Chance for Normalcy

I have just come across some rather shocking statistics regarding outcomes of extremely low birth weight babies. "Pediatrics" put out by the NICHD performed a study analyzing "Neurodevelopmental Outcomes of Extremely Low Birth Weight Infants Exposed Prenatally to Dexamethasone Versus Betamethasone." The article really hits home with me because it is one of the first statistics (that I have come across) to recognizes Adeline's unique road of being extremely small for gestational age as well as premature.

The article (from what I gather) followed 5,250 children weighing less than 1000 grams between 1998 and 2001. The children were assessed near the age of 18 months corrected. The over all goal was to determine whether or not the use of two different steroids impacted outcome. Lila Grace and Adeline had their fair share of steroids while in the NICU but missed out on the precious prenatal steroids referred to in this article.

I am most interested in this study because it grouped children both by gestational age and birth weight. There was actually a category for Adeline which was children weighing less than 500 grams. She made the cut off at a whopping 467 grams.

Adeline has always been an anomaly. She was very premature but possibly even more growth restricted. Her size was that of a baby five weeks younger. All the stories, statistics and research I have done does not speak to Adeline's road. I can find data on 27 weekers but not 27 weekers born at the size of a 22 weeker. This article does to some degree.

The study assessed outcome at 18 months and classified children either normal or impaired.
Children were deemed normal/unimpaired if they presented a normal neurological exam, normal vision, hearing, swallowing, and walking. It is important to note that the "normalcy" score is a bit skewed. Many children that fall under the unimpaired category still suffer from their prematurity but are doing well enough to hug the very left of the bell curve or suffer from aliments that were not accounted for. I can safely say that Adeline would fall under impaired due to her very rudimentary walk and problems swallowing at 18 months of age.

Here is what they found:

Less than 1% of children born weighing less than or equal to 500 grams survived to be normal at 18 months of age (I guess the hope is that the statistic drastically changes as they get older??)

Here is the kicker. . .we are working with a 1% chance of being normal at one and half years of age if just born small for gestational age (i.e. some babies can be full term and small). When you put the children together that were born less than 500 grams and less than 28 weeks, the statistics take a dive. Really, how much worse can they get? I guess I need the full article and not the the abridged version to know.

Given these statistics, did Adeline even have a chance at normalcy? These researchers made these categories that fit our little Belle. I have been waiting for someone to do so but now I think I could have waited even longer. I wish I had the full article to see how many of the 5,250 children fit into Adeline's category. Most don't make it out of the NICU.

Lila, on the other hand, falls under the 900-1000 grams category which I am not sure classifies as small for gestational age. Her weight was borderline. Of these babies, 24% are expected to be "unimpared." Not stellar but much better than Adeline's plight. Given their criteria for normal, I believe Lila would have fit into that 24% which is beating some difficult odds. The only factor that I don't have solid information on is her neurological exam at 18 months. We haven't had an MRI since she left the NICU. It was normal then so I am assuming is was normal at 18 months of age. Hmmm. . . Alex did drop her off the changing table right smack on her head when she was very little. . . (had to add some humor to some pretty bleak data).

Now if we just looked at the girls as preemies and assumed they had the proper amount of weight packed on, their expected chance of normalcy (at 18 months of age) jumps - at least for Adeline - to 24%. Not bad when you are looking at less than 1% chance of being unimpaired based on Adeline's birth weight.

Uhg, the whole thing just frustrates me. It is still very hard to see hard core statistics like this. These statistics just remind me of the rotten and grim long shot that Adeline was up against. I thought the 5% chance of being born alive was bad. Clearly, being unimpaired at 18 months was impossible. For once, Adeline fell into the "norm." Unfortunately, the "norm," in her case, is impairment at 18 months of age.

Impaired she is, but normal we hope her to be!!
She is getting closer each and every day.

The Last Day

I finally grabbed the last pictures off of the camera. It makes me miss the beach oh so much! Talk about fun in the sun!! It sure was a perfect vacation. Every time we find some sand seeping out of something brought back from the beach, we all kind of hold our breath and then let out a little sigh of "I wish we were still there." But here we are, back in the real world. Luckily, I have a hard drive full of memories.

I couldn't let these pictures slide without posting them. Miss Grace has had some problems pooping lately. The solution. . . Miralax. This girl can hold it like none other. However, after about three days she is running around with her hand on her bottom telling me she has to go pee pee. She sits and realizes it isn't pee pee that she needs to deposit and pops right back up. Let's just say she isn't going to "drop the kids off at the pool" until the "kids are making a break for the pool." If you are unfamiliar with the saying, you will have to ask around. I just can't blog in detail about POOP.

The last few days at the beach were racked with taking Lila potty - efforts were in vain of course. We couldn't ignore the request to go because she would throw a raging fit. After running her back to the house four times in 30 minutes, Alex brought the potty to the beach. Notice Lila's less than thrilled reaction when we all burst out laughing.




Before we left, we lined all of the kids up for the annual picture. They have outgrown the couch where they used to sit for this photo op. Wow, are we outnumbered but so very lucky!

The beginning of the long drive back home. Thank goodness we drove at night because the kids slept!