The pictures did not turn out as well as I had hoped, but Kinley is wearing a Santa hat. The hat is way to big for her though, so it is kind of hard to tell. 
Friday, December 12, 2008
Somebody Is In The Christmas Spirit
The pictures did not turn out as well as I had hoped, but Kinley is wearing a Santa hat. The hat is way to big for her though, so it is kind of hard to tell. 
A Very Good Visit
Today has been a really good day. Kinley had an appointment at the Special Care Clinic at Children's Mercy Hospital this morning. Kevin and I had been a little worried about this appointment. The Special Care Clinic is always really conservative in treating Kinley and we thought they might not be so happy with some of the changes we have made to Kinley's care in the last couple of weeks. In addition to that, Kinley does not really eat well at her appointments and we were worried that would put her behind for today and result in having to do an NG tube feed tonight. We actually thought about canceling our appointment today, but ended up going and now we are glad we did.
I guess I should start out by saying that in addition to not doing NG tube feeds at night for the past 6 days we also stopped all her meds a couple of weeks ago. We got the OK from her pediatrician about a month ago to stop her iron, but she was supposed to also be on her Prilosec and erythromycin still. We stopped the erythromycin because she was stooling well and we wanted to see how she did without the med. We stopped her Prilosec because she put up a fuss when we tried to give it to her orally. She used to get it through her NG and it wasn't a problem, but if you are not familiar with Prilosec, it tastes like salt water. I tried to mask it by adding some grape flavor, but it was still really nasty. Much to our surprise Kinley did really well off the Prilosec. Her oral intake started to increase and she actually threw up and spit up less. As a mom and pharmacist I have no explanation for this reaction, but if Kinley is happy and doing well then I am happy. As for the erythromycin, we will be starting that back up today. She was able to keep up with stooling as long as she was getting her full 800+mls per day, but now that she is getting closer to 700+mls, she is having a harder time keeping up. We have been giving an ounce of prune juice with one bottle the last couple of days, but I think we just need to start the erythromycin again.
The Special Care Clinic had only good things to say about Kinley and her progress. Kinley weighed 15lbs and 15oz today, so they were happy with her weight gain. She is also keeping up with her growth curve nicely and her oxygen saturation was 100% when they checked it. Everyone said how good (and chubby) she looked. They said that we could keep doing what we have been doing, no NG, no meds and all! Kinley was all smiles after hearing her good report. In fact, Kinley's nurse practitioner, dietitian and OT said her progress was like an early Christmas present.
Kinley cooperated by eating a pretty large bottle of 145mls just before we left for Children's Mercy, so we figured if we were back home in 3 hours we would not have to worry about feeding Kinley while we were out. Kinley's Special Care Clinic appointment was fairly quick and painless since they were happy with her progress, so that meant that we had time to stop by the NICU to visit everyone up there. Kinley was able to see several of the people that took care of her while she was on ECMO and nurse Katie. It was so good to see everyone again, but I am glad that it was on an outpatient basis.
We did find out that since Kinley now weighs 15lbs and 15oz her minimum intake to maintain hydration is now 720mls. With how far Kinley has come in just the last week or so I know she is up to the challenge!
I guess I should start out by saying that in addition to not doing NG tube feeds at night for the past 6 days we also stopped all her meds a couple of weeks ago. We got the OK from her pediatrician about a month ago to stop her iron, but she was supposed to also be on her Prilosec and erythromycin still. We stopped the erythromycin because she was stooling well and we wanted to see how she did without the med. We stopped her Prilosec because she put up a fuss when we tried to give it to her orally. She used to get it through her NG and it wasn't a problem, but if you are not familiar with Prilosec, it tastes like salt water. I tried to mask it by adding some grape flavor, but it was still really nasty. Much to our surprise Kinley did really well off the Prilosec. Her oral intake started to increase and she actually threw up and spit up less. As a mom and pharmacist I have no explanation for this reaction, but if Kinley is happy and doing well then I am happy. As for the erythromycin, we will be starting that back up today. She was able to keep up with stooling as long as she was getting her full 800+mls per day, but now that she is getting closer to 700+mls, she is having a harder time keeping up. We have been giving an ounce of prune juice with one bottle the last couple of days, but I think we just need to start the erythromycin again.
The Special Care Clinic had only good things to say about Kinley and her progress. Kinley weighed 15lbs and 15oz today, so they were happy with her weight gain. She is also keeping up with her growth curve nicely and her oxygen saturation was 100% when they checked it. Everyone said how good (and chubby) she looked. They said that we could keep doing what we have been doing, no NG, no meds and all! Kinley was all smiles after hearing her good report. In fact, Kinley's nurse practitioner, dietitian and OT said her progress was like an early Christmas present.
Kinley cooperated by eating a pretty large bottle of 145mls just before we left for Children's Mercy, so we figured if we were back home in 3 hours we would not have to worry about feeding Kinley while we were out. Kinley's Special Care Clinic appointment was fairly quick and painless since they were happy with her progress, so that meant that we had time to stop by the NICU to visit everyone up there. Kinley was able to see several of the people that took care of her while she was on ECMO and nurse Katie. It was so good to see everyone again, but I am glad that it was on an outpatient basis.
We did find out that since Kinley now weighs 15lbs and 15oz her minimum intake to maintain hydration is now 720mls. With how far Kinley has come in just the last week or so I know she is up to the challenge!
Thursday, December 11, 2008
We Are Rolling Now
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.
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.
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!
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