This is a copy of a blogpost from our personal blog, KnowingNorrah (http://knowingnorrah.blogspot.com). Since so many WHS moms have asked me about Norrah’s diet I thought this was an important post to put on the Wolf-Hirschhorn Blog too!
FYI: at most recent weigh-in our 20-month-old Norrah is 24+ pounds and 33 inches tall.
“To be honest, I have no idea what I did to get Norrah to become so chubby. I like to think that I did NOTHING at all and God just worked his wonders on this area of her development. I mean – I doubt that I did anything differently than the other hardcore, determined-beyond-reason WHS Mamas (and Dads) out there. But, for what it is worth (which may be just about NOTHING) I will start from the beginning:
Norrah was noted to have IUGR (intrauterine growth restriction) during her time in the womb. But, the doctors were stumped because her head and her belly were normal size and the specialists made mention quite a few times during ultrasounds that she was not lacking baby chub despite her small measurements. I think ultrasound has to be taken with a grain of salt. Norrah was born 2 weeks early at 6 pounds 3 ounces and 19 inches long. So, was she really ever small for gestational age – considering that her weight and length were normal at birth? Ultrasound predicted one thing and real life revealed something else.
Anyway – she had a great suck immediately but I did have to use a nipple shield to nurse her. Not sure if that was a result of some part of her anatomy or some part of mine but in any event it seemed to do the trick and I nursed Norrah for 3-4 months after which time I pumped and she still received breast milk exclusively until after 6 months. I felt like it took FOREVER for Norrah to nurse – it was certainly not a “fast food” situation like so many other breast feeding relationships I saw around me. I took her to a lactation specialist who assured me that she was getting plenty of milk. Plus… (anyone who is easily disgusted can stop reading right now and start at the next paragraph – don’t say I didn’t warn you!!!)… plus, my milk was the fattiest most disgusting solution I have ever seen. I am sure my not-so-healthy eating habits had something to do with it. I mean this stuff was like pure butter. When I would freeze my milk the fatty layer was at times equal or bigger than the milk layer and let’s not even get started on how this “liquid” RUINED my clothes. You know how when you spill oil on something that no matter what you do there is always a grease circle where the spill occurred that just will not wash away? Imagine most of my post-baby shirts with two well-placed grease circles. Ewwww! Needless to say – my milk was awesome stuff for a supposedly growing impaired child.
Norrah stayed on the small-side of the growth chart at around 20th percentile for weight for much of her first year (sometimes higher and sometimes lower). But still she was on the normal growth chart. In the early months her reflux arrived in full-effect and she vomited ALOT – puddles and puddles. I was a crazy woman and if she barfed I refed her immediately. I just could not fathom having her lose those calories. Ken often tells me that I spent at least the first 6 months of Norrah’s life feeding her. I don’t remember it quite like that, but I do know that I always tried to replenish what she lost and I did spend a great deal of time being a “milk machine.”
After six months Norrah began to eat rice cereal, pureed foods and Similac Allimentum. The “solid” foods were very small amounts (less than a 1/4 c.) and the Allimentum was probably 20-30 ounces a day. She just kept growing. Eventhough she also kept barfing – she kept growing.
Once Norrah was a bit over one year her doctor and I discussed the idea of putting her on Pediasure (higher calorie, higher nutritional value). Though Norrah’s weight was normal for her age (and well above the WHS norm) her eating habits were not that of a 1-year-old because she was still eating only small amounts of pureed foods and she had gagging and other oral sensitivity issues. Neither one of us wanted Norrah to begin to lose weight (or what’s worse, muscle mass) during the course of time it would take for her to overcome her feeding issues. So after 1-year-old Norrah began taking Pediasure (20-32 ounces a day).
Slowly, thanks to a wonderful occupational therapist, a determined set of parents and an even more determined self-will and love of food Norrah’s eating habits have greatly improved and her oral sensitivities have greatly diminished. That means that these days she is eating more from a spoon or by her own two hands along with about 26 ounces of Pediasure to supplement. Her percentile on the “normal” growth chart has increased for weight to 35% and her height increased to 55%. She is one solid beefcake!
On a normal day her diet includes:
Breakfast -1/4 c. baby oatmeal (and just recently regular oatmeal) with sugar and cinnamon, 2oz. pureed fruit with crackers crushed and mixed in to increase texture, yogurt or pudding, and 8 ounces of Pediasure.
Lunch -1/4 c. baby rice cereal (or oatmeal) mixed with high calorie salad dressing, 2 oz. pureed veggies with crushed crackers, noodles (ramen) or american cheese, and 6 ounces of Pediasure.
Dinner – 4 oz. pureed meal (Apples and Chicken, Turkey and Rice, etc) with crackers, some bites of whatever Mommy is eating, and 6 oz of Pediasure.
Bedtime – 6 oz Pediasure.
Also throughout the day Norrah has been snacking on cheese curls, french fries, pretzels, cheese, Oreos, pickles, crackers, batter of various sorts from the bowls of her baking mommy and whatever else she can get her paws on. Plus, she loves to take sips of juice or milk from a cup and she goes wild for lollipops! The girl just LOVES to eat.
So, that is the long answer to the infamous question “WHAT ON EARTH DID/DO YOU FEED HER?” Really, I don’t think that what I feed her has much bearing on her BEASTLY SIZE. Instead, I think that like all aspects of Wolf Hirschhorn Syndrome the prognosis for growth and size is not all-inclusive. I think that with feeding and now even barfing we are seeing breakthroughs due to the fervent prayers of so many people! I think that Norrah has an amazing occupational therapist who is teaching her to enjoy eating and to own the process by feeding herself. Additionally, I know that aside from the 46 genes (per her chromosomal analysis) that are missing from the cells in her body, Norrah has hundreds of thousands of other genes from her Daddy and me – and we are both very tall and very much “in love” with FOOD. I am certain she has plenty of those food-loving genes and they are helping her on the journey to becoming a very “average-size” little lady with very above average sized thighs!”
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Lauren- amazing post. Thanks a million for sharing. This will be great information for many people.
We had a similar experience trying to keep food in Kendall. Vomiting 3-4 times/daily and we are still trying to figure it out as she is down to about once per week. I am surprised that after such a wild ride that Norrah is holding her weight so well.
What a commitment…
wow! your little gals diet sounds much like our Anthony’s diet, but he is five and it seems like once we get it down to a science he decides to change his mind and refuse to eat what he has jused loved for months. We are currently feeding him a little bit of powdered chicken or beef broth with about a cup of water microwaved for 30 seconds and then enough baby oatmeal or rice cereal to make it the texture he likes. He still likes yogurt and pediasure so not sure why he turned up his nose at the sweets in his cereal.
I am going to be a “copy-cat” 😉
I can relate to your story 🙂 My son started to get back on track once the paed recommended Pediasure twice a day. He’s now 5, very healthy and – such a relief – not as picky as he used to be when he started taking this supplement!