Katabasis (in the NICU)

There’s a script to birth.

The baby is born. They hand her to you—wet and naked, or freshly dried. You pull her to your breast, skin on skin on skin. She roots, head turning blindly, mouth wide and hungry, and finds a nipple, and you feed her from your body, that she will live. This isn’t everyone’s script, but it was mine; I had followed it twice before.

When the twins were born, I didn’t get to follow it.

I’d rather not go back there. Close the door, turn out the light, walk away. It’s taken me a year to put this together end to end. It’s not tidy writing, half poem, half prose, half mess. But let’s do it, in honour of their first year.

It’s a tunnel, a chthonic journey. I looked it up and found this word: Katabasis (Going down). It’s the hero’s journey down to the underworld, to retrieve his lost love.

30 weeks six days.

First, you are alone, when you should be half of a pair (I should be with two babies). It’s a lost, wild, numb feeling. You talk, laugh, move, like a living thing, but really you’re a kind of ghost.

We kept asking, “When can we go down?” And the answer was “Soon, not yet.” I’ve never felt so pointless, useless, as we waited.

Eventually you find your way to the underworld.

Eventually, they tell us we can go down. Everything is strange and overwhelming. The doors are big and heavy and closed; entrance strictly monitored. We learned the first ritual fo the NICU, scrubbing in. Beyond the doors and the sinks, a cramped, alien underworld, a sea of incubators surrounded by machines, wires, cables, tubes—a halo of technology monitoring, maintaining, keeping bodies, too tiny to live, alive.

We are in the way, intruders in this realm. They tell us we are welcome, that we will learn to belong here. We don’t believe them.

Small spirits in plastic boxes, too fragile to live.

Rules

There are rules in this underworld. No phones. One visitor per bedside. Too much activity today—let them rest. We stub our toes on the rules, again and again.

Rites

Strict rites which must be followed. Scrub with soap for thirty seconds. Follow with sanitizer. Wipe your phone with the disinfectant wipe. Hand sanitizer again when you go from one isolette to the other.

Isolette.

Altar. Bier. Reach inside and feel the tiny flutter of the heartbeat, the rise and fall of ribs like toothpicks. We learn the names of all the wires and what they watch. Heat, heart, breath. The tubes and what they carry: air, fluid, food.

One hand for the head, one hand for the body. The appropriate gesture of worship.

Talk to them, we are told. Tell them stories. They hear your voice. They know your voice. You voice will help draw them to the land of the living.

Skin to skin, another ritual. Ceremonial garments chosen carefully: wide neck, loose body. Let them be as close to your heart as they were, before. Sit in contemplation. These are the only peaceful moments.

Libation.

The breast pump is the most ceaseless ritual. Mark your time by it. You cannot stay in the underworld; you cannot live in the land of the dead (of the not yet living). But you can pump, and feed them of your body, and maybe one day they will come be with you like living babies in your arms.

The first precious drops, golden miracles. 10 mils. 10 more. A syringe connects to the tube that runs down their throats into their bellies. The first feeds are a single millilitre. It looks like the right amount for such a tiny body.

We pump more, and more. When we have enough milk, still we continue, anxious. The ritual comforts us.

Anabasis (coming up)

I held Tristan on the evening of the first day. I was frightened to touch her, and desperate to hold her. They were intubating River; I couldn’t hold her yet.

I held River on the third day. She was extubated, but under a bili-light blanket.

They sent me home from the hospital on the third day. You can’t live in the underworld. I cried a lot, and told my husband that it was ok that I was not ok.

On the sixth day (31 weeks +5), they detach the intravenous fluids. They can live on my milk, delivered through its own tube. Their stomachs work. Their intestines function. This is a victory.

The breathing supports step down. Intubation to CPAP, CMAS to CPAP, down to 2 litres room air. On the twelfth day (32 + 3), they breathe by themselves. Holding our breath that they will breathe. Later one will reverse, because nothing in this underworld is a straight line.

On the eighth day, River cried and I comforted her. I felt like a parent for the first time.

The ritual of the blanket.

On day 9 we find that the body temperature monitors have been removed, and the twins are wrapped in blankets. Thermoregulation is a victory.

On the eleventh day, a magician dressed as a nurse helps me hold them both together.

On the fourteenth day (32+6), we are moved to the oasis. (To Elysium?) There are only four isolettes, a permanent table for the nurses, space between the isolettes for the rocking chair. For the first time, my husband is comfortable enough to hold them.

On the 17th day (33+2), I am permitted to put them to my breast. They both latch well. I cry. I know motherhood isn’t the same as breastfeeding, but my heart confuses the two.

At 33 weeks gestation, they have only just developed a sucking reflex; I have to watch to make sure they stop to breathe. The next day Tristan has twenty bradycardias, episodes where her heart rate drops terrifyingly—all oral feeding is suspended. She is diagnosed with a UTI and ends up back on breathing support for two more weeks. During the whole time she can’t eat by mouth, but sucks ferociously on her pacifier during her tube feeds.

One day, River is fussing as I hold her during rounds. I quietly nurse her, and she is satisfied and goes to sleep. I get in trouble after because it isn’t the time to feed her, and at her next tube feed she regurgitates milk from an over-full tummy. Another toe stubbed on the rules. But how can I regret the first time she communicated her need and I responded?

On the nineteenth day, they are given clothes. This is also a victory.

On the 30th day (35 weeks), the Jim Pattinson Children’s Hospital opens. We arrive early to follow our babies on the Great Baby Migration to the promised land of the New NICU. It’s nice to have the ability to sleep over, but mostly I preferred the Oasis. Our solitary room is lonely and the isolettes are on opposite walls, making it almost impossible to hold both babies together. And the chairs are not very comfortable.

The last month is a slow road winding into the distance. Weight gains. Breathing. I am permitted to nurse each twin twice a day, no more than fifteen minutes. They weigh her before and after, a practice damaging to the nursing relationship, so I have read, but deemed necessary here. I am tired of telling every new nurse, every day, that I will want to breastfeed.

They begin to supplement the twins: two feeds a day of preemie formula, for extra minerals and calories. I will need to supplement them the same way when they come home, they tell me. I cry all day, because this feels like, again, my body is not enough. The failure of your body to provide as it should is the most haunting ghost of this underworld.

The slow road is almost, but not perfectly straight. River is moved to feeding on demand—loses weight, refuses feeds. For four days she won’t nurse, and takes bottles sporadically. I wonder if maybe she will never nurse again. The same nurse switches shifts and takes on overtime to see us through. They put her back on scheduled feeds, finishing through a tube. Eventually, she nurses again. She’s always slow to start—at breast or bottle—but she likes to fall asleep at the breast without letting go. I dream of the day where she can be that annoying baby who likes to sleep with a nipple in her mouth.

The first day I get to nurse Tris again, she is so eager. It’s wild and exciting and she takes (according to the scale) 42 mLs, a huge amount for her. I still have to watch her breathing. I pay close attention; I often catch the oncoming bradycardia before the machines do.

The braddies, bradycardias, are our nemesis. Both twins have them several times a day, more when eating. They are what stands between us and going home. On the 50th day, the doctor raises the possibility of sending the twins home on oxygen, rather than keep them. It cuts like a knife—they don’t need oxygen, haven’t for weeks, except that it helps keep them from forgetting to breath. But the idea of having them home makes it worth it.

(As of the twins heard her, their bradies reduce sharply)

Home. The goal. The land of the living. The end of the half-life. It’s strangely terrifying. How will I live without constant daily weights, without the reassurance of a nurse at hand at every moment?

On the 54th day, for the first time, I spend the night in the twins’ room. This is a disaster. Every little grunt and twitch wakes me; isolettes across the room are nothing like having the baby in a bassinet right beside the bed, or right in the bed with you as I did with my older children. I wake up every hour, if not more. This does not assuage my terror.

On the 55th day, I tandem nurse both twins for the first time. It’s wild and crazy because I am trying to watch both their breathing, but the milk flows fast and plentiful.

On the 56th day, Tris comes home at 38+5. My heart is torn in two, because with River still in the NICU, I have to choose between my babies. Once a baby leaves NICU, they can’t come back. I tell myself eight hours at the hospital with River still leaves me more time at home with Tris than we had before. Despite the pain, it’s easier to transition to the complexity of life at home one baby at a time.

Tris coming home

On the 60th day, River comes home at 39+2. Everything is quietly, achingly wonderful. And yet very, very, very hard.

My first picture of all four girls together. And at home.

16 Comments

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16 responses to “Katabasis (in the NICU)

  1. Kimber Crow

    Thank you for sharing this.

    I’m glad that everything turned out well in the end.

    Kimber

    Sent from my iPhone

    >

  2. Oh my heart! Thank you for sjaring their (your) story. I think the underworld is the most apropos metaphor for time in the NICU. I have enjoyed you sharing regular updates throughout the year so we can all see just how far they have come. Hugs to you mama!

  3. Abbey

    Thank you for sharing—so very interesting.

    Abbey

  4. Tears are streaming. This is so beautiful and heartbreaking. I’m glad you had the courage to keep going. And that you had amazing medical staff to keep them going. Just think, when the twins are teenagers doing teenager things, you’ll look back on this time and wonder to yourself if it even really happened.

  5. ceci

    This is agonizing to read; I can only imagine what it must have been like to live through. And how fascinating it will be for the twins when they are older.

    ceci

  6. SO

    This was my life 34 years ago, having twins, stuck in NICU, asking permission to care for my babies, the bradycardias, leaving one twin in NICU while the other went home. You never forget the experience. You captured the emotions perfectly.

  7. Helene Wilson

    What an incredibly heart-wrenching journey. So sorry you had to go through so much pain, but so very thrilled that your girls are now safe and healthy.

  8. This is so beautifully written. Thank you. You are a very talented writer; I always perk up when I see a post from you in my feed. This post went straight to my heart.

  9. Suzie Simpson

    What a heart wrenching story that was beautifully told. Our grandson was 7 weeks early. It was an unbelievable nightmare of watching my baby go through such a difficult time. I feel your pain! The good news is he is now 21, 6’1” weighs in at 200 pounds! Your daughters are beautiful and so are you. Children are worth the fight. Gods blessings on your family!

  10. You remember when they were the surprise baby?

    A lifetime ago.
    Love you. This is beautiful, and yes I am crying and so grateful and glad.

  11. Susan Monro

    Thank you for sharing – This was my story too…. The frightening time when our twins were born at 30 weeks gestation and theIr struggle for survival. The ghastliness of not being allowed to do what your heart screams to do for the new life – or lives – that you created. Ive sat & cried at your story, so pleased it all turned out well. My babies are 42 today… both married with children of their own, thankfully; I often wonder if it all really happened – that time in the underworld. God Bless you all.

  12. benay cole

    oh dear, this sounds all too familiar. My twins were born at 29.5 weeks 30 years ago this fall. 45 days in NICU, home a month before due date and before Christmas. They have been the greatest blessing. Enjoy everyday, and every milestone. My twins still blow my mind with their little twin quirks. God bless you!!

  13. You have written beautifully of a heart-rending time. I hope you are getting the nurturing you need to continue caring so beautifully for all four children. You are clearly intensely committed to being a wonderful mother.

  14. Peg

    I too had a premie girl. Good weight but no suck. Pumped and then tubes her. Hand worked her jaw for weeks. By 6 mos, she was my plump chicken. Double 4 lbs is after all only 8 lbs!
    By age 7 she was excused from all testing by special follow of premies. She had met all goals for physical and mental milestones. She became a strong fit and powerful young woman.
    My prayers for you and the girls.

  15. Kay S.Carlson

    Thank you for beautifully sharing your story. Forty years ago my boy-girl twins were in NICU and we were learning the ropes of the unit. Twin B who was least expected to survive is now a medical doctor with three boys. Two of those boys are twins less than a year of age. Twin A was healthier but not as much of a fighter as Twin B. Our Twin A is also a medical doctor. Your entire family will remain in my heart and prayers.

  16. Lisa G :-)

    Happy birthday to your beautiful babies! What a beautifully written, heart-wrenching story. I’m so glad it has turned out well and your lovely family is all together now!

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