Wednesday, September 28, 2011

Over the river and through the woods...

There was a bad thunder storm the day Bun Bun came home from the hospital.  Thunder storms have increased in frequency and severity recently, most likely an effect of global climate change.  This summer, we've gotten most of our rain water from thunder storms.  We live in an area with lots of very tall trees and power lines, not so good mixed with heavy down pours and gusty winds.  So, soon after we got our daughter settled at home, the power went out!  If the power went out today, we would have just winged it.  That day, being on our own for the first time, without the help of NICU nurses, we started to panic very quickly.  The last time power went out after a thunder storm, it didn't come back on for 4 days!  No more time to lose, we packed up our preemie, grabbed the essentials, and literally over the river and through the woods, we all spent the night at Grandma's house.  In lieu of a crib, Baby Bunny slept in a cardboard box lined with a heavy wool blanket.  She was a trooper!

Picture of Baby Bunny at 10 weeks.  She's starting to react to faces and sounds more and more.

Sunday, September 25, 2011

NICU

Olivia stayed in the NICU (neonatal intensive care unit) for the first 25 days of her life.  By the way, we rarely call her Olivia.  So far, she's been Baby Bunny, Bun Bun, and Little Monkey plus a bunch of other nick names in Chinese.  Born on a Thursday, she didn't have a name until Sunday.  John and I couldn't settle on a name for a long time.  We had a list, but I didn't want to pick one until I had met her.  I was to be discharged from the hospital 5 days after delivery and go home without the baby.  We had to name her and fill out paperwork before we left.  So, she was officially dubbed Olivia Anne.  Olivia was one name on our list.  Anne Shirley is one of my favorite literary characters-Lucy Maud Montgomery's Anne of Green Gables-Anne, with an "e"!

It was hard having to wait to bring her home.  The NICU nursing staff was fantastic and so supportive.  They pretty much taught us everything we needed to know about babies and particularly preemies.  For ten days, Olivia lived in an incubator.  For seven of those, she underwent phototherapy to bring down her bilirubin levels.  It was almost like tanning under the blue light.  The nurses would put shields over her eyes which she would promptly rip off.  They fed her intravenously until she was able to take in a few drops of breast milk by mouth.  It was a good day when she was moved out of the incubator and into an open crib where we could see her, touch her, kiss her, and change her diapers!  Oh, how tiny were those preemie diapers!  We visited her everyday and tried to hit the hours when we could feed her.  Preemies are very sleepy little creatures.  Technically, they should still be growing in the womb, not quite ready to eat on their own, maintain they own body temperature, and even breathe on their own.  Some days Olivia would sleep through our visit, and it was heart-breaking to watch breast milk being pumped down an NG (nasogastric) tube.  It's heart-breaking, because for her to come home, she needed to take in ALL of her nutrients by mouth.  On the visits when she was alert, her huge eyes darted around the room.  The nurses had nick named her the Mrs. Kravitz of the NICU.  Mrs. Kravitz was a character on an old TV show, Bewitched; she was an extremely nosy lady who would sometimes peer through the her neighbor's windows.  I guess Olivia liked to know what's happening around her.  Day by day, she learned how to coordinate suck, swallow, and breathe.  Day by day, she would gain a little more weight.  On August 1st, we brought her home.  Even then, she wasn't suppose to be born yet for another 12 days.

God is good, and He is sovereign!  The chromosome test confirmed the Down syndrome.  Reality has sunken in, but by that point, we were smitten by our little girl.  Everyone we talked to and confided in were very encouraging.  We immediately got the ball rolling in seeking help and resources for Olivia.  In this day and age, there are tons; a lot more is known.  What a blessing to be living close the Children's Hospital of Philadelphia, one of the best hospitals for kids in the world; we got on the wait list for the Trisomy 21 Program.  We signed up for Early Intervention that provides infants with physical, occupational, speech therapies.  God is good, and He is sovereign!  The adventure begins!

Friday, September 23, 2011

10 Weeks, Part 2

Ten weeks ago today, we found out we are about to embark on an adventure.  We knew we were headed for the new world as we looked forward to parenthood.  John and I talked about giving our daughter music lessons, teaching her how to play video games on the Xbox, and taking her all over the world.  We will still do all of these things, but the adventure was going to be different than what we had expected.

When they wheeled me into the neonatal intensive care unit (NICU) to meet my baby for the first time, one of the neonatologists wanted to speak to us.  He had suspicions that the baby may have Down syndrome.  He ratted off hallmarks of the syndrome, the mongoloid eye folds, brushfield spots in the iris, large protruding tongue, wide space between the big toe and little ones, and single crease on the palm.  He went on to tell us about the chromosomal abnormalities, three sets of chromosome 21 instead of 2, trisomy 21.  I had to cut him off and explain that I do know a thing or two about chromosomes and trisomy 21.  I teach this to my students.  I study DNA and chromosomes in my research lab.  My PhD thesis and post-doctoral projects were in molecular genetics.  During meiosis, for the generation of ova and sperm cells, the chromosomes separation events malfunction.  Instead of two cells getting one of each set of chromosomes when they divide, one cell gets both of chromosome 21.  Each cell in a Down syndrome individual has 47 chromosomes instead of 46.  The doctor told us that nothing was definitive until the chromosome tests are done.  Blood sample would be send out the following Monday, and results won't be back for another week to ten days.

I finally saw her.  It was so very bittersweet.  I touched her through the armholes of the incubator.  She was so soft.  She was much smaller than I thought and had a head full of soft dark brown hair.  She had all sorts of wires and tubing attached to her tiny body, IVs, monitors...  She had phototherapy to reduce bilirubin levels.  I called it the blue light special.  I studied her features and tried to explain away all the Down syndrome symptoms.  Her eyes are the typical Asian almond-shaped eyes.  I've got a big space between my big toe and the little ones; she inherited that from me.  I've met normal people with single creases on their palms.  This was going to be a long wait until the test results came back.  I was hopeful and was cautiously optimistic.

Even so, all sorts of questions went through our minds.  What will her life be like?  What sorts of needs will she have?  How do we tell people about her?  Do we tell people about her?  I thought about Becky and Sue Sylvester's sister on the TV show Glee.  I thought about Sarah Palin and her son.  Reality started to sink in even though I still held out hope that the test would come back telling us that she's normal.  It was a very long week.  The congratulations people offered us for the newborn seemed to sting.  But, how do we then tell the well-wishers about our daughter?  We smiled and nodded thank-yous nonetheless.  Most people didn't need to know.  Besides, the tests haven't come back.

Thursday, September 22, 2011

10 Weeks, Part 1

Ten weeks ago today, Baby Olivia arrived.  I haven't had much time or inspiration to write about her arrival until recently.

On the early morning of July 5, I went into the doctor's office for a routine weekly check-up.  There, I learned my blood pressure had shot up almost twice higher than my normal.  It wasn't a complete surprise since my ankles and legs have been swollen for several weeks prior.

"We take blood pressures very seriously around here" was what my doctor told me.  He immediately marched me up to the Birthing Center for blood tests and monitoring.  Mom was with me that day.  She had another appointment at the health complex.

That was a Tuesday.  On Tuesdays, I meet with a group of ladies and pray.  We pray for just about everything under the sun.  That particular morning, with Wendy and Renee, I remember praying for the baby that she'll grow up to be a great woman of God.  That morning, a theme ran through the meeting.

"God is good.  God is sovereign!"

Renee even had a song; Renee always has the best songs for the moment.  It was just a typical morning that day until the doctor's visit.

I got to the Birthing Center.  One of the nurses made me change into a hospital gown and took several tubes of blood for analysis.  I asked her, "Will I be able to leave in a couple of hours?  I need to get to work."  She chuckled and answered, "If you're lucky..."

By noon, I was hooked up to magnesium solution by IV to prevent seizures.  Nope, I was there to stay.  I was coming down with preeclampsia.  I was to be induced.  The baby will have to be delivered to cure me.  I called John, "We might have ourselves a baby by the end of the week."  I called work, "Don't think I'll be in for the rest of the week."  I called Wendy, "God is good.  God is sovereign!"

From noon on Tuesday to the afternoon on Thursday, I was hooked up to saline and more magnesium.  Except going to work, John stayed with me in the hospital, through the beeping machines and the nurses stopping in every hour.  He's a trooper.  By noon on Thursday, my water broke, I was in labor and in intense pain.  By around 3pm, the nurses were having trouble monitoring the baby's heart beat.  She was going into distress.  Through the pain and grogginess, I heard, "Emergency C-section."  More doctors and nurses swarmed into the room and whisked me away into the OR.  The last thing I remember was betadine being poured on my stomach.

When I woke up, John was there looking relieved.  They had a hard time reviving me.  They told me the baby was fine and she was very cute.  I was relieved.

So, Olivia was born on July 7, 2011, the year of the rabbit, at 3:25pm, weighing 3 lb, 10 oz and measuring 16.5 inches long.  She was born almost 5 weeks premature.

Still groggy from the magnesium and very uncomfortable from the C-section, I had to wait until the next day to see my baby.  That's OK.  Daddy had already gotten to hold her and take pictures of his little Bunny.