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149 days on the NICU train

Updated: 3 days ago




A headache woke me up. I groped around in the dark for my BP machine and took my blood pressure. It was normal. Great. I popped some paracetamol and went back to sleep. The following morning, when I woke up I noticed a large red blob of paint on the wall. ‘That was not there last night,’ I thought and it bothered me. I sat up in bed and called my husband — Joe — to the room.

“What is that large red mark on the wall?”

“Where? I don’t see anything.” He creased his brow.

Those were the last words I heard before I lost consciousness and convulsed.


I was 31 years old and 27 weeks pregnant. A pregnancy that had taken time to come by. It’s ironic that during our premarital counselling sessions Joe and I argued over what naming system to adopt for our children. We come from different communities that follow different systems of naming and we just couldn’t agree. The pastor who was to wed us wondered why we were arguing over a future we had not lived. “There are people who marry and take years to conceive. Every battle has it’s time.” Her words travelled full circle and came round to bite us because falling pregnant was as hard as hiking up a hill backwards. Eventually I fell pregnant and it was a bumpy ride from as early as I can remember. On this fateful day, I convulsed three times in one hour — I was told. It was so bad I bit down on my tongue until blood oozed from my mouth.


The next time I woke up I was in hospital as confused as a goat on Astroturf. There was a flurry of activity around me because this was an obstetric emergency. Eclampsia. And the management was primarily, delivery. I remember resisting this plan and trying to bargain with my gynecologist. “The baby is too small to survive.” Yet as a medic I knew he was doing the right thing. It was protocol. Eventually I was taken into theatre for a cesarean section where they delivered my baby boy — Giovanni. We were separated at birth. Each of us needing specialised care. I ended up in HDU and he went express to the NICU.


It was 4 days before I was able to see him after I had left the HDU. I remember walking into the NICU — a place I had only visited as a medic — now a mother to see my baby. I was not prepared. At 990 grams he was the size of a cauliflower. Let me put this in perspective. He weighed less than the average weight of an adult human liver. His diaper resembled an outfit as it went up to his chest. He was covered in cotton wool and then wrapped inside a plastic bag. They said it was to conserve heat. He looked like an octopus with tubes running into and out of his tiny body. My limbs felt loose and indisciplined refusing to hold me upright. My tears spoke what my lips were too weak to say.


Back in the ward, I was consumed with thoughts of him. It didn’t help that I was surrounded by mothers who had their newborns by their side. I got well pretty quick and was soon discharged but underestimated the agonizing feeling of leaving my baby in hospital. When it was time to leave, I couldn’t. I sat crying in the parking lot for hours unable to leave him behind. My heart bled through my eyes. Eventually, we went home and thus began my journey on the NICU train. A train I found myself in unwittingly; headed to an uncertain destination. It had several other passengers. Each at different stages of this journey. The worst part is no one knew how long they would take on this train because no two days were the same. It didn’t help that I knew all the possible complications that could happen to him. And the mind tends to remember everything that can go wrong as opposed to what can go right.


The NICU is a small exclusive club of day scholar mums. First, we all wore these unsightly transparent orange frocks. We looked like uniformed prisoners. New entrants, like myself, were called form one’s. You could tell who was new because they would mostly sit at a corner or by the incubator and cry all day. That was me when I joined. I did not want to leave Giovanni’s side. When it was time to express milk I would barely make 20 mls from each breast. Soon enough, my breasts became engorged. They felt like rocks in my arms. Once, another mum approached me and asked, “How big is your baby?”

“You mean how small right?”

“No. I mean big. Here, we don’t talk of small.”

I nodded in realisation. “990 grams.”

“Mine is 680 grams. She is the champ at the corner.”

I wondered how she could be looking so stable with a baby the size of a mobile phone. She told me she was her 8th baby. The 7th was also born a preemie at 1 kg and was now at home. All the other 6 had been miscarriages.


Those were the horrifying stories people shared in the NICU. We spent our days discussing weight gain or God forbid weight loss. If you were told your baby had gained 10 grams, it was reason to Hallelujah the county! A loss in 1 gram would be a tear filled day. In our little club we were all friends who had each other’s backs. We would celebrate each milestone; like being allowed to change your baby’s diaper or even touch him/her. The best was when you were finally allowed to be skin to skin with your baby — what is commonly known as kangaroo care. Now that would have us dancing through the day. But for every high there were hard hitting lows. Like coming in the morning and finding an incubator empty or finding a mother absent. We would instinctively know a baby had died and a cloud of gloom would envelope us because no one knew if they would be next. It would remind us that we were mere mortals and the survival of our babies was purely in God’s hands. There were times we would all be expressing milk when a machine would start to beep loudly. And we had been there long enough to know which sounds were ominous.


Being a doctor was not easy either. The other moms would constantly ask me what the prognosis of their children was. When they had complications, they would ask me. Yet all I was at that time was a terrified first time mum. I had taken off my doctor hat; unwilling and unable to take it up. Speaking of, after 2 months passed it was time for me to join school as a resident student in Obstetrics and Gynecology. A feat I would not have managed were it not for my husband, the department chair and close friend D. I would be up at night every 3 hours to pump milk for the following day. In the morning, my husband would drop me off to school, then head to NICU to drop the milk and then head to work. In between classes, I would be in the car pumping milk and then after school D would take me to the hospital to spend the evening there. Repeat.


One day I got a phone call from a paediatric surgeon at the hospital. Gio had a hernia that needed surgical correction. Joe and I went in to have a discussion about it. I remember having a feeling of dread in my heart. He was still on oxygen. In his time in NICU he had developed chronic lung disease of prematurity. (It has a fancier name but let’s leave that for class at the end of this article). I wondered whether he would be able to withstand anaesthesia despite his sick lungs. I had read so much about his condition, I became paralysed; so Joe took over and gave consent. It was nerve wracking but he made it out of surgery well and remained stable. Even better, he was stable and off oxygen. That was a reason to celebrate. And we did.

Later that day however, he went back to having difficulty in breathing and was put back on oxygen. And that became our dance. He was now a big guy — 3.0 kg yet we couldn’t be discharged because he couldn’t stay off oxygen for long. I was now in form 4. Most of the friends — save for one — I had made in NICU had been discharged. I was now a veteran. We had been there for 149 days and the train ride fees had accumulated to millions of shillings. 149 days of expressing milk, sleepless nights, travelling back and forth between the house, school and the hospital and those loud beeping machines.


After a lot of consultations with various specialists, we came up with a discharge plan for Gio; we could go home with him and keep him on oxygen. He had gained good weight and was catching up with his milestones. So we — in consultation with a neonatal nurse — went out and bought all the equipment needed for his care. I turned one of the rooms in our home into a nursery for him; bought an oxygen cylinder and a paediatric monitor and got them connected. All was set. Finally our homecoming was soon to be a reality.


On 31/12/2017, Gio was discharged.


The events of that day are vivid in my mind. I had worn a chiffon blouse and turquoise tights. When we got to the NICU, my husband went in first as I changed into my orange frock. As I was changing, Joe came to me and said, “ Gio does not look ok”.

“What do you mean?” I washed my hands and quickly went in. We found him being nebulised and he was looking limp. I tried to lift his hand and it dropped like a leaf. I noticed his chest was not rising. The doctors were called in for resuscitation and against every fibre in my being I had to step out briefly for them to work. Is this what the other side of the coin felt like? I was used to being on the other side. I waited outside for 5 minutes and went back in, in time to watch the cruel hands of death pull him away. Gio was discharged, only he did not come home with us. I remember hearing the words, “Time of death”, and I knew life as I knew it would never be the same. When you lose a child an anvil hits you on the head, causing your stomach to hit the floor. The realization sloughs off your heart like callus.

I walked out to a nearby bathroom, locked the door, sat on the floor and regurgitated my soul for hours. I was later told he aspirated.


On 1st of January 2018 the world celebrated a new year. Parties were held, resolutions were made, drinks were opened and animals were slaughtered. On 1st of January 2018, I planned a funeral. And it was an out of body experience. One that I can barely remember. We buried him almost two weeks later and when for everyone else it was the end of a chapter, for Joe and I it was the beginning. The world moves on no matter how you want the sun not to rise. Some of my closest friends and sisters went on to deliver babies. Huge bouncing babies. And I couldn’t bring myself to be there for them. I can’t count the number of people that said, ‘You will get another one’, or ‘let him rest’, or ‘God took him because He loved him.’ I know they meant well. It’s the human thing to say but those words sting like salt on a fresh wound. Family gatherings were a pain. Seeing people was a pain. And you only realise when you are on the other side.


I started to lose it and went down the rabbit hole of grief and I couldn’t find my way out. Joe and I grieved together but differently. I was a hot mess. I went to our NICU whatsapp group and inboxed all the moms who had lost babies and asked each of them how they coped. I made call after call to each of them and it is through those calls that I discovered, ‘Still a mum.’ An organisation that supports parents through miscarriage, stillbirth and infant loss. Through this support group I met a lady who has walked with me. She helped me when going back to work after losing Giovanni was a nightmare. I had such bad PTSD yet I worked in a labour ward. God truly has a sense of humor. I had to re-learn how to cope with family, friends and colleagues. Back at work I would feel like eyes were following me; accompanied by whispers. Indeed, no one realy knows what’s happening behind someone’s eyes.


Grief can be debilitating. It takes anything from 6 months to 3 years to get to a point of acceptance. Time slows down and sleep becomes a gap in pain. I could not imagine a time machine convincing enough to take me back from this. Many shy away from it because no one really knows how to respond to it. And who can blame them? It’s an experience you wouldn’t wish on your worst enemy. I have learnt how to live with it. Sometimes I go to work and face various triggers — like a convulsing mother or a loss of a child and I have to make a conscious effort not to stumble over what is behind me.


A while later I conceived; out of the blue; and with a lot of intervention and support, I carried the pregnancy to term and delivered a healthy, baby boy — Gianelli. I realised that conception, carrying a baby to term, having a safe delivery and taking a baby home are all miracles. Having been on the other side of the coin, I have completely changed the way I relate to my patients especially those who have undergone infant or child loss. Both my babies names mean “ God has been gracious’ and He has been.


I had convulsions but recovered fully without any neurological damage or residual symptoms. I was on a hospital bed of grief and pain but I have come off to attend to the next person who needs it. I can be an emblem of hope that after loss you can have a bad day; but it doesn’t mean you have a bad life. The gate that guards the memories of Giovanni is high and heavy and opening it has taken more energy than I expected; but if it will heal someone else then so be it.


As Narrated to me by Dr Wanja Njiru - Mario



 

Preeclampsia is characterized by hypertension and protein in urine after 20 weeks of gestation.

A woman is said to have eclampsia if she has one or more seizures and has no other conditions that could have caused the seizure.



— Women with one or more of the following characteristics:

●First pregnancy

●Chronic hypertension, kidney disease, lupus, or diabetes prior to pregnancy

●Gestational diabetes

●Twin or triplet pregnancies

●A family history of preeclampsia in a sister or mother

●A previous history of preeclampsia

●Age under 20 years and possibly age over 35 to 40 years

●Obesity


WHAT CAUSES PREECLAMPSIA? — Abnormalities in the development of blood vessels of the uterus and placenta very early in pregnancy. Why this happens to some women and not others is not completely understood.


WHAT ARE THE SIGNS AND SYMPTOMS OF PREECLAMPSIA? — Many women with preeclampsia have no symptoms of the disease. For this reason, prenatal visits to check for high blood pressure are important.

Maternal — Most women with preeclampsia have mildly high blood pressure and a small amount of excess protein in the urine and do not experience any symptoms of the disease.

Symptoms that preeclampsia has progressed to the severe stage of the disease:

●Persistent severe headache

●Visual problems (blurred or double vision)

●New shortness of breath (due to fluid in the lungs)

●Pain in the mid- or right-epigastrium (similar to heartburn)


CAN PREECLAMPSIA BE PREVENTED? — There are no tests that reliably predict who will get preeclampsia, and there is no way to completely prevent it.

Doctors may recommend that women who have risk factors that place them at high or moderate risk for developing preeclampsia take low-dose aspirin to reduce this risk.


HOW IS PREECLAMPSIA TREATED? — The only cure for preeclampsia is delivery of the baby and placenta.


*Chronic lung disease of prematurity is also known as bronchopulmonary dysplasia (Mouthful). A known complication of preemies. Treatment is time and oxygen.

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