Random Musings

Just a few random musings that don't fit into other posts or make for very exciting FB statuses.

We went today to pay off the main maternity hospital bill. Our insurance doesn't cover maternity so we had some slotted aside specifically for this. We had talked to them previously about paying in full and getting10% off of the bill. Well apparently there is a new bill that says if you have no insurance then you get a discount similar to what insurance would get. So instead we were able to get 27% off the bill. Yay! Now I might actually be able to do a decent Christmas for the big girls. Plus we ordered my Christmas gift from Lowe's today - a standup freezer. The bigger one was on sale for only $50 more than the small one so we got the big one.

The reason I want a freezer is store frozen breast milk in. With the older two, I only made it to 6 weeks with a combination of breastfeeding and pumping. With Olivia I did about 2 weeks of breastfeeding, then about a week of combo pumping/breastfeeding, and now all pumping. We are up to 10 weeks, plus I have about 50 bags frozen in the refrigerator freezer. It is so much more important for her to have breastmilk as it is easier for her to digest. Pumping is easier on us than the actual breastfeeding, because this way I can add extra calories to the bottles from formula and add salt. Also I was told that the enzymes could irritate skin and I prefer not to have that part of my body irritated. I'm making small goals as far as pumping. My current goal is to make it to the end of December. I'll set a new goal if I make it that far.

We had to move Olivia's Creon prescription to WalMart because Walgreens was having trouble getting it in and WalMart already carries the Creon6 for some other folks. This is her digestive enzyme so she HAS to have it in order to digest her food. Mike (hubby) didn't think to transfer the vitamin scrip over so we are still waiting on it. I need to get him to check and see if WalMart can get it in quicker or already has it unless Walgreens has gotten it in. He knows a couple of pharmacists at both places so I've been letting him take care of the scripts most of the time. Still waiting for the CFCare to send vitamins too. Starting to get frustrated with the whole vitamin deal.

We have a postal scale here at the house that goes up to 13lbs that we have been weighing Olivia on. It is pretty close to the one at Vandy. All the doctors' offices usually weigh with diaper only. We've discovered that clothes add approximately 3-4 oz. I weighed her last week and she weighed 7 lbs 9.4 oz. So I'm guessing that she is around 7 lbs 6 oz now. They want her to gain 1 oz a day but she is gaining closer to 1/2 to 3/4 oz per day. As long as she is gaining, I'm ok with a slower gain.

2 month immunizations and other stuff

Yesterday was immunization day. Poor baby got two shots in one leg and one shot in the other plus oral drops. She was miserable last night, but is feeling much better today.

I also had Alexis and Eliana get their flu shots while we were at the health department. They recommend anyone who is consistently around Olivia get the flu shot. I got mine the day we went to the health department to talk to Child Special Services (CSS) and to sign up for WIC. I feel weird being on the WIC with us being self-employed but it has helped tremendously with the groceries since we are now starting to get all the doctor and hospital bills.

We are still waiting for her vitamins and next level of CREON to come in to the pharmacy. The CF Careforward people called a few days ago and asked for some corrected information so hopefully they will get her on that then we will be mailed her vitamins for free.

I also had to get some more information together for DHS for the TennCare paperwork. I have to take that over today, but at least that means they haven't automatically denied her. I still don't think we will be able to get her on it, because we have too many "resources", but I have to get the denial or approval letter before CSS can do anything for us at all.

Two month visit at the regular pediatrician

Did our regular pediatrician visit this morning. So far she is on track for all her baby milestones - hearing, sight, pushing up, etc. Updated them with what meds she is taking so they are kept in the loop and will be able to check for conflicts if they ever have to prescribe something to her. Don't have to do another visit with them until January for her 4 month well-baby checkup. I do need to take her to the health department some time next week to get her 2 month shots though.

Grow Baby Grow!!

Good visit at the CF clinic today. Olivia is now at 6.83 lbs (3.1 kg) and 19.5 in (48.5 cm) which are both under 3% on the growth charts. However, her BMI is 12.7 which basically means her weight versus her height is at 32% now instead of 9%. So she is creeping up to that 50% that they want her to be.

The company that was supposed to send us special infant vitamins for her hasn't so far so they sent in a prescription to the pharmacy for those. If we get in the others, then that will just be extra that we have. Besides the vitamins, we are adding Zantac. She has a tiny bit of reflux, plus it will help the enzymes work better and gives the vitamins a better absorption rate. Since she is eating a bit more they upped the enzymes from Creon 3's to Creon 6's. We only have to use one pill per feeding of those. With the 3's we were using 1.5 pills per feeding.

We don't have to go back for another month. Hopefully by then we will know if the insurance will cover the genetic blood tests that way we can get them done while we have used up all the deductible.

About the added salt to Olivia's diet

I was asked about why the added salt to Olivia's diet. I found this text which explains better than I can. http://www.aboutcysticfibrosis.com/cystic-fibrosis-salt.htm

Salt Loss in Cystic Fibrosis

CF affects the body’s ability to move salt and water on the cellular level. The protein created by the mutated CFTR gene is attached to outer cell membranes of exocrine glands and organs. This protein acts as a channel that connects the inner cell material or cytoplasm with the surrounding fluid environment. In sweat ducts, these proteins facilitate the flow of chloride from the sweat to the cytoplasm.

Defective CFTR proteins result to chloride ions being trapped inside the cells of respiratory airways and outside the skin. Negatively charged chloride ions tend to attract positively charged ions outside the cell and this includes sodium, the most common ion. Chloride and sodium combined produces salt, which is lost in high amounts in CF patients. Salt levels in cystic fibrosis also upset the blood’s mineral balance and often leads to fever and dehydration especially in hot weather.


Cystic Fibrosis and Salt Level Management

Managing symptoms and salt levels in patients with cystic fibrosis include medications, nutritional supplements and pancreatic enzyme replacements. CF patients need additional salt and fluid intake to make up for excessive loss of it. Any food that tastes salty like chips, fast food, frozen dinners are good sources of the mineral for CF patients.

Salt is essential for patients with cystic fibrosis for muscle function, nerve cell health and to improve the flow of fluid in cells. Since patients are losing higher than normal levels of it when they sweat, replacing this loss is very vital. Infants with cystic fibrosis must have salt added to their formula or baby food. In children, teens and adults, sodium chloride levels can be maintained by adding liberal amounts of the mineral to their diet, especially during hot weather. The doctor or health care provider can help patients determine the right amount of salt for them.