NICU PTSD

Sometimes I have flashbacks.

My mother and I are sitting in her SUV in the hospital's underground garage.  I have just been discharged and we are making our way through the dimly lit rows of cars to reach street level.  I am sitting with my forehead pressed against the window. As we surface I am forced back into my seat by the sun.  I've spent the last two weeks cooped up in a small white hospital room with artificial light and stale air.  This feels unnatural.  As we sit at the intersection marking the boundary between the hospital grounds and the real world, the reality of my situation crashes over me.  I can't breathe. I might scream.  If I wasn't so numb, I would jump out of the car and run back.  But all I can do is cry and picture my tiny little ones in their small white NICU rooms with artificial light and stale air. 

My mother, the maternal juggernaut, does her best to help me collect myself.  She isn't crying, but I can tell she is hurting too. And for the first time, I understand why.  She is feeling my heart ache.  I am her child. I am in pain, and there is nothing she can do about it - a feeling that I had become all too familiar with over the last few days.

Our battle with TTTS had reached its climax with the birth of our sons via Cesarean section at 28 weeks, which gave our boys a fast pass to the NICU.  They were fitted with CPAPs, IVs, and an assortment of wires.  I had to fight every maternal instinct urging me to hold them, hug them, cover them with kisses - and just let them be.  They were so small; a touch bigger than scary small.  They needed help breathing, and I would have given anything just to breathe for them for one moment, just to give their little bodies a break.  My husband and I stayed with them until I could no longer keep my eyes open.     

The next morning I attended rounds. The language was jargon heavy and I had to keep asking questions, though they didn't seem to mind.  They were placed in adjacent rooms, and it would be another month before we were all reunited in one room.  My room was one long hallway, an elevator ride, and two sets of doors away from theirs.  I could have walked there with my eyes closed. The nurses would help me take each of them out of the incubator (I was too nervous to do it on my own) and into my arms or onto my chest for kangaroo care.  In those moments - the room, the machines, the wires, the nurses - all faded away, and all I could see were my sons.  And then it was time for me to go home.

But this was all wrong.  My husband and I should be triple checking the car seats and fussing over how to buckle the boys in properly. We should be driving home at ten miles an hour.  We should be terrified, excited, worried, and beside ourselves with happiness.   Once at home, we'd revel in our first successful diaper change, feeding, bath time, and bedtime. 

Instead, we were just terrified.  
Instead, a rotation of relative strangers will be caring for our babies.

Everything felt like a lie.

I gave birth.          You still look pregnant.
I have two sons.   They shouldn't be here yet.
I am a mother.      Where are your children.

Driving away with my mother that day, I kept thinking - I am a mother. I AM a mother - while every other emotion fought for my attention.  But what do mothers do? I had skimmed through some baby books and had asked my friends with children to find some tricks of the trade, and I was prepared to deal with engorged breasts, to be covered in everything from spit to pee, to not sleep ever again, but I hadn't read anything about this.  How to be a mother while someone else cares for your babies.  

Although I wasn't going back to work, I poured myself into my new job.  Every morning I would drive to the hospital in time for rounds, eventually learning all the jargon.  I would spend as much time as I could holding my darling little ones - singing to them, talking to them.  I had my book or knitting ready for when they fell asleep.  My husband would arrive after work, and we would spend the evening together as a family, making sure to spend equal amounts of time in each room.  As we drove home at night, we would encourage each other to stay strong, that eventually they would come home.  More often than not, the night nurse would receive a phone call from me around midnight, just to check in.

We acted out our lives over the next two months.  I received emails from Baby Center telling me what size vegetable the babies would be that week in the womb.  I printed pictures of the boys to bring to my baby shower.  Ryan painted their room robin's egg blue.   And we rode the NICU roller coaster.   We knew what every number on the monitors meant.   We knew which beeps were good and which were worrisome.  We knew our As, Bs, and Ds: apnea, bradycardia, and desaturation. We learned how to change a diaper through the holes of the incubator.   During Ryan's first go at this, he diapered Sawyer's arm into the mix.  It felt good to have a new parent moment, even if it was under the watch of a nurse.  Slowly, incubators were exchanged for open air beds, and bottles replaced feeding tubes. And then it was time for them to go home.

Sawyer was coming home with oxygen and monitors.  The thought of not having a doctor no more than ten feet away was troubling.  Did they really expect us to be able to do this ourselves?  After a crash course from the nurse on CPR and how to operate an oxygen tank in which I wrote down every single word she said, we packed up two months worth of accumulated baby stuff - clothes, blankets, toys, and cards.

We dressed the boys in the beautiful hand-knitted rompers Ryan's sister made them. We quadruple checked the car seats, and Ryan drove us home at five miles an hour.

Having only held them both at the same time only a handful of times, I knew the first thing I was going to do when we arrived home.

 That was one year ago on October 6th.






  

Our Battlehymn - Surviving TTTS

Over a year later, and I still have trouble thinking about it for too long.  Like if I relive too much, the ending will change.  I think of the other babies and mothers fighting through this devastating disease, and I go numb.  But what can I do? In the grand scheme of things, relatively little.  But I can share our story in the hopes that it reaches someone who needs it. 

******

This story has a happy ending.  I say this now because it gets a little dodgy in the middle, and if you are anything like me, someone who has only seen the ending of West Side Story once out of one hundred viewings, you avoid the tragic. 

This is the birth story of the our identical twin boys and the disease that plagued us along the way, Twin to Twin Transfusion Syndrome.   At six weeks, we were thrilled to find out through an emergency ultra sound and the technician’s use of the word “they” that we were having twins.   At sixteen weeks, we received the devastating news that we suffered from Twin to Twin Transfusion Syndrome. 

If you don’t know what TTTS is, you are in the majority.  Twin to Twin Transfusion can happen when identical twins share the same placenta.  Eighty-five percent of the time, the single placenta acts like two separate placentas, keeping the blood flow and nutrients of each baby separate from the other.  In the other fifteen percent, connections happen within the placenta that result in the unequal sharing of blood and nutrients between the twins.  One twin becomes the donor and the other becomes the recipient; both in a life threatening position.  If left untreated, the chance of survival for both babies is nearly zero percent.  

Picture courtesy of http://www.tttsfoundation.org

This was all being explained to me as I sat alone and panicking in the ultrasound room after being diagnosed with this terrifying disease.  There are several options at this point.  Do nothing, abort one of the babies, amniocentesis to remove excess fluid around the recipient baby, and finally a laser surgery to seal off the connections in the placenta, helping it to function more properly.   The last option came with a seventy-five percent survival rate for both babies, so I immediately scheduled my surgery.  I left the hospital and called my husband, no answer; I called my mother, my middle sister, my little sister, nobody answered.  I finally reached my best friend.  She could barely understand what I was saying in my hysteria.  When my husband came home I sat wrapped in his arms with my hand on my belly, crying, weeping, sobbing and praying that I would get to see my babies alive. 

But then, over the course of a sleepless night, I realized that I could not continue carrying on like an emotional wreck. This was going to be an extremely difficult road, and the last thing the babies needed was an unstable mother.  I wanted them to be able to draw strength from me, and since treating this disease was entirely out of my hands, I felt like this was the one thing I could do for them.  I needed to do this; I needed to at least try. So we charged ahead. 

In the longer version of this story I would explain the details of my surgery, which happened around Mother's Day, that our case had the most placenta connections our doctor had ever seen.  I would have you imagine our excitement in finding out that it had worked and our devastation in finding out that it had come back a few weeks later.  I would explain the details of my second surgery, which fell a couple of days before Father's Day, comparing the anxieties between not knowing and knowing what to expect this second time around.  I would express our cautious  acknowledgement that the second surgery was successful.  (Although if you really want to know you can read about it here.)

                  I will summarize by saying this: every day was potentially the last day I had with the little ones I was trying to keep safe.  Forget living day-to-day, I was living hour- to-hour.  I had to dig deep to try to balance this anxiety with my resolve to remain strong.  But at times, it was all just too much.  Luckily, I had a support system that could keep a house up in a tornado.

            My hypersensitivity compelled me to make an impromptu hospital trip when I felt like something wasn’t quite right.  I was dilated one centimeter and they kept me for observation.  This was at 27 weeks, that is 13 weeks too early for those keeping track at home.  The next morning my water broke and I was told I would be taking up residence in the hospital until the babies arrived, which everyone hoped would not be for another couple of weeks. After one week of hospital food and blood pressure readings every six hours, on August first, which happens to be our two-year wedding anniversary, the boys decided it was time.  

            Sawyer and Greyson were delivered by cesarean section at 2:38 and 2:39 in the afternoon, weighing in at 3 pounds 1 ounce and 3 pounds 4 ounces.  They were tiny, but perfect.  We gave them each a kiss before they were taken to the Neonatal Intensive Care Unit, a place that would become a second home for us for the following two months, but that is a story for a different day. 

            The day that we brought them home, oxygen tank, heart monitor, and all, our TTTS saga was finally coming to an end and the real work of raising twins began.  All of the work, all of the heartache, all of the anxiety, all of the hope had brought our two little ones into this world and home safely, and I would do it all over again – every single time.  

            This story has a bit of a moral; maybe it is more of a message.  This is a rare disease, and we were lucky to be at a a hospital with a leading expert in the treatment of Twin to Twin Transfusion Syndrome.  Other women and babies are not so fortunate.  The way to fight this killer is to catch it early and monitor it closely.  After reading this story, you are now in the know.  If you told one other person, and that person told another, and so on, this information may end up reaching a person who may really need it.  You may help save a life, or two.  And don't mistake that last sentence for a trivial, sentimental way to wrap up this story. It is simply the truth.