Monday, December 22, 2008
The good thing about getting out of the house and to the doctor's office was that Kinley was weighed again. Kinley now weighs 16lbs and 4oz. That means that she is continuing to gain weight pretty well! This is especially great since we have still not used the NG tube in 17 days!!! (Of course we are counting.) Kinley is now taking about 720mls to 750mls a day from bottles. Her goal is still 840mls, which is why Kevin and I were so excited that she is still gaining weight at her current intake. Right now she is taking enough by bottle to maintain her hydration and from the looks of it still gain weight at an acceptable rate. Nicely done Kinley!!
Other than a few shots here and there, it looks like the next few weeks should be pretty low key. That should give us plenty of time to spend with friends and family for Kinley's first Christmas. We are really looking forward to that. Looking back at this year I can't believe all we have been through and to be at this point now is just amazing. Kinley continues to inspire Kevin and I and we hope to do the same for her. Merry Christmas!
Thursday, December 18, 2008
Everyone at the blood drive was really nice and helpful. They all said how cute Kinley was and when they heard her story and why we were donating blood they asked if they could take our picture. There is a chance Kinley might end up in a calendar promoting blood donation.
Here are a couple of pics that I took once we got home. If you look closely you can see the sticker I gave Kinley saying "First Time Donor".
Wednesday, December 17, 2008
Friday, December 12, 2008
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
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
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.
Wednesday, November 26, 2008
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
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
Here Kinley is trying to play, but the college football games are on and Kinley loves to watch football.
Wednesday, November 5, 2008
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 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.
Friday, October 31, 2008
Wednesday, October 29, 2008
Just another cute picture of Kinley!!
Thursday, October 23, 2008
First stop was a visit with Dr. M for me. When I was in for my 6 week post-partum visit I was told to bring Kinley in for my next appointment because Dr. M and his nurse really wanted to meet Kinley. This was the first time they got to meet her since she was delivered by the specialist downtown at St. Lukes on the Plaza. Dr. M said that Kinley was a legend and that all his colleagues at Children's Mercy know about her. That was nice to hear. Kinley also got to meet the ultrasound tech who took so many good pics of Kinley before she was born. The ultrasound tech was also the one who noticed that Kinley's heart was on the wrong side, which eventually led to the diagnosis of CDH. We are thankful that she was able to catch the abnormality early so that Kinley could get the best care possible for her. Everyone was so impressed with Kinley and could not believe how well she is doing.
After the doctor's appointment we quickly stopped to get some food for Kobi, gas for the car, ribbon for Kinley so that I can make some bows for her hair, and lunch for Kevin and I. We then headed to Kevin's parent's house to eat lunch and feed Kinley. We figured that we still had a few errands to run, and if we went home to feed Kinley we might get to cozy and push off the rest of the errands to another day. (I forgot to mention that it was raining and not a very nice day to be out and about.) Kinley only ate 2 ounces from her bottle while we were out, but Kevin and I figured it was probably just because it was a new environment for Kinley and she was not so sure what to do or think about it.
After our lunch stop it was time for Kinley to go to the doctor's office. She did not have an appointment, but I wanted to stop by and check her weight. It has been 2 weeks since we started trying to wean the NG and I just wanted to make sure that Kinley was not losing too much weight. She still looks good, but I wanted to check just to make sure. I was totally shocked when the scale said 14 lbs 13 oz. Kinley had not lost any weight, in fact she gained about 12 oz for those 2 weeks! I guess we can be a little more aggressive weaning the NG tube now.
Since I had been to my doctor, and Kinley had been to her doctor, we thought it was only fair to stop by Kobi's doctor so she did not feel left out. (I am pretty sure Kevin didn't mind that he did not have to go to a doctor.) We just picked up some heartworm tabs for Kobi, but we had to bring Kinley in so that the people at the vet's office could meet her also. Kevin and I had a pretty rough time earlier this year as far as pets go, so we got to know the vet and everyone who works there pretty well. That is a whole other story though. Anyway, they have been wanting to meet Kinley, so we were finally able to bring her in.
After running around all day it was so nice to get back home. We tried to feed Kinley once we got home, but she only took about 80 mls. I think all the running around made her pretty sleepy and she was not really in the mood to eat. Lets just say that it was not Kinley's best day as far as bottle feeding goes, but she is entitled to those days every once in a while. She did really well eating the day before, so we really can't complain.
Even though the weather was not ideal yesterday it was so nice to get out of the house as a family and get a lot crossed off of the "to-do" list. The really good news is that Kinley did not throw up once while we were out! All in all a good day. We were all really tired by the end of the day though and went to bed really early.
Monday, October 20, 2008
First of all we were told to increase the rate of Kinley's night feed. We were giving her milk at a rate of 55 mls/hr, but we have been told to increase that until we are at the point where we can give 200 mls/hr. Giving a faster tube feed should allow us to give Kinley more bottles during the day. When the night tube feed ran slower we had to start it fairly early in the evening to make sure we got it all done in time, some days the tube feed would last for 8 hours or more. Now the goal is to add 2 extra bottles during the day, one earlier in the day and one later at night. Hopefully by shortening the length of the night tube feed (by increasing the rate) we will be able to get those extra 2 bottles in. We were also told that we have to stop feeding Kinley when she falls asleep. This is a bummer since Kinley did some of her best eating when she was only half awake. Jami said that if we continue to feed Kinley when she is basically asleep we will have problems down the road. We learned from an earlier visit with Jami that falling asleep when eating is a baby's way of refusing the bottle and we could run into trouble down the road when Kinley is able to speak her mind about refusing bottles. Lastly, we were told to limit bottle feeding sessions to 20 minutes. That should not be too hard since Kinley does most of her eating in the first 10-15 minutes anyway. By adding in those 2 extra bottles, which would mean that Kinley would get between 6-7 bottles per day, the goal is to get Kinley taking around 600mls by bottle. The rest of the milk could be given over 1 hour at night if we get up to the 200mls/hr rate. Sorry if this is kind of confusing, or more detailed than you are really interested in.
On a side note, and having nothing do to with feedings, Kinley rolled over several times today by herself! I can't believe I missed that too, but I had to work. That darn work, if only there were fewer bills to pay I would not have to work as much. Oh well, at least Kevin was there to cheer Kinley on.
Seems like I had more to post, but just can't remember right now.
Sunday, October 19, 2008
On Saturday night Kinley had her second birthday party to go to. Yes, she is quite popular already. I think we will have our hands full when she gets a little older. Kinley's friend, Brecken turned 1 and his parents had a little celebration for him. Kinley did really well at Brecken's house. We had to start her tube feed shortly after arriving, but that is no big deal for us anymore. Kinley watched Brecken open his gifts and then it was cake and ice cream time. We sang "Happy Birthday" to Brecken and watched him eat a piece of cake. I guess Kinley thought that if we were not going to let her have any cake or ice cream, then she was not going to let us have any either. Just then Kinley let out a little cough, the kind of cough that Kevin and I recognize as "I am about to throw up, so if you don't want a huge mess on your hands you better find a sink pretty quickly". I was holding Kinley at the time, so I made my way to the bathroom and made it in time I guess. I was able to stop Kinley from throwing up on the floor, but she did get both of us a little dirty, and the rest made it in the sink. The NG came out, so we had to stop her tube feed. Needless to say, Kevin and I did miss out on the cake and ice cream. We left shortly after Kinley threw up to go home, clean up, put the NG back down and restart the tube feed. Even though we had to make an early exit it was still nice to get out of the house with Kinley and see friends. Though the last couple of outings have been a little rough, we are still thankful that we were able to take Kinley out for a little while. (If you don't remember, the first birthday party that Kinley went to a couple weeks ago went well up until the point she threw up and we had to leave that party also.) Oh well, it was fun getting out while it lasted and we are not about to stop trying. Kinley deserves to get out and have some fun!
We are still trying to wean Kinley off the NG tube and I guess it is going alright. She is starting to eat a little more from her bottles, but the main thing is that she is A LOT less fussy when she is trying to eat. That is a HUGE improvement and we are very thankful for that! For the past couple of days Kinley has taken a little over 400mls by bottle which is up from an average of 200mls before we started trying to wean. Kinley's goal volume is still 840mls, so we are still shy of the halfway mark via bottles, but at least we are making progress. Kinley has started to learn what hunger is and that the bottle will help fix her hunger. I think that has been the key as far as her being less fussy. The volume part will just take some more practice and patience.
Not much else to report. A quiet week is a good week as far as we are concerned.
Saturday, October 11, 2008
Friday, October 10, 2008
Here Kinley is all ready to go. She was not too happy that we woke her up early. The next pic is obviously of her cute shoes. By the end of the race and on our way home I think Kinley was pretty tired of me taking pics. Oh well, she will have to get used to people taking pics of her. There are not any of her outside at the race because she was asleep pretty much the whole time and I didn't want to risk waking her up.
Dr. S. asked how things were going and we naturally said everything is great except she hates eating. We mentioned that the OT wanted us to try and wean Kinley off the NG and he thought that was a good idea also. He also mentioned that Kinley is at a weight now where he can feel comfortable trying to wean. He calculated that Kinley requires at least 600mls to maintain her hydration during the weaning period. (We had been making sure Kinley got 840mls.) I asked about starting Kinley on some baby food since she is over 4 months now and still hates the bottle. Dr. S. said that he normally recommends waiting until 6 months, but that we could sit Kinley at the dinner table in her Bumbo chair while Kevin and I eat and see if she shows some interest in eating. If she does we could try some rice cereal for her. If Kinley tolerates the rice cereal and likes eating like a "big girl" we have the go-ahead to try other baby foods such as fruits and veggies.
I almost forgot to mention that Kinley weighed 14 lbs 0.08oz! According to the growth charts that Dr. S. uses Kinley is at the 50% for head circumference and weight and 95% length. She is a growing machine!
Other than having to go back for her RSV shots during RSV season, Kinley got the all clear and doesn't need another appointment with Dr. S. until her 6 month check-up.
Kevin fed Kinley before Jami (the OT) came over. This left time for Kevin and Jami to do some talking about Kinley. Kevin asked questions about g-tubes since we have started to accept the fact that Kinley is just not eating well and we don't really see her getting rid of the NG tube anytime soon. Since we still have to replace the NG fairly often we were wondering if a g-tube might be easier on Kinley overall. It would mean no more sticking a tube up her nose, but would require a surgery for the initial placement. In case you are not familiar with a g-tube, it is a tube that goes into the abdomen and directly into the stomach. I haven't really done much research on them since we are not at the point of placing one in Kinley yet. Kevin and I are not to thrilled about Kinley having any more surgeries right now, especially if it is not a necessity.
Jami said she thought Kinley was not ready for a g-tube yet. She actually wants Kevin and I to try and start weaning Kinley off the NG tube!! Jami thinks that Kinley could be weaned off the NG by the end of the month! That would be great, but I am not holding my breath. Jami said that since Kinley has done so well lately at packing on the pounds it would be ok to try and starve her a little to get her used to feeling hungry and learning that eating from the bottle would cure her hunger. Jami wants Kevin and I to feed Kinley a bottle when she shows signs of hunger. This will be a learning experience for all of us since Kinley doesn't really know what hunger is (she has never had to feel hunger before) and Kevin and I don't know what her hunger cues are. Kevin and I are supposed to stop feeding Kinley after she is done with the bottle. (Normally we would give her the rest of her feed through the NG tube.) If Kinely gets too far behind only eating from the bottle during the day we can give her a feed through her NG, but otherwise we are just supposed to let Kinley get hungry and eat what she can from the bottle. We will still supplement her bottle feeds with an overnight tube feed so that Kinley gets enough milk to maintain her hydration status. It is exciting to hear someone talk about weaning the NG tube especially since Kevin and I were starting to think we would never get Kinley off of it.
Jami and Kevin also talked about Kinley's reflux and how to better manage it. Kinley has been waking up and having a lot of thick, clear mucus in the morning. A few times the mucus is so thick that it causes Kinley to gag and throw up. Jami said that is common with reflux babies, especially when they have an NG tube. The thick, clear mucus is Kinley's way of combating the reflux. The body makes the mucus to line the stomach and esophagus to protect it from the acid that comes with reflux. Since Kinley's reflux is already being managed with meds, Jami came up with an additional way to help. She is letting Kinley borrow a Tucker Sling. A Tucker Sling is a device that allows us to keep Kinley at an angle when sleeping so that her head can stay elevated. The Tucker Sling hooks around the head of the bed and Kinley is strapped in kind of like she would be in a swing. This prevents her from sliding down her bed when the head is elevated. This is a little hard to explain, so I have attached a picture.
The picture doesn't really show how elevated Kinley's head gets in her bed, but hopefully you can get the idea. Kinley actually sleeps really well in the Tucker Sling. I was worried she wouldn't find it comfortable, but that is not the case. Doesn't she look relaxed with her hands resting under her head?
Jami also stated that Kinley is doing so well with her head control that we can finally use her Bumbo chair now.
Sounds like Jami is pleased with Kinley's progress and so are we!!
Sunday, October 5, 2008
Around 9 pm Kinley started getting fussy, which Kevin and I kind of expected since it was past her bedtime. We had planned on leaving around this time anyway. We changed her diaper and put her in her carrier to see if she would calm down or fall asleep. It worked, she calmed down, but didn't go to sleep. Kevin and I decided we had a little time to finish our conversations and say goodbye. That is when, out of the blue, Kinley silently threw up in her carrier and out came her NG. At least she didn't make a big scene or a big mess, but needless to say Kevin and I left pretty quickly after that happened.
Kinley-next time you want to leave just say something instead of throwing up. Trust me, everyone will be a lot happier.
We took Kinley home, cleaned her up, put the NG back down so we could restart her tube feed and went to bed. Overall it was a good outing and Kinley did really well considering we kept her up too late.
Once again, no pics to post because we forgot to bring the camera. Anyone who knows Kevin and I already know that we are really bad with cameras. We never remember to bring them anywhere and if we do remember to bring them we usually forget to take pictures. I really need to try and get better. We started off so good taking lots of pictures. We will work on taking more.
Tuesday, September 30, 2008
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.
Thursday, September 25, 2008
Sunday, September 21, 2008
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.
Thursday, September 18, 2008
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
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!
Thursday, September 11, 2008
So, now that we know the only problem seems to be reflux I am not sure if there is anything else we can do to help Kinley eat better since we were already treating for reflux. I guess we continue to do what we have been doing and wait to see what the docs say at Kinley's next appointment at Children's Mercy, which is the later part of next week.