THE REALITY OF A NICU PARENT

EMOTIONAL, HEALTH, MOTHERHOOD, PREGNANCY, BIRTH & BABY'S

My heart was in my mouth while reading this list from Sam @the_nicu_mummy

The fear and the anxiety around your child being poorly is just horrendous. Your gut instinct is to look after them, to protect them, and sometimes that’s completely out of your control, which takes your mind to some dark places.

For Sam, her nightmare began during pregnancy and then straight after giving birth, her baby boy was taken to the Neonatal Intensive Care Unit, which is somewhere you never hope to find yourself.

———————————————————————–

We were beyond excited for our 20 week scan, the gender scan to us.
It is called the “Anomaly Scan,” and yet, it never occurred to us that something could be wrong.
It’s a BOY!
After he revealed the gender, the sonographer didn’t know what to say to us. He mumbled something about not having a clear view of the baby’s diaphragm, and that a doctor would need to see us to get a better view. My husband later asked him if there was any cause for concern and he simply said: “I don’t know.”
Hello Foetal Medicine. This wasn’t even a medical specialty that I was aware of. I remember holding my breath throughout the scan.
Our baby boy had a very large lesion growing on his left lung. There were three potential outcomes. The lesion could disappear before birth, continue to grow with him, or it could outgrow him, which would be fatal.
We had some time to digest what we had heard, in another room, before the consultant and nurse came back to talk to us further.
We would need scans every four weeks, but first, we needed to go to Great Ormond Street Hospital for a specialist scan of the baby’s heart. The lesion had pushed his heart to the other side of his chest, and they needed to see if there had been any damage as a result. The day was Thursday, and we arrived in London for the scan the following Monday.
The heart scan was all clear. Some relief. But the realisation that we had a long way to go. Would we make it to the end of the pregnancy? What would happen at the next scan in four weeks’ time?
I was signed off work. I couldn’t bear to be around people. I worked for a travel company in the middle of a department store, there was nowhere for me to hide when I needed a moment. I didn’t want total strangers noticing my bump and asking me questions, expecting me to be filled with “the joy” that I was just terrified to feel.
The subsequent scans were as positive as they could be. The lesion wasn’t disappearing, but it was growing with him, and not taking over. This is all we could hope for.
Our consultant was unsure of how this could affect him once he was born. He may not be breathing when he arrived. He may need to stay in the NICU from birth. The NICU. The Neonatal Intensive Care Unit.
We were shown around the NICU, so that it wasn’t too unfamiliar if we ended up in there. I cannot remember any of that tour. I didn’t believe we would need to be familiar with it. This is where the premature and really poorly babies go, isn’t it?

I was induced at 39 weeks. The final eight weeks of my pregnancy spent hobbling around on crutches due to PGP (Pelvic Girdle Pain). The icing on the already very anxious and stressed cake.
After 27 hours, our boy arrived. Forceps delivery. Episiotomy.
To our shock, he came out crying. He was breathing! We had a couple of minutes of skin to skin, which I wasn’t expecting, and then he was taken to the cot in the delivery room. The NICU team came and took him away, with my husband in tow, and suddenly, I was alone.
I was recovering from the epidural. Got up and showered. I was at a loose end. I should have my baby with me. I should be enjoying endless cuddles with him and my husband. I should be trying to figure out breastfeeding.
90 minutes later, my husband came back with the doctor from the NICU. Our boy wasn’t ok. He needed additional oxygen to breathe. They needed to do further investigations in order to come up with a treatment plan. There was no way he could go home in his current situation. I was numb.
We informed the Grandparents of their promotions – all first-time grandparents. But we left the phone calls there.
My husband needed some time. I didn’t know what he had seen in the NICU, but I could see he was struggling. He had a much needed and much deserved power nap.
Our son was four hours old by the time I got to lay my eyes on him again. So peaceful in his incubator, despite the beeping and ringing noises, and the extra leads and wires that were attached all over his tiny body.
We left him for the evening. Still numb. We went back to our private room on the prenatal ward. I was fortunate not to be on the postnatal ward with the other Mummies and their newborns. I know that other NICU parents were not as fortunate in this respect. Imagine, lying next to another Mummy and listening to them with their new baby whilst yours is away from you. Torture.
The midwives and NICU nurses asked me how we had planned to feed our baby. I had always hoped to breastfeed, but I had very little knowledge of it. I forgot to read that part of the books. And so, hand expressing was discussed. And an expressing schedule using the hospital grade breast pumps. I was in unknown territory here.
24 hours after he was born, my husband and I finally got the cuddles with our son that we had longed for. Thinking back now, I can’t believe we had to wait that long, but having spoken to other NICU parents since, this was nothing compared to them. Some wait days, weeks or even months to hold their baby for the first time.
I was discharged the following evening. So eager to get home and sleep in my own bed. It never crossed my mind that I would be leaving without my baby.
As I got into the car, I noticed the empty car seat behind me. My heart broke. This wasn’t how it was supposed to go. We were supposed to head home together, as a family. It was unnatural to be leaving without him.

Our son had two lesions on his left lung. Why? No one knew. It was so rare that the surgeons informed us they didn’t feel comfortable performing his surgery. Surgery. Our newborn baby needed surgery. Surely, he’s too small?
We were waiting for a bed on the NICU at Great Ormond Street Hospital (GOSH) as there was a surgeon there that could perform the surgery our son needed. Surreal doesn’t quite cover it. We all know that hospital. We all know that they help the sickest of children. And ours was going to be one of them.
My days began to revolve around expressing. I pumped every 2-3 hours throughout the day, and once overnight. My milk arrived on day three and it wasn’t too bad, not too uncomfortable or painful. I was able to cope with it. I felt it was the least of my worries.
We also began to feel more comfortable with the set up that our son had. The nurses showed us how to change a nappy using the four little doors of the enclosed incubator. This made me feel more like Mummy and less like a spectator. There were little things like that, that we could get involved in, that made the world of difference.
Day nine in the NICU and he took a turn for the worse, and instead of waiting patiently for a bed at GOSH, we were rushed down there on a blue light transfer. There was a specialist neonatal ambulance, fully equipped with a doctor and nurse, to transport our son, and my husband and I down to London.
Thank goodness for all those people who donate money to GOSH. There was emergency accommodation waiting for us when we arrived shortly before 5am. We were running on empty having not slept all night. It had been a highly stressful and emotional evening and even a couple of hours of sleep was appreciated. We would be moved to a permanent room later that day.
Later that afternoon, my mother-in-law arrived with our suitcase full of our belongings that couldn’t be taken down with us in the ambulance.
Our baby boy took another turn for the worse.
All of a sudden, alarms were ringing, there were nurses and doctors all around his bed, and we had no idea what was going on. But I had the fear. I suddenly lost sight of ever taking our boy home. I can’t describe how that feels. There are no words.
He fought back. They wanted to intubate him, put him on a ventilator to help him breathe, but they settled on a Continuous Positive Airway Pressure (CPAP) machine. He looked like a little elephant due to the mask attached to his face resembling a trunk.
He fought off two infections but day 19 was our window for his surgery.
We woke at 5am in order to spend time with him before he went down to the operating theatre – he was first in the list at 7am.
We said our farewells on the NICU. And then headed back to our room, and I cried myself to sleep.

My in-laws arrived and dragged us out of our room to have breakfast. They were right to. We needed to keep busy and not dwell on what we couldn’t control.
Three hours or so passed, and my husband received the call from the surgeon. He had successfully removed one of the lesions. The other one he left alone, in the hope that our son might be able to live with it. Only time would tell.
We raced back to the hospital. Our son was still on the ventilator and had a chest drain inserted. He was wide awake. It was comforting to know he could see us and know we were with him.
Three days post-surgery, and we were transferred back to our local hospital to recover. I was desperate to sleep in my own bed and be closer to our support network.
We settled back into our local hospital as if we had never been away. Plenty of familiar faces to welcome us back. I was feeling positive knowing that all being well, we were on the home stretch.
Establishing breastfeeding was my new focus. My husband returned to work after three weeks off. We planned for him to take some annual leave once all three of us were at home.
We had begun breastfeeding on Mother’s Day, my first Mother’s Day. It felt like a very appropriate day to begin our breastfeeding journey.
It took a few days for him to get the hang of it, but he was getting stronger each day and able to tolerate more milk. Positive steps in the right direction.
As breastfeeding was going so well, we were asked to stay on the unit for a few nights so that we could get fully established. I was very much feeding on demand by now and had a speech and language therapist check in on us to ensure our latch was correct.
As we moved into our bedroom for the weekend, one of the nurses suggested we remove the last monitors that were still attached to our baby. He didn’t need them. They were happy for them to go, especially as we wouldn’t be taking them home with us. It was time for us to get used to not having that extra safety net. A very big step for us.
We spent two nights on the unit with him. It was lovely to cuddle him whenever we wanted. And tend to his every need. We grabbed some breakfast and returned to the ward in time for rounds.
“We’re happy for you to take him home today, if you would like to?”
I burst into tears. This is all we ever wanted to hear. The time had come. Our time had come.
Whilst I was ecstatically happy, I couldn’t help but let the anxiety wash over me. It was a big step to care for him at home, without the support of the medical staff.
But he was ready. We were ready. We just needed to take the plunge.
The empty car seat was no longer looking so empty. I was beaming, albeit nervously. Such a mix of emotions.
Home. All three of us. Together. As a family. It was all we ever wanted.
Throughout the first year, there were moments of feeling overwhelmed, tearing up over the smallest of things, seeing a blue lit ambulance and breaking down. I was not ok.
I now know, it’s ok, not to be ok.
I sought professional help. We wanted to have another baby. I was filled with fear and anxiety. What if it happened again? I can’t go through that again. We couldn’t go through that again.
Positive pregnancy test.
Hello Lockdown Baby.

HELPFUL RESOURCES:

NHS: www.nhs.uk/pregnancy/labour-and-birth/after-the-birth/special-care-ill-or-premature-babies/

Bliss: www.bliss.org.uk

Tommy’s: www.tommys.org

———————————————————————–

* “But how… do babies get in Mummies tummies?” is one of the many tricky questions I tackle in my debut book BUT WHY? which is available to preorder now and also on audiobook.**

———————————————————————–

FANCY READING SOME MORE?

– Read Sarah Kirker’s list Born At 24 Weeks which was written while she was in the thick of it, when her baby was just three weeks old.

– Listen to hypnobirthing teacher, Hollie de Cruz, on Honestly podcast as she speaks about Birth and how labour isn’t something we can plan or control, but it can be transformative.

THE REALITY OF A NICU PARENT

My heart was in my mouth while reading this list from Sam @the_nicu_mummy

The fear and the anxiety around your child being poorly is just horrendous. Your gut instinct is to look after them, to protect them, and sometimes that’s completely out of your control, which takes your mind to some dark places.

For Sam, her nightmare began during pregnancy and then straight after giving birth, her baby boy was taken to the Neonatal Intensive Care Unit, which is somewhere you never hope to find yourself.

We were beyond excited for our 20 week scan, the gender scan to us.

It is called the “Anomaly Scan,” and yet, it never occurred to us that something could be wrong.

It’s a BOY!

Hello Foetal Medicine. This wasn’t even a medical specialty that I was aware of. I remember holding my breath throughout the scan.

Our baby boy had a very large lesion growing on his left lung. There were three potential outcomes. The lesion could disappear before birth, continue to grow with him, or it could outgrow him, which would be fatal.

We had some time to digest what we had heard, in another room, before the consultant and nurse came back to talk to us further.

The heart scan was all clear. Some relief. But the realisation that we had a long way to go. Would we make it to the end of the pregnancy? What would happen at the next scan in four weeks’ time?

The subsequent scans were as positive as they could be. The lesion wasn’t disappearing, but it was growing with him, and not taking over. This is all we could hope for.

Our consultant was unsure of how this could affect him once he was born. He may not be breathing when he arrived. He may need to stay in the NICU from birth. The NICU. The Neonatal Intensive Care Unit.

We were shown around the NICU, so that it wasn’t too unfamiliar if we ended up in there. I cannot remember any of that tour. I didn’t believe we would need to be familiar with it. This is where the premature and really poorly babies go, isn’t it?

I was induced at 39 weeks. The final eight weeks of my pregnancy spent hobbling around on crutches due to PGP (Pelvic Girdle Pain). The icing on the already very anxious and stressed cake.

After 27 hours, our boy arrived. Forceps delivery. Episiotomy.

To our shock, he came out crying. He was breathing! We had a couple of minutes of skin to skin, which I wasn’t expecting, and then he was taken to the cot in the delivery room. The NICU team came and took him away, with my husband in tow, and suddenly, I was alone.

I was recovering from the epidural. Got up and showered. I was at a loose end. I should have my baby with me. I should be enjoying endless cuddles with him and my husband. I should be trying to figure out breastfeeding.

90 minutes later, my husband came back with the doctor from the NICU. Our boy wasn’t ok. He needed additional oxygen to breathe. They needed to do further investigations in order to come up with a treatment plan. There was no way he could go home in his current situation. I was numb.

We informed the Grandparents of their promotions – all first-time grandparents. But we left the phone calls there.

My husband needed some time. I didn’t know what he had seen in the NICU, but I could see he was struggling. He had a much needed and much deserved power nap.

Our son was four hours old by the time I got to lay my eyes on him again. So peaceful in his incubator, despite the beeping and ringing noises, and the extra leads and wires that were attached all over his tiny body.

I was discharged the following evening. So eager to get home and sleep in my own bed. It never crossed my mind that I would be leaving without my baby.

As I got into the car, I noticed the empty car seat behind me. My heart broke. This wasn’t how it was supposed to go. We were supposed to head home together, as a family. It was unnatural to be leaving without him.

Our son had two lesions on his left lung. Why? No one knew. It was so rare that the surgeons informed us they didn’t feel comfortable performing his surgery. Surgery. Our newborn baby needed surgery. Surely, he’s too small?

My days began to revolve around expressing. I pumped every 2-3 hours throughout the day, and once overnight. My milk arrived on day three and it wasn’t too bad, not too uncomfortable or painful. I was able to cope with it. I felt it was the least of my worries.

Later that afternoon, my mother-in-law arrived with our suitcase full of our belongings that couldn’t be taken down with us in the ambulance.

Our baby boy took another turn for the worse.

All of a sudden, alarms were ringing, there were nurses and doctors all around his bed, and we had no idea what was going on. But I had the fear. I suddenly lost sight of ever taking our boy home. I can’t describe how that feels. There are no words.

He fought back. They wanted to intubate him, put him on a ventilator to help him breathe, but they settled on a Continuous Positive Airway Pressure (CPAP) machine. He looked like a little elephant due to the mask attached to his face resembling a trunk.

He fought off two infections but day 19 was our window for his surgery.

We woke at 5am in order to spend time with him before he went down to the operating theatre – he was first in the list at 7am.

We said our farewells on the NICU. And then headed back to our room, and I cried myself to sleep.

My in-laws arrived and dragged us out of our room to have breakfast. They were right to. We needed to keep busy and not dwell on what we couldn’t control.

Three hours or so passed, and my husband received the call from the surgeon. He had successfully removed one of the lesions. The other one he left alone, in the hope that our son might be able to live with it. Only time would tell.

We raced back to the hospital. Our son was still on the ventilator and had a chest drain inserted. He was wide awake. It was comforting to know he could see us and know we were with him.

Three days post-surgery, and we were transferred back to our local hospital to recover. I was desperate to sleep in my own bed and be closer to our support network.

We settled back into our local hospital as if we had never been away. Plenty of familiar faces to welcome us back. I was feeling positive knowing that all being well, we were on the home stretch.

Establishing breastfeeding was my new focus. My husband returned to work after three weeks off. We planned for him to take some annual leave once all three of us were at home.

We had begun breastfeeding on Mother’s Day, my first Mother’s Day. It felt like a very appropriate day to begin our breastfeeding journey.

It took a few days for him to get the hang of it, but he was getting stronger each day and able to tolerate more milk. Positive steps in the right direction.

As breastfeeding was going so well, we were asked to stay on the unit for a few nights so that we could get fully established. I was very much feeding on demand by now and had a speech and language therapist check in on us to ensure our latch was correct.

We spent two nights on the unit with him. It was lovely to cuddle him whenever we wanted. And tend to his every need. We grabbed some breakfast and returned to the ward in time for rounds.

“We’re happy for you to take him home today, if you would like to?”

I burst into tears. This is all we ever wanted to hear. The time had come. Our time had come.

Whilst I was ecstatically happy, I couldn’t help but let the anxiety wash over me. It was a big step to care for him at home, without the support of the medical staff.

But he was ready. We were ready. We just needed to take the plunge.

The empty car seat was no longer looking so empty. I was beaming, albeit nervously. Such a mix of emotions.

Home. All three of us. Together. As a family. It was all we ever wanted.

Throughout the first year, there were moments of feeling overwhelmed, tearing up over the smallest of things, seeing a blue lit ambulance and breaking down. I was not ok.

I now know, it’s ok, not to be ok.

I sought professional help. We wanted to have another baby. I was filled with fear and anxiety. What if it happened again? I can’t go through that again. We couldn’t go through that again.

Positive pregnancy test.

Hello Lockdown Baby.

HELPFUL RESOURCES:

NHS: www.nhs.uk/pregnancy/labour-and-birth/after-the-birth/special-care-ill-or-premature-babies/

Bliss: www.bliss.org.uk

Tommy’s: www.tommys.org

* “But how… do babies get in Mummies tummies?” is one of the many tricky questions I tackle in my debut book BUT WHY? which is available to preorder now and also on audiobook.**

———————————————————————–

FANCY READING SOME MORE?

– Read Sarah Kirker’s list Born At 24 Weeks which was written while she was in the thick of it, when her baby was just three weeks old.

– Listen to hypnobirthing teacher, Hollie de Cruz, on Honestly podcast as she speaks about Birth and how labour isn’t something we can plan or control, but it can be transformative.

OR HOW ABOUT WRITING A LIST?

Find submission guidelines here. All writers and topics are welcome, but we are currently particularly looking for lists on:

– Internet trolling

– Prison

– Pain killer addiction

– Extremely large families

– Estrangement

– Lottery winners

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