On Zia.
The four-year anniversary of my daughter's ten days in the NICU and some truly delayed processing and memories.
Last week my daughter Zia turned four and we celebrated the incredible little girl, now a big girl, that she has become. She is the delight of our lives, a being that comes into your lives and reshapes those lives around them in a way that you never quite understand how it had any other shape.
But every time her birthday approaches, it is impossible to not think about how close we came to never knowing her. You see we almost lost my daughter before we ever got to know her. She was born with a condition called NAIT (more below) and spent ten days in the NICU. We were lucky, we got the medical help she needed, had insurance that would eventually cover the costs, and the grace of God carried us through that nightmare and we came out the other side okay. But you don’t spend time in a NICU without the inescapable sense that not everyone who comes into that space is as lucky. But if you are lucky enough to take your child home from the NICU, you’re just thrown right into the normal exhausting grind of being the parent to a newborn, and its hard to find the time to process what happened at the beginning.
A few weeks ago, I opened my photos app and went back to my photo stream from that time. I scrolled through memories that go from celebratory, to nightmare, to joyous again. To look at the photo reel from that time is to revisit a moment in time in your life that you know will forever be a critical chapter but which in the moment you are just trying to survive. I am sure if I could bring myself to go back and look at my texts, WhatsApps, and emails from that time they would convey a similar feeling.
So around her fourth birthday, I finally sat down and wrote our my memories of those ten days: for myself, for my wife, for Zia someday, and I share them below along with photos.
Trigger warning if you’ve had traumatic childbirth experiences.
For us, the birth was relatively smooth and uncomplicated. For a few moments, for maybe twenty to thirty minutes, everything seemed normal. From there it all becomes a series of things I remember and will certainly never forget.
I remember the staff pediatrician who had noticed the bruises and petechiae on her skin and ordered the blood test and thinking to myself a blood test didn’t seem like a big deal.
I remember that same doctor returning to our room and telling us the blood test showed my daughter’s blood platelet count was so low that we had to immediately sign an emergency form to authorize a transfusion and her emergency relocation to a NICU at a different hospital.
I remember learning her platelet count was 7,000, not knowing what that meant, and telling that number to my father-in-law who is a doctor, and knowing it was bad when he asked me to repeat that number several times, with shock in his voice.
I remember later learning that a normal platelet count is 150,000 to 450,000 and that Zia’s was down to 2,000 at one point, among the lowest platelet count they had ever seen at the hospital in a baby.
I remember eventually learning she had a life-threatening condition called Neonatal alloimmune thrombocytopenia or NAIT. NAIT is when a baby gets different blood platelet antigen types from the father than the mother, which causes the mother’s body to attack the baby’s platelets, resulting in the baby being born with low platelets. Having so few platelets puts the baby at risk for severe bleeding, particularly in the brain, and can cause permanent damage or be fatal.
I remember being in the Sibley Special Care Nursery and seeing my daughter hooked up to the first of what would be many tubes as she received the first of what would be many transfusions.
I remember waiting for the specialized NICU ambulance and staff to arrive to take her to the Georgetown NICU, just three miles away.
I remember my wife in a wheelchair, exhausted after giving birth just hours before, hand on the child she was now going to have to say goodbye to, because she had to stay at the hospital she gave birth at while the baby was transferred to the Georgetown Hospital NICU.
I remember telling my wife that I did not want my daughter to leave this hospital and go to the NICU without a name, and that’s the moment we settled on naming her Zia.
I remember waving goodbye to Zia as they loaded her into a carrier on a stretcher packed with so much equipment that it was hard to see where the baby was in all of it.
I remember learning that they would hold me in the hospital while the ambulance departed because that’s standard procedure because distraught family members tend to follow ambulances too closely and sometimes cause accidents.
I remember a friend’s wife being there within minutes to be with my wife in the hospital when we called because I had to leave to go with Zia.
I remember the 3ish mile drive alone from Sibley to Georgetown, concentrating hard to not have an accident, but also having to call my mom and tell her the news.
I remember my first elevator ride and entrance to the NICU and entering an alien world of quiet beeps, of fiercely caring nurses, and parents with the simultaneously haunted and determined look that I too would soon wear as a NICU parent.
I remember the first time I saw my daughter in the NICU. I’ll never forget that first moment of seeing her there surrounded by so many machines and tub
I remember that in the darkest of night, staring at this little girl with black hair who I had just met but who was all of a sudden everything to me.
I remember being with my daughter on her first night on this earth, the time when a child is supposed to be with their mother, and being a poor substitute from outside a plastic box.
I remember the first time Zia clutched my finger in the NICU sometime in the wee hours of the morning and the full weight of the unknown of parenthood hitting me.
I remember being allowed to crash in one of the two bedrooms at the NICU, which I later learned were mostly reserved for parents who just arrived and were having to absorb everything that was happening to them.
I remember learning that parents aren’t allowed to sleep in the NICU by their babies, which at first seemed cruel but eventually you understood that if they allowed it parents would never leave their side of their baby, and some of these stays can stretch into weeks and months.
I remember that first morning in the NICU that the team was lovely and had a big Zia sign on her bed but the hospital computer system didn’t get the news in time so for the duration of her stay she was “Smith, BG-Lauren” with BG standing for Baby Girl.
I remember the first time I was allowed to hold my daughter in the NICU and fearing it might be one of the only times I would have that opportunity.
I remember waiting in fear as she went to her first head ultrasound to see if she had intracranial bleeding and the feeling of utter relief when she did not (the worst cases develop the bleeding in the head in the womb before or during birth).
I remember feeling both guilty and relieved that I had a team of nurses to teach me how to bottle feed a baby, change a diaper, and eventually swaddle a baby.
I remember going back to the first hospital to check in on my wife and the discussion of her discharge with her doctor, who said while my wife needed to stay another two nights in the hospital but then looked at me and said if it “circumstances with my daughter changed that my wife could be discharged early to be with her if essential” which was doctor speak for if your baby might not make it, we will let her mom go be by her side for what could be the end.
I remember the noises, the beepings in the NICU, all night long. And no matter how late you stayed, there was always another parent there too.
I remember the sensation that NICU nurses were a particular kind of fierce professionals of the type that you only run into in certain places where the mission is sacred and the stakes are high.
I remember the pediatric hematologist and oncologist saying this was a tough one. And she came in on a Saturday, despite it being her day off and having a family, because this one was a tough one but she was not giving up.
I remember learning that a special donor had to be called to donate the special platelets that my daughter needed to survive and that person, that angel, did so when the call came.
I remember my best friend who left a trip to fly home to be there for us if we needed something.
I remember how covered in bruises, petechiae, and tubes my infant daughter was.
I remember despite numerous transfusions her platelet numbers were not going up enough.
I remember the joyless task of picking my wife from the hospital where she had given birth and driving her to the hospital with the NICU.
I remember the far more joyful first time that my wife got to hold her daughter in the NICU.
I remember hearing a family celebrate their 100th day in the NICU and realizing that as bad as I was feeling at that moment, it could be worse.
I remember a dad telling another family he didn't want to talk to them in the waiting room. They were newly arrived at the NICU, reeling from the pain and confusion and just trying to make conversation but he didn't want to get to know new people because his child had been here for months and everyone he had met and talked to, their kids got to go home, and his was still there.
I remember coming into the NICU and seeing incubators that had been filled now empty and just hoping that they were empty because a baby had gone home.
I remember my wife coming down with post-partum preeclampsia and having to be admitted to the hospital for treatment. Our friend also almost died from post-partum preeclampsia and warned us about it, so we were aware of it and paying attention. But now we tell everyone about post-partum preeclampsia and to get a blood pressure cuff if you’re pregnant and take your blood pressure before and after you give birth.
I remember the doctor saying “Oh, I can send you to the same hospital as your daughter! then you can be together!” So for a few days I just shuttled between my wife’s hospital bed and my daughter’s crib in the NICU.
I remember the song “Opportunity” from the movie Annie was going viral at the time on TikTok and cutting together this TikTok in the wee hours of the night in the NICU.
I remember knowing that sometime around that age I had lost a mother, whether abandoned or coerced, and promising I would be there for my daughter.
I remember at some point looking around the NICU and noticing how my daughter, who was born at 37.5 weeks, nearly fully to term, looked like a giant compared to most of the other babies in the NICU who hadn’t been so lucky.
I remember a period after they removed her central line where we could not get an IV in her tiny infant veins and watching nurses and doctors all struggling to get one in her for several days.
I remember those days where her platelet count was higher than it had been but was still dangerously low.
I remember being told that a NICU nurse who came back from a beach vacation and was pretty relaxed then got an IV in Zia on her first try on her shift back (an angel).
I remember them running as many platelets as they could into her and waking up one day to the news that her platelet count was now through the roof to normal levels (150,000).
I remember learning that because the low platelet count was because the antibodies from my wife’s blood was still in Zia’s body, that was what was attacking her platelets, but once my wife’s antibodies cycled out of her body in a few days, if she didn’t have an uncontrolled bleed first, Zia would be perfectly normal and healthy.
I remember a blanket that they gave Zia as she was being discharged which came with a note that it was knitted by a NICU survivor who was now a teenager and made these as her way of saying thanks.
I remember the day we were discharged and went home with our daughter.
We were the lucky ones. Zia did not have any bleeds during this dangerous period. Her condition, while incredibly serious, cleared as her mother’s antibodies were filtered out of her body and replaced by her own. We knew that not every child in the NICU is lucky enough to come home so soon or even at all. She came home after only ten days in the NICU.
And then we were home and we were parents of a newborn with all of the chaos and sleeplessness and joy that entails. And quickly those days of terror were replaced with the normal grind of those early days of parenting. And there’s little to no time to process what happened to us because you’re just trying to keep your head above water. And one day you look up and you have a four year old and you realize you never quite stopped to reflect on those first days.
I have wanted to write about this for some time. Some of this is catharsis and delayed trauma processing. Some of it is an attempt to record memories which I expect never to forget, but nonetheless will fade with time as all things do. But I needed to write this because the act of writing is both a way to process the past and record it for the future. Maybe someday Zia will read this and learn a little more about those ten days at the start of her life.
We were lucky. Today Zia is healthy with no long-term impacts. We are blessed and happy.
But on the best days, like her fourth birthday party, or the toughest days, like a few days when she’s home sick with hand, foot, and mouth disease, I look at this big girl and can’t help but remember that little baby in the NICU, full of tubes and surrounded by beeping machines, and it makes it a little bit easier to deal with a wild toddler. We almost lost our Zia the day she was born but we were so lucky that we did not.
Happy birthday Zia. We love you so much.
Thanks to my wife for letting me publish this, for her edits, for carrying and birthing our child, and for being a great mother. And thank you to everyone, the doctors, nurses, friends, and family who helped us survive that period of our lives. We will be forever grateful.
I am so glad Zia and your wife are healthy. Thank you for sharing.
My daughter was also in the NICU, although much less serious than Zia. Almost 20 years later, I could still hear the machines in my head when you described them.
Thanks for sharing this. You'll be glad you wrote it all down.