Tube Feeding with a Blenderized Diet of Whole Foods

Welcome to the March 2012 Carnival of Natural Parenting: Parenting With Special Needs

This post was written for inclusion in the monthly Carnival of Natural Parenting hosted by Hobo Mama and Code Name: Mama. This month our participants have shared how we parent despite and because of challenges thrown our way. Please read to the end to find a list of links to the other carnival participants.

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It won’t surprise most of you to know that breastmilk is the best first food for most babies. It is the perfect balance of fats, nutrients and immune builders for our newborn infants. Breastmilk is even more important for  NICU babies and infants with special needs. However the stress of dealing with the NICU and special needs can put a lot of stress on a mama. Adding to that stress the idea of using a breastpump every 2 hours, it can be overwhelming and exhausting, yet so vital.
When our middle daughter, Bella, was born we knew she was going to have some issues, but we didn’t know to what extent. After nearly two months in the NICU and hours of  speech therapy it became painfully obvious that she wasn’t going to be able to breastfeed.We had to deal with this fact and move on. Bella underwent surgery to have a g-tube. This is a simple tube that is inserted through an incision the abdomen. To feed Bella we attached a tube with a syringe filled with breastmilk to the little button in her tummy. I was diligent in using my breastpump and was able to feed her exclusively on breastmilk for the first year of her life.

Around that one year mark, we decided to look into supplemental foods to add to Bella’s diet. The doctors recommended Pediasure. I did a little more research and found that you could use whole foods in blended forms for g-tubes. Natural organic whole foods for my special needs daughter  made more sense to me.
I found a supportive group of parents on the Yahoo Group Blenderized Diet that were able to provide so much information. I contacted a holistic nutritionist and set up a meeting to discuss Bella’s dietary needs. Though she would not be covered by our insurance, she was well worth the money paid out of pocket.  I did have a dietician through our GI doctor, but they would only provide information in regards to calorie intake with formula. They did not support the idea of using whole foods in a blenderized form for g-tube patients. I was open in discussing this with my GI doctor but was surprised to learn he was not very informed on the topic and would just refer me to the dietician in the office. Some doctors feel that a whole foods blenderized diet can raise the risk for bacteria and infection, they are also concerned about food getting stuck in the tube. I felt these were small risks when compared with the benefits of a whole food diet.
I started slowly with a base of breastmilk. I kept a food journal and kept a regular schedule of what medications and supplements went with each feeding. I started by introducing 2 TBS of banana with 60cc’s of breastmilk, we then added foods like avocado, sweet potatoes. Our nutritionist recommended foods like beets, wheatgrass, apricots, quinoa, and goats milk. We used careful calculations figuring we needed 50 calories per pound with a goal of 650 calories per day. So each day started with me with my Vitamix calculating, measuring and storing her food for the day.  The Vitamix was an essential part of being successful with a blenderized diet. The food really must be broken down into a liquid form, not just any blender would do. When adding nuts, seeds and using fruits such as blackberries it was very important that there be no pieces that would clog the g-tube. To build Bella’s immune system we added supplements such as fish oil, colostrum, probiotics, and elderberry syrup. We always followed with water.
Since we were providing a nutrient rich blenderized diet using organic products were essential.
Later Bella was given a Zevex infinity pump for her feedings. This pump regulated the flow of the food. She had severe reflux and she needed to be fed very slowly. A large number of her feedings were given overnight. This pump was great. It made feeding Bella much more convenient and less time consuming. It worked well with the blenderized diet. I just needed to make sure it wasn’t too think and check on the consistency. The Zevex pump would be sure to beep and let me know if wasn’t pushing the food along properly.
I don’t believe a blenderized diet will work for every tube fed infant. It worked well for our family. Our daughter was gaining weight and growing well on the blenderized diet. It was not as convenient as pouring a bottle of formula into her tube would have been. So we constantly had coolers and ice packs with us. However having a child with any special need is never convenient. It’s more about making the best choices for your circumstances. Money is also an issue to consider. If you have to pay for your child’s G-tube formula it can be very expensive. However if your insurance pays for the formula, then choosing to feed organic, whole foods to your child is definitely more expensive.
I felt feeding Bella whole foods was really beneficial to her health. The life expectancy for a child with her disability of Walker-Warburg Syndrome is under one year of age. Bella lived for 16 months. Support is essential to be successful at feeding your special needs g-tube child a blenderized diet. Start with your doctors to get their viewpoint, then ask your dietician. If they lead nowhere, keep researching and find a dietician that will work with you and your family needs.

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Carnival of Natural Parenting -- Hobo Mama and Code Name: MamaVisit Hobo Mama and Code Name: Mama to find out how you can participate in the next Carnival of Natural Parenting!

Please take time to read the submissions by the other carnival participants:

(This list will be live and updated by afternoon March 13 with all the carnival links.)

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Attachment Parenting in the NICU

Welcome to the March Carnival of Natural Parenting: Natural Parenting Top 10 Lists
This post was written for inclusion in the monthly Carnival of Natural Parenting hosted by Code Name: Mama and Hobo Mama. This month our participants have shared Top 10 lists on a wide variety of aspects of attachment parenting and natural living. Please read to the end to find a list of links to the other carnival participants.
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There are many reasons that infants end up in the NICU. Some situations are preventable through proper nutrition and weight gain for the mother. Avoiding harmful practices such as drugs, drinking and smoking during pregnancy are key factors in avoiding complications for an infant at birth. Having a trustworthy birthing team that avoids unnecessary interventions is also important. Other situations are completely unavoidable. It is estimated that 10-15% of all newborns end up in the NICU. Caring for your infant in the NICU can be overwhelming. It is still possible to practice attachment parenting with your newborn in the NICU.
My sweet Bella spent the first two months of her life in the NICU. I thought I’d share with you some of the ways that we were still able to use some attachment parenting ideas and apply them to the NICU. Of course every situation is different. Some infants may only be in the NICU for a few hours, or a few days, others are in for a longer period of time. Here is some tested advice from our experiences in parenting in the NICU.

10: Be your child’s advocate. Clearly you won’t be able to be with your newborn at all times during their stay in the NICU. While this is heartbreaking you can still make the best of it and make your wishes known to the NICU staff. Immediately request that no artificial nipples be given to your baby and post signs stating that your baby is being breastfed and is to receive no supplemental feedings. Make the signs large, colorful and also have them put notes on all the nurses notes and folders. If you have a little boy you may also want to place signs saying he is to stay intact and not to be removed for circumcision.
9: Make use of the staff available. You should request a meeting with a lactation consultant as soon as possible.They can make your life a lot easier in the hospital as a nursing mother. Become familiar with the nursing rooms and supplies and ask for support. The lactation consultants in most hospitals can also give you free meal tickets for use in the cafeteria. This helps nursing mothers stay adequately nourished and hydrated during their long stays visiting their newborns. Do not hesitate to ask your nurses and doctors a lot of questions. I know during our stay there were certain doctors that intimidating, even to the other nurses. Don’t let this hold you back, it’s your child! Keep a notebook with you and write down your questions and concerns so when the doctors do their rounds you are prepared and get the correct answers.
8: Get to know the head nurse that makes the schedules. We had three nurses that cared so well for our sweet Bella, we are forever grateful to them. We felt more relaxed when we knew they were on duty. We quickly learned after meeting with the head nurse that made the schedules that we could request them on a daily basis. It was such a relief to us. Don’t be afraid to ask for certain nurses not be on rotation with your infant. Most of the NICU nurses were wonderful, three in particular were out of this world, and a small hand full of nurses were not welcome to take care of my sweet baby. There were a few instances that came up during our stay that made me feel uncomfortable and not happy about the care our daughter was receiving at the hands of a nurse or two. I don’t like being confrontational, but this was my daughter. Again I spoke with the head nurse and had these few nurses removed from her care. Your life is much easier when you are comfortable with those taking care of your baby when you aren’t there.
7: Practice Kangaroo care and baby wearing. Initially, we weren’t able to hold our baby. She had extreme hydrocephalus and was shunted the very next day. She had a long recovery. We held her tiny hand until the time we were able to actually hold her in our arms. We brought up kangaroo care, surprisingly this was something they were only slightly familiar with. This became evident when they dug out the dusty privacy screen from storage. It was clearly not used on a daily basis. I can’t explain how uplifting it was for me to hold my daughter for the first time skin to skin, let alone the benefits to her. Sometimes you can bring your sling or wrap in and cuddle up with your wee one even while they are attached to tubes and machines.

6: Pump, Pump, Pump. (and pump some more) within first 12 hours, then every 3-4 hours afterward. The breast pump was my very best friend because it allowed my sweet baby to receive the best nutrition possible. It was also my mortal enemy because pumping sucks. However, I stuck with it for the entire 16 months of her life. Using a hospital grade pump is essential to keep your milk supply up.
5: Use a pacifier. WHAT?! Yes, a pacifier does have a place. I am not normally an advocate for the use of a pacifier. However if you are separated from your baby they need an outlet for their sucking reflex. Ideally, you would meet all your infant’s sucking needs for comfort and soothing through breastfeeding. When this is not a possibility, a pacifier can help soothe and relax the newborn. Often premature babies can use a pacifier to stimulate their sucking reflex even while they are being tube fed. In our situation, the pacifier was a lifesaver for Bella. I didn’t use them with my other two children. Bella was tube fed during her whole life, so it met the need of her sucking reflex and soothed her.
4: Use wool filled doll to assist mother-baby bonding. Wool will naturally absorb mothers scent and when the doll is left with the infant it slowly releases the mothers’ scent to the comfort of the baby. The mom can tuck the wool doll, like Zmooz or Cozy, into her bra and sleep with it a few nights, then it’s ready to snuggle with the baby afterward.

3: Arrange schedules Naturally you’ll want to spend as much time as possible with your new arrival. Planning the most effective way to use your time is essential. No doubt you’ll have other responsibilities to deal with outside of the NICU, like your other children! This can make it very difficult to juggle your time effectively. I was able to be in the hospital for 3 days with my sweet girl, then I had to travel from home. At that point, I made arrangements for me to be at the hospital throughout the day while my oldest was with her Grandma. I came home in the evening and we enjoyed dinner together as a family. We spent a few hours in the evening as a family with big sister. After she was in bed my husband went to the NICU for the night shift, until early morning. This way we were able to spend some quality time as a family, and keeping some sense of routine for my Big Z. It also allowed each of us some time alone at the hospital with Bella and we were able to get some rest at home. It isn’t ideal, but it’s only a temporary circumstance.
2: Hold your infant as much as possible. This really relates to #7 with wearing your baby and kangaroo care. One lesson I learned from our stays in the hospital is that it never hurts to ask about holding your baby. They may be hooked to machines and in incubators, but if we keep asking eventually they’ll make arrangements for it to happen. Holding your newborn does wonders for you as a new mom, and for your bonding with your new infant. If one nurse says “no”, it’s not possible, ask the next nurse, and the next until you find the nurse that will work with you to find a safe way to hold your baby.
1: Love Yourself. You may not have been prepared for your baby to be in the NICU. Regardless of when you learned of your baby being in the NICU, it’s essential to take care of yourself during this time. Perhaps you are recovering from a Cesarean during this time. This is a major surgery with a painful recovery. You will need time to recuperate. You may feel guilt, shame, and major disappointment. You may also be overtaken by grief at the loss of your ideal birth. You may feel helpless for not “protecting” your new baby. All of these feelings are normal. You’ll be exhausted, hormonal and overwhelmed. It is essential to take care of yourself so you can take care of your baby. Get your rest, eat a diet full in fresh fruit and vegetables, drink a lot of water and find a support system. Let your family and friends help with siblings, meals, laundry, cleaning. You want your baby to be raised in an environment filled with love and respect, so start with yourself.

We have made a short video of our journey with our daughter Bella. It has recently been entered in the Neuro Film Festival sponsored by the American Academy of Neurology. We would appreciate you watching Bella’s journey and voting for her video. Please watch “Remembering Bella”. Voting ends March 8th at midnight.

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Carnival of Natural Parenting -- Hobo Mama and Code Name: MamaVisit Hobo Mama and Code Name: Mama to find out how you can participate in the next Carnival of Natural Parenting!

Please take time to read the submissions by the other carnival participants:

(This list will be live and updated by afternoon March 8 with all the carnival links.)

The birth of my sweet baby girl!

We arrived at the hospital around 7:30 Tuesday morning. I was nervous but had done my best to put my relaxation practice to work. We filled out a lot of paperwork and then were taken to our room. We waited an hour before anyone arrived. It seems there were some emergencies and our Cesarean was being moved to after 10:00. That meant more sitting and waiting, ugh!
Finally, they started to prep me for the Cesarean. I met with my nurse and the anesthesiologist. He was a very nice man and explained everything as he went along and answered all of my questions. Oddly enough, the hardest part for me was the epidural. I’m not sure what the reason for it was, but I became faint and had to ask to lay down during the middle of the procedure. I felt nauseous and anxious, I desperately wanted this just to be over with. My husband was there with me, all dressed in scrubs. After the epidural was in place and started taking effect we were wheeled into the operating room.
The atmosphere in the waiting room was very happy-go-lucky. The lights were very bright and the nurses were making jokes and teasing one another. We were asked for permission to allow students to watch the birth of our baby girl. Since she had severe hydrocephalus it was something that drew a crowd. We gave permission, and as a result, we had over a dozen people watching the birth.
As the operation started the anesthesiologist stayed right close my head and whispered to me at different points during the surgery to let me know what was going on. My hands were shaking terribly and I could only get the shaking under control for brief moments, it was a very odd feeling. My arms were pulled out to my sides and strapped down, my husband was to my right sitting on a stool holding my hand. As the Cesarean started my husband peeked up over the large blue drape they had in front of me, he would tell me what he could see. I felt nothing as they sliced open my abdomen and uterus. It was quite hard to believe it when in a few short minutes my husband told me I was cut open and they were getting ready to pull our baby girl out. It went by so quickly, I heard a weak, faint cry as they peaked my daughters head over the drape for me to see her. I was thrilled to see her small little face. I was also thrilled that I heard her cry even though it was small and faint.
At that point I was asking my husband about the condition of our daughter, I wanted whatever information I could get. A slew of nurses and doctors from Children’s Hospital were now in control of her care. She was put on a ventilator because her head was so large that it closed her breathing passages when she was laid down.
I was sewed up in a few quick minutes then wheeled back to the room to wait. Later they brought our newborn daughter in for a few quick minutes in an incubator. Her big sister got to take her first peek and say a quick hello.She was then whisked away to Children’s Hospital where she would begin her long journey in the NICU. I honestly don’t remember too much after that.
Later that evening I was taken to a different room for recovery. I remember this point, I was extremely nauseous and continued to vomit for the next several hours. I was completely miserable. I was given anti-nausea medication, but I wasn’t able to keep it down. Later I had a shot that helped. It was so painful to be wretching and vomiting when you just had your stomach muscles and uterus cut open. My husband went to check on our baby girl at Children’s Hospital. I had a close friend there with me to give me a cool washcloth on my forehead and to set with me. I was glad for the day to be over, I wanted to rest. I felt I couldn’t even keep my thoughts straight. After many long and worrisome months, our baby girl was finally here!