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.

Potty Trained

Since I haven't gotten around to posting Lila Grace's big milestone, I will slip it in here. I want to at least document it so I can look back and know how young she was when she gave up the diapers. I am sure I will turn into every other grandparent out there and have a selective memory, meaning only good ones that are a bit inflated. When Lila Grace comes to me frustrated about potty training her own children, I can look back here and tell her that it took three tries and that the third one was successful at 2.5 years old - 2 years 9 months to be exact.

I posted previously about trying to train Lila and never mentioned that after April's attempt, she remained in Pull-ups. Not my intention but just how things worked out. She would go to the potty here and there but the Pull-up was always wet. It managed to get drier and drier over time and Lila started making quick pit stops on the potty. This encouraged me to toss the Pull-ups and break out the big girl panties for good.

Surprisingly. . . Lila went one full week without an accident. She did mark the end of that week in a crying fit while in Time Out. Who knew she was crying because she had to go potty and not that she was generally angry. She peed on the floor but was really upset by it and now knows she can sneak to the potty if need be, even when in Time Out.

So there you have it, potty trained and accident free before three. Not bad for a 1 pound 15 ounce baby. She only marginally lagged behind Savannah. I must note that we are still using the diaper when sleeping. I have no desire to change sheets unnecessarily. It hasn't instilled any sort of "diaper confusion" and, like sippy cups, are a form of mess prevention that I plan to use for a VERY long time.

I sigh in exhaustion when thinking about doing this all over again. Adeline. . . your turn.

People Magazine and Micro Preemies

Adeline Belle 2 days old

I am going to try and make this short and to the point. I could go on and on.

Recently, People Magazine spotlighted six micro preemies. It was an attempt to inspire. In the preemie community, it infuriated. Unfortunately, this article portrays the micro preemie road as pretty uneventful. A stay in the NICU, a few steam baths in the tub and all is well. We, who raise these micro preemies beg to differ. The statistics quoted are taken from a cohort of surviving micros in the 80's and state how nearly 90% finished high school and more than half went on to college. The article failed to mention how many didn't make it out of the NICU. In the 80's only the strongest micro preemies would survive. I am positive the statistics would have been much more grim had they included the percentage of babies that were never brought home.

This easily segways to the fact that more babies are surviving with the progression of science and technology. Some of these babies would have not survived in the 80's and most likely suffer from a disablility today. If these same babies have escaped a diagnosis, they are certainly traveling with Adeline on her "not so smooth road" of prematurity.

I think that People Magazine had good intentions but covering a topic such as prematurity/micro prematurity isn't something that can be done in a brief article. Yes, I want to hear stories of hope. I want to hear them but don't necessarily think that they need to shower down on society. I scoured the Internet for stories similar to that of my babies in order to find hope and finding these six grown preemies would have lifted my spirits. However, feeding these slightly skewed stories to society only undermines the road of my girls. Most micro preemies don't live a normal life - plain and simple. Being born under two pounds isn't easy, the NICU isn't a mere hospitalization and steam baths don't fix chronic lung disease.

Possibly spotlighting one micro preemie and their very precarious road in the NICU and thereafter could have been a better way to go. This might be the way to get society to understand that babies like mine aren't assumed to live and most certainly are not expected to live a normal life. The odds are stacks against a micro preemie, not for a micro like People Magazine portrayed.

Click here for the article

Adeline's Developmental Evaluation

Our week came to a close with Adeline's appointment with Dr. Bernbaum. We woke up yesterday to a few inches of snow which I found enjoyable and uplifting. Was it a sign for good things to come? There was no denying that this day was enveloped by mixed emotions. I should have been putting together the girls' second birthday party instead of taking Adeline to a doctor who is supposedly going to tell me if she is going to be normal. It was, in fact, their due date.

After dropping my other kids with good friends, Adeline and I headed out. When we arrived we were told that one of the doctors was late and were asked to get the physical exam out of the way while we waited. Immediately upon entering the exam room Adeline started crying. Yes, she knows all too well that nothing good is going to come from her getting up on that table. I requested that we leave the room to keep her fresh and happy for the multiple tasks she would soon be requested to perform for the developmental assessment.

Soon, Adeline was in the testing chair and pointing to pictures and body parts, taking pegs in and out, stringing beads and stacking blocks. She was just as feisty as Lila Grace was two weeks before. Often she shoved things back at the doctor saying, "Thank you," and "All done." She put her head off to the side and said, "night night." (good pretend play I might add). Anyway, she did really well when she wanted to and was very frustrating at other times. She refused to say and point to objects that she knows and was obsessed with the clock on the wall saying, "Clock, tick tock" every two minutes. I was sweaty and tired by the end of it and Adeline was too. We waited a long twenty minutes while the test was scored.

I was pleasantly surprised when the doctor said she was very pleased with Adeline and surprised by her "successful outcome." That is about as positive as this doctor appears. There is no, "Wow, she was a one pound baby and shows no signs of anything but a "normal" outcome." She proceeded to tell us that Adeline can be looked at two different ways. If her age is adjusted she is exactly two and falls under the "normal umbrella" but is at the low end of the range. If her age is not adjusted she is "mildly delayed." I was shocked that it wasn't a moderate delay. Mild is not something I often hear when referring to the Belle. I was more than pleased and proceeded to asked questions about the future based upon these results. The doctor was reluctant to give predictions but saw no reason why she wouldn't continue to thrive in a mainstream environment. She specifically said that Adeline belongs in a mainstream classroom now and most likely forever. Her rate of closing the gap has accelerated and is expected to continue to do so. Who knows when it will close but it looks like there is an expectation for it close which is a comfort. I had previously envisioned her in a special needs preschool and mainstreamed into Kindergarten with plenty of additional learning support. Come to find out, she should continue preschool in mainstream environment and all of the services we have now and all that I thought we would need in the future is likely to decrease significantly.

I can't quite put into words how wonderful it was to hear this positive evaluation of Adeline. I was prepared for much worse. I must say, I recognize that this doctor does not have the final say on Adeline and doesn't have a clear picture of all of her issues. I am still prepared for anything on down the road. I do, however, believe that it was an accurate evaluation of the here and now. I went in thinking that Adeline was about six months behind. When looking at all of the domains of development, Adeline presented anywhere from 19 months to 21 months old. I'll take it with a smile. I am also pleased that her delays are global. I feel that as long as she continues to develop as a whole at the same rate, she is less likely to have large deficits later on. Specifically, as long as things are developing together, she is less likely to receive a diagnosis or be cognitively impaired on down the road. That is just my own take on the situation. IQ testing begins at five that is when we will know for sure is she is out of the woods for mental retardation. According this doctor, she shows no signs right now.

It impossible to express how much I love this girl. She is pure, wise and determined. She has made me ten times the person I was before I carried her for a mere 27 weeks. She teaches me that faith, hope and love are what enriches your everyday.

She is my stress yet she is my peace.

She is my worry yet she is my comfort.

She is still so small yet she is larger than life.

She is a miracle!


I captured some synchronized dancing last night and thought it would be appropriate to post. This is what the girls look like on what should have been their second birthday.