The destination may or may not be specified, but even when specified, it is by no means certain. And, the odyssey, between departure and destination, is the most uncertain of all.
My odyssey began 41 weeks ago as a single cell. The planned journey would have my cells multiply, rather uneventfully, for 9 months, while my mother and father went about their normal business. It was anticipated that I would arrive, ready for life, at the Queen of the Valley Hospital on September 23, 2011.
Alas, fate had a different plan.
I started out life with a twin. But, my twin was not meant for this world, and as such, it demised within 7 weeks. During my twin’s demise, the womb that I was growing in became a hostile place, but since I survived the tumult, Mama and Daddy decided that I must be Hercules. That would turn out to be a good thing, because I would need great strength to survive the next 7 months.
Mama did not know it at first, but she has what the doctor’s call a bicornate uterus. A bicornate uterus is a uterus with essentially two cavities, which means that the space that I had to grow in was about half that of a typical uterus. Furthermore, I had to contort my body in perplexing ways to navigate my dumbbell shaped home.
After 6 more weeks, when Mama was about 13 weeks pregnant, I was getting more comfortable and skilled at maneuvering in my womb when all hell broke lose.
Overnight, Mama’s white blood cell count shot through the roof; it went from a standard value of 8 to over 30. Simultaneously, she experienced excruciating pain in her abdomen; furthermore, my father was in London at the time and it took him two days to get home, adding to everybody’s anxiety. Mother was so tough that she refused to take even Tylenol as she was worried about what the drugs might do to me in utero.
After two days of intense agony, she went to the hospital and had an ultrasound of her abdomen, which revealed a very large gall stone. It was decided that she undergo out-patient surgery to remove her gallbladder. As you can imagine, the anxiety, inside and outside, was intense as even simple surgeries become more risky when the patient is pregnant.
Alas, the surgery would not be simple.
When the surgeon (Dr. Loftus) was performing the laparoscopic procedure, he found a large and unidentifiable mass in her intestine. He consulted Daddy, while Mama was still under anesthesia and on the operating table, and they decided to remove the mass completely--without waking up Mama.
As such, the surgeon switched to an open abdominal surgery-which means that they made a large cut in her abdomen to find and remove the unknown mass. My presence made that procedure far more challenging because the outer wall of my home would be exposed.
The great news was that the surgeon performed brilliantly and the mass turned out to be a non-cancerous abscess that was caused by the perforation of Mama’s intestine. That explained her very high white blood count.
What started out as a simple 1 hour out-patient procedure turned into a 4 hour surgery that required about 2 weeks of recovery time in the hospital with a tube in her nose, and not being allowed to eat anything, and another 4 weeks at home in bed. Furthermore, we learned the scary fact that Mama’s system had become life-threateningly septic, meaning that she needed a barrage of seven serious antibiotics to fight off the systemic infection.
During this hospital stay, Mama received wonderful thoughts from dozens of family and friends; those thoughts brightened her spirits and helped her face the darkness with courage. After two weeks of brutal pain, during which time Mama fought like the Mother of Hercules, she recovered sufficiently so that she could go home and continue her rehabilitation there.
Throughout this drama, I tried hard to stay strong and carry on inside my bicornate home. Mama had been given a deluge of powerful drugs, such as Fentanyl, Dilaudid, and Propofol; those drugs gave me a mild buzz, but I was, surprisingly, able to keep a solid hold on reality throughout, which helped me survive.
After several weeks recovering at home, Mama and Daddy thought that they had seen the worst, and that they would be able to enjoy a normal pregnancy for the next 23 weeks.
They were wrong.
At week 20, the combination of the invasive surgery, the bicornate uterus, and the previous deluge of drugs, resulted in mom’s cervix dilating. That was very bad.
At 20 weeks old, I would not have been able to survive outside the womb. So, Mama and Daddy knew that they had to do whatever they could to keep me inside. Their first move was for Mama to have an emergent cerclage procedure-which means that a surgeon stitched Mom’s cervix closed. So for the 3rd time, Mom was under anesthesia and spent time in the hospital...I began to think that normal adults spend about 50% of their time as hospital patients.
The cerclage was well performed, and Mom and Dad headed back to Mt. Olympus; but, Mom was under strict bed-rest orders. That meant that Mama had to stay in bed all day, every day, until I was born. Mama and Daddy hoped that I would stay put for another 17 - 20 weeks, but I had different ideas.
After everything that I had survived in utero, I started to think that I was ready to take on the world. So, I started to plan my grand entrance.
For the next 4-weeks, Mama was on bed-rest at home. That meant that Daddy did it all; he worked full time running his company; after work he would cook, clean-up, and help Mama get from couch to the bed. They had a lot of help from Grammie & Grandpa, who were absolutely wonderful. Their presence allowed Daddy to go to work without worrying so much about Mama. Mama even got readmitted to the hospital during this time for a few days due to a partial small bowel obstruction. Those 4 weeks were rough on Mama & Daddy, so, I decided it was time to enter the world.
I started to force my way out and into the world again at the ripe old age of 25 weeks. But, Mama and Daddy had different ideas. They hurried to the hospital. At the hospital, the doctors went into overdrive to try to keep me from making my grand entrance so soon. Mama was admitted as a patient and immediately put on a rich cocktail of IV tocolytics meant to slow her contractions that she had been having every 10 minutes since 16 weeks gestation. The drugs included magnesium sulfate, indocin, and nifedipine.
The first regimens of these drugs did slow my advance; and the next several weeks were challenging for Mama, Daddy, and me. Mama was now living in her 10x15 hospital room 24 hours a day, while Daddy would sleep at the hospital and commute to Berkeley or New York or Houston for work.
During this fourth stay in the hospital, Mama and Daddy had an outpouring of love and support from family and friends. Indeed, many of their friends brought dinner to the hospital and spent hours with them. Those visits lifted Mama’s spirits and gave her the courage to stay strong, even after she was diagnosed with Gestational Diabetes the week before I was born.
After a 5 week battle between me, Hercules, and all the tools and technology of modern medicine, ancient strength triumphed over contemporary brains. As such, on July 7th 2011, I decided not to wait any longer. I had, after all, fully conquered the womb, and as such, it was time for the next of my 12 labors.
I entered the world after 29 weeks in the womb, 11 weeks early and 30 miles to the south of the planned destination at John Muir Hospital in Walnut Creek, CA. But my odyssey was far from over.
I entered the world at the fighting weight of 2 lbs 9 ounces and ready to take on my second labor. It turned out, however, that the doctors refused to let me leave the hospital because I was so small; I couldn’t breath on my own; and I couldn’t eat on my own. As such, immediately after birth, I was transferred to the Neonatal Intensive Care Unit (NICU) and put into a $100,000 humidity and temperature controlled incubator.
The NICU is an intense place. To enter the NICU from the outside, one must pass two guards and a locked door. Inside, the nurses, who are exceptionally well trained and hard working, run the show. All its captives’ vital signs are constantly monitored at the central command station, and one of the doctors is a 6ft 4 inch German who barks orders with the culturally appropriate authority.
My NICU team set goals for my development. The first goal was to breath without the positive pressure mask. I accomplished that goal in 3 days...no sweat. The nurses were impressed, but I reminded them that I am Hercules.
Next, I was supposed to stop losing weight and start gaining weight. Over the first week, my weight dropped to 2 lb 4 ounces, but then it started to climb. My the end of July, I was nearly 4 lbs, and by the end of August, I was nearly 7 lbs. Again, my nurses were impressed.
In August, although I had been breathing without positive pressure for over a month, I was still on a passive flow nasal cannula. My oxygen saturation levels were frequently dropping from the high 90’s to the mid 70’s. That was because a valve, called the ductus arteriosus, that controls blood to and from my lungs and heart was stuck open. That little valve caused a fair bit of anxiety. Week after week, the doctors monitored the valve, and week after week, there was no change. I also had “preemie lungs”…meaning my lungs were not fully developed when I was born.
Between my preemie lungs and the ductus arteriosis, I had a hard time getting off the last bit of my oxygen; and the lack of progress meant that my feeding progression had fallen behind.
For the first week, I was being sustained by sugar and protein through my IVs. Then, the doctors put a nasal gastric (NG) tub down my throat so that I could digest some of the great milk that the Mother of Hercules was producing. After about 3 weeks of being fed exclusively through the NG tube, I started to drink a bit of Mama’s milk through a bottle. But, since my respiratory system was still not quite up to par, the rate that at which I drank her milk did not increase very fast.
After about 8 weeks of this struggle, my oxygen levels, seemingly overnight, improved dramatically. The little valve was getting smaller on the exams, and my lungs were finally maturing, to the great relief of Mama, Daddy, and my Doctors.
At the beginning of September, with my O2 levels steady, I became determined to escape the NICU and join Mother and Father on Mt. Olympus. Getting out meant eating on my own. So, I focused.
At each feeding, my objective was to consume as much milk as possible through the bottle--as opposed to through the tube. I started to make great progress, but it is exhausting work…akin to running a Marathon each time. After about three weeks, I had gotten up to drinking about half of my food through the bottle.
At that point, the Mother of Hercules did something unexpected; she told the hospital that she was taking me to Mt. Olympus, even with the NG tube still in my nose. Everybody was surprised, but they sensed her determination. My feeding continued to progress, but regardless, one week after Mother stated her intention, we were packing up my hospital room. She & Daddy were confident that I could continue my feeding progress at home…and frankly they were tired of driving an hour each way to the hospital every day to come see me.
Packing up the room that had, effectively, been my cell for 3 months was emotional. In a weird way I had come to like the place. It was, after all, the only home outside of the womb that I had ever had; I had also become very fond of the caring and skilled nurses who took care of me. While leaving that room for the last time, I had a profound realization that dozens of mortals had been devoted to helping me get into the world safely. Even someone with godlike strength needs a community and needs others.
And so, Zeus and Alcmene put me in their chariot, and we traveled north to Mt. Olympus.
The point of departure was certain; the planned destination was wrong; the timing was wrong; but the journey was profound. I almost didn’t survive; my twin didn’t survive; and Mother was admitted to the hospital on 4 different occasions--once for a life threatening issue. The odyssey was more challenging than Mama and Daddy could have imagined at its onset, but they stayed strong and carried on; their fortitude was the first lesson that they taught me.
It might have been nice for Mama to have had a typical pregnancy; that certainly would have been easier. But, out of the hottest fires come the strongest steels, and as Dad’s hero often said, “A life without strife is a life not lived.”
The journey is now a part of our fabric; it made us into a family.
It made me into Hercules.
My going home outfit courtesy of the Graubarts!
Tummy time on my activity blanket & snoozing on the Boppy Pillow
I LOVE IT! And I am SO happy for you all!
ReplyDeleteMy dear precious Declan,
ReplyDeleteLife will get easier. You have already been challenged far more than most mortals, ever! Your peaceful demeanor belies your struggle to beat all odds and that you did. I love you and look forward to sharing play and exploration with you. The world is a beautiful place and I think you 'll make the best of it. You have the luck of the Itsh, the strength if the gods and the most determined parents! All my love, Gran
Such a great end to quite the story. Love to see everyone together at HOME!!!
ReplyDelete