Stacy's "History"

    In July of 2004, Rick and I discovered that we were pregnant.  From the first blood test, things did not go smoothly.  The blood work confirmed we were pregnant, but the levels were not where they should be.  “Let us try again in two days,” said the doctors.  The next blood test revealed that the levels had risen, but they were still were not where they should have been.

    Levels growing at too slow a pace can be due to a miscarriage or to a pregnancy that is going too slowly and will ultimately miscarry.  “Let’s try again in three days” was the doctor’s response.  Finally, the doctor was pleased and our pregnancy was confirmed.

    Given the caution over the blood level results, the doctor wanted to do an ultrasound to look for a fetal pole.  An appointment was scheduled.  No fetal pole was found.  Maybe the pregnancy had terminated.  “Let’s try again in three days.”  At this appointment, a fetal pole was found.  Great news!  “Come back in two weeks.”

    Two weeks went by and we took the first freefall on what has been a continuing roller coaster ride.  The doctor found TWINS!  Sounds great right?  Well, the doctor noticed “something different” and sent us over to the hospital, that very day, to get another ultrasound using a machine that was more powerful than what was in his office.

    The hospital ultrasound confirmed that indeed, it was twins, but they appeared to be monoamniotic.  Complication #1:  This means that the twins were in the same sac, with no membrane separation.  The likelihood of them becoming tangled up in each others umbilical chords and losing one or both babies was between 40 and 60%.  The doctors even asked if we wanted to terminate given the risk.  Answer – NO!

    Complication #2:  By definition, monoamniotic twins are identical twins.  If something is genetically wrong with one twin, the same genetic defect will be in the second twin.

     No stress in any of this news and we are only 9 weeks into what is suppose to be a 40 week pregnancy (yeah, right!).  Doctors routinely suggest their patients wait until the 12^th week of pregnancy before telling people.  In our case, the doctor strongly cautioned us about sharing the news of the pregnancy with too many people given the extremely high risk.

    We were immediately referred to a group of obstetricians who specialize in high-risk pregnancies.  The doctors kept looking for a “membrane,” a divider between the two babies that would mean the risk of cord entanglement was no longer an issue.  Each time we went to the doctor’s visits, there was a very real possibility that the babies had not survived since the last visit.  Let us just say, those visits were not my favorite.

    At 16 weeks, an official diagnosis was made; no membrane was present.  The course of action would be, if the babies survived to 24 weeks, the first point at which they would even possibly be viable, I would be hospitalized at that time for continuous monitoring – up to the babies’ age of 34 weeks.  That meant I would be in the hospital for up to 10 weeks plus recovery time after the delivery.  Complication #3:  Who wants to be in a hospital for an extended stay, away from your family, during the busiest season of the year for work, and during the holidays.  A few days of self-pity and “Why us” and then it passed.  Now we were looking at going into the hospital as a great milestone.  If we can make it there, things will work out okay.  By the way, at this visit we found out the babies are girls.

    The doctors still were very forthcoming in giving advice about not buying baby furniture, and other items until after delivery.  As the babies would be born prematurely (it is too dangerous for them to stay in longer than 34 weeks), they would definitely be spending several weeks in the hospital.

    Next doctor visit in 4 weeks.  Seems like an eternity when you do not know if everything is okay.

     Week 20 – The doctors and nurses at the OB’s office are great, but the news is never good.  Complication #4:  One of the babies was determined to have a serious heart defect.  An initial diagnosis (when researched on the internet) seemed like there might be surgical options to correct this problem.  However, the OB specialists sent us to Stanford Children’s Hospital the next day, to meet with a specialist in fetal echocardiography (and, as it turns out, the guy is one of the founders of this field).  He changed the diagnosis to one that had no ability to be corrected.  Bottom line, one of the babies would not survive long after delivery.  We named her Kathryn Josephine Spurlin – after one of Rick’s grandmothers, Kathryn and one of my grandmothers, Josephine (two of the finest angels already in heaven).  We knew the baby would be taken care of when she got there.

    Again, they asked if we wanted to continue with the pregnancy.  Neither Rick nor I thought twice about it.  The answer was yes.  The only good news is that the heart defect was not genetic but developmental.  The other baby’s heart was normal.

    Rick and I went into seclusion while we essentially mourned the fate of one of our babies.

    Four more weeks until the hospital.  Given the twisted path of our pregnancy, we found it hard to “plan” for the hospital stay since nothing ever went according to plan.

    The estimated date for checking into the hospital was Monday Dec 6, 2004.  We had what was supposed to be our last doctor visit before hospitalization on Thursday, Dec 2.  It was supposed to be a quick last minute check.  Complication #5:  We lost Kathryn Josephine.  She had died sometime within the prior week.

    The death of the one twin meant a much greater risk to the second twin.  Since the cords were already tangled, the demised twin would “act as a sinker” and pull the knots even tighter around the remaining twin’s nourishment supply and, possibly, the living twin herself.

    The death of the one twin also meant an increased risk of the dead baby passing blood clots over to the healthy baby, possibly causing “neurological injury.”  In the world of medicine, “neurological injury” can mean anything from needing glasses to severe brain damage or even death.

    Again, they asked if we wanted to continue with the pregnancy, as there was no way to remove the dead baby without also removing the living one.  I think they finally got that the answer was always going to be yes.  For a doctor’s practice that only sees high-risk patients, we got the impression that even they were shell shocked at everything that had happed with us.

December 6 – “Camp Sam”

     On Monday December 6, 2004, I checked into the Antepartum ward of Good Samaritan hospital along with three suitcases full of clothes, books, videos and “stuff.”  While this is hard for most people to believe, including myself, we were happy to be there the next ten to eleven weeks.

    Good Samaritan hospital boasts a Level III NICU (Neonatal Intensive Care Unit).  The good doctors and nurses at "Camp Sam" can treat pretty much any problem a newborn baby might have, short of brain surgery or open heart surgery (those are done by Level IV hospitals like Stanford Children's Hospital).   And, as a side benefit, it's only minutes from our house.

     The rule of thumb is that every day the baby can “stay put,” and undelivered, equals three days it will not have to stay in the hospital.  If the baby had to be delivered at 24 weeks, there is in excess of 60% chance of survival in this hospital.  At 28 weeks (January 3, 2005 for those who don’t have a calendar handy), the survival rate goes up to in excess of 90%.

    As I mentioned earlier, our goal was to make it to the full 34 weeks if possible.  As fate would have it, 34 weeks and 1 day (February 15) is a special day for us.  It will be the 15^th anniversary of our first date. 

     I prayed every day for that to be the date.  I unashamedly asked the same from each of my friends, family members, and even strangers.

     After two weeks in the hospital, I started loosing weight.  I had gestational diabetes for which I was put on a diabetic diet.  They said that was normal at the beginning but I had a nagging suspicion it was something else since I also couldn’t feel the baby move as often and when I did, it was always positioned much lower than previous movements.

     I called Rick and begged him to make the doctors look via ultrasound.  They did and indeed the amniotic fluid level was low.  This was a danger for any baby, but especially so for a baby tangled in another baby’s cord.  The more buoyancy, the better for not being strangled.  There was nothing that could be done but keep monitoring.

    An ultrasound was scheduled for the Monday after Christmas to check on the baby’s growth.  Rick talked the doctor into doing it on Christmas. Good news.  The baby had grown an appropriate amount since they last took measurements.  Things were going well, all other problems not withstanding.

     I asked the doctor on December 27 if things looked stable enough for my husband to be able to leave town for a day and go down to visit his younger brother, Bobby, who was losing his fight with terminal cancer.  He had not been down to see him since I had checked into the hospital.  I was finally feeling optimistic and comfortable about how things were unfolding.  Rick and I talked that evening about setting a day within the next week for him to go down to southern California.  That night, Rick went to a dinner party and his first home-cooked meal in weeks.  Things were starting look better.

    We both should have known better.  Our schedule throughout the pregnancy was one big event every three weeks.

    At 5:20 on the morning of December 28, my water broke.  It woke me up.  I rang the call button for the nurse.  Simultaneously, the baby’s heart rate started “dipping” (a euphemism for stopping).  There were only two nurses on duty at the time; one tried to keep the baby stimulated and on the monitor while the other one called the doctor.  I called Rick and told him to come over because something was happening.

    While waiting for the doctor, I had all sorts of papers and consent forms shoved at me to sign.  Yes, of course I want anesthesia for an emergency C-section!

    The doctor arrived at the same time Rick did.  His assessment was quick – “it’s time.”  Those words no sooner left his lips than the nurses (others had arrived at this point to start a new shift) were wheeling my bed into the operating room.  The baby was in distress and there was no time to waste.  One person was trying to take blood, one person was trying to administer an epidural, one person was trying to get me undressed and prepped, one person was trying to keep the monitor in place to make sure the baby was still alive.  All were giving me orders at the same time.  Thank goodness for Janet, one of my “regular” nurses, who kept telling me what they wanted me to do when I couldn’t hear all of them at once.

    It sounds confusing and scary, but it wasn’t.  We knew this could happen.  It actually was “just another day in the hospital”.  Maybe we were in shock.  I lay there, just waiting.  I heard one little cry, then someone ran out of the room, and they said Rick could go with the baby.  I heard the doctor say that “is what we were afraid of” - Kathryn’s umbilical cord had been tightly wrapped around Stacy’s neck.  When the water broke, there was no more cushion, Stacy was being strangled to death.

    All we could think of was thank God the plan had changed from the original.  The old plan was to go into the hospital at 28 weeks.  This was week 27.  We would have lost this baby too if we had not been there.

    Our Baby Girl Spurlin weighed 2 pounds and 1 ounce and 12 ½ inches long.  She was 3 months early.  She was tiny and she weighed less than a quart of milk – but everything was there!

    She had to be put on a ventilator, but only for a couple of days.  The doctors marveled at how quickly she came off and was put on a milder form of oxygen support.

    The next eleven weeks would see ups and downs in her progress and condition as you can see in the photos.  She required various tubes and procedures to stay alive and to grow.  She took it all with a trooper’s attitude that most scrappy little preemies have.  They are strong little people, stronger than most adults are.

    It was still hard to get too optimistic at first, we had so much bad news.  She was still very fragile and not out of the woods by a long shot.  Her turning point for me was when we were down in southern California at Rick’s brother’s funeral at the beginning of February.  Rick’s brother had called me a few days before his death to say goodbye.  He knew it would be the last time we spoke.  He told me he loved me and Stacy and that he was sorry he did not get to meet her but that he would watch over her from heaven.  He simply asked that we tell her about him. That was a promise I had no trouble making.

     As I said, the turning point was at Bob’s funeral.  I flew down the morning before the funeral and was to fly back the next evening.  It was hard leaving Stacy with no one to visit her.  On the day of the funeral, we called in to see how she was doing.  Bob kept his promise.  He was most definitely looking out for her.  In the 36 hours I was gone, Stacy had weaned herself completely off of the C-pap machine (oxygen and pressure assistance) and never went back on.  She turned a corner… with a vengeance. 

     Major steps and minor setbacks took up the remaining 5 weeks in the NICU and on March 14, Stacy came home, 11 weeks after being born.

     Nothing can be as good as that!