To File Away

This post is more for me than anyone. In case I don't remember Savannah's "loves" as she is getting ready to turn six. . .

The birthday wish list is as follows:

Stuffed animal horse - mommy and baby

Hard Plastic horse

Thumbelina and friends (Barbie dolls)

Mommy and Daddy bed for the her dollhouse

Bathroom for her dollhouse

Barbies - clothes, a doll with a pretty pink dress and Barbie's bike

Bean Bag chair

Hello Kitty scrapbook

Camera

Hello Kitty radio

Dinosaur sticker book

Dinosaur figurines


I must not forget that she really wants a Cars (the movie) birthday party. Leave it to my girl to love Barbies, dinos and Cars. I hope she never loses her authentic self. Not many girls play with dinosaurs or cars like she does. She has yet to see that Cars and dinosaurs are "boy toys" in our society. I love this about her. She has never played with baby dolls, gotten into dress up or been over the top girly. I can't deny that it is slowly creeping into our house as she spends more time at school and on playdates. For now, I want to preserve the innocent and "unaltered" Savannah. I know that she will be a very different girl a year from now. Sending her off to school this year is going to kill me.

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!

Baby Birds

Early June I discovered a nest in the wreath hanging on my front door. I monitored it for a few days hoping that an egg might appear and, low and behold, it did! The girls were super excited to watch the nest fill with eggs. It was always a mystery as to how many eggs would be waiting for us the next morning. We went from one to two and back to one again. The pattern continued until we were set with four eggs. The girls got to where they could predict where the mother bird would land (while chirping her head off) when we would pull the door open to take a peek at the eggs. "Baby bird, baby bird," was often heard whenever the girls were near the front door. They always wanted to look. At first, Adeline was very nervous about the wreath - wavy branches of flowers threatening to touch her - but she soon was asking for up too.

The above put me right to work on making journals for the girls to use when recording their observations. Call it the teacher in me or the compulsion I have to keep things together and neat! I will admit, it was also an opportunity to work with Adeline on gluing, retelling and focusing on a task. After each journal session I was sweaty and sometimes frustrated but we got through them. The girls LOVED them. Adeline started out by only making one or two marks on the page but later on was asking for me to draw things that she could color. She didn't improve much in gluing. She uses a glue stick and will put the glue on the wrong side of the paper. Lila just gets how to glue but Adeline will need lots of practice. She doesn't use her opposing hand to stabilize the paper either which well below her developmental age. Between Adeline's need of constant help and Lila's lack of patience/need to do everything NOW, I was working over time. Not to mention Savannah's help when spelling words.

In the end the journals came out really nice. The girls can look at them and count the eggs, label the baby birds and mama bird while showing some pride in their work.

Unfortunately, the baby birds were born with a cloud of bad luck looming over their nest. About 48 hours after hatching, the baby bird would disappear. The mama bird chucked the last two babies (at least that is what I think happened) and abandoned the remaining egg which still sits in the nest right before we left for the beach. The birds were interesting while they lasted. Thankfully, Savannah handled their premature nest departure pretty well and, well, the twins are too young to question it.

Here is a video of our birds, journals and fun.

Favorites

We are back and settling in. I am starting to go through pictures and have pulled a few favorites that I am considering for our mantel.

Looking at these pictures reminds me of what a wonderful time we had. The girls were really good and fully enjoyed themselves. In the end, that is really all I wanted -my girls to have fun while surrounded with love. When I sit on the beach looking at the three of them play I can't help but be overcome with all the blessings we have been given. I never imagined us vacationing like a "regular" family two years ago. Regular we are - well sometimes and this vacation was one of those times.

Alex and I had to laugh when we arrived at the beach with NO OXYGEN. We made lists which included cannulas, lines, Tegaderm, nebs and meds but I guess we didn't include O2 tanks. It was more amusing than scary because we were pretty confident we wouldn't run into any trouble. In fact, we escaped conjunctivitis and a stomach bug that were running through the other families in the house. Not bad for a little girl that touched her toes on the sand for the first time at 10lbs, on the O's and nearly one year of age.



Some pictures from this year. . .

Scenes from the Beach

The 4th of July

Beach time
Mermaids

The Jump-Jump

Happy 4th of July

We are still continuing our fun in the sun. The girls are very content and the parents are actually enjoying some "chair time."

Lila Grace is a dream come true on the beach. She follows the big kids around, plays in the sand endlessly and doesn't wade too far into the the surf. She is a delight to watch. Savannah is also having a wonderful time. She ventures out into the waves solo this year and feels pretty confident in the water. Adeline doesn't love the sand or the surf. She would rather spend time in the stroller or in the wading pool that we have on the beach. She requires shoes and every once in a while overcomes her sensory overload and digs in the sand or jumps in the tidal pools. She still manages to have fun out on the beach. It is baby steps for her this year.

This 4th of July we plan to make lots of red, white and blue desserts, spend much of the day in on the beach and finish our holiday on our deck watching the fireworks light up the water. We hope you have a safe and happy holiday as well.