A few months ago my friend Rebecca called me and said "I have an idea." She wanted to create a podcast about Down syndrome. We decided to publish the first episode on October 21st, for Down Syndrome Awareness Month.
For our first episode I interviewed our friend Elizabeth Jeub on her project "Know Us", a photo and story essay booklet for new parents in the Front Range Area. We talked a lot about the inspiration for her project, our experiences receiving a Down syndrome diagnosis, and what we wished had been done differently.
Today we published our second podcast, an interview with Rebecca as she talks about preparing to teach her first birthing preparation class specifically for parents who have received a diagnosis.
Please have a listen and share your feedback with us here or on t21action.weebly.com.
This simple, natural fortification method for a high calorie infant formula helped my son Benny stay healthy and gain weight before his open heart surgery at four months old.
Because my son had congenital heart failure due to his complete av canal defect he stopped gaining weight when he was about 6 weeks old. This was a terrifying time for us. We were unable to find a bottle he would take, and I was reluctant to give up breastfeeding, so I knew I had to find a solution that would allow us to continue breastfeeding while helping him gain the weight that he needed.
Since he was burning more calories just with the effort it took to breathe, he needed a higher calorie milk. In order to keep him at the breast, I nursed him every 2 hours for 20 minutes while using a Supplemental Nursing System (SNS) filled with high calorie milk. We started at 24 calories and eventually increased to 26.
Eventually we were able to get him to take a bottle by using a preemie nipple on a Dr. Brown bottle. In between nursing he was given as much as he could drink of an 8 ounce bottle of fortified milk. Often I could not pump enough milk in addition to what I was breastfeeding, so we supplemented with the goats milk formula listed in the table above.
Using maple syrup to fortify breastmilk and the goats milk recipe was recommended to me by a highly respected Naturopath who specializes in the treatment of children with Down syndrome. She had used this with her own son who has Down syndrome as well as with other patients. At first I was hesitant to use maple syrup, but she pointed out that in comparison to the ingredients in commercially made formula, organic natural maple syrup is much easier for a young baby to digest.
This turned out to be very true. My son became constipated and uncomfortable when we tried using any kind of commercial formula, which backfired on his weight gain since he wouldn't want to eat when he was constipated. With the maple syrup and goat milks formula my son had no health problems caused by the fortification.
I also worked with a doctor who specializes in high risk infant feeding, and that is how we came up with the system of feeding him every 2 hours for only 20 minutes at the breast with fortified milk in the SNS, and fortified bottles in between.
It was a lot of work, but I'm so glad that we did it. My son was a healthy 11 pounds when he had his surgery at 4 months. The surgery went beautifully and he returned to exclusive breastfeeding as soon as he was off the ventilator after surgery. His entire hospital stay for the surgery was only 5 days and we have had a beautiful breastfeeding relationship ever since.
If you think that this might work for you, please talk to your doctor first. My cardiologist made the calorie recommendations and was on board with everything that we did to help my son gain weight. This was critical going into surgery.
I hope my story can help other parents and medical professionals who are looking for alternative ways to fortify babies milk in order to help them gain weight. Please feel free to comment here if you have questions or would like to share your own method for helping babies gain weight.
Here are some pictures of our journey. As you can see, we started off in a very scary place, and ended up in a very happy one.
It's hard to find time to write these days, and I'm participating in "National Novel Writing Month" throughout the month of November.
I've been working very hard keeping my two children alive. With chasing after my 14 month old and keeping up with all of my 12 year olds activities, my time to sit down and write is already very limited, so I will be restricting my writing to my novel until November ends.
Thank you for your support and understanding. Feel free to harass me if you notice me posting on Facebook, writing unnecessary texts or emails and other activities that indicate that I'm slacking off when I should be working on my novel.
I'll see you in December.
Since becoming a mom to a little boy with Trisomy 21 I have written a lot about Down syndrome and disabilities. I am a storyteller, wife and mom to a teen and a toddler. Life is busy!