Halloween Pics

Two Months Old

Still too busy to blog these days, but I thought I would add some fall photos of the kings. Henry is two months old today and is just wonderful. He has increased his intake and gained some weight, so the feeding clinic "graduated" him. With our hectic days, I was happy to scratch that off the list! He was recently evaluated by Early Intervention and qualified for OT services, which should be starting that next week (with a focus on feeding and head control). He has the sweetest disposition and still doesn't cry or fuss much unless it's tummy time, but if William is there talking to him, he tolerates it much longer! :) I do hope to be able to write more here as we settle into our new routine and am even considering posting some of the activities we do at home as a part of the blog. Til then. . .enjoy the photos!

Catching Up

What ever gave me the idea that I would have time to blog while taking care of three kids, a house and a part time job? I am realizing that some things just won’t fit into my day, and blogging (if you haven’t noticed) has had to get in line behind other, more pressing duties. Still, I would love to post updates whenever I get a free moment, and I happen to have one little moment this morning (thanks, Diego)!

Believe it or not, Henry is already one month old!! As you can see from the recent photos, he has changed so much already (along with everything else in our daily lives, it seems).

It was quite a surprise arrival! Scott was out of town serving as the best man in a wedding. I was nervously trying to just get through the weekend without him, hoping I wouldn’t go into labor (but never really thinking it would happen!!). When he left on Thursday, I packed a hospital bag for myself and an overnight bag for the boys in case they needed to stay with someone. I was reassured when my friend Alison joked, “You’re prepared, so it won’t happen!” By Saturday night, I was breathing a sigh of relief that we had gotten past the wedding and Scott would be returning the following evening. I spoke to him around midnight, told him I’d see him at the airport, and went to bed. Just three hours later, I woke up and immediately realized that my water had broken. Panicking for a split second, I reminded myself that I had rehearsed this scenario in my mind and was as prepared as I could be. I called Scott in New Hampshire, my parents in Ohio, and Alison who lives just a few minutes away – all of them knew it had to be me when their phones rang at 3 am! Alison took me to the hospital while her husband Josh watched 5 boys (my two and their three)!

Despite our best efforts to wait for Scott (who managed to get an early flight and would arrive around noon), Henry was born at 9:07 am. I am so grateful for a friend like Alison, who stayed with me and was even there at the birth to welcome Henry and be the first to hold him (apart from the doctors and nurses) and videotape his first moments. Since I had a c-section, I didn’t get to hold him right away, but got to see him and kiss his sweet face before they took him to the nursery.

It was a LONG day after that. Scott arrived around noon as expected, but Henry still wasn’t with us. Late that afternoon, our pediatrician came in and told us he was having trouble transitioning (he had low heart and breathing rates), and they wanted him to be stabilized a bit more (they were deciding whether or not to send him to the NICU). Fortunately, he improved and they brought him to us at 5:30 pm. He stayed on the heart/apnea monitor during our 5 day stay at the hospital, but improved every day and was able to come home without the monitor. Apart from that tiny scare, the only problems we have had are some feeding issues. Henry never got the hang of nursing and was rapidly losing weight after we got home. He is now on a high calorie formula and is finally gaining weight (though still only takes about 1 - 2 oz at a time on average).

He is a wonderful sleeper and a really easy baby! He doesn’t cry much, and his cry isn’t very loud (though I’m sure his brothers will teach him how to speak up for himself). Every minute with him is a JOY! There is much more to say, but this is a long post already . . . and little people are getting hungry for lunch! ☺

3 Weeks Early!

Henry Aaron arrived 3 weeks early after all! 7 lbs 11 oz, 20.5 inches. Daddy was out of town and my water broke in the middle of the night. He sure surprised us! But we are so thankful that he is here.

Boys

Can I just take a moment to say how much fun little boys are? I had to share this picture of Edmund playing with his baby doll the other day. We had a good laugh!

Ready or Not?

I have been wondering if there is something to the notion that babies with Down Syndrome are born early.  I had read the comment on a few blogs and have also gotten emails from some other parents of babies with DS who have said, "You know he'll be early, right?"  My not-so-extensive internet research doesn't turn up any facts about this, just a few conversations between parents.  Mostly, I've laughed it off (I can't imagine what would make it true), but I have to admit that it has been in the back of my mind! 

It was especially in my mind last Friday when we were getting ready for a night out with my mom and aunt.  I was having so much pain I could hardly stand up to get dressed, but it didn't feel anything like contractions as I remember them so I thought I had probably pulled a muscle. We finally got to the restaurant, but I couldn't ignore it anymore. The doctor on call recommended that I come in to the hospital, so we skipped our lovely night out for a night in L&D. When I arrived, the nurse confirmed that I was having strong contractions and even said she thought this was probably "it."  But after a few hours on IV fluids, the contractions were gone.  It was a frustrating night, but I am relieved that Henry didn't arrive too early!

We have scheduled a c-section (so there's the illusion that we have some control over when he is born), but we are starting to realize that he could really arrive any time.  Even though he is my fourth baby, my other labor/delivery experiences were not typical and always included some form of decision-making on my part.  We chose to induce 2 1/2 weeks early with Sydney so our parents could be in town and meet her in the short time we had.  With William . . . I'll say it . . . I drank castor oil to go into labor (hey, I had basically been pregnant for 2 years at that point!) and ended up having a c-section.  Edmund's c-section was scheduled for two weeks before his due date and all went as planned.  I suppose I've been assuming the same for Henry, but one difference is that the c-section is scheduled only 3 days before his due date. I can't shake the thought that I've never been pregnant within 3 days of my due date.

Better go pack my hospital bag . . . just in case . . . .

Poster Child

A few weeks ago, my doctor ordered weekly non-stress tests until delivery.  I tend to lean toward the cautious side (and prefer when doctors do too), so I was relieved that they would be monitoring Henry so closely.  Yesterday was our first one, and when I arrived the nurse explained that the test doesn't actually have anything to do with stress and suggested that it should be called the "baby wellness test" instead (but I have to say that it was so relaxing for ME -- I almost fell asleep in the recliner -- that I think the name suits it just fine from a mommy standpoint). Basically, the nst monitors the baby's heart rate for a half hour. They look for two "accelerations" in 20 minutes.  If he's sleeping, we jiggle him a little and see if he reacts and whether his heart rate accelerates for 15 seconds or more.   Henry passed with flying colors!  In fact, the nurse even called him a "poster child" for how the results should look.  What a good boy.

What’s in a Middle Name?

I really don’t think Scott and I are indecisive people.  But we just can’t decide on a middle name for Henry!  Each of our other children’s names came to us easily and quickly, and we agreed on them with no reservations.  But for Henry, we have been up and down a list of “favorites,” deciding and then wavering, because none of the choices ring true for us like the others.

William’s name was the easiest.  I remember standing in Kinko’s waiting for Scott to make copies and it just hit me.  If we had a boy someday, he would be William (after my late uncle, Big Bill, who was indescribably special to me).  I wasn’t even pregnant at the time, but as we pondered our future over the Kinko’s copy machine, Scott and I decided that “William Scott” was the perfect name for our would-be son.

Edmund’s took a little longer – meaning a few hours -- perhaps we were distracted by a more exotic location than Kinko’s (we were in Greece when we found out we were expecting, and we started a list of names as we traveled by plane and bus to Romania).   It was too early to know the gender, so we had a list for each.  Once the name Edmund came up for a boy, we never turned back.  Most people ask us if Edmund is a family name.  We admit, it’s unusual, but no, we just liked it (and yes, I also have a fondness for the character Edmund in the Chronicles of Narnia).  His middle name is Michael, after my father.  And so we have William Scott and Edmund Michael, two strong names that complement each other well.

And now here we are. . . we fell in love with the name Henry long before we knew he was indeed a “he,”  and we are certain it fits beautifully with William and Edmund.  But just as easily as his first name came to us (this time in the car here in Philly, if you’re interested), his middle name has eluded us.  Edmund (age 2) has struggled recently to learn his own full name (mistakenly calling himself “Edmund Scott Shall,” in his strong desire to be just like William and Daddy), and I have often wondered if it would have been easier if we had just given them all the same middle name.  But the narcissism of George Foreman comes to mind when I consider having three boys with the middle name “Scott,” so in the end, I do think it’s best for each to have his own.  I'm sure we'll decide in the next 6 weeks, but for now Henry’s middle name is a mystery.

31 Weeks

I had an ultrasound this morning, and everything still looks good! I never noticed before (in all of my pregnancies) that the "due date" at the bottom of the screen changes as they take each measurement (I knew, of course, that the u/s determined the due date, but had never seen it fluctuating before today).  Everything was right on target (on or around September 14) until they measured the femur. Then I happened to notice the due date change to October 18!  No one said anything, so I asked if that meant the femur was small, and they said yes.  The technician explained that this is common for babies with Down Syndrome and that if they hadn't already known that he had DS, it would have been a "red flag" that there might be something wrong.  Otherwise, everything looks great.  The 3D ultrasounds still amaze me -- I love how detailed they are!  Looking at Henry's sweet face makes me realize just how close we are to his arrival, and I can't wait!

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.