Today Kinley had to get her second round of RSV shots. I hated bringing her out in the cold just to go get a shot, but knew it had to be done. Once again Kinley was a trooper and just cried for a moment during her shots. I feel like Kinley has had so many shots lately with her 6 month shots, first round of the flu and now her first and second round of RSV shots. In just a couple of weeks we have to go back for her flu booster and then in another couple of weeks it will be time for her third RSV shot. Hopefully with all these precautionary measures Kinley will stay healthy. Oh well, tis the season I guess.
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!
Monday, December 22, 2008
Thursday, December 18, 2008
Have You Donated Lately?
We have. Kevin's work had a blood drive yesterday, so Kevin, Kinley and I thought it was important to give back. Obviously Kinely was not able to donate, but I gave her my sticker because I knew she would have donated if she could have. Neither Kevin nor I had donated blood before, but after Kinley's stay at Children's Mercy we know how important it is now. If you remember, the reason Kinley came off of ECMO was because she was bleeding too much after her repair surgery. I can't remember exactly how many transfusions Kinley had the day she came off of ECMO, and frankly I don't want to, but it was that blood, among other things that saved her life. It wasn't just that one day either, Kinley needed blood on several other occasions while at Children's Mercy.
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".
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
Kinley's New Picture
A couple of weeks ago we took Kinley to...where else...Walgreens so that she could meet Santa. We warned the photographer that Kinley would probably start to cry right away, so the quicker he could take the picture the better. We didn't have to warn Santa because, well, he is Santa and he already knows what Kinley has been up to. Aside from crying whenever someone other than Kevin or I holds Kinley, she has been a really good girl this year! She even surprised us and didn't cry at all for her picture with Santa. She must have know that she should be extra good if she wanted a lot of presents this Christmas. I guess she learned that lesson early. Anyway, it was a good trip to meet Santa. Kinley was very well behaved and we didn't have to wait in line at all to see Santa, Kinley got the VIP treatment.
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.
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