Treading New Ground

It would be impossible to say all that I'd like to say about the past few months in just one post. It's a long but hopeful story of a joyful boy with a tummy tube who continues to charm nurses and doctors with giggles and grins before he heads into surgery to dilate his esophagus each month. Henry is still not able to take anything by mouth, but they believe they are making progress (and we are all continuing to search for the cause of the stricture).

But that's really just part of Henry's life. Feedings have become routine, and while I myself indulge in occasional wallowing about him sitting in his highchair 4 hours per day and missing out on my favorite of the five senses, HE remains the happy and curious bright-eyed boy he has always been. And he continues to develop in so many ways . . . .

Thanks to his Early Intervention "Dream Team" which includes an Occupational Therapist, Speech Therapist, Special Instructor and two Physical Therapists (one of whom is an Aquatic PT), Henry has regained the abilities stolen by multiple weeks of illness and hospitalization. And now, we are treading new ground!

Having read the studies on the use of treadmills to increase an infant with Down Syndrome's ability to walk, I was thrilled when Henry's new PT said she had access to one and would like to start using it with Henry. According to the studies, infants with DS walk earlier and more typically if they follow a prescribed routine on the treadmill. Above and beyond walking, other benefits will likely result. The researchers say, "When infants with DS begin to walk their opportunities to interact and play with their age-mates increases significantly. Motor activity-play provides exploration and opportunities for new forms of cognitive development to emerge." You can read the abstract in its entirety here.

I plan to keep a video record of Henry's progress. At this time, he does 8 minutes on the treadmill at the lowest speed (.1), five days per week. As you can see in the Week One video below (his very first attempt), he drags his feet, which is to be expected. Frequent use of the treadmill will jump-start his body's natural inclination to take steps and give him the motor memory to increase the number of steps and eventually walk on his own. I should mention that this should only be attempted at the direction of a qualified Physical Therapist using the proper equipment (don't try this at home, kids). ;) We are very fortunate to have access to an infant treadmill, as my own adult treadmill starts at .5, which would be way too fast. Infant treadmills are expensive and the research is relatively new, which means they still aren't available from most hospitals or service providers. I sincerely hope they will begin to prioritize the use of treadmills for infants with DS and provide them as needed for this very important developmental step!

Here is Henry with his PT during his first attempt on the treadmill:



Go Hen!

Statistics

The twelfth week of pregnancy is an important one for us.  For many, it is simply the tail end of the first trimester, when a woman starts to feel better from morning sickness and get some energy back.  Due to the fact that my morning sickness never fully subsides, this is not why I look forward to week twelve. 

Our first baby was born in February of 2003.  Sydney Eileen was a much-anticipated, much-loved, beautiful baby girl.  We found out at a routine ultrasound (at 18 weeks gestation) that she had a fatal birth defect called anencephaly.  It is a neural tube defect that affects the development of a baby’s brain, and, in the words of my obstetrician, is “incompatible with life” outside the womb.  I don’t even want to attempt to describe how it felt to hear those words – suffice it to say it was the worst news we could have gotten.  We loved Sydney already, this tiny, kicking little person, so full of life and movement.  We had options, and struggled greatly with the choices the doctors laid before us.  It was not an easy decision, but we chose to carry her to term and fully love her for the time she was given to us, despite the fact that we knew she would not be coming home from the hospital.  We prayed for at least an hour with her, and after her birth we were blessed with just that before she gently passed.  There is so much more to Sydney’s story, but my point today is to provide a background for how thankful we are to have William, Edmund and Henry.  And to say that after drawing the 1/1000 card (this is the likelihood of having a baby with a neural tube defect), statistics came to mean very little to us.

Week twelve, according to the perinatologist I saw when we lived in Louisiana, is the earliest they can rule out anencephaly on a high quality ultrasound.  So with each of my subsequent pregnancies, this was always the first hurdle, and we looked forward to breathing a little more easily after getting a good look at the baby’s head.

At Henry’s twelve week ultrasound, the doctor assured us that the head looked good, but did not agree that anencephaly could be ruled out that early (a little disconcerting, but with a clear picture of a nice round head, we still felt assured that this baby looked healthy).  Our relief was quickly replaced with worry as the doctor continued to explain to us that the baby’s nuchal fold (a small area behind his neck) was “thick.”  This could mean a number of things.  The baby could have a chromosomal disorder like Down Syndrome or Trisomy 18, a heart defect, or it could mean nothing at all.  According to the measurement he took that day, my age (almost 33 at the time), and a chart on the wall, the chances of the baby having a chromosomal disorder were 1/40.  His point in telling us this was to reassure us – but for Scott and me, this was scary news.  1/40 was so much more likely than the 1/1000 we had already known.  He could tell we were concerned and continued to explain how “unlikely” it was that this measurement meant anything.  He recommended that I go get the blood work to go along with the nuchal screening, and assured us that the “worst case scenario” would be that the results might point to a greater likelihood, increasing our odds to 1/20 at the worst (just a side note:  the corresponding blood work is only a screening test and is not diagnostic).  We tried to stay positive as we waited the few days for the results of the screening, and many people tried to reassure us, often citing the statistics in our favor.  When the phone call came from the genetic counselor, we were shocked to learn that our odds had increased to a 1/5 chance of Down Syndrome AND a 1/5 chance of Trisomy 18.  The doctor’s statistical “worst case scenario” had been outdone.  At this point, despite the fact that we still only had a 20% chance of a problem, we were certain there was something wrong. 

We knew enough about Trisomy 18 to know it was fatal, and this became our new worst fear.  It was for this reason that I decided to have a cvs test – we just had to know whether this baby would be expected to live or not.  Much like an amniocentesis, the cvs would provide a chromosomal analysis and tell us for certain whether or not the baby had one of the two suspected (or even a different) chromosomal disorder.  The genetic counselor explained that it was unusual for the results to come back pointing so strongly to TWO possible disorders, and confirmed our suspicions that this meant that something was skewing the results, something was probably wrong.  Needless to say, we had an upsetting (and sleepless) 4 days as we waited for the final news.  The entire time, we found ourselves praying, “Please let it be Down Syndrome!”  As a former special ed teacher, I have known many wonderful children with DS and have been encouraged by their accomplishments and abilities.  This, compared with Trisomy 18, was the best news we could allow ourselves to imagine.  The call came from the genetic counselor . . .  “Your baby has Down Syndrome.  I’m so sorry,” she said.  I’m sure she expected the tears from my end of the line, but she didn’t expect the tears to be from relief and gratefulness!

I don’t know exactly what the statistics are for a couple to have a baby with anencephaly and another with Down Syndrome, but I finally realize that these figures don’t have much impact on our lives.  We are given what we are given, and I feel truly blessed.

Where Do I Begin?

"Begin at the beginning," the King said, very gravely, "and go on till you come to the end: then stop."  -- Lewis Carroll, Alice's Adventures in Wonderland

Sounds simple enough . . . except that I am venturing into the blogging world to record my journey to and through motherhood.  I don't think it will be as simple as "beginning at the beginning," because that would take me back to seven years ago when I was pregnant with my first child, seven years full of LIFE that I can't begin to cover in a blog post.  I think I'd much rather begin at the present, reflect back to the beginning now and then, and of course dive into a whole lot of the "in-between" from time to time.  :)

I'm Kara . . . wife to Scott and mother to two little kings (William and Edmund) with one more little king on the way (Henry). Some other hats include daughter, sister, friend, former special ed teacher, small time entrepreneur, and I'm currently working for Baby Loves Disco.

So . . . why record my venture to and through motherhood? First, I've long held the hope that sharing my story will somehow help ease the pain and burden of someone else who might be going through a tough spell in their own journey to (or through) motherhood.  Also, I used to keep a journal (and haven't taken the time to keep it up since I've had kids) and I enjoy the process of . . . processing!  :)  This is just a much more public form of processing, but I'm not a very private person, so I welcome you to come along if you like and stick around for the journey.  

There are many unknowns ahead.  Henry (little man on the way) has Down Syndrome.  We found this out several weeks, actually months ago and have been processing it for a while already.  I will write more about that experience later, but for now I thought it would be pretty important to bring up, because it is certainly the next big step? hurdle? chapter? in my story.

I'm not sure who's reading along, but hey, thanks for joining me.