Sunday, January 31, 2010

Munching Munchkin

See this?  See this thing I have?  Mommy said I could try to eat it.  I even got to sit in my big-kid chair at Nana’s to give it a try.

I wasn’t too sure—it doesn’t look much like milk.  I had to analyze its bready characteristics closely.

It definitely didn’t smell like milk, either.  I held it very tightly to make sure it didn’t get away.


Finally I got brave enough to taste it.  Everyone was laughing at me, so I must be doing something right.


…I wondered if I could push it into my mouth with my fingers.

It didn’t work.


I’m not sure, but I think I’m really starting to like this eating business.  Just the thought makes me very excited!  Can’t you tell?

So long, of course, as that “eating” doesn’t include peas.  Anything but peas.


Friday, January 29, 2010

Happy, Happy Friday!

We got some special visitors today!  My friend, Alison, and her two boys came to play.  Okay, Alison came to play with me, and her boys tagged along.  Semantics, semantics… 

Alison’s youngest, Noah, is 6 weeks old.  We saw him a few weeks ago—he was so tiny!  It was the first baby I had seen that was smaller than Piper was at that point. 

Today, however, was another story.  Maybe he can explain to Piper how this growing business actually works. 

…and size is not the only place Piper’s been outgrown—check out this hair!

I got to hold him the same way I used to hold Piper in the NICU.  Even by the time she came home, she’d outgrown the ability to sit in the fetal position—I miss holding babies that way! 

Please excuse the inexplicable absence of pictures outside of the babies.  They are, of course, the center of all attention.  Even when they’re sleeping. 

Surprise?  I think not…

Wednesday, January 27, 2010

Hi Ho, Hi ho, it’s off to GI we go!

Well, today was our appointment with GI at Children’s.  We’ve been waiting for about 6 weeks to get in there, but since August to see where this was all going to go.  I said before that I wasn’t too worried about it, because I wasn’t sure what direction I wanted things to go.  I really don’t want to put her through surgery, but at the same time, I hate seeing her put up with these darn gallstones. 

Not worried about it?  Ha.  Until today, that is.  I was so antsy today waiting for this darn thing.  I really don’t know why—I knew what they were going to say, and it really seemed like a formality, but still.  Antsy

So, as we anticipated, her doctor (who I really liked, by the way) recommends getting the gallbladder removed before it starts doing any further damage to the liver.  He also said that if we hold off taking it out, we could end up having to take it out on an emergent basis, which makes the surgery a lot more complicated, and we’re putting her at risk for getting really sick. 

Basically, the question isn’t “if”, it’s “when”.  Joy.  So, tomorrow, I guess we’ll start talking to her surgeon again. 

At least Piper had fun today.  It makes me laugh that she enjoys going to the doctor.  But I would, too, if everyone oogled me and told me how cute I was.  And they keep the exam rooms nice and toasty so that she can stay clothes-less, which she really enjoys.  Look at this face—pure happiness!

Monday, January 25, 2010

If you squint your eyes and imagine…

It seems like there is quite a bit of debate over kids with Ds and the types of hair that they have.  It seems relatively well accepted that they have thin hair, but there is no consensus if that means they are more prone to straight hair or not.

Luke has very straight hair.  As in no-amount-of-hot-iron-or-gel-can-get-it-to-bend straight hair.

I, on the other hand, have fuzzy hair.  Like can-I-claim-some-of-the-Albert-Einstein-fortune-because-I’m-fairly-certain-I-must-be-his-long-lost-niece kind of fuzz. 

So, the question becomes:  Will Piper’s hair be straight or curly?

The last few days, after her bath, she gets this little flip on the side of her head.

Curl?  Cow lick?  My imagination???  Who knows…

Sunday, January 24, 2010

Princess Practice with Piper

P is for Polished in Prose
Our little half-pint pal, LC, shared her Princess award with us today!  How fun! 

1. Name an author you love.
I love Dr. Seuss (predictable?  Probably.  But the truth’s the truth…).  Really, though, anything with a good cadence to it makes me really happy.  My insides dance along side.
(apparently her father’s involvement in the military band altered her genes on some level and obliterated any skiff of an inheritance from her mother’s obvious lack of sense of rhythm)
2. Name an author who highlights your personality.
We like to read Jack Prelutsky’s (Something BIG Has Been Here) poems.  I like them because they sound pretty.  Mom says that some of them remind her of me—they start out, at first glance, one way, but turn out completely different than what you expected!  And you know what’s neat?  It makes it even more fun!
3. Name some books you love.
My favorite books are really my books.  My Nana made them for me for Christmas.  I love them!  They are the perfect companion while sitting in my car seat.  They are a quiet and fun thing to look at during church, but Mom says I’m not allowed to talk to them then.  And they are beeeeauuuutiful!
P1020946 This one is my color book.  All the pages crinkle (Nana told me that she thought she was going to be arrested at the dollar store because she was feeling all the bags trying to find just the right amount of crunchiness).
P1020947 Each page has a different color and a different pattern that were quilted together by Nana, of course.  I think that Grandpa was getting nervous about all the fabric scraps strewn about their house…
P1020948 Ooooh, how this book mesmerizes me!
P1020949  Nana gave me this book, too.  Mommy says that it’s a cautionary tale of why little girls shouldn’t eat bugs.  With summer coming, she says I can use all the threats forewarnings prayers teachable moments I can get.
4. Something that always excites you...
My obvious first choice would be my dinner buckets, but Mommy says we’re not allowed to talk about those here. 
The most exciting part of my day, outside of my breakfast, lunch, dinner, and snacks, is when someone, anyone, laughs at me.  It’s the funniest thing!  I’m still trying to figure out how to do it myself, so I end up making monkey faces instead.   
5. Something you hate...
I love my doggies.  But you know what?  Sometimes they come up to me and give me a big, wet kiss.  Right on my face.  Or in my hair (do you know how long it takes me to get my hair pretty in the morning???).  There are only so many hair disasters a girl can put up with in one day, and occasionally I’m just not in the mood.  Sometimes they lick my hair just right and Mom says I look like Mr. Spacely from the Jetsons. 
Okay, fellow princesses—it’s your turn—Will you share you literary likes with us?  Piper wanted to pass the tiara on to:

Play date with Miss Becky (aka our OT)

Because of Piper’s prematurity, we adjust her age according to her due date, instead of her birth date.  So, really, she’s expected to be doing things a 6 month old should be doing, instead of an 8 month old.  Because of this, she was just allowed to start on solid foods.  Her therapist really wanted to get her oral motor skills developed before she attempted to eat. 

Because she had such a difficult time learning to eat from the bottle, I’ve been really apprehensive for this next journey.  I really wanted it to go smoothly.

We’d tried a few times over the past few weeks, and she’ll eat it fine (at least she doesn’t refuse it, which, to me, is a big step) but I really didn’t have an idea how it should look.  She wouldn’t take a whole lot at a time, either.

Last week at therapy, Becky fed her a whole half-serving of cereal!  She did make a fairly good mess (but not too bad), and enjoyed the whole thing!  She’s getting faster and faster at getting it down, now, too.  I’m so excited!  Now to decide what she gets to start this week…  I’m kind of leaning toward some kind of vegetable, but don’t know which one! 

We also started working on the transition skill to go from sitting to crawling.  She’s supposed to sit with the sole of one of her feet up against her other thigh, and lean forward putting both hands on the ground.  She refused to do it with Becky last week; after she left, though, she showed us that she can sit like this with absolutely no problems.  She is such a pro! 

While practicing it this weekend, she actually pushed up with her feet.  Of course, her hands didn’t know what was coming, and she ended up face-planting square into the floor.  But she knew what she was supposed to do!

She’s also started being able to really support herself on her hands and knees, in the crawling position.  Her arms are still fairly weak, but she’s keeping herself up for longer and longer periods.  I usually have to hold her feet up under her to keep them from slipping out.  She was hanging out there the other day, and decided to reach forward to one of her toys.  She reached forward, and pushed her feet at the same time!  It’s like she really does know what to do, just isn’t quite there yet!

So last night when we were at my parent’s house, Mom got out a towel to give her a hand.  Can I tell you how much fun she had???  They “crawled” toward me, and she had the biggest smile on her face.  It was like she was screaming “LOOK AT ME!!!  LOOK AT WHAT I CAN DO!!!”  Maybe that’ll be incentive for her to figure this out!

…and really, who better to convince you to move than your Nana and Grandpa???


Things I’m thankful for

I've always been a believer in "Everything happens for a reason".  Piper's entire existence has been an exercise in this. 

  • We are thankful for knowing that Piper has Down syndrome before she was born.  It seems like most people who know were glad they did, and most people who didn't know are glad they didn't.  For us, it was a huge blessing.  We knew about her impending surgery, so we were prepared for the NICU stay to start with.  I think it made it easier to see her in there, since we knew it was coming.  We just didn't know how soon it would be!  Furthermore, if we hadn’t been followed as closely by our doctors, we may not have caught Piper as she was crashing.  Without their watchful eyes, I’m not sure our little princess would have made it.
  • I'm so completely, over-the-top thankful for the doctors we have.  I've heard some true horror stories about pressures to terminate, worst-case scenario preaching, and lack of care.  We had none of this.  I was asked once if we were continuing with the pregnancy, but it was truly a minute detail in the conversation.  Everyone was excited to meet her, and no one questioned our decisions.  Because of the level of care we received, we have our little girl with us today.
  • I'm very convinced that He was watching over us the day she was born.  If we had walked across the street for lunch that day instead of going straight to the hospital, we probably would have lost her.  Who knows how much longer she would have hung on.
  • Oddly, I'm glad that Mom and Dad were out of state that morning.  Not that I didn't want them there, but, if they had been here, Luke would have missed the birth.  And Mom would have had to call him to tell him (something I wouldn't have wanted her to have to do).  And at least this way, by the time Mom knew, everything was okay.
  • Before we even got pregnant, I was trying to find an OB.  I knew I wanted one that delivered at the hospital we did, because of their NICU.  I was a big problem baby, and for some reason, I've always been worried that something could go wrong with my pregnancies, too.  It is certainly not the closest hospital to us, and not the most logical decision.  But it was where Piper needed to be!  If she had been born at the closer hospitals, she would have been sent to Children's, and I would have been left behind until discharge.  Children's is great, of course, but I don't think she could have gotten better care than she did at St. Joe's.
  • It took us quite a bit longer to get pregnant than we had anticipated.  If we had gotten pregnant even one month earlier, the timing would have been horrible.  One month earlier would have made Piper’s Ds diagnosis during the week of Luke’s last finals for his degree.  It would have meant that I would have had to go back to work full-time, because of the timing with Luke’s new job.  And although there are a lot of things where my timing could have been better, it definitely could have been worse.
  • In the end, I'm glad we found out Piper was a little girl before she was born.  I was really mad at the time; I didn't want to know.  It was the first of things to come, I'm sure, that didn't go the way they were "supposed to".  But it helped us bond, and it gave us one “absolute” throughout.
  • I'm glad that she did so unbelievably well when she was born.  Obviously, I'm glad for her.  But really?  I'm also glad that the staff in the NICU got to see a family for which the diagnosis wasn't a shock, who was excited for the baby, and a baby who was interactive, alert, and not, what they said, was their "typical" kid with Ds.  I think it's really important that medical staff have a positive reference point when it comes to stuff like this.
  • The amount of love and support we had from family and friends during this whole time was unbelievable.  Mom spent at least 4 days a week (usually 5 or 6) with me in the NICU so I didn't have to sit there by myself.  Wow.  That was probably the greatest gift I got!

I can’t believe it’s been a year.  I can’t believe how much your life can change in a year.  I can’t believe how much the life you thought you were going to have can change in a year.

We love our little girl.  To the ends of the earth, we love her.  I can’t say that I’ve come to the place of acceptance where I can truthfully say that I wouldn’t take away the Ds if I could, but we certainly love Piper for who she is, and we couldn’t ask for anything more!


Saturday, January 23, 2010

Piper’s Story, Part 5

When Piper was born, she was very close to being "small for gestational age".  She missed it by about 15 grams, I think.  She was purely TPN fed (where all the nutrients, fats, vitamins, liquids, etc are through IV) for 9 days.  That night, she was able to start getting 3 ml every 4 hours of milk.  They gradually moved up (they were very very cautious because she was still so small), until she was up to full feeds at about 3 weeks.  During this time, it was very difficult for her to gain weight.  They kept upping her calories and fats, and it'd make a little difference, but not as much as they'd like, so they upped it again.  Piper kept getting stronger and stronger, started OT every day, and was able to start "trying" on the bottle at 34 weeks.  I was at the hospital all day, every day, holding her the whole time.  I got more reading done then than I have in years.  Luke went down every night after work, and spent several hours with her then.  An amazing Dad—it’s about 18 miles to work from our house, about 20 miles down to the hospital, and about 15 miles back home.  And he got stuck cooking, cleaning, etc, a lot, especially when I was still healing.


Piper had a really difficult time learning on the bottle.  She liked to nurse, and she knew what she was supposed to do, but she didn't know how to do it.  I got frustrated.  Really frustrated.  All we wanted to do was take her home.  She was doing everything else she needed to do; she was able to maintain her body temperature very early (at 33 weeks, actually, which is several weeks before she should have been able to), she was off oxygen (although they did put her back on for about a week when she started eating more).  I missed her so badly at night; I couldn't think of anything else.  I eventually got to the point where I had to remind myself, frequently, that she would eventually get home.  I think that subconsciously, I forgot that she was ours, and that we would go home.  I mean, I "knew" she would, of course, but it was hard to remember that it was a temporary thing.

321Piper, 4 1/2 weeks old

When she started getting a little bigger, it got harder and harder for her to keep growing.  They kept upping the calories in her milk (adding high-calorie formula to her breast milk), and upping the volume she had to consume.  Most babies need about 120-130 calories per kilo per day to grow; Piper was up to about 180-190.  They upped her from plain milk (about 20 calories per ounce), to 24, to 26...  At 26, I could tell that it was hurting her tummy (and after all the damage in there, I was really leery about keeping it there).  At 27 calories, she started bleeding, so they took her off the fortifiers completely.  Then she lost weight.  So they started increasing again.  I hated it.  I hated knowing what it was doing to her insides, but that she wouldn't grow without it.

One morning, out of the blue, we got a note from the night nurse that she took ALL of her feedings by bottle the night before.  It was a HUGE first!  We continued that day-- she took every one of them!  That was on Friday.  All of a sudden, we started discussing the going home stuff.  We had to get a car seat trial (where they make sure that they don't have problems breathing and oxygenating in their seats to go home).  We roomed in on Saturday night (we found out we would on Saturday morning) and had the worst night of sleep in history.  Sunday they switched her formula to stuff she could go home on (we looked into keeping her on the stuff she was on there- it'd cost about $2500/month...) and the NNP said that she wanted to see her on it for several days before sending her home.  We were thinking Tuesday, maybe Wednesday we'd get to leave!  We were soooo excited.  Monday I get there with my Mom, and our nurse told us that we were going home THAT DAY.

I made Mom go and call Luke while I talked to the nurses-- he needed to change his plans!  She needed an ultrasound that day to check on her kidneys (she had some hydronephrosis that needed to be re-evaluated), but that was scheduled for the morning.  She ended up needing a higher-level scan, but the nurses worked really hard to get it scheduled, too.  The NNP on staff that day wrote up her report and discharge papers, and we were OUT OF THERE.  I couldn't believe that after 7 weeks, we were going home!

374 Going home day!  6/29/09

The next day, my parents, grandparents, and brother and sister-in-law came over to see her.  They could all hold her for the first time (the NICU allowed US to hold her as much as we wanted, but didn't allow family members to hold them).  I was so excited!

We even got to celebrate her due-date at home.  She was supposed to be born on the 4th of July, so she even got a July 4th shirt and socks.  What a great way to spend her first holiday!

I look back at all of this and I still can't really believe the chain of events that brought us here.  We are so unbelievably thankful for our little girl.  That she's here with us today is truly a miracle.  We can't imagine life without her!

Piper’s Story, Part 4

Piper, 5 days old

Piper made it through her first night fabulously.  They even took her off the vent that night, which we were very surprised by.  The nursing staff was amazing the first few days and sent up pictures that they’d take and print, sent over her footprints, and all of those other new-baby necessities that every mom wants, especially when you can’t see them. 

Her primary nurse told us at one point that she must have been very stressed in-utero because her lungs and muscles were so well developed.  She said that they wouldn't expect a baby who got the steroid shots prior to delivery to be doing that well.

The next day, we waited for the nurses to come up to my room and take off the IV.  I needed it gone before I could go back to the NICU.  I have this terrible habit of closing my veins when I'm nervous; blood draws are my absolute nemesis in life.  So, when they needed a vein ASAP the day before, they, of course, couldn't find one.  I got the IV in my elbow; between all the tape and tubes, I could hardly move my arm-- I was very relieved to get it off!

I had a really hard time sitting up that day; almost passed out several times trying.  And, to top it off, I hadn't eaten anything since breakfast the day before.  I was starving.  But none of that mattered- all I wanted to do was go see MY baby!  The nurses brought over a wheelchair for us to use-- it was about 3 times wider than I was, and hurt like the dickens to sit in.  We pushed pillows all around so that I didn't jiggle as much, and off we went.  We got there and the nurse who had her that day helped scooch her closer to the edge of the warmer so we could see her better.  Then she asked if I'd gotten to hold her yet.  When I said "No", she asked if I wanted to.  My heart skipped a beat.  OF COURSE I wanted to!  They kept her in the positioner to keep her tubes organized, and she was in blankets...  I could hardly feel her she was so tiny.  But it felt perfect.  I'll never, ever forget that day!

By the time we got down there, and she was detached from the table, I needed to get back to my room to pump and for pain meds (!!!).  Leaving her was so difficult that time-- I was torn between being there, and nursing the tearing sensation in my stomach.  Searing pain won.

We knew that surgery would be the day after (Wednesday).  Her surgeon met with us that day, and she did her initial assessment.  We knew she was in good hands-- one of her partners was one of the first to do this repair laparoscopically, and their practice is known around the world for it.  We signed all the paperwork that day, acknowledging that they were going to try doing it laparoscopically, but approving them to do it traditionally if needed.  We found out later that Piper was one of the smallest kids that this procedure has been done on-- we are so grateful that they were willing to try!

Wednesday morning, Luke and I headed over to the NICU before surgery was scheduled.  They let us hold her again (Luke even got a turn this day), for quite a while this time.  We finally named her that morning, before she went in.  Surgery went great-- the nurse called us several time just to let us know that it was going well.  They said to expect it to take longer than the 3 hours they had said before, because she was so little.  It actually took a while less than that; we took it for a good sign!

She was on a lot of pain meds for several days, so they had her intubated through that weekend.  The nurses were great about letting us hold her-- it took them about 20 minutes to get her off the table, and about 30 minutes to put her back.  The only downside was that she started getting jaundiced, so we were supposed to leave her on the table as much as possible for the lights.  During this time, though, she had an isolation room, which was really nice!

With surgery done, we knew the worst was behind us.  Now we just needed her to grow!

Piper’s Story, Part 3

011 My Mom, Grandma and I at my shower.  Too bad (good thing?) you can’t see how grotesquely swollen my bottom half was…

My baby shower was the next weekend.  My mom wanted to do it before we got too close to the end, for fear that I may end up on bed rest between the contractions, extra fluid, etc., etc., etc.  Surely, 8 weeks early, since we knew she wasn't allowed to come early at all, would be ample.

We had so much fun!  So many of our family and friends were able to be there; it was really, really nice to celebrate our soon-to-be bundle of joy.

Mom and Dad left the next morning to drop off a sewing machine that Mom was selling to someone in Wyoming.  Then they were heading up to South Dakota to pick up a new sewing machine that she bought from someone up there.  Again, surely 8 weeks early would give them plenty of time, in case I needed her later on.


Monday morning (remember I told you that Mom and Luke were alternating doctors appointments?  This would have been Mom's turn, had she been in town) brought two doctor's appointments.  First was the OB; I told him that I couldn't feel her, again, over the weekend.  Her heart rate was fine again, but he decided that we should start twice-weekly non-stress tests, on top of weekly appointments with him, and bi-weekly with the Peri.  Whoa.  So, we decided that, after our visit with the Peri, we'd walk next door for another NST.  We took the elevator up to the Peri's office (at least they were in the same building, and right next to the hospital) and told the same story to her.  We had our ultrasound (which was just a fluid check; no growth was being monitored this week, but they did do basic fetal checks and everything was just fine), and she agreed that the NSTs were a good thing to do. 

Piper was asleep still that morning, and after the horrific experience we had trying to wake her up the time before, I thought that maybe we should go across the street and get something other than instant sugar.  I decided against it since Luke had to get back to work.  I had thought, too, about sending him to work, and having my grandparents pick me up, in case it took hours again.  We got to the triage department for the Labor and Delivery floor; they were busy sending someone upstairs, someone else was having contractions...  It took us about 5 minutes to get in and attached to a machine, which really wasn't a big deal.  The nurse was getting me hooked up, but kept finding my heartbeat instead of the baby's.  No biggie.  So we rolled around trying to catch her.  No such luck.  All of a sudden, she took my wrist, muttered that it was the baby's heart rate that she had, threw the back of the stretcher down, pushed some button on the wall, yelled something out in the hallway, and we ran through the halls.  Her heart rate was in the 60's at that point.  All I really remember is being on a stretcher, in the elevator, and getting put in the OR.  Luke says that we were in another room before the OR; I don't remember that, at all.  They asked how much I weighed for the anesthesia.  I remember someone saying that the baby's heart rate was down to the 30s.

The nurse downstairs had told me that, if we got up there and she recovered, we wouldn't do anything right then.  I kept that thought the whole time, that maybe this was some kind of mistake.

And that's it.  All I remember until several hours after she was born.  The general anesthesia that they gave me hit me hard.  And since I wasn't admitted to the hospital like normal people are, I wasn't allowed to have any narcotics until the paperwork was filed.  So I got some kind of every-fifteen-minute injectable junk that really didn't do anything.  At all.  And it kept making me really, really foggy.  Luke said that he had to tell me about 30 times that everything was okay.  And that she had hair (apparently I really cared about that part).  I'm pretty sure that the lady I was sharing the recovery room with (who had a 10 1/2 pound kid, by the way) thought I must have been crazy.

3 pounds, 6 ounces, ad 15 1/2 inches long.

I couldn't believe that we had a three pound baby.  And I was so worried about her impending surgery.  They took me through the NICU on a stretcher so that I could see her for a few minutes before they took me to my room.  The walk there isn't very far, but it felt like an eternity.  It seemed so foreign that the baby, who had been in me for so long, was instantly gone.  With no warning.  No preparation.  I wanted to see the little girl who had grown so much, but not nearly enough.  I had to see her to know that it was all real.

I was so sore, I couldn't move my feet.  But she apparently gave me instant superhuman power (maybe this is the crazy-mom-super-power that allows people to lift cars off their kids???), because I had to roll over on my side and lift us as much as possible to get a look.  And touch her hands.  And take in her itty-bittiness.
She had tubes all over her tiny little body.  Her nurse was explaining everything to me, and what they were all for, but I really didn't care.  IV's in her bellybutton, thermometer probes, intubation tubes, a neobar in her mouth that held the tube to drain her stomach...  But she was everything we could hope for.  She was so cute.  She even had chubby cheeks, despite the fact that she only weighed a little over 3 pounds.  I'm still not sure how that happens.

Later I found out that her apgar was ZERO by the time she was born; Luke said that they didn't let him in the OR until they had her heart beating again.  As soon as they did, though, he was able to see her.  She was still gray, really gray, as he watched the pink slowly return.  I'm glad I didn't see it.  I'm glad I didn't hear it.  In a lot of ways, I'm glad I wasn't "present" for the whole thing.  I'm glad that, by the time I came to, we knew she was okay.  I'm also glad that Luke could focus on her, and not worry about me for those few hours.  He called his dad to have him try to get a hold of my family, so that he could focus on Piper, too.

Remember me saying that Mom and Dad weren't in town?  Jerry, Luke's dad, got a hold of my grandparents, who were trying to get a hold of Mom and Dad.  Unfortunately for them, the road between North Dakota and Wyoming is NOT the place to find cell reception.  I think that Grandma was finally able to talk to Mom early that evening.  They were going to spend the night in Casper; instead they drove in a panic back to Denver.

One of the biggest regrets I do have is that I wasn't able to be there when the rest of the family got to meet her.  I almost felt as like a superfluous third party in it all-- I wanted to see people's faces when they saw her.  I wanted to see my parent's when they saw their first grandbaby.  I wanted to be the one to tell everyone that we had our baby.  

But she made it.  And that's what really matters.

Friday, January 22, 2010

Piper’s Story, Part 2

By the end of February, I was really excited to go for her growth check.  I wanted to see her.  I think, if nothing else, all of those ultrasounds helped us realize that she really was just a little girl, and emphasized how she wasn't, ultimately, any different from other kids. 

The growth check went well.  The baby was measuring a little on the small side, but not too much (about 20%), so the doctor wasn't too worried.  She was very active, and impressed everyone with her agility exercises.

At the first appointment, the doctor was very nice, informative, and sincere, but seemed a little cold.  The second visit, she was warm, friendly, and positive.  Later on, we wondered if she didn't get attached early on since over 90% of parents decide to terminate these pregnancies.  That doesn't leave too many that are carried to term.  We really like her.  A lot.  And we knew that our little one was in good hands.
She referred us to a pediatric cardiologist to double check her heart.  The baby had a little fluid behind at the first appointment, which had completely dissipated by the second, but because about half of babies with Ds have heart defects, she wanted to be sure that there wasn't something that was being missed.  At 24 weeks we had that ultrasound.  Piper (although she wasn't Piper just yet) was incredibly active the whole time.  She moved so much that it was difficult for the doctor to keep the transducer on her long enough to get a good look.  But, by the time we were done, he said that he was fairly confident that there were no abnormalities since he got to see from essentially every angle possible.  Our little girl never was very passive...

Two weeks later, we went back for her next growth check.  Since the number of appointments we were going to was starting to diminish Luke's time off at work, we decided that my mom and he would alternate days taking me to the doctor so I wouldn't have to go by myself.  And I was glad I didn't have to go by myself, especially this day.  Since the last appointment went well, we didn't see the doctor at the beginning.  The tech took her long list of pictures again (although not quite as many as the first appointment).  I got a real kick getting to show Mom our little girl.  Ultrasounds have really changed since we were babies; I don't think she could quite believe how awesome it was.  The tech let us do a minute of the 4D stuff, too (not much, though, because its effects aren't really known).  I had a feeling that something was off, but shrugged it off.  She said, when she was done, that she was going to show the stuff to the doctor, and they'd be back in a few minutes.  The came back in the room, and the doctor looked some more.  (We decided around this time that we really should by stock in the companies that make the ultrasound jelly).

When she looked up from the machine, I could tell something was off.  She told us that the baby had Duodenal Atresia (a disorder that affects about 1 in 10,000 live births in the US, but about 1 in 6 babies with Ds), which is where the stomach and the intestines don't connect.  It would require surgery immediately after birth, and require a significant hospital stay to heal.  

Again, I was crushed.  I think that this was harder for me to hear than the Ds diagnosis itself.  I'm still not sure if it was purely out of worry for the baby, disappointment that her birthday was going to be nothing what we had expected, or if it was, for the first time, proof that Ds was going to affect her life.

It also took a pretty good toll on my body; because the baby couldn't process any of the amniotic fluid, as most babies do, I had a lot of extra water.  They measure, in four quadrants around the baby, the distance between baby and uterus.  A normal number is around 15; 20 is normal, but high.  I was at about 27.  My legs were about twice as thick as they usually were, I could hardly put on shoes.  30, I was told, was a magic number.  If we hit 30, they'd have to drain some of the extra fluid to prevent preterm labor.  That was not what I wanted to hear.  The amnio was horrible enough; the thought of having to do that routinely made me want to go run and hide (I'm really brave when it comes to needles...).  So, our once-a-month appointments were increased to every two weeks to check on the fluid level.  

Our doctor, again, referred us out to several specialists so that we could be prepared for her birth.  I didn't want to go see these doctors.  Seeing them would admit that there was definitely something wrong, and I think I was trying to live in denial as long as possible.  But, at about 28 weeks, we went to the NICU at the hospital so that we could meet some of the staff, see what the unit looked like, know where it was, and ask questions about what to expect.  In the end, this was probably the best thing we did.  That day, we also went to the surgeon that our Peri hand-chose for us.  We got to meet her, and she explained what the surgery would entail, and again, what to expect.  She said to plan on being in the hospital about a month.  I cried the whole time.  She was pregnant with twins, who would be at term around the same time as Piper, so she told us she would probably not be the person to do the surgery.  But her and her partner are some of the only surgeons in the nation (and from what I've read, some of the only in the world) that would do this surgery laparoscopically, which we were very happy about.  Traditionally, this incision goes from one side of the bellybutton to the other side of the abdomen.  This way, she had two tiny incisions, and one through her bellybutton.  We were very thankful that they could do it this way instead!

We continued then with our multiple appointments each week until the first week of May.  The weekend before, Piper hadn't moved for the first time since we started feeling her.  The whole weekend, I couldn't feel her at all.  They told me before that, since I had so much fluid, it was going to start getting difficult to feel her.  And every time I went for fluid checks, they commented that it must have been getting hard to feel her.  So, although I was worried, I tried to not think about it, because surely nothing was wrong.

On Monday morning, we saw the OB.  He agreed that we wanted to watch her closely, so he prescribed once-weekly non-stress tests.  We had discussed early on that about 20% of Ds babies stillbirth in the last trimester, so it was a very real worry that we could lose her.  So, Thursday afternoon (which happened to be the day of our first baby class) we were set up for our first test.  One more appointment to add each week.  We were supposed to be there at 4, and baby class was at 7.  Plenty of time, we figured, to get the test (which was supposed to last 30 minutes), get dinner, and make it back for class.  Perfect-- at least it wasn't going to add another trip down every week.

Piper was completely asleep when we arrived.  They wanted activity to analyze; without it, the test wasn't going to tell us anything.  So, they gave me a chocolate pudding and an apple juice to drink to see if the baby would wake up.

Wake up?  Yeah.  It worked.  Big time.  In fact, she was so over-the-top active, that the test took about 3 hours to complete, because we couldn't keep the transducer on her long enough to catch her heart rate.  Lovely.  The staff OB was going to come and do an ultrasound instead; while he was on his way down, she started to settle, and we got it in about 15 minutes.  Go figure.  So, we made it to our baby class, with no dinner, and started really looking forward to seeing our little girl.

Little did we know...

Thursday, January 21, 2010

Piper’s Story, Part 1

Almost exactly a year ago, I was finally starting to get over my morning sickness.  At 16 weeks, I had my first doctor's appointment where I didn't lose weight.  Things were finally starting to get a little easier, and I was starting to get excited for the rest of the pregnancy.  We were able to feel the baby move quite a bit; we were so excited!  I "knew" the baby was a boy, but we weren't going to find out for sure until he was born.
We had our standard 16 week blood screenings.  Obviously nothing was going to be wrong.  It was just one of those things you do.  We didn't think a whole lot about it.

Until, a few days later, I got a phone call from my doctor.  I was in a meeting at work, so I missed the call.  He had called at the beginning of a busy "surgery day", so I couldn't get a hold of him to get the specifics.  I was horrified.  But part of me kept saying that surely nothing was wrong (he had already explained that the quad screen only gave the statistical probability of a chromosomal abnormality, and that there was no guarantee with the results).  Finally, at about 8 that night, he called us back and said that our baby had a 1 in 277 of having Down syndrome.  Since I was 26, it was about 3 1/2 times what our risk should have been for our age alone.  Although daunting, 1 in 277 seemed like a fairly low chance.  Our doctor wanted us to come in for an ultrasound so that he could measure the baby again.  If we were more than a few days off in the baby's age, the test results would be invalid.  So, the next day, we went in for the ultrasound.  He didn't see anything obvious, so he referred us to the Perinatologist (a high-risk doctor) for further testing.

It took another week before we got into that appointment.  The whole time I kept telling myself that there was undoubtedly nothing wrong, but was unable to shake the feeling that something wasn't right.  That week brought lots of nerves, tears, uncertainty...  Finally, nervously, we made it to the new doctor's and waited for the ultrasound.  The technician took a couple hundred (yes, hundred) pictures of the baby.  It was absolutely amazing.  The machine that they had took the most unbelievable pictures.  They measured every part of the body that they could find.  Everything down to the length of the nasal bridge, pinky finger, leg bones, arm bones, various air and liquid sacs...  They said that the baby weighed about 6 ounces, which was really cool to have a general idea of how big "he" was.

I couldn't believe that was our little baby.  We had waited six and a half years to get pregnant, and that was our baby.  We could see her profile-- her little nose, her sleepy little eyes, fingers, toes.  She even had a round little tummy that I just wanted to kiss then and there.  We sat in awe, watching as one picture was taken after another, somewhat in disbelief, for what seemed an eternity.

The tech finished, and went to show the pictures to the doctor.  The doctor came in and remeasured a lot of the pictures, just to be sure.

Once the doctor was done, she told us that she was almost certain that the baby had Down syndrome.


A new kind of disbelief set in.  Everything turned into a blur.  Like we were watching someone else's life.  We were told that we were going to have a little girl, and my heart broke.  Suddenly I realized that the journey we "chose" was not the same as the one God had chosen for us.

The doctor told us that we should do an amnio to confirm.  (I'll have to get into our decision to do that in another post; there's a lot of debate regarding prenatal testing these days, and I don't know if parents are always given the chance to make a decision on their own.  We were blessed with amazing medical staff who believed that we needed to be prepared for the arrival of our special little girl.  And that's all we wanted.)  A few days after the amnio, our initial FISH results came back positive for Ds.

I won't lie.  I was horrified.  I had no idea what we were going to do.  I kept saying that God should have given kids "like her" to someone that had more experience.  Why us?  How were we going to handle this?
It took a few weeks to get over the shock.  We slowly started coming out of the haze and started our research.  We started looking into the possible problems that these babies had, so that we could be prepared for whatever came our way.  I didn't give much credence to the things that we "shouldn't" have to deal with.  I wanted to know exactly what we were up for.

We kept our regular visits with our OB, and added growth checks for the baby every 4 weeks with the Perinatologist, too.  On top of it all, we had several more appointments at the OB because, at about 18 weeks, I started having contractions, which didn't subside at all until she was born.

Suddenly, the remaining 20 weeks of my pregnancy couldn’t possible get over quicker, but at the same time, I wished I could stay there, in that place, forever.

I remember telling my mom once, early on, that I just wanted to hold her and tell her that everything was going to be okay.  I lied.  I really wanted to hold her so that I knew everything was going to be okay.

...and it is.

Wow. Has it really been a YEAR?


I can't believe it's the start of a new year.  Last year this time, we had so much to look forward to.  Quickly, though, it turned to chaos, and seemed to stay that way until Christmas.  Now that things are finally starting to calm down, I thought I'd share our story.

Piper’s Story.

So, for the next novel-and-a-half, I’m going to go through all the events that have gotten us here today.  Interlaced, of course, with some of my favorite pictures.

A year ago, we had no clue what the next year had in store for us.  We had no idea what we were capable of.  We had no idea the happiness, love, and joy that were waiting for us!

So, feel free to skip these overly long, verbose next few posts, if you want.  But, since we didn’t start this blog until recently, I wanted to share how we got here.  And besides that, I figured I should document what I can remember now, before it starts to get all hazy, for my own edification.

Tuesday, January 19, 2010

Benefits of living in Baby-dom

You never know how your life is actually going to change when you have a baby.  Sometimes, those changes are glorious events that you never thought possible.
Like saving the sanity of your dog.
Duncan is a wuss. 
An absolute wuss.
He’s afraid of everything.  Skate boards, razer scooters, bikes (no, it’s not wheels—cars he likes…), popping sounds, broomsticks, anything that looks like a broomstick…  Shall I continue???
About the worst of his fears, however, has been the camera.  Or anything that looks like a camera.  Or anything that’s pointed at him that could possible be construed as a camera.  It terrified him to the very core of his being.  If we took out the camera, we could usually find him in the bathtub a few hours later.  Yes, it’s that embarrassing.
But see, something miraculous happened when Piper was born (outside of her actually being born, of course).
The camera is by far the most used appliance in our house.  And for poor Duncan?  We’ve successfully desensitized him to flashes!  I can’t believe it.  I seriously cannot believe it.  I think he’s finally resolved himself to the fact that if he’s going to be a part of our family, he’s just going to have to deal with pictures, because heaven knows that it’s a daily event here.
…he even lets Piper crawl over him in front of the camera.  Whoa.  Is this really our dog???

Monday, January 18, 2010

Piper’s a pilot!

Her new game is “flying” in her sling.  Ohhhh is it fun!


“Okay, Dad—I’m ready!”




Again!  Again!


Helloooo, Maggie.  Yes, Helloooo, Maggie…


And what made you think I was actually done???

Sunday, January 17, 2010

Berry Cute!

Have you ever been somewhere and saw something that you knew you couldn't pass up?  Even if you knew it was completely impractical, maybe a little silly, but it didn't matter???

I found a swimsuit for Piper last year on clearance.  Size 0-3 months.  Because all newborn babies need a swimsuit, right?  But how could we NOT buy a strawberry suit?  I mean, look-- isn't it obvious that she needed it???

The only problem is that it's obviously too cold to set up a pool outside.  And take her to the pool?  You've got to be kidding. 

So, we had a pool party in the tub today.  Swimsuit included, of course.


She hasn't ever had a bath, by herself, in the big bathtub before.  Not where she could splash and wriggle to her heart's content.

We gave her toys to play with.  But her fingers were, of course, more fun.

She decided she could practice her modeling poses.  I'm sure I don't approve of her aspirations.

I'm really not entirely sure what she thought of the whole experience.  I think that she got cold quickly because she wasn't submerged like she usually is, and it took us a while to get her warm again.  But I think all-in-all it was a success!

Saturday, January 16, 2010

The excitement must have been unbearable

After a hectic week, I had half a mind to be on house arrest all weekend.  All weekend.  But when the weather forecast said 55 degrees for today, I knew we had to take a nice, long walk.  With all of us, including the dogs.

I had visions of going to the fair grounds (which is about 4 miles from the house), and had even contemplated packing a lunch.  I thought of Piper sitting with me as the dogs got to play ball.  I even thought we could see if she'd "throw" (with help, of course) for them.  I thought we could play in the playground at the preschool up the street.  Maybe she'd like the slide!

We left out the door, and about 5 blocks from the house, I look back, and this is what I see:

Completely asleep.  Totally fast asleep.  Not even stirring on the bumps.  I was a little worried about her being able to breath, so I kept checking on her.  She was completely and totally content.

She was obviously just as excited as I was...

We kept on our walk (we decided to take the shorter one just up to the open space and back).  We got to a place where we usually let the dogs off-leash so that they can "go fast" (we say the phrase, and they go crazy.  Seriously.  I have full intentions of teaching this to Piper, too.  I'm sure it'll come in handy then as well). 

Piper slept.

The dogs fully enjoyed themselves.

Maggie ate snow (a favorite winter past time of mine, which I hate to admit).

She also rediscovered her love of snow when it's warm outside.  It makes a perfect way to cool off.

The baby?  Oh yeah, she slept.


Somewhere in the midst of all the mayhem, one of the dogs decided they needed to check on the baby, too.  Doing so, of course, required a nice big lick of a snow-infested mouth.  On the top of her head.  I'll spare you from the picture of a drool-covered baby.  Partly to prevent a call to CPS.  I decided maybe she needed her hat back on.  Still, she slept.

We finally made it home.  I took the baby inside, and laid her in her crib.  She's been asleep the whole time. 

She's probably exhausted by her 5 am wake-up call.  Oh, wait-- she's the one that did the waking...