A Year of Amazing Grace by Evan & Annamarie Ross Shu

Last month, our daughter, Amanda Grace Shu turned one year-old. That year shook our lives to the core and challenged our faith to its very roots. It felt like we went to hell and back — and yet, at its end, we felt like we have been given God's most precious gift — our daughter's life itself.

In the spring of '97, Greater Boston was hit with that April Fools Day blizzard that dumped some four feet of snow on all of us. It knocked out the power and telephone at our house for three days, yet we really didn't mind at all, because we had a great secret: "we" were finally pregnant! After so many years of trying, we were almost afraid to believe it could be true. In fact, we had had a scare just a few days earlier on Easter Sunday. Annamarie had to call Evan back from early morning choir practice to take her into the emergency clinic, because she was experiencing severe abdominal pains. We were relieved to find our fears unfounded as the ultrasound showed a continuing viable pregnancy (a beating heart) and we were even intrigued to learn that there was also a slight possibility that we might be having twins.

To our surprise, subsequent ultrasounds in the weeks that followed showed that the maybe-twins became definitely twins and maybe-triplets; and then the maybe-triplets became definitely triplets. Evan was ecstatic about the possibility as he thought, "No wonder God made us wait so long; now he is giving us a full family in one shot!" Annamarie was in utter shock for many days wondering how they could possibly handle triplets. Eventually our two opposite reactions met in the middle with Evan sobered by the logistics of raising three babies at once and Annamarie growing to not only accept the possibility but starting to welcome and cherish it.

We dove into the process of becoming triplet parents. Evan found the Triplet Connection on the Internet that offered a lot of support and good advice. Annamarie was amazed to find that there were five other families with triplets in our town of Melrose alone (yes, it must be the water) and that Massachusetts led the nation in multiple births. We did our best to follow all the advice on diet and rest that we were learning about from various sources. We got hooked up with an excellent obstetrician, Dr. Maria Mascola from Massachusetts General Hospital and started to see her every two weeks. We signed up for special classes on multiple pregnancies. We asked Roger Burke's crew to add another bedroom and bathroom onto the third floor of our house. We talked to our families about coming out to help. We picked out names. We made plans upon plans upon plans. It was a very exciting time for us waiting for the arrival of our triplets in late October or early November.

Then came the shock that caused all our plans to come crashing down. On a hot August night, we were relaxing watching NYPD Blue on television, when Annamarie's "water broke". In frightened panic, we both knew it was way too early as Annamarie had only just passed the 24 week point of the 40 week full term. We rushed to Mass General and prayed that they would know what to do to save the pregnancy. The doctors there confirmed that yes, one of the three embryo sacs had broken and they told us that likely within the next 24 hours Annamarie would go into labor. Around 3 in the morning, a very tired-looking Dr. Mark Ogino, the attending physician on-call from the NICU (Neonatal Intensive Care Unit), came to talk to us.

Dr. Ogino told us that chances were likely that Annamarie's hormones would soon trigger the start of the labor process and that fetuses born at 24 weeks had only a 20% chance of making it. Of those that did make it, most suffered from severe handicaps of one type or another. He told us that the steroids that Annamarie was now being given would help speed the development of our babies' lungs which was the crucial factor in the 24 to 26 week period of growth. He also told us that 26 week old fetuses actually have an 80% viability rate, but he did not raise our hopes that Annamarie would last that long. He asked us to prepare ourselves to make some very difficult decisions in the hours ahead.

Early the next morning, we called our families, and we called Jim & Linda Crawford, as well as Janet Butler from Old South Church. We asked them to please pray for us and please put out the word to everyone to pray for us. When the best that medical science can say is "let's wait and hope for the best", we felt so lost and helpless. Prayer became our only lifeline. We wanted everyone we knew, believers and non-believers alike, sending up prayers en masse to the Almighty.

As the next morning became afternoon and evening, a small ray of hope began to shine through as Annamarie didn't commence her labor as predicted. The 24 hour mark came and went and we breathed a small sigh of relief that at least the steroids had been able to take some effect. When 24 hours became 48, we began to hear other miracle stories about women whose water had broken, yet were able to bring their babies to near full term. Evan began to make trips from home bringing books, music, and good luck charms as the staff started to encourage us to make the hospital room our home in the hope that our stay would be a long one.

Six days later, we had started to settle into a routine at the hospital. August the 18th was our wedding anniversary, and we decided to celebrate the day by ordering our favorite Indian food for a takeout anniversary dinner. But our anniversary got spent in an entirely different way. Early that morning Annamarie began to have rhythmic pains that were quickly identified as labor pains. The staff administered IV fluids and other medications that they hoped would stop the labor, but just as the pains would seem to dissipate, they would start up again. Again, we put out the call to OSC to please pray for us — miraculously, the labor stopped for two hours. But then, it began again with more force and Annamarie's cervix began to dilate beyond the point of no return. Annamarie had now been in labor for well over 16 hours but unlike most other normal deliveries, she was trying with all her will to stop the contractions. She was exhausted and at her rope's end.

Given that all the other options seemed even more risky to the health of both Annamarie and our babies, we accepted Dr. Mascola's recommendation to go ahead with a Caesarean section delivery. So shortly after 11 p.m., we entered the delivery room along with well over a dozen doctors, nurses and technicians — you see, in addition to the delivery team, an intensive care team must be ready for each triplet. Melanie came out first, kicking and screaming — APGAR score 10; the best on this 1 to 10 scale measuring infant birth status — great! (But wait a minute — wasn't "she" supposed to be a "he"?) Next came Amanda, APGAR score only 1, but then rising to 5 and gaining some stability. Last to arrive on the scene was our Noah, who was in trouble from the very beginning it seemed. Both of us were in a bit of daze while all of this action was happening; certainly more Annamarie than Evan due to the sedatives and anesthesia. But it all seemed so surreal to both of us. Finally, it was all over, and the doctors were telling us that Noah (ah, what a sweet face) could not be saved but that Melanie and Amanda were stable and down in the NICU. Noah weighed 1 lb. 3 oz.; Melanie weighed 1 lb. 5 oz.; and Amanda weighed 1 lb. 12 oz.

Amanda in her NICU isolette @ 2lb. 9 oz.

Over the next few days as we consulted with the various doctors, the prognosis for both Melanie and Amanda was "hopeful"; but they obviously had a long way to go. They were so tiny to us — you could hold them each completely in two hands — yet they were so full of that precious stuff of life as they grabbed firmly onto our pinkies with their exquisitely formed tiny hands. The pain of parenthood hit home as we ached seeing them hooked up to so many tubes and wires; surrounded by enough equipment and monitors to support the Bionic Man it seemed. Jim Crawford came at our request to baptize and mourn with us over Noah; his sweet face made Evan truly long to be the father of a son for the first time — up until that point, he had always been partial to little girls. Jim read to us a moving passage from Genesis about how God promised Noah that there would never be a great flood like this one again; and he sealed his promise with a rainbow. We indeed prayed that this would be the end of our personal great flood.

Little did we know that this juncture was not the end of our ordeal but just the beginning of what we began to call our "tunnel". Many times, this tunnel seemed to be of indeterminate length with not even a hint of light at its end. At first, however, especially to Evan, it seemed like a fascinating new game, full of new terminology and concepts. He soon became adept at reading all the various monitors and Annamarie often admonished him not to make any equipment setting adjustments, and wait for the nurse, although he swore he knew what needed to be done to correct the beeping alarm of the moment. The seriousness of this "game" changed to one of life and death on the fateful Sunday of August 31st. Melanie had just sailed through heart surgery that week to correct an open duct in her heart (Patent Ductus Arteriosus) and then the next day had a central intravenous line installed. She appeared to be making a good recovery as Evan visited early that Sunday morning, after which he sang in the choir at church, and then went home to watch his beloved Patriots on TV. He cheerily told Annamarie and her mother Carol as they prepared to go into the hospital that both girls appeared to be doing well. As they left, Evan went up to his office to do some paperwork and cranked up the TV full blast to watch the Pats crush the Chargers. Sometime in the third quarter, he heard his front screen door open with neighbor Marie shouting, "Hello! Hello!" Apparently the hospital had been trying to call repeatedly for Evan to come in, but he did not hear the phone over the television din. Things had suddenly turned tragic for our Melanie Hope.

Evan went in thinking there must be something they could do to save her; but by the time he arrived, Dr. Roberts told him as he had told Annamarie that Melanie had suffered terrible brain damage due to a prolonged lack of oxygen and that we needed to think about "letting her go." "NO!" cried every part of Evan's gut; but Annamarie firmly repeated the sad facts and made him see that there was little other choice. We reached Jim Crawford up at his vacation cabin in New Hampshire that day and to our great appreciation and gratitude, he volunteered to make the drive down to baptize our Melanie as she made her passage over. You might recall that Sunday was the same day that the world learned that Princess Diana had tragically died in an automobile accident. But we had no tears left for Di, as our own princess was gone as well.
From that point, every decision seemed like life and death to us. Amanda's progress was painfully slow, particularly in terms of putting on weight. Even though the NICU staff assured us that our presence every day was important to Amanda, it was hard to not to feel totally powerless and useless. We took to making origami paper cranes for her, writing a daily message inside from each of us. Someday, we will let Amanda open them and read our daily thoughts. One wonderful thing we were able to do for her from time to time was something called kangaroo care where the baby, tubes and all, is placed skin to skin on the parents' chest. Feeling her little frame cling to our bodies and feeling her chest move up and down and then to sense her relaxation as she seemed to realize that we were Mom or Dad was a little bit of heaven in our otherwise tough daily grind. The worst moment of each day seemed to be first thing in the morning as we called in for the report on how Amanda had done that night. We were often put on hold as they needed to track down the nurse or that nurse had to finish what she was doing first; but that time on hold became a terrible purgatory for us and our imaginations ran wild about what might or might not have happened. Sometimes even worse was being told that a doctor needed to consult with us — almost always bad news. Evan soon got a reputation for not wanting to talk to any doctors; he'd rather find out from the nurses or from Annamarie.

Over the next months, we found that our attitude gradually changed. In the beginning, we were so grateful for all the doctors and nurses for doing what they could for our children. Without question, they resuscitated and saved the lives of both Melanie & Amanda countless times, many of which we witnessed firsthand. Yet, as we know is a common response in long term hospitalizations, it often seemed to us that Dr. So-and-so or Nurse So-and-so was "the enemy", refusing to see what we saw, changing a treatment that we saw as vital. One huge problem to us was that Mass. General is a teaching hospital and so regular rotations of the attending physician, the residents, the fellows and interns occurs every two weeks or else monthly. We had been told that each attending physician had a "slightly different" philosophy about care in the NICU, but we soon began to chafe against these differences and learn intimately about these slightly different philosophies. For example, one physician would encourage us to do kangaroo care as much as possible, while the next one two weeks later would restrict it as being "overly stimulating" for the baby. We learned quickly that to many of the doctors the "data" was what counted; so we too learned to hang on the vital data of weight gain or blood count or respiratory support levels.

Yet, while we found ourselves starting to resent the NICU control in general, we learned to love certain staff in particular. So many times, Amanda's lead nurse, Debbie Bobola, would help us in our efforts to improve conditions for Amanda. She helped us do little things for her like putting cherry chapstick on her lips to keep her enjoying her sense of taste and smell in the face of all the other medicinal applications that she had to tolerate. Also in Dr. Ogino, the same doctor who delivered to us that sobering and stunningly accurate prognosis that first night in the hospital, we found a doctor who seemed to look at Amanda the person instead of just the "data" of "TRIPBANNAM (her chart reference as Annamarie's "Triplet B"). Finally, one of the hospital social workers clued us in that we could designate one attending physician to oversee Amanda's whole care, so that we would not have to be quite so much at the mercy of the "doctor du jour". Naturally, we picked Dr. Ogino, who was later very instrumental in getting her released much earlier than any of the other staff was willing to allow.

Over the long 133 days that Amanda stayed in the NICU, there were many, many crucial events that we could cite as being pivotal. There were numerous infections, the need for blood transfusions, a collapsed lung, a racing heart, and finally, in early November, she needed laser eye surgery to correct a condition known as ROP, Retinopathy of Prematurity, where the blood vessels start growing into the eyeball, detaching the retina. At the same time, she was battling a difficult infection and what we thought might be a collapsed lung. She was still having trouble gaining any weight — not even at 3 lbs. yet. We found ourselves in what seemed to us a desperate battle not only with Amanda's various ailments, but also with the many "turfs" of responsibility that overlapped among the many specialists that saw her. Fortunately, as things seemed at their darkest, suddenly, Amanda started to improve remarkably. She sailed right through her eye surgery and from there on out, she made much more steady progress.

While this was an extremely difficult time for us, we were so grateful for the multitude of support we received from our family, friends and in particular, the community of Old South Church. We knew so many people were praying for us and for Amanda Grace. We asked Janet Butler at church to serve as our hotline and pass along information to people who called. She told us that in addition to regular calls from OSCers, she also got calls from as far away as California and Oregon. Evan, computer geek that he is, was also able to use e-mail to keep many family and friends informed. He even set up her own web page with her current status and pictures that a number of people told us they consulted regularly. We received many messages in many different forms, all sending support, love and prayer our way — from both close friends to strangers who had heard about our plight from a friend of a friend. These many messages of light gave us the strength to face the next step in our long, dark tunnel.

Just before Christmas, suddenly there really was light at the end of our tunnel as Dr. Ogino told us that he had a plan that could get Amanda discharged very soon, even though she was still partially on nasal tube feeding and not completely bottle feeding as MGH had always required before discharge. It involved us training and demonstrating that we could handle all feedings (including installing the NG tube down Amanda's nasal passage) and having a Visiting Nurse come out to see us daily. At that point, we were willing to do anything to get our daughter home. Finally, on December 30, a day we will hereafter call Merry Mandamus Day, we were able to bring her home -- all 5 lbs. 7 oz. of her.

In contrast, the second half of Amanda's year has been so much sunshine and light that we can hardly believe it. It has been full of the "normal" trials of parenthood: sleepless nights and changing dirty diapers, etc. — that seemed very light duty to us compared to our hospital vigil. We found a wonderful pediatrician in Dr. Margaret Higham, who when we first visited her on October 31st was dressed for Halloween as Glinda, the Good Witch of the North — which we took to be a very good omen indeed. She recently told us that Amanda's development since coming home is quite remarkable for a premie born at 25 weeks — nothing short of miraculous. Amanda is developing wonderfully though she is still small at 13 lbs on her first birthday. She is a very "easy" baby, but best of all, she has the sunniest of dispositions that seems to chase every cloud in our sky every time she gives us one of her special smiles.

Amanda at 1 year & 13 lbs. is all smiles.

The high point of this first year, aside from bringing Amanda home, was undoubtedly the weekend of April 25-26th. On Saturday, we had a small service in our backyard in which we created a new garden in memory of Melanie & Noah. We put their ashes at the root of a flowering dogwood tree and planted forget-me-nots and bleeding hearts. We remembered how precious they were and how we felt like we knew them, even in their short stay here on earth. The next day, Sunday, was Amanda's baptismal day. Jim's sermon on the "Sacrament of Grace" touched us deeply and we were able to sing with the congregation, "Amazing Grace" which we had sung hundreds of times to Amanda in the hospital. As that holy water touched her forehead, we could not help but feel incredibly blessed.

While we would not wish our experience on anyone else, we know that many of you have also had long dark tunnels that never seemed to end. In your time of need, we hope and pray that you will also find the communal love and support that we did, and that through God's abiding love, and in spite the "many dangers, toils and fears", you will feel as we do: