My NICU Story – Miracles Do Happen!

by Monique Matheson

Finding out I was pregnant was a bit of a surprise, but I soon came around to the idea and for my first trimester, everything seemed to be going well nothing at all was flagged and I was feeling really well.

But as I was having my 20-week scan, the doctor was really quiet and I quickly realised something was wrong. I was told my son was dangerously small and that I could lose him at any moment, so I might want to consider having an abortion. The word ‘abortion’ came as a huge shock to me. I had just seen my baby moving around I assumed happily so I felt that I couldn’t consider that as an option.

I was told my baby, who weighed just 186g, had Intrauterine Growth Restriction (IUGR) because my placenta wasn’t delivering enough nutrition. I went home disheartened and really upset. But tried to stay positive and focused on trying to give my baby all the nourishment he needed. I’m not sure if it was the high protein diet I put myself on which made the difference, but by 24 weeks, he was 339g and five weeks after that, he was over 600g.

At 29 weeks, when I was due to have yet another scan, I noticed my baby was moving less than usual, but I was too scared to tell the doctor when she asked. The scan showed he wasn’t that active without me even saying though, and the doctor said my baby needed to be delivered the next day.

I had to be transferred to Sunderland hospital, over two and a half hours away, because there weren’t any free incubators. I suddenly became very anxious as I didn’t know anyone there and I had never been there before but I was soon very happy to have been transferred there because I had never met so many lovely people in one place. 

At 7am, I went into the operating theatre with my mum. I had become so used to hearing bad news throughout my pregnancy that I was preparing myself for the worst. But then I heard a little cry, and I can’t describe how happy I felt to know he was alive.

I didn’t have much chance to see him because he had to go straight to intensive care. I was given a picture of my baby while I was recovering which made me feel both happy and sad at the same time. I was happy that he was finally here but it broke my heart to see him with an oxygen mask on: I had just given birth to a baby and I didn’t even know what he properly looked like. 

When I got to see him, he was the tiniest human I had ever seen, weighing just 1lb 10oz. And then the next day, when I went down to the unit, I could see his whole face – he didn’t have an oxygen mask on! The nurse told me that overnight he had been sucking on his oxygen tube like a dummy and his numbers were sky high, so they realised he didn’t need it. I couldn’t believe it – he had only been in the world for a few hours and he was already showing me so much strength, inspiring me to be strong too.

Being able to do his cares made such a difference. Just giving him a quick wash with cotton wool and swabbing his mouth made me feel like I was actually needed. He was so small that when it came to changing his nappy, I only needed to use my little fingers to lift up his legs. At first, I was really nervous because I was scared I might hurt him. But I would definitely encourage other parents to embrace every chance to be as involved as possible and not let fear get in the way because it really helped me to feel like a mum.

Similarly, if I could go back, I would tell myself not to be so stressed about the fact that I couldn’t breastfeed him. In hindsight, I can see that it was outside of my control, so there was no point in feeling guilty, especially because my milk did come in eventually. 

After eight days, we were transferred back to my local hospital in Leeds. I was anxious about having to get to know a new unit and new staff. But when I arrived and saw him there, he had been dressed in a vest and it made me so happy to see him in proper clothes for the first time and not just in a nappy. 

It felt like a step back when he was put back onto oxygen. Suddenly, there was a constant beep, beep, beep from his oxygen alarms. I had been quite naïve, thinking he would just keep getting better and better. I realised I had to take one day at a time,so I repeated a mantra to myself: ‘not every day will be the same’ to stop myself becoming too disheartened.

Two and a half months in, we had to transfer hospitals again when I moved back in with my parents. So it was yet another unit and another set of nurses to get to know. By this point, I was desperate to go home, yearning for a day when I could just be in my pyjamas.

But then, when it came to discussing my son being discharged on oxygen, I wanted my son to stay on the unit. It took a while to learn how to put it on and adjust the levels, but once I did some research and found out that it isn’t uncommon for premature babies to come home on oxygen, I felt more confident.

I was so grateful for having been involved with all his cares when it was time to come home.  While spending a night ‘rooming in’ at the hospital with him, I quickly realised there was a difference between feeding him all day and then getting a full night’s sleep at home to being with him all day and all night. I didn’t know who he was during the night. 

But as much as waking up three times to feed him was a shock to the system, it also felt just as it should be, like I was having the experience I was meant to have had from day one. I had been a mum for months by this point, but those night-time feeds were the final puzzle piece to fully feeling like one. 

Monique Matheson lives in the UK and has a YouTube channel; Independent_Mama_Journals where she talks about her experience having her preemie and his IUGR diagnosis.
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Social Distancing & the Village

by Kristina Mulligan

This world is in scary times as we deal with a global pandemic. COVID-19 is causing fear in many and panic in others. In some way, however, we all feel the anxiety – and possibly the soreness of dry hands. Social distancing and isolation has become the way of life for many, and those that are a bit more “adventurous” are still navigating cancelled events (on their part or society’s) and having to go to work in a world that’s partially shut down. It’s uncharted territory for so many but, as a preemie parent, a lot of these precautions are a part of a normal season. 

I have often been told that the voluntary quarantine that we endure each year since Flynn’s birth is “unnecessary.” I’ve heard unkind words about my “helicopter parenting” and “over-reacting,” that I’m “living in fear” and that “kids need exposure to germs to thrive.” When I wash my hands countless times a day, keep hand sanitizer all over the place, and sanitize my phone, I’ve been called “paranoid” and a “germaphobe.” I can take all that, though, it doesn’t hurt more than it would to have my son’s fragile health compromised. I stand by our decision to self-isolate every year, not because I’m terrified of another hospital stay (though that does play a role) or that I believe the world is only full of sickness and germs. I believe in it for the same reason that your family is doing it due to COVID-19: you want to protect your family. The feelings that you’re having in this moment – fear, uncertainty, confusion, panic – I am no stranger to them.

I say this not with the tone of “I TOLD YOU SO,” instead with one of, “I’ve been here. We’ll get through this.” I’m not insinuating the plight of one family is equal to a global crisis, but up until this point, we have a track record of being okay and standing together, even through all the fear. The same that you are feeling right now. In a time like this, social distancing is important not only for your sake, but for the health of those around you – your neighbors, your friends, the medical community. It’s not a time to panic, hoard, and think only about yourself. Remember that the community as a whole and sticking together (from afar) is equally important as your individual well-being. It takes a village to tackle big things like COVID-19. Be a part of the village, not a part of the problem.

Kristina Mulligan is mom to preemie Flynn and a Parent Preemie Mentor for Graham’s Foundation. She has a blog she posts regularly, “Once In A Mulligan”.

NICU Babies in the Era of COVID-19

by DeeAnna Serna, RCP, RRT-NPS, AE-C

Hello there, let me tell you a little about me before I get into all the details of this topic.

My name is D’Anna I am a respiratory therapist with about 20+ years of experience, I’ve been a NICU therapist since 2000.  I now work in the outpatient setting as an Asthma educator and Cystic Fibrosis specialist.

So … Fortunately I know about respiratory diseases, this virus is novel thus the N in 2019-nCoVand we are learning on the daily.  

What we do know.

The symptoms may appear 2-14 days after exposure.* source

  • Fever
  • Cough
  • Shortness of breath  

The best way to prevent illness is to avoid being exposed to this virus.

While that may go without saying… here is a link with information on prevention and cleaning CDC-Covid-19 prevention

I state this information for background.  

Now what does this mean for our babies in the NICU?  

The short answer is that there is not enough information out there, because we have (fortunately) have not gotten report of an exposure of Covid-19 in a NICU.

As this is an emerging virus most of the information is based on effects on pregnancy and newborns (term gestation).  

There is a small amount of data regarding delivery of infants to Covid-19+ mothers and the outcomes following delivery.  Covid-19 pregnant women-and-impact-newborns

 What we as a team can do (family & medical) is prevention.

Strict visitation policies, effective hand washing and cleaning of equipment.

Staying home if you feel ill and clean handling of breast milk if one does have symptoms.

While this may seem like repetition … it is because we all need daily reminders.  

I am grateful that I have heard no reports of this organism in a NICU and we must all work together to keep it this way. When more information becomes available I will be happy to update.

So I close saying … stay strong and vigilant. These little ones are being born into a very different world.  You as always make the difference and we as your NICU team are here to help and support you in any way we can.

Be well and take care of each other …

DeeAnna Serna is a Respiratory Therapist in Southern California. She has worked in the NICU and is currently the Lead Respiratory Therapist for the Pediatric Pulmonary & Sleep Medicine Clinic as well as the Adult & Pediatric Cystic Fibrosis Clinics.

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