan. I kind of feel like it is a step backwards to use the NG during the day again. Plus, if Kinley throws up during the day we would have to replace the tube right away. Now we just leave it out if she throws up and replace it for the night feed. It has been so nice not to have to worry about replacing the tube all the time. Kevin and I have been discussing the pros and cons of both feeding plans and have not come up with our plan yet. I guess I was just disappointed that the NP and OT didn't say to go ahead and take the tube out and just see how Kinley does. Wishful thinking on my part. I know in my head that Kinley is not at that point yet, but I can't help to think how nice it would be without that tube. To make matters worse, the NP started asking Kevin and I if we had thought about a G-tube for Kinley! I was a little blindsided by this comment because I thought we were trying to wean Kinley OFF the NG tube. I didn't really want to hear that they didn't think Kinley would be able to come off the NG anytime soon, and that a G-tube would be something they wanted us to consider. I am still hopeful we can get Kinley off the NG tube and that a G-tube will not be necessary. We all know that Kinley is a tough little girl and can pull of miracles if she wants to.
On a brighter note, Kinley was able to try cereal at her OT appointment. The OT said the cereal was just for developmental purposes, and not to increase nutrition. She said it was good to let Kinley get used to eating from a spoon and having a different texture in her mouth. (It is also a good photo opportunity.) We still have to rely on the milk to deliver the nutrition and calories that Kinley's needs though. Kinley looked so good sitting in the highchair and acted like she was enjoying it. The hospital was out of rice cereal, so Kinley got to try oatmeal instead. I was hoping that since Kinley is at that stage where she puts everything in her mouth, the oatmeal would not be a big deal, but Kinley was not a fan. She moved it around inside her mouth for a while and then started to cry. It will just take some time for Kinley to get used to this new experience. We are supposed to sit Kinley down at the dinner table with Kevin and I once a day and feed her rice cereal at home. I am looking forward to that.
Here are some pics of Kinley eating her oatmeal at her OT appointment.
This was the first time that we have discussed weaning the NG with Kinley's NP and OT at Children's Mercy. We have been weaning based on recommendations from Kinly's OT from Infant-Toddler Services of Johnson County and her pediatrician. The NP and OT today were not opposed to us trying to wean Kinley because she is still keeping up with her growth curve, but they thought we should go about it another way.
It has been a little while since I posted an update on Kinley's feeding progress, so just to get caught up here is the latest. Just like any other kid Kinley has her good days and not so good days. For the most part though, she is doing well, slow and steady progress. For the past couple of days Kinley has taken 500 mls from bottles during the day, and Kevin and I have been giving a 200 ml/hr bolus feed at night. We feel pretty good that she is taking over 50% from bottles. The problem is in how Kinley is taking her 500 mls from the bottle. Kinley still does not eat a large amount of food at one sitting. She is more of a "grazer." This may be healthy for adults, but is not necessarily the thing you want an almost 6 month old to be doing. Kinley will have some bottles that are as small as 30 mls and then she is a little hungry an hour later. She will take another 30-60 mls then. Occasionally she will have a good feeding over 100 mls, and then she can go about 3 hours before eating again. This has been going on for the past month or so, ever since we started weaning and trying to feed her based off her hunger cues. It has been really hard on Kevin and I. We are basically confined to the house since we are feeding so often. If Kinley does have a good feed then we quickly try to get out of the house to run errands if we need to. We can't really go anywhere with Kinley or do anything if she is eating every 1-2 hours. Kevin and I have been doing it this way though because we were trying to feed her based on her hunger cues rather than on a schedule. Like I said earlier, it is working to get Kinley to take more by bottle, but it is not the ideal situation.
The NP and OT suggested that we go back to feeding Kinley on a schedule because that is how most healthy (normal) babies eat. They thought it was important for Kinley to learn to eat full quantities less frequently and get on a normal schedule. Plus as an added bonus for Kevin and I we would hopefully not feel like the whole day revolves around feeding Kinley. Their suggestion was to feed Kinley 130 mls 6 times per day. (FYI Kinley is still getting fortified breastmilk that is thickened to a nectar consistency.) We would try the bottle first and whatever Kinley does not take by bottle would have to be pumped into her via her NG tube.
I am not sure if I am totally on board with this new plan. I kind of feel like it is a step backwards to use the NG during the day again. Plus, if Kinley throws up during the day we would have to replace the tube right away. Now we just leave it out if she throws up and replace it for the night feed. It has been so nice not to have to worry about replacing the tube all the time. Kevin and I have been discussing the pros and cons of both feeding plans and have not come up with our plan yet. I guess I was just disappointed that the NP and OT didn't say to go ahead and take the tube out and just see how Kinley does. Wishful thinking on my part. I know in my head that Kinley is not at that point yet, but I can't help to think how nice it would be without that tube. To make matters worse, the NP started asking Kevin and I if we had thought about a G-tube for Kinley! I was a little blindsided by this comment because I thought we were trying to wean Kinley OFF the NG tube. I didn't really want to hear that they didn't think Kinley would be able to come off the NG anytime soon, and that a G-tube would be something they wanted us to consider. I am still hopeful we can get Kinley off the NG tube and that a G-tube will not be necessary. We all know that Kinley is a tough little girl and can pull of miracles if she wants to.
On a brighter note, Kinley was able to try cereal at her OT appointment. The OT said the cereal was just for developmental purposes, and not to increase nutrition. She said it was good to let Kinley get used to eating from a spoon and having a different texture in her mouth. (It is also a good photo opportunity.) We still have to rely on the milk to deliver the nutrition and calories that Kinley's needs though. Kinley looked so good sitting in the highchair and acted like she was enjoying it. The hospital was out of rice cereal, so Kinley got to try oatmeal instead. I was hoping that since Kinley is at that stage where she puts everything in her mouth, the oatmeal would not be a big deal, but Kinley was not a fan. She moved it around inside her mouth for a while and then started to cry. It will just take some time for Kinley to get used to this new experience. We are supposed to sit Kinley down at the dinner table with Kevin and I once a day and feed her rice cereal at home. I am looking forward to that.
Here are some pics of Kinley eating her oatmeal at her OT appointment.
The before picture, Kinley looks ready to eat!
This is Kinley during the feed, she kept looking away and trying to bat the food away with her hands. Looks like she needs a little more practice eating from a spoon.
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