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...