Today she weighed 2.8 kg or 6.16 lbs and was 48.5 cm / just over 19 in long. Not sure what the ratio of weight to length was, but she's not gained as much as they want. She averaged 23 grams per day gain and they wanted 30 grams per day. The reason they want her in the 50th % for BMI is that research shows better lung development and although the lung keeps making new cells most are made during the first two years.
They upped the amount of Creon (her digestive enzyme med) to 1.5 pills per feeding. We are fortifying the breast milk with 1/4 tsp of a specialty formula called Pregestimil which stayed the same this visit. We are now having to add salt to her feedings. In a 24 hour period we add 1/8 tsp of salt. Basically spreading one small packet to 6-7 feedings.
We go back in two weeks. If she increases how much she eats at one time, how much Creon she gets at each feeding will be increased. This will probably happen at every visit for a while.
Wednesday, October 26, 2011
Tuesday, October 25, 2011
Two crazy days ahead of me
The next couple of days will be a bit crazy. Tomorrow, we have to be in Nashville early for the Infant CF clinic. Yay, we get to drive through morning rush hour traffic, but I would rather go early and get it over with than drive through the evening rush hour traffic.
Olivia has been fussy the past few days, not sure if it is just normal baby fussiness, her having gas, or if it is acid reflux (which they told us at the clinic that CF patients tend to have more often than norm). They told us we would be constantly wondering if things were normal kid stuff or caused by the CF now I'm beginning to see what they mean. I weighed her earlier and she was at 6 lbs 3 oz. They want her to be in the 50% for weight vs height (BMI). Last check she was at 11%, we'll see how much closer this gets her tomorrow (and how accurate our little scale is.
Thursday, I have an appointment at DHS to try and get Olivia on TennCare to help offset some of her future expenses. Even if she/we don't qualify I have to do this before the Child Special Services at the Health Department can finish they're paperwork. We should qualify for CSS services even if not for the TennCare. It would be nice if she qualifies for both. Even nicer if I didn't have to jump through all the hoops.
Olivia has been fussy the past few days, not sure if it is just normal baby fussiness, her having gas, or if it is acid reflux (which they told us at the clinic that CF patients tend to have more often than norm). They told us we would be constantly wondering if things were normal kid stuff or caused by the CF now I'm beginning to see what they mean. I weighed her earlier and she was at 6 lbs 3 oz. They want her to be in the 50% for weight vs height (BMI). Last check she was at 11%, we'll see how much closer this gets her tomorrow (and how accurate our little scale is.
Thursday, I have an appointment at DHS to try and get Olivia on TennCare to help offset some of her future expenses. Even if she/we don't qualify I have to do this before the Child Special Services at the Health Department can finish they're paperwork. We should qualify for CSS services even if not for the TennCare. It would be nice if she qualifies for both. Even nicer if I didn't have to jump through all the hoops.
Tuesday, October 18, 2011
Paperwork, paperwork, and more paperwork
Spent most of the day yesterday at the Health Department filling out paperwork to get Olivia on any assistance that we can. I now feel like the government knows more about me than I know about myself.
She had her normal pediatrician visit last Thursday, the day after her Vandy visit. She'll go to the ped for checkups for regular baby stuff; i.e. is she rolling over/crawling/walking, etc. at the appropriate age-range. The cool thing is even though we had just gone to Vandy the day before, they had already faxed all the info from that appointment to our ped. So I don't have to worry about their office being on the same page as far as her treatments go. They'll already know everything that Vandy has told us.
Unless she gets sick we don't go back to the ped until Nov. Around the same time we'll have to do her 2 month shots at the Health Department.
Next week we go for an infant CF clinic visit at Vandy. Plus I get to visit DHS to see if Olivia qualifies for TennCare which we have to try for in order to get the Child Special Services (CSS) at the Health Department. She doesn't have to get approved for TennCare, although it would be nice, we just have to have a denied or approved status to give to CSS before they can process our application.
She had her normal pediatrician visit last Thursday, the day after her Vandy visit. She'll go to the ped for checkups for regular baby stuff; i.e. is she rolling over/crawling/walking, etc. at the appropriate age-range. The cool thing is even though we had just gone to Vandy the day before, they had already faxed all the info from that appointment to our ped. So I don't have to worry about their office being on the same page as far as her treatments go. They'll already know everything that Vandy has told us.
Unless she gets sick we don't go back to the ped until Nov. Around the same time we'll have to do her 2 month shots at the Health Department.
Next week we go for an infant CF clinic visit at Vandy. Plus I get to visit DHS to see if Olivia qualifies for TennCare which we have to try for in order to get the Child Special Services (CSS) at the Health Department. She doesn't have to get approved for TennCare, although it would be nice, we just have to have a denied or approved status to give to CSS before they can process our application.
Wednesday, October 12, 2011
Vanderbilt Doctor Visit for October 12th
Today we had our second visit to the Vanderbilt Cystic Fibrosis pediatric clinic.
One of the things with CF patients is that 95% of them have insufficient pancreatic function. Olivia is one of these. So her pancreas is clogged and the enzymes needed for her to correctly digest her food are not released to the small intestine. So last week she was started on a small dose of digestive enzymes to help her digest and gain weight. They would like her weight to be in the 50th percentile as this will help her lung function in the future. Currently she is close to the 11th percentile which is up from around the 6th percentile from which she started. We are to increase her dosage to a full enzyme pill with every feeding. Since she is unable to swallow a pill at this age, we have to open the pills to get the small beads out and get them far enough in her mouth that she will swallow them.
We will also be adding some vitamins to her feedings soon. Certain vitamins are not well absorbed by CF'ers. Along with a tiny bit of specialty formula in with her expressed breast milk. This will increase her calorie intake and hopefully she will have a quicker weight gain.
Today we are also adding 'breathing' treatments. At least two times a day we have to help her jar loose the thick mucus secretions that are in her lungs.
As she gets older, we may have to add many more types of treatments. Hopefully by being pro-active and preventive, we can lessen what all she has to have done.
One of the things with CF patients is that 95% of them have insufficient pancreatic function. Olivia is one of these. So her pancreas is clogged and the enzymes needed for her to correctly digest her food are not released to the small intestine. So last week she was started on a small dose of digestive enzymes to help her digest and gain weight. They would like her weight to be in the 50th percentile as this will help her lung function in the future. Currently she is close to the 11th percentile which is up from around the 6th percentile from which she started. We are to increase her dosage to a full enzyme pill with every feeding. Since she is unable to swallow a pill at this age, we have to open the pills to get the small beads out and get them far enough in her mouth that she will swallow them.
We will also be adding some vitamins to her feedings soon. Certain vitamins are not well absorbed by CF'ers. Along with a tiny bit of specialty formula in with her expressed breast milk. This will increase her calorie intake and hopefully she will have a quicker weight gain.
Today we are also adding 'breathing' treatments. At least two times a day we have to help her jar loose the thick mucus secretions that are in her lungs.
As she gets older, we may have to add many more types of treatments. Hopefully by being pro-active and preventive, we can lessen what all she has to have done.
My original post on October 7th
This is my original post on Facebook on October 7th after we had learned about Olivia having Cystic Fibrosis.
OK. An update on Olivia. One of her original newborn screenings came back with an abnormal reading so last week I took her to the local Health Dept. and had the screening re-done. So this Wed. we got a call that the screening still came back abnormal. So we spent all day yesterday at Vanderbilt with the specialists for that particular screening to check for possible problems.
The good news - we got a same-day diagnosis. No waiting.
The bad news - she has cystic fibrosis
Good - It's treatable
Bad - It's NOT curable
OK. An update on Olivia. One of her original newborn screenings came back with an abnormal reading so last week I took her to the local Health Dept. and had the screening re-done. So this Wed. we got a call that the screening still came back abnormal. So we spent all day yesterday at Vanderbilt with the specialists for that particular screening to check for possible problems.
The good news - we got a same-day diagnosis. No waiting.
The bad news - she has cystic fibrosis
Good - It's treatable
Bad - It's NOT curable
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