5 Months on ICU…what is life like?

Living in ICU – what is it like?

5 months in ICU. 150 days.

As you all know, Thomas hasn’t had an easy ride. Diagnosed with a rare congenital heart defect at 20 weeks we were expecting rough, and we were expecting surgery and hospital stays. But we weren’t expecting 5 months and counting of the most terrifying, gut wrenching, up and down, emotionally draining rollercoaster of an experience that Thomas has had.

So what is it actually like to have a child in ICU? Thankfully this isn’t an experience that many will have had to endure. Most parents will be lucky enough to have their baby and be home within a few days, worrying about feeding and winding and lack of sleep. I’ve been there, I’ve done that and loved every minute. However being an ICU mum has opened my eyes to a completely new life, one that a select few are living, one that not many people can begin to understand, one that some have lived and got out of it the other end and one that some have lived and gone home empty armed and broken hearted. Not one person can tell you how it will end for you. It is an indescribable experience, only understood by those living the same life. But I’m going to do my best to describe our experience so far.

It starts with hope and excitement. A new baby. Yes, he has a CHD. But ‘they can do amazing things these days’ right? So I kept being told by people when they found out my baby had a CHD. So we arrive at one of the world leading PICUs. Fresh out of an emergency c section, bewildered, sore and terrified, yet happy and totally in love with my new baby, thrown into a world of medical jargon, nurses, doctors, consultants, surgeons, anesthetists, dietitians, pharmacists all of whom already know your child before you have arrived. You sit at their bedside and get to know all of these people. You pick up the medical terms and you understand a lot of it. You know when your child is doing well, and you know when they are not. You start to see trends. When doctors do their ward rounds, when they will be in meetings, when they will be doing their assessments. And you wait. And wait. As you know that soon it will be your child’s turn and you can get the day’s plan and any information from what has happened overnight in the few hours that you left them for. You question. Everything. The nurses, drs, consultants. Why do they need extra sedation, what do they need that blood test/scan/echo/ultrasound/X-ray. What are they looking for and what does that mean to your child? What is their hope for outcome. What is their prognosis.
You are hopeful that your child will progress. You are seeing progress. Then something happens and they take a backwards turn. In our case more often than not, this is because of infection. And that hope becomes fear as you see their life support increase and more infusions added and more lines inserted into them. But then they begin to make small improvements and your hope grows stronger again. And this repeats again and again. You have 100% focus on your child the whole time. You are their only advocate. You challenge medics, push for answers, consent their surgeries and sit with them for hours and hours on end simply holding their hands or stroking their hair. Because that’s all you can do for your child. 5 months down the line, nothing has changed in respect to my hope and positivity. Thomas has been though so much and we have been though hell, particularly over the last week (more of that in ‘journey so far’).  However he is still fighting and we are still supporting him, advocating for him, making decisions for him and most importantly, staying positive for him. He is an incredibly strong little boy and for that I am thankful. He may not be where we expected him to be 5 months ago but most importantly, we are still here and I will continue to sit by him and hold his hand all day and night willing him to make improvements.

Throughout the last 5 months, I have been told countless times that I am brave and so strong. I don’t believe this is true. I don’t have a choice in this. The children are the brave and strong ones, their parents are just along for the ride. However, we have no choice but to stay positive through the negative (and there are a lot of those!) and to keep hope through the fear (which is constant).
ICU can be a daunting place, but for me it’s the only place I can spend time with my baby so I am there for very long hours every day and night and enjoy the time I spend there. During this time you see a lot of things that will stay with you forever. You face death often. The first time I saw a child die, will never leave my mind. I will always remember her name, her parents and exactly what I saw happen. But sadly it comes with the territory. What I find harrowing about this is as one family are facing their worst fears and their world has come crashing down, life continues and nothing changes for others. The world goes on.

Emergency alarms are one of the scariest sounds you can hear. They alarm across the whole unit, even in the waiting areas. If you’re not sat with your child at the time, you instantly think the worst. Then you feel guilty for feeling relieved when you find out it wasn’t for yours. Because it was for someone’s child. When it is your child, your heart is pounding, your legs are like jelly, your mouth is dry and you feel sick, but you’re frozen to the spot, willing yourself to run away but not being able to as you need to be there for your baby. You watch every dr and consultant on that day or night fly into your bedspace and watch them work to stabilise your child. And again, you wait. And hope.

One of the things I have found most difficult since being on ICU is putting my 100% trust in others. It’s not natural, however I couldn’t ask for a better team of people to put trust in. Handing your child over time after time to surgeons, anesthetists, porters and consultants for surgery’s and imaging never gets any easier. Consenting each one of these always brings up the question ‘is this the right thing to do? Am I doing the best for Thomas?’. Over time you build relationships with the people caring for your child and that trust comes a little more naturally. This is something I don’t know if others can do. I trust that he is in the best place with the best of the best people, but still find giving trust difficult as he is my baby. He has amazing medics. They do everything they can for him and ultimately, as parents we have limited control over what will happen short term and in the future for our children as only they can show us what they can do. We can just be there for them and watch and wait. Which is what I have been doing for the last 5 months.

Every day there is something to celebrate. A good blood gas, a ventilation wean, a stable night,getting your baby out for a cuddle, a child waking up, a poo!! These small things keep us going. Some days, the moments of celebration are bigger and longer than others but I find it important to find at least one of these occasions every day. But every day there is consuming fear. What if’s. The bigger picture. And if you allowed it to, this would become completely consuming and overwhelming. Sometimes it does. But then you have to get up the next day and do it all again so I focus on the good, accept and understand the bad and keep a realistic but positive outlook. And all this whilst trying to keep the rest of the family together, spend as much time as possible with Thomas’ big brother Henry and my husband, Dan. And somehow, it works.

Over the last months, I have seen a lot of people pass through ICU. Many happy endings and a few very sad (but peaceful) endings.
Whilst here I have been very fortunate to have met some amazing people in similar (but completely different) situations. These people are the ones that get you through the day to day. We call them our heart family. Getting off the unit for an hour or so to have lunch, have a chat and a laugh (and a lot of Chinese food!) makes all the difference, especially on bad days. We very sadly lost a member of this family this week. Beautiful Fatima fought a courageous and long fight and is now at peace. We miss her and her mummy and things aren’t quite the same.

This experience has also shown me that there are so many people that want to offer help. Family, friends and strangers alike. Everyone wants to do something. Random acts of kindness from complete strangers, gifts in the post from people I’ve never met before, all thinking of Thomas. Letters from mums thinking of us from across the Atlantic. So many people care and want to help.

But ultimately, this is all down to Thomas. No one day is the same and you don’t know what to expect day to day. He is the only one that can do this. And we remain positive that he will!

Happy 5 months baby boy. Keep fighting!