Showing posts with label elixir. Show all posts
Showing posts with label elixir. Show all posts

Sunday, September 13, 2009

Breastfeeding

The time has come to wean Sarah off breastfeeding. This is actually rather abrupt due to the requirement of myself needing to start medication to kill tuberculosis (it's currently dormant so I'm not contageous). Jonathan reminded me of some of the breasfeeding ups and downs we've had during these last 13 months or so. I realized I hadn't documented any of my breastfeeding woes and successes.

I did mention that after Sarah was born she seemed to latch on fine but that due to jaundice there were expectations that Sarah would feed often and quickly and she just didn't seem to want to be on that schedule. During our stay in the hospital the three days after she was born my focus was feeding Sarah. She was in the NICU so I was unable to practice changing her diapers, putting her to sleep, soothing her when/if she was upset, etc.

When we brought Sarah home, that first night was long (it's embarassingly comical now). I was basically irrational and super paranoid of harming her. Everytime I tried to put her down while she was sleeping, she would wake up. I ended up sitting in our recliner holding her the whole night. I wouldn't let myself go to sleep because of all the warnings that you could smother/kill your child if you sleep with them. I realized that in the NICU I never got to practice swaddling her and putting her to sleep because the nurses did that. Sarah always seemed more than willing to sleep in her little warming bed in the NICU. I decided that because I was having no luck putting her down to sleep I would just stay awake until the morning while holding my sleeping baby and then I would have my in-laws watch her while I slept. During this time the easiest thing was the breastfeeding. My milk seemed to have come in and I realized this was the only thing I practiced while in the hospital with her.

When she was a few weeks old, the metabolic doctors basically said my breastmilk contains the fat that could (in layman's terms) poison her cells and cause her to stop functoning and die if she has the disorder that she was flagged as possbly having by the NBS. I was told to stop breastfeeding and feed her the elixir. The elixir included some long-chain fats because the human brain requires it for development. Instead of using formula in the elixir I pumped, or expressed, my milk so as to keep my milk supply flowing because I was determined to breastfeed and I wanted to be able to still breastfeed if Sarah's NBS was a false-positive. I stored up lots of breastmilk in those days. Our freezer was stuffed with breastmilk (an overstatement, but it felt that way when the occasional solid bag of breastmilk would fall out on us when we opened the freezer door).

It was during this time that I had some emotional breakdowns because at that point breastfeeding was my most confident area of parenting. That was the thing I had down, and I felt like I was being robbed of it. I remember in particular watching the "First 5" video on basic infant care that was given to us when we left the hospital. Phylicia Rashad (the mom from the Cosby show) was on the video talking about the benefits of breastfeeding and how breastmilk was the best thing for your baby - I broke down because of the thought that my breastmilk could kill Sarah and it wasn't the best thing for her.

There was another time when Sarah was upset and I knew that breastfeeding her would calm her down, but I knew that I wasn't supposed to. It was during the time when I was supposed to alternate between breastfeeding and bottle feeding her elixir.  I can't remember exactly what the issue was but I was extremely upset and it ended with Jonathan just talking me into breastfeeding Sarah and it calmed both of us, Sarah and me, down.  I think it had to do with me once again fearing that by breastfeeding her, it could kill her, but feeling that breastfeeding was exactly what I was supposed to be doing. 

Due to the requirement that Sarah needed to eat every three hours and, later in her first year of life, every five hours, there were some stressful experiences when she just wasn't wanting to eat and so I would fight with her to eat.  The "fighting" looked like me basically trying to get my boob in her mouth and coaxing her to suck all the while she is flailing her limbs and turning her head away from the food source.  Those times usually ended with me giving up and figuring that she had enough energy to survive a little bit longer and I would just be aware that at the first sign of hunger she needed to be fed.  There were other times when she would bite me and so the breastfeeding session would end prematurely in order to teach her that biting her food source was unacceptable.

Through many of these situations I learned the importance of handing over my anxiety to God and asking for peace unless I needed to be worried.  My trust in God increased greatly during this time.  I learned that I had little control.

Our last breastfeeding sessions took place after Jonathan and I confidently felt that Sarah didn't have CPT II so I was feeding on demand (as opposed to scheduled feedings).  The last two days included about 4-6 relaxing and beautiful times of breastfeeding.  Our routine included Sarah twirling my hair in her fingers while we looked at each other, and often she would fall asleep.  I've heard some people talk about breastfeeding as though they LOVED it and found it extremely spiritual, I am not one of those people but I enjoyed that it was something special that Sarah and I shared together and it connected us.     

Monday, May 25, 2009

MCT Oil and Plastic

November 2008

When we were told how to make the Elixir mixture the dietitian mentioned that the MCT oil breaks down plastic so we would need to dispose of the plastic syringes after a while of using them to squirt the MCT oil into the Elixir mixture. I asked about what type of container we needed to store the mixture in during the 24 hours it is allowed to sit in the refrigerator. She said for that amount of time a plastic container would be fine. So for about three months we were storing the prepared elixir in plastic containers in the fridge and then using plastic bottles to feed Sarah. From our understanding, according to the dietitian all of this was allowable.

At a certain point people on the FOD online support group were discussing thermoses and what kinds of liquid with MCT oil could be stored in for their child to take to school. I commented about what our dietitian had told us. Someone politely pointed out that because the MCT oil can break down plastic that they didn't think it was safe to store it in plastic at all. This got me questioning whether the dietitian had instructed us correctly.

I decided to contact Nestle (the maker of our MCT oil) directly and ask them what was acceptable. This was their response:

"Lisa, Thank you for your e-mail. The MCT® Oil and formula mixture needs to be stored in glass and fed with non plastic utensils such as a glass bottle. In regards to storing the product in a thermos check with the manufacturer of the thermos as some are stainless steel on the outside but have a different material on the inside. The MCT® Oil and formula mixture needs to be held under refrigeration in accordance with the time limit (24 hrs) as specified by your dietitian. Best wishes from your friends at NestlĂ© Healthcare Nutrition."

My reaction that I posted on the support group on November 10th, 2008: "Now I'm off to the store to buy glass bottles and containers. I wish I would have clarified this 3 months ago. I'm not even going dwell on the possible damage done to my daughter. And I forgive the dietitian for telling me the wrong information but I think I will call and nicely inform her that, according to the manufacturer, she is telling patients the wrong information."

We ended up needing to stop using all the plastic bottles we had purchased (which were the same Medela [read as "not cheap"] bottles used with the breast pump). Luckily the only glass bottle I could find without plastic parts inside the bottle were Evenflo Classic and you could get a 3 pack for just over $5. If only we had known . . . ah, the money we could have saved [sigh].

Because of our insurance switch, we no longer had the same dietitian. This experience helped to remind me that medical professionals are just people and they don't have all the answers. It's important to check information with the manufacturers. If I have any questions now about things I am giving to Sarah, I call the manufacturers.

Wednesday, May 6, 2009

LipiStart

February 2009

When Sarah was 6-months-old, the dietitian wanted us to try weaning Sarah off the elixir and on to Lipistart. This change was not due to Sarah's age but because Lipistart was a newer product and would be easier to use. The dietitian said that other dietitians that collaborate over the Internet were saying that Lipistart was working really well.

Here are my messages to the dietitian because she wanted to know how things were going:


2-6-2009

"Well, I tried just straight up Lipistart and Sarah ate 3 ozs. and then stopped and started fussing. I tried again with the same results. Then I tried a third time (each time was a different feeding) and she only ate 1 oz. then I mixed it with elixir so it was half and half and she drank most of it. So I am now feeding it to her 1/2 and 1/2 and will slowly increase the Lipistart in the mixture over the next few days and see how she reacts. :~)"

2-11-09

"Today, Sarah "chugged" her first full Lipistart bottle. Yeah! :~) My mom said she seemed gassy afterwards but I am thinking that could be because we just switched her over to the fast flow nipples because it seemed like the Lipistart might not be flowing out of the nipples as easily as the elixir did.

"As to her usual volume question she was drinking the same volume on 1/2 Lipistart and 1/2 elixir. I have noticed that her "usual" is changing some because of the solid food. She is drinking slightly less but not enough of a difference that I got concerned. Her usual now is anywhere between 4-8 ounces at one bottle feeding time. I've found it tricky, at times, to schedule the bottle feedings and solid feedings so that she eats a good amount at each. She seems to really like solid food and on one specific occasion refused her bottle but ate solid food and then drank a small amount to wash it down. I figure we can discuss that more at our appointment on the 24th."


It took us about a week to switch Sarah over to all Lipistart. In regards to the bottle nipples, we switched her back to slow or medium flow. While the Lipistart is thicker in consistency than the elixir, Sarah seems much more gassy on the fast nipples.

Lipistart is much easier than the elixir because Lipistart is just one powder. It's like normal formula just with only medium-chain fats instead of long-chain fats. It contains MCT in powder form and this makes it so we can use plastic bottles, if we want to. We can make the amount of bottles we use in a day (3) and store them in the refrigerator for up to 24 hours. When it is time to feed Sarah we just take out a bottle and warm it up.

Wednesday, April 29, 2009

Starting Solid Foods

At 5-months-old we started Sarah on solid food. We started with the basic rice cereal. I just mixed it with breast milk or elixir and then later, Lipistart.

Sarah needs to be on a low-fat diet in case she has CPT II. This means no avocado, which is a recommended soft food for "normal" kids because it is good brain food. Other than that, I didn't find many limitations for my choices of solid foods to puree.

Foods Sarah has been introduced to:
rice cereal
oatmeal
peas
carrots
green beans
banana
mango
papaya
applesauce
pears
sweet potatoes
zucchini
sweet corn
peaches
kiwi (no seeds)
cantaloupe
watermelon (seedless)
extra lean turkey
extra lean ground beef
lentils
cauliflower
broccoli


Finger foods:
non-fat Kraft cheese slices
wheat bread pieces (sometimes toasted)
Gerber puffs
Gerber yogurt melts
Cheerios
Rice Krispie cereal
celery sticks for her to chew on
banana slices
mango pieces
pasta noodles
Gerber apple flavored Wagon Wheels

Tuesday, April 21, 2009

Constipation Frustration

This was something I posted to the FOD site on September 9, 2008. It was my first post to the support group:

"Hello, My daughter is 2 months old and was flagged by the newborn screening as possibly having CPT2. We are feeding her a mixture (we call it "the elixir") of 50 grams Polycose, 10 grams ProViMin, 7 mL MCT oil, and water to make 11 ounces. One feeding we give her the elixir and then within 3-4 hours later I breastfeed, that is our pattern. Anyways, I think the elixir makes my daughter constipated. I'm thinking maybe it has to do with the type of iron in the ProViMin. On the elixir diet she can go 1-2 days without having a bowel movement. When I breastfeed alone she has a bowel movement basically every time she feeds or frequently throughout the day. Twice we have taken her off the elixir diet and just breastfeed for 2-3 days and after about a day she becomes regular again. When I have mentioned this to doctors and dietitians they either seem to ignore my concern or claim the elixir can't do that and recommend I ask my pediatrician. Considering I can't feed her just breast milk for fear of what too many long-chain fatty acids might do to her, we just feel like we have no options. I will follow the dietitians advice and ask my pediatrician at her appointment on Monday.

Anyone notice a similar problem or have have any thoughts about my hypothesis?"


When I asked her pediatrician, he said that a normal baby can have 1 bowel movement after every breastfeeding or they could go up to 7 days without a bowel movement (seems like too long in between for my comfort level). He said what matters is the consistency of the poop. If it is really dry and hard then that means Sarah is constipated. I stopped worrying then because the consistency was good. About a month or two after this post on the support group, Sarah seemed to have regular bowel movements.

*I wonder how Sarah will react when she is older if we ever tell her that I discussed her bowel movements on the Internet. :~)

This is a picture of the look Sarah would make when she was pooping. We called it "Blue Steel."

Thursday, March 26, 2009

Can we function? - My breakdown

August, 2008

Jon was working as a teacher. His first day of school was the day Sarah was born (he took the day off work :~) ). I know how stressful and tiring teaching can be. I did not want Jon to be too sleep deprived considering he needed to do well at his job and I wanted him to be able to drive safely to work each day. Jon, being the great husband that he is, would still come home and help clean the house and spend time bonding with Sarah and learning how to care for her.

Treating Sarah, due to the possibility of CPT II, required us to feed her every 3 hours. This is an average time between feedings for a newborn. It is usual for new parents to be sleep deprived. We knew this. The general advice is to sleep when your baby is sleeping.

Sarah seemed to wake whenever I tried to set her down. Sarah also seemed to know when I was about to eat. I would finally get her to sleep and not in my arms. I would prepare my food and as soon as I was about to eat, she would wake up. It happened often (seemed like every time I tried to eat). Even though I was desperately tired and knew I needed to eat (I didn't usually feel hungry), I saw the humor in the situation.

It also seemed that as soon as I was able to sleep, Sarah would wake up. I did not find this humorous.

I was determined to breastfeed Sarah. There was still the chance that the Newborn Screening was a false/positive and so I didn't want my breast milk to dry up. This required me to pump my breast milk in order to mix it into the elixir. I had only purchased a hand breast pump considering I was going to stay home with Sarah I figured we would only need to have extra breast milk for weekly date nights.

I realized I wasn't finding time to eat or time to sleep or both. I wrote out all that was required of me and the amount of time it usually took to accomplish each task to see if somehow I could work out a system or schedule to get everything done.

Daily Requirements
  • prepare elixir
  • get dressed - brush teeth, brush hair (at least)
  • tummy time for Sarah
  • *sleep some*
  • *eat more calories than normal to promote breast milk production*

Every 3 Hours

  • Heat bottle
  • Wake-up Sarah
  • Change her diaper
  • Feed Sarah
  • Interact with Sarah while she is awake
  • Try to get Sarah to fall back asleep and lay her down without her waking-up
  • Pump my breast milk
  • Store breast milk and clean the bottles
  • *Eat and drink something*
  • *Sleep until next feeding round (unless at this point Sarah was awake, then I needed to take care of Sarah)*
I can't remember the timing of everything but when I was finished with the list, I realized that I could not function. There wasn't enough time to get everything done. I called Jon at work. I was crying and trying to explain the process I had gone through to come to my conclusion. Jon got the next day off work so we could see if there was a way that we could function under the circumstances.

We ended up buying enough Medela bottles so I could pump with them and use them to feed Sarah the elixir without needing to clean them during each three hour allotment of time. Jon took on the role of nightly bottle cleaning duty. He also ensured that Sarah did tummy time to help her get stronger, especially if I hadn't been able to during the day. We purchased microwave meals so I could easily and quickly prepare food for myself during the day. We also purchased a thermos to hold hot water so that I was able to feed Sarah a bottle away from home. The gift of no longer being so confined was very freeing. I searched out a way to get an electric breast pump for free until we found out whether Sarah had CPT II.

We admitted to close friends and family that we were struggling. I learned to ask for more help. I learned to be more dependent and not to fear being an inconvenience. Brian and Kerry were a great help in making sure that I remembered to eat and was able to find the time while Jon was gone at work. My sister gave me the best birthday gift of caring for Sarah overnight while I caught up on sleep (and got totally engorged but it was well worth the rest :~) ). There were quite a few times that I would go to my mom's house to sleep while they cared for Sarah.

It was a rough time but, by the grace of God, we survived.

Wednesday, March 18, 2009

The Elixir

August, 2008

At our first appointment at the metabolic clinic, the dietitian gave me a recipe for the mixture we were to feed Sarah so she could be on a low-fat diet. The mixture wasn't a formula, so we couldn't call it formula. We called in a few things that first week but we finally ended up calling it The Elixir.

The Elixir Recipe:
Breastmilk - 150 ml
Polycose - 50 gm
ProViMin - 10 gm (requires a prescription; she said that some parents find making it a paste with a small amount of water helped it mix better - and she gestured with her hand like making it a paste in the palm of your hand)
MCT Oil - 7 ml (breaks down plastic)
add water to make a total of 16 ounces (she said boil tap water to purify it)

Along with the recipe we were provided with printouts of where, online, we could purchase the needed elements. The dietitian provided us with a scale, 4 or 5 plastic syringes, and a triangular shaped plastic beaker. We were told that the MCT oil breaks down plastic so we would need to throw a syringe away when we noticed the numbers wearing off, and yet that it was OK to store the elixir in plastic containers in the refrigerator for up to 24 hours (we later found out this was not true).

I left our appointment thinking that if I didn't care for my baby correctly, as specified, she could die or have a toxic build-up of fat in her cells. This created in me an urgency to try to purchase and receive these elements and all that was needed as quickly as possible.

It was difficult to not be anxious during the 4-5 days while waiting for all the stuff to arrive at our house. I would try to wake Sarah every 3 hours to feed her but many times she just wanted to sleep and was difficult to get to feed. I would get stressed out because she wasn't eating and maybe she was lethargic but it just seemed to me like she was normal baby tired. I didn't know how to tell the difference. Not knowing, stressed me out more.

When the elements finally did arrive, I had to start pumping my breast milk so it could be added to the mixture. Luckily, I was overflowing with breast milk so expressing my milk wasn't difficult.

The first time Jonathan and I tried to make the elixir, it ended with me crying because the elixir was so bubbly and clumpy it didn't seem like a mixture and Jonathan angry that the dietitian didn't know what she was talking about because her instructions seemed impossible. Making the ProViMin into a paste in your hand and transferring it to the mixing container was impossible. The triangular beaker was difficult to whisk in because of the corners. The more you whisked the mixture, the more bubbly it became. All this topped with exhaustion and thinking our daughter could die if we didn't get this right, made our first experience disappointing.

Jonathan was terrific and pressed on to try to figure out a solution so that the elixir seemed edible, well, drinkable. Luckily the nipple of the bottles prevented big chunks to get through so Sarah never choked on the elixir. There did seem to be a sludge left at the bottom of the bottle after Sarah had finished eating. The elixir also smelt bad and caused even worse smelling spit-up.

Secret to making the elixir:
It took us about three months until we figured out that if you mixed the dry Polycose powder and the dry ProViMin in the mixing container before adding the liquid, the mixture was much less clumpy. When liquid was added, it helped to add just a small amount at first and make the Polycose/ProViMin mixture into a paste in the mixing container before adding the rest of the liquid.