About Nicole Conn's Experience with the Neonatal Intensive Case Unit (NICU)

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NICU World
	She gave him the gift of life His life gave her the gift of faith Four surgeries. Two codes. Chest compressions. Hundreds of baggings. Collapsed lungs. Six different ventilators, oscillators and jets. Hundreds of suctions from the lungs. Needles in every conceivable vein. Heel sticks until the foot looks like swollen strawberries. Excreting feces from the stomach. Eight centimeters cut from the bowel. Thirty blood transfusions – platelet infusions. Countless re-intubations and repeated catheterizations. Four kidney failures. A spinal tap.
Sounds like a car accident casualty. Triage at the sight of battle. An unexpected victim of terrorist catastrophe. But it is none of those things. This is my son's first month of life.
	Meet Nicholas James. Born March 15, 2002. Beware the Ides of March. Weight: 475 grams. A smidge over a pound. The heft of a bottle of coke. The size of a portable phone at only 10 ½ inches. My son would not think to come to this world in the normal fashion. He is not only the product of invitro-fertilization (using the last of our frozen embryos) but a surrogacy pregnancy. We have shunned the internet and classified ads and decided to do the smart thing to find a surrogate: Go through an agency. After all, isn’t that where prospective candidates are meticulously screened for criminal histories, emotional stability, and, most importantly, medical well being?
In fact, I find this world of surrogacy so intriguing I have begun work on a book and documentary about these women who are willing to spend ten months of their lives – even when they are paid – enduring shots, fertility drugs and morning sickness, all to hand over a new wriggling infant into the hands of proud parents.
	But nothing goes as planned. Who knew our grand intentions could end up so badly? Who knew we would be knocked to our knees? That we would suddenly find our marriage of six years sludging on quicksand? We discover our surrogate only has one kidney. That her previous pregnancy ended in an early pre-eclampsic delivery. That starting in the seventeenth week of pregnancy, we will begin to suffer through examination after examination, ultrasound after ultrasound, each prognosis more bleak than the one before. Try as they might (and they try mightily) each specialist can find nothing wrong with Nicholas’s perfect miniature body. In the end, our surrogate’s history of hypertension and severe pre-eclampsia will bring our Little Man to this earth before his time.
At 25 ½ weeks we are admitted to Cedars for an emergency C-Section. While our surrogate is hooked up to machines and monitors the question will be put to all of us: Who’s life is more important? Our surrogate’s blood pressure soars to 220/115. Nicholas’ heart rate dips in the middle of the night. It is a race against time to keep our surrogate stable and over the next few hours give Nicholas every advantage he must have to continue living after delivery.
	But time is a luxury we do not have. Before his birth the delivering doctor from the renowned Cedar’s Sinai NICU forewarns that in all her years she can count on one hand how many babies his size have made it. He’s known as an “under 500” grammer. “There is no book on your baby,” she tell us. “No research. No data.” There are so few who survive that the government does not recognize them statistically. With tears of denial and faith (although at this point I’m not sure they aren’t the same thing) I plead, “he’s a fighter.”
Pleading and praying have become my touchstones. They are bargaining mantras that I sway to in the cramped delivery room. I watch helplessly as two teams of specialists perform the delicate operation to remove my son with as little trauma as possible. But as he arrives he's not breathing. And they can't find a breathing tube small enough for him. Nicholas’s life ticks against the 15 minute resuscitation limit. I have been told to continue beyond this time frame is medically unethical. At 13 ½ minutes I hear the words, “Mommy, come meet your new son.” In his first moment of life he turns to me, opens his sapphire blue eyes and grabs my pinky in his rice-sized fingers. Gripping with the strength of a million answered prayers, his soul pierces my own. Mommy. I’m home. He knows I have fought tooth, nail and saber for the past six weeks to keep him in-utero. He knows I have threatened to break up my marriage and family, made daily entreaties to God to allow my son the grace of his destiny. * * *
	Welcome to the NICU – Neonatal Intensive Care Unit. A respiratory therapist whispers eerily, we call it “baby hell” – the intonation implying where nothing is impossible and everything is surreal. This is the world where one can count on nothing. “Never trust a Preemie” is a joke, but no joking matter. A resident aghast at how inconsistent the science is in this unit will whisper to me in desperation, “what they do here is not medicine. It’s voodoo.” Within hours of Nicholas’s initiation into this strange habitat he is strung up to so many wires, needles, monitor leads and a huge ET tube I can barely see his monkey-bird body. The tears stream down my face. They come far easier than I’d like, but are and will remain a matter of survival.
A woman meanders over from the another small patient next to my son. “You have to be strong,” she urges, “It is a roller coaster in here.” As I watch this mother return to the spot she has been rooted to for four and a half months, I’m slightly put off by her presumption in telling me what I should be in the face of having the smallest patient Cedars has entertained in the past four years.
	Within the first twenty-four hours I hear the term “roller-coaster” about a hundred times. If I hear the term one more time I will scream. First of all it is an erroneous term. The rapid descents into illness are much more terrifying than any hundred foot drop at Magic Mountain. The ride is not a thrill of a lifetime. It is terror heaped upon anxiety. The term is apt only in so far as the inability to regain equilibrium and the great desire to vomit nearly daily. Nicholas’s good moments become a ticking time-bomb. It is only a matter of seconds before the next events; bowel perforations, renal failures, collapsed lungs.
Day Three Alarms blare CODE BLUE. I do not know they are for my son as I innocently return from my ever-increasing need for coffee. Uniforms whisk to Nicholas’ bedside as he codes. I lose my knees, quake against the wall – a puddle of nerves. But even now, I feel this new rock of certainty in the center of my solar plexus. He has won the battle to get here and he will win this one too.
	New Doctors. New Nurses. New Problems. No one told us part of the roller coaster would be the ever-changing parade of doctors with their incongruent whip-lash changes. By Nicholas’ fifteenth day of life he’s had three new attending physicians, one fellow, six different residents and countless new nurses. No one told us the ride would include having one new nurse after another, the platitude “continuity of care” handed out with a cheap smile at the stress of one of the worst national nursing shortages in history.
And who are these insane and gracious creatures called nurse? These women and men who are primary care-givers, who become your best friend, your therapist and partner? They tend to these splayed out fetuses, triage the preemie’s tendency toward chronic lung disease, IVH (brain bleeds), NEC (necrotizing enterocolitis) and still see the humanity beneath the gelatinous glaze of their skin. These people, like no others, feel my son, immediately accept and embrace him. By our fifth physician’s rotation Nicholas will face a doctor with a messiah complex the size of Texas. The battle lines are drawn between the high maintenance mother I must become and the swaggering doctor who looks at papers instead of his patient. I watch my son’s condition languish, then worsen. And feel a hopelessness that beckons back to his first days. Convincing doctors our son is going to make it is oftentimes a fruitless exercise. Our original attending doctor simply shakes his head, calls him “one sick cookie.” The second doctor urges decision-making about pulling the plug while I’m still “dispassionate.” Dispassionate? I will never be dispassionate about my son. Another doctor roars at us “I don’t think you understand your son is as sick as it gets. He only has one direction he can go.” As if they are angry with me and my faith that Nicholas will make it. As if I’m a religious fanatic whose God will see Nicholas through anything. But the fact is, before this main event in my life, I had no concept of true faith. I may have talked the talk, but it is Nicholas who has created in me an unwavering belief in a higher power. The contrast of his awesome and tender spirit with his perfect fragile body touches everyone with whom he comes into contact.
	Here’s the sweet irony of my Little Man. All my life I’ve been a miniature’s freak. My entire family gifts me mini-typewriters, director’s chairs, baby shoes. I even joked one day with my partner that I was too impatient for the entire gestational process. “Wouldn’t it be cool if babies were born like after twenty weeks and you could just hold them in your palm? Put on little play diapers?” But God has topped even my freakish imagination. Destiny has played a twisted joke, granted my desire at twenty-five weeks.
It is difficult to believe that before my introduction to the NICU I would change the channels as fast as I could if I saw a preemie on TV. I couldn’t look at pictures of them in magazines. I’m ashamed to say they literally gave me the willies. I’ve heard the whispers behind my back. Friends have actually backed away upon seeing him for the first time. And I even overheard one person say he looked like a special effect dreamed up by Stan Winston. But for me he is beautiful. They say I see him with a mother’s eyes. Perhaps it is a mother’s heart, for I find Little Man nothing less than exquisite with his silky cashew feet, two centimeter sized heart and plum-sized head laced with the crinkly wrinkles of a sage tribal elder. His spirit is old and wise. And he has the most incredible sense of humor. He can make me smile, even in the midst of tears.
	As much as I would like for him to fit in my back pocket, I am deeply concerned at Nicholas's six week assessment. I ask our current attending, a gentle Indian doctor, if I’m hallucinating that my son hasn’t grown in all this time. I am not. Because he has barely finished one crisis before he starts another Nicholas has never even had what is called maintenance calories throughout his stay. He has gotten no where near full feeds through his IV. This same doctor tells us sadly that in Nicholas’ first multi-doctor conference, it was put on the table very quickly that Nicholas “would never make it.” But it is now weeks later and Little Man is still fighting the good fight.
Tales abound in the NICU where Nicholas shares his isolette with a menagerie of IUGR (intrauterine growth restriction) preemies, pre-eclampsia horror stories, chromosomally affected new-borns and crack babies. I venture out to share with other mothers, clasp hands, shed tears. One cannot imagine or dream up this world where parents sit bleary-eyed peering into tiny bins of plastic, our heads snapping to blaring monitors. One cannot possibly compre-hend the keeping alive efforts, the constant regulating of every single second of a baby’s life. We take for granted our gurgling infants will breathe enough oxygen, rid themselves of too much carbon dioxide. We never consider that every system has to be calibrated – a tweak of bi-carb, the twisting of knobs, a pianist’s scale of perfection not only for pressure of air into the lungs, but the measurements of tidal volumes, lengths of inspiration. A menu of electrolytes constantly on the rebound from too much this -- not enough that. Blood pressure cuffs the size of miniature Band-Aids. Photo light therapy for jaundice are floodlights on the curled up fetuses – for that’s what they are. No matter how many times one sees the pictures of my son, visitor’s blanche when they see what no eye is prepared to see.
	And if there ever was a venue for one’s spiritual awakening, this is it. The questions probed and challenged to each parent distills the essence of mother and fatherhood. Parenthood here is not about buying the right pram. It is about prayer. Motherhood is not about the suckling of a baby to her breast, but a queasy hope that one might hold her baby at all. Doing what is best for your child is a question that haunts, creeps into the still of night – the relentless question: At what price life?
On Nicholas’s 87^th day of life he codes for twelve minutes. Has it done irreparable damage? I almost step in three different times to stop the dedicated staff during the agonizing effort to resuscitate him. But I stop myself each time as his heart rate recovers, a nurse says he’s coming out of it. And, indeed, after twelve minutes of unconsciousness his eyes meet mine. What happened, Mommy? Did anything happen? How much pain can my son endure? How much can a mother watch? Doctors often remark “they don’t feel pain the way we do.” But how do they know? Is it simply a defense against the indefensible? Can anyone define the line between caring and cruelty? Each person, of course, must answer for themselves, but in all these questions, one is put to the test as never before. Doctors, nurses, and social workers fight amongst themselves with these philosophical dilemmas. Many in the medical community believe that if a baby doesn’t have a chance for “intact survival” no amount of effort should be put into the saving. But a neonatalogist clutching a wriggling preemie in his hands is going to do everything in his power to save the patient in their charge. All through Little Man’s journey, we see how mother after mother struggles with this over-arching issue. This is Nicholas’s story of magic. Of miracles. Hope against hope. A gift where the old adage is true: where there is life, there is hope. And his is the story of grace – the exquisite grace of being – a state we all take for granted every minute of our lives.
The Medical Expectation Of the over 4,000,000 babies born in the year 2001, 1200 of them were under 500 grams. Only fifteen percent of these infants will survive. In 2002, Nicholas is the smallest surviving patient born at Cedars Sinai in Los Angeles. After five and half months, Nicholas goes home from the hospital and continues to thrive. He will be eight months on the November 15th.
Actual Size.