22 March 2017
[[EXTREMELY LONG]] (cross-posted on the Book of Faces)
So, WOW. Fourteen years ago today, at 31 weeks, 3 days' gestation, I gave birth to my identical twin sons Robert "Robby" William and Jack River. Robby was born first, with APGAR scores of 0,0. (Rob was not with us in the operating room during the c-section, because he was busy taking Chloë to a babysitter so that he COULD be there. Apparently, my surgeon felt it could not wait for Rob to come back.)
Then Baby B, my little bunny rabbit Jacky Riverbottom, was born with APGAR scores of 0,4, if memory serves correctly. There was no crying when either boy was born. I had no one with me except extensive medical personnel, both on the OB/GYN side of things taking care of my ute, and two teams for the neonates introducing themselves to the world. So nobody cried, and the room was completely hushed, except for the sound of this mother crying out, "What's wrong? What's going on? Why aren't my babies crying? What is WRONG?" and being told, "Shh. The doctors are with them now."
Finally, after many long minutes that felt like 200 years, Jack let out a goat-like wail that would foretell of about two or three months of bleat-crying. I didn't mind it. I found it amusing. Funnier still, to me, during his 28 days in the NICU when one goat would wake up and start bleating, setting off all the other preemie-goats at all different pitches. I don't know whether it aggravated the nursing staff, but it was a welcome sound to me because it meant they were ALIVE.
On the other hand, Robby never cried. Ever. He never opened his eyes; he never looked at me, his mom, who had carried him for those seven months and laughed when he, definitely he, kicked the TV remote off of my enormous belly. The mom who, also a biologist, was exceedingly excited about watching my twins grow and change, sometimes in identical ways or maybe in mirror-image ways, and oh! The tricks they would play on me and on Rob and on Chloë!
But that would never happen. Instead, for three terrifying days, Robby had a tube down his throat, four tubes coming out of his chest - 2 on each side - because his lungs had popped holes that many times from all the fluid pressure resulting from Acute Twin-Twin Transfusion Syndrome. He lay naked on an open diaper that he never filled. The umbilicus was still attached throughout that time, so I'll never know if he was going to be an innie or an outie. I never got to squeeze his little tushy - yup, I'm one of those heiny-grabbin' moms. I never gave him a bath, put pajamas on him, fed him mashed peas, or any other wonderfully banal parental thing.
I never caught him red-handed in the cookie jar. I never got angry notes home from his schoolteacher about his behavior. I never saw him with my own eyes throw a snowball at my bedroom window when he was out playing with his sisters and twin brother. He never engaged in a war of "Quien es mas macho" with Jack or Sophia, a stronger child than her mother is. I never did any of those ridiculously mundane things with my older son that many, many moms and dads take completely for granted, every single day of their kids' lives.
Instead, for three days, my husband and I would wheel down the hall from my recovery room, where other babies nursed and cried, to the NICU. We'd have a quick peek at Jacky to make sure all was well, and all generally was well there. We quickly headed over to Robby's bedside, which was curtained off from the rest of the Level One infants, with notices that anything above a whisper were forbidden, because this particular child's oxygen levels would dip lower and lower.
I watched that O2 saturation score as though my OWN life, not my son's depended on it. I watch as two, three, four, five neonatologists came by with a squadron of interns and frowned, looked at his chart, looked at him, did some more frowning, and then nodded at me before heading over to the NICU's computers to do some expedient research on how to save this "wimpy white boy," as they are known among NICU personnel.
Late on Day Two, his primary physician came to us and told us about an experimental ventilation procedure that had helped patients much older than this one, but that it absolutely was not recommended for 31-week premature babies. If we would sign off on it, they would try it. It was his last chance.
Twelve hours into the procedure, Robby's O2 sats rose from the low-mid 70s (which is BAD) all the way up to the low-mid 90s! Which was incredible! We had prayed, prayed some more, and prayed so much they ran into each other so we couldn't have deciphered a beginning or an end to the prayers. Please, God, please. Just let our baby get well enough to BE. OURS.
A few hours later, the oxygen levels dropped again. First into the 80s, and the all the way to the high 70s. I could not take it anymore. I was exhausted, both physically from having birthed twin boys and from having incessantly pumped my milk for TWO children, and emotionally from the heart-wrenching drama of which we found ourselves the main characters.
So tired was I, and Rob, that in the beginning of this oxygen drop, a nurse suggested we take naps. We finally agreed to it. Rob started to leave, but I leaned in. I leaned close to my precious, desperately sick son, and whispered to him. Maybe I just mouthed it and thought the words, but I'm pretty sure I whispered them audibly in case he wasn't, you know, telepathic. "Robby. If you need to let go, it's okay. I know you're in pain. I want more than anything to be your Mommy and take you home, but if you just can't do this anymore, please please don't just stay here for us. We won't ever be angry with you. If you need to let go, let go. We will love you forever." And then I went to sleep down the hall in my hospital bed, having cried my prayers for a miracle that I KNEW God could provide, over and over until I lost consciousness.
The next thing I knew, almost exactly three days after Robby came into this world on March 22nd, 2003, at 12:21 PM, his primary doc was shaking my bed and me awake to talk to us. There were a lot of words, most of which I just remember the gist of, but I will never, ever, ever forget when he looked me in the eye and said, "The things we are doing to try to keep him alive are now hurting him. Continuing would do irreparable damage. His oxygen level is no longer compatible with human life."
No longer compatible with human life. That sunk in hard and fast. Rob and I looked at each other and nodded. One of us, doesn't matter whom, said, "It's time," and off we raced to the NICU with the doctor.
As Christians, we believe in Heaven and Christ our Savior, and we also believe that children (or anyone) should not be baptised until they are old enough to make the decision to do it for themselves, out of their own understanding of the meaning of the act. Nevertheless, this dear, sweet child, would not ever have that chance. We asked for the chaplain to baptize our baby, and we asked for the nurses to break protocol and not only stamp his footprints, but also his handprints, for us. Because every baby of mine gets a baby book, no matter how thin the contents.
We were ushered into a quiet "Do Not Disturb" room off to the side of the NICU and waited while all the many wires, tubes, and sensors were removed from our son's failing body.
A week before they were born, at 30 weeks' gestation, I was found to be in pre-term labor. An ultrasound was performed; the boys' growth was on target, and there was no significant difference in their sizes. That was on a Saturday; I was immediately admitted to the hospital's OB ICU. By Wednesday, I was transferred to a regular L&D room, on strict bedrest except to use the bathroom.
That same night, I asked for another ultrasound, because I felt pain where Baby A - Robby - was situated on my lower left. Heart monitors were placed around my belly, and all three of us were beating at appropriate rhythms. No ultrasound was done. Thursday, the pain increased, and I asked for an ultrasound in the morning again, and in the afternoon, I wanted to know when I was going for that ultrasound, because it really hurt no matter how I repositioned myself.
Friday morning came. I was in screaming pain in Robby's corner of the amniotic world, and still no ultrasound. By 4:45 PM that afternoon, I was frantically begging for an ultrasound. SOMETHING. ANYTHING, because I knew damned good and well that something was wrong. I knew.
Saturday morning, around 6 or 7 AM, I climbed carefully out of my hospital bed to pee. It took me about 20 minutes to get back into bed, I was so uncomfortably huge and in such terrible pain. No sooner did I get situated in my pillows and blankets, than I was suddenly sitting in a huge gush of fluid. Instantaneously, simultaneously, that stabbing, tearing, ripping pain in my abdomen abruptly stopped hurting at all.
Never was an ultrasound performed in those three days of begging.
The nurses thought I had wet the bed, but of course I knew better. They tested the fluid and, sure enough, my water had broken - but only on Robby's side. Jack's amniotic sac was still intact. There was nothing to do but deliver my boys via c-section, the same way big sister Chloë would be born, and the same way little sister Sophia would come to us.
For three days, from March 22nd, a deliriously unhappy day compared to what should have been a crazily happy one when my twins were born, to March 25th, when my Twin "A" was no longer capable of maintaining human vital signs, I kept a vigil by his bedside for every waking moment.
At last, he was disconnected from his life-sustaining equipment and dressed in ill-fitting but prized crocheted clothing, and brought to us in the Do Not Disturb quiet room. They handed our son to me. I held him as though cradling a healthy newborn; how else are you supposed to hold a premature infant, healthy or not? The chaplain who had baptised him came in unannounced, unrequested and, we agreed, pretty much unwanted. We needed privacy, just the son and the mom and the dad, but both of us were unable to demand it. And so we never got it.
At last, he was disconnected from his life-sustaining equipment and dressed in ills-fitting but prized crocheted clothing, and brought to us in the Do Not Disturb quiet room. They handed our son to me. I held him as though cradling a healthy newborn; how else are you supposed to hold a premature infant, healthy or not? The chaplain who had baptised him came in unannounced, unrequested and, we agreed, pretty much unwanted. We needed privacy, just the son and the mom and the dad, but both of us were unable to demand it. And so we never got it.
My OB, my high-risk maternal-fetal medicine specialist who was supposed to know ALL. The. Things. about TTTS but didn't, came in. He was, frankly, entirely too calm and dismissive about his role in this epic failure to save the twin boys whose mother, father, and sister, had been shipped from Guam back to the States in hopes of having exactly this kind of care for exactly this problem being a given. In reality, nothing was a given. His attitude, visiting us there in that quiet room, where I was still holding Robby, where the chaplain sat facing us in the most awkward way, and not in so many words, declared, "Oh well, shit happens, have a good life." And left. I blame him 110% for our son's death but did nothing about it, because we'd be fighting the whole DoD and, basically, the federal government. I didn't have the emotional fortitude to withstand that. I still don't.
It was difficult for me, but I let Rob hold our son while he was still alive. I couldn't resist having a peek at his tush, because tushies are cute and this was MY son, after all, but I didn't get to take him home. I didn't get to give him a sponge bath in a baby tub. I didn't get to sing all the songs that never soothed a crying Chloë Raine. I didn't get to play "guess the twin" even once, even with myself. I didn't get to see him skin his knee, lose his first tooth, have his first crush, measure him on the growth chart on the back of the door... The one thing I did get was visitation from his big sister before he died, so she did meet him.
My biggest, most fervent regret is that we did not get a picture of both boys together. Jack was not brought in to us. No twin pictures. Nothing. Nada. And I never will have one, save the double-peanut ultrasound photo I have from that first discovery in Guam, now faded from sun exposure.
And so. The time came, about an hour in, when a nurse checked his heart. Listen, listen, listen. And then she looked at me and gave a firm shake of her head, and that is how I learned that my son had just died in my arms. We were given about five minutes to cry gut-wrenching tears before they took him away. Now all I have of him are his ashes, because we chose cremation knowing that we would not always be there in Virginia to visit him if he were buried.
So forgive me, Jacky, and forgive me, any of you brave souls who made it this far, for feeling tugs of pain and memories of sadness, on what should be a fun-filled, joyous day for Jack. It's bittersweet. I have one son here who will be old enough to drive in six months, and another son who never even rode in a carseat with his mum and pop.
Those of you who grew up learning to swim in the tall ocean waves will understand this analogy: For three years, I felt as though the outgoing tide had swept me under water, and I was rolling and rolling, breathlessly, underwater with no ability to tell up from down or right from left. For three years, I was rolling underwater until, finally, I was pushed close enough to the shore and spit out by the incoming current. Spat out and sputtering, coughing, and realizing that I was finally, at last, safe on solid ground.
That day that I was released from my prison was my youngest child, Sophia Lorelei's, first birthday. She had been alive for one entire year, and Jack for three, before I became fully conscious and cognizant of the reality that I had three living children to raise. I was at a friend's house, with cake and ice cream and party hats and candles, and I had dressed baby Sophie in THE most abundantly adorable pink swirly dress. She had been walking since 7 months old, but at cake time, I went into the next room to gather her up, and she walked toward me from across the room. She had a giant smile on her face, that beautiful pink dress on, and there was no hint of precarious toddling in her walk. Sophia held her arms up to me, meaning, "carry me, Mommy," and I did. I woke up, then. The ocean spat me back out.
Six months later, after auditory and visual hallucinations persisted, medication after medication was tried with various disastrous results, and my behavior in general becoming increasingly and atrociously manic, I was diagnosed with Bipolar I - with Psychosis.
Last week, I visited a new psychiatrist in Boise for the first time. I gave her the abridged version of this story and my horribly abusive childhood, my mom dying at age 33, and so on and so forth. She concurred that BP I w/ P was the proper diagnosis... but I also saw her scribble down the word "schizophrenia" and circle it on her notes that she kept not at all hidden from me. So, hmm. Yay.
Anyway. Yes, it's JACK's birthday, and I'm gloriously happy to be his mom and be raising him and seeing him grow up into a fine, handsome, capable young man, despite all of the things that have tried to hold him back. However, having one twin living does not supplant the desire for both twins. They were never interchangeable. When I was pregnant, it was never, "well, as long as one lives, I'm good." Losing Robby was just as heartbreaking and terrible as if it had been a different pregnancy, at a different time altogether, from my carrying Jack. This death was preventable. I believe that. I understand that. I KNOW that. And #sorrynotsorry, but that fucking hurts like hell on Earth.
So to my son in heaven, whether you're still a 3-day-old neonate or a 14-year-old teenager, happy birthday. Whatever it is you're up to, be kind to your (now) two grandmothers who surely love to see you daily.
And to my son here in bodily form (I know you're in there!), Happy 14th birthday!! I love you, and no you are not driving the car until you're 14 and a half. And notice I said "car" and not "motorcycle," because over my dead body will you operate that kind of motor vehicle while you're living under my roof. I love you, though! ;)
I know there'll be no more tears in heaven.