Eat Happy!

Eat Happy!


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Thursday, January 17, 2013

Growth Assessments

Ian recently had a consultation in Manhattan for Russell-Silver Syndrome. While I want to write about that, I discovered that what I was writing had no basic foundation without talking about growth in general first. So, here goes..............


When Ian was born, he was 930 grams, which is .93kg. This equates to two pounds and one ounce. To give you a frame of reference, an average baby born at 40 weeks, is typically around seven pounds and nine ounces, give or take some. It equates to about 3500grams, or 3.5kg. However, a baby born at 29 weeks, such as Ian is estimated to weigh two pounds eight ounces or so. This is 1153 grams or 1.153kg. Clearly, Ian was smaller, even for being born at 29 weeks.

Ian, One day old

The same can be said of length. A full term baby of 40 weeks would be expected to be around 20 inches, which comes to around 51cm. A 29 weeker would average 15 inches or so. That is just over 38.5cm. Ian was 34cm, which is about one-tenth shy of 13.5 inches. Once again, notably smaller.

In my opinion, it is much easier to see numbers when they are listed separately.

40 weeks 7 lbs. 9 oz.
29 weeks 2 lbs. 8 oz.
Ian 2 lbs. 1 oz.

40 weeks 20 in.
29 weeks 15 in.
Ian 13.5 in.

*These figures are estimates based on averaging various site’s numbers. The values for the “averages” and “guidelines” are not set in stone for taken from a perfect medical profile.

Because of Ian’s weight and length at birth, he fits into several “growth” categories, all having their own sales. Ian is Small for Gestational Age (SGA), Extremely Low Birth Weight (ELBW), and Intrauterine Growth Restriction (IUGR). While all revolving around being “smaller” than expected, they all have their different meanings and references.

IUGR and SGA are very easily confused.

IUGR refers to “something” that is causing the baby to not grow as they should. It signifies poor growth in the womb and means the baby is below the 10th percentile. IUGR typically signifies some type of pathology...... something isn’t going right and is causing the condition. SGA on the other hand describes ANY baby who is below the 3rd percentile. SGA babies can be IUGR babies, but not all of them are. SGA could simply mean that you grew a small baby. Both conditions can be identified during pregnancy. SGA babies come with their own sets of issues and concerns. Ian embodies quite a few of them.

The MAGIC Foundation has excellent information on these conditions.

Certain indicators and/or health conditions can bring on IUGR. Some contributors to IUGR are: decreased oxygen availability and nutrition due to high altitudes, multiples, problems with the placenta, preeclampsia and/or eclampsia. Chromosomal abnormalities and infections can also cause IUGR. Risk factors can include alcohol abuse, drugs, smoking and poor nutrition. However, clotting disorders, high blood pressure, heart and kidney disease are also considered.

Me, 28 weeks pregnant, 7 days before Ian was born

IUGR can be either symmetrical or asymmetrical. Symmetrical implies the baby is proportionately small all over. Asymmetrical IUGR means that the baby is undernourished and is focusing all of it’s growth on vital organs, such as the brain and heart. Some of the liver, muscles, and fat are sacrificed to redirect growth. The head is of normal size. Asymmetrical SGA babies usually have small abdominal circumference from smaller livers, thin skin from lack of fat, and skinny limbs from reduced muscle mass.

It was noted that Ian was experiencing IUGR at the level two anatomy ultrasound at 20 weeks. The previous ultrasounds were six, ten, and twelve weeks...... all showing no evidence of IUGR. Ian’s IUGR was asymmetrical. His head always measured above the 50th percentile, but his abdominal circumference and femur length were almost always below the 20th percentile. As the weeks went by, Ian was monitored more frequently by ultrasound. As my HELLP syndrome gradually came into existence, Ian’s ultrasounds showed decreased growth. IUGR can lead to fetal mortality if the brain is compromised. Ultimately, as my HELLP became severe, in addition to maternal mortality risks, Ian’s risk was great as well.

It wasn’t until recently that this all began to come into the light. As we discussed beginning growth hormones based on IUGR and SGA diagnoses, the terms came into the light a little bit more. As an IUGR and SGA baby...... and child...... Ian’s organs and his stature are compromised. Growth hormones will give him an extra chance for his body to do more than it can on his own. He will begin his growth hormones on Friday.

SGA children typically catch up in growth by age two. About 10% of children do not make-up for this . Ian, of course, is in this group. For most of these children, growth hormones can help accelerate that growth. Unfortunately, the IUGR and SGA keep Ian from growing in all areas, not just stature. Ian’s lungs, digestive tract, and other organs will hopefully be able to grow and mature the way they should. Since Ian has chronic lung disease, any extra help is worth a try.

This wan’t an easy decision for us to make. While we would love for him to have the added assistance and extra height, it is a nightly injection with a needle. As a two year old, Ian is *very* tolerant of what needs to be done. He will even sleep through his glucose and ketone checks. Originally, Tom and I believed the growth hormone “pens” were the same type of sharp, quick stick. Once we started learning more about them, we discovered it was an open needle that needed to remain under his skin for at least six seconds while administering the dose. I do believe over time he will become accustom to the routine.

As a dental hygienist, I am quite familiar with needles and injections. The higher the “gauge” number, the thinner the needle. As a point of reference...

Tongue piercing jewelry barbells are usually 10-14 gauge

Belly button piercing jewelry is typically 14-16 gauge

Ear piercing guns use 20 gauge needles

Dental needles typically run 27-30 gauge

Most glucometer lancets are 28 gauge

Ian’s growth hormone needles are 32 gauge. Hopefully, this will be easier for him to get used to since he can already sleep through the 28 gauge.

Endocrinologists vary greatly on the recommended starting dose. While I won’t be posting his starter dose, I can tell you that the doses are typically based on milligrams per kilogram, per week (mg/kg/wk). The pens have dose markers on them so you can “Set” the dose needed. Each pen contains a certain amount of milligrams. Ian’s pens will be 10mg each. As each dose is administered, it is simply subtracted from the total in the pen, 10mg. When the pen is empty, another pen picks up where the previous left off.

They make the pens super cool so kids, teens, and adults simply are stabbing themselves with blue pens. Ian’s pens are norditropin by Novo Nordisk.

They even have stickers and charms you put on the pens to make them more fun.

norditropin FlexPro pens

norditropin Starter Kit

Example of some pens stickers

Example of a pen charm
The kit comes with a backpack, carrying case, and cooler to help make traveling easier. Ian already has a diaper bag, medicine bag, nebulizer backpack, and an overnight bag when we travel. Tom and I are thinking we might be able to combine the growth hormone backpack into one of the other..... but since they are all full to the brim, it doesn’t look good.

We are becoming quite the pack mules. I am feeling as though I need a hand truck to transport everything. While we might not need *every* thing and *every* moment, you can’t really go to the store without it in the car. That would be the time he yanks out his G tube, has an asthma attack, or becomes hypoglycemic.

Back on track...........

In addition to IUGR and SGA, there is another classifying growth category. Low birth weights fall into three tiers. Ian was born in the third tier, weighing only 930g.

Low Birth Weight babies (LBW) <2500g <2.5kg

Very Low Birth Weight babies (VLBW) <1500g <1.5kg

Extremely Low Birth Weight babies (ELBW) <1000g <1.0kg

The two main causes for low birth weights are IUGR and preterm births. Ian was subject to both of these.... and was even small for a 29 weeker, moving him down into the ELBW category.

While Ian falls into all three of the lower, or poorer, groups, he always finds a way to defy the odds. He has been diagnosed as IUGR, SGA, and is classified as ELBW. Many children who fall into these three groups have multiple medical conditions. We are EXTREMELY fortunate to have as healthy of a child as we do. Everything becomes relative. While we may never blend into the “normal” (whatever that is) but we are also very blessed for Ian to have the health he does. We are a very blessed family and are thankful everyday for all the progress and milestones. We have a truly happy little boy that we love very much.

*Information in the posting is from numerous pages which are listed in the Endocrine resources section since they pertain to growth.

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