Piper's Story

My pregnancy with Piper never was quite as easy as I assumed it was going to be.  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 possibly get over quickly enough, 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.

A few weeks later, 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...

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.

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 thishttp://www.blogger.com/page-edit.g?blogID=5563919870590181326 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!

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!