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Today is a day that I thought about a lot in the 6 months that Thomas was in ICU. What would we do to celebrate his ‘heart day’. His ‘heart anniversary’. His ‘heartiversary’. In the months before Thomas was born, I connected with many parents at different stages of their heart journey. Those who had just had diagnosis’s, those who were new mums to heart babies, those who had been on this journey for a long time. And over this time, my world became filled with new terms, which became familiar terms. New achievements, which id never thought or heard of before. And celebrations. For everything. For milestones, for surgery successes, for good news, which up until then, I’d totally taken for granted. 

But for all of them, there was one thing in common...

People often say to me ‘I can’t imagine what you’re going through’. And they’re right. Unless you have been in the horrific situation of loosing a child, then it is a truly unimaginable place to be. Believe me, I’ve been on both sides. I’ve seen people close to my heart loose their babies. And I thought I understood. But I didn’t have a clue. So let me try and scratch the surface of what life is like.  

You long for them, you find out you’re pregnant. You’re excited. In that moment, you’re already thinking to the future. The scans, the day they are born, what they will look like, who they will look like. How will your life change. How will you cope with two under 2. The fact that you will need a double pram. Nursery is going to cost a fortune for two...

As you all know, Thomas passed away on the 29th April, at 6 months and 2 days old in Alder Hey intensive care unit. I’ve spoken a lot about the love, care, compassion and expertise that Thomas and our family received during his whole stay in ICU and how incredible the entire team at Alder Hey are, that looked after Thomas and us as a family. 

What I haven’t spoken about much is what happened next. 

I’d imagine that it’s an impossible thing for anyone that hasn’t experienced the death of a child to even attempt to imagine. So, i’d like to share with you how our family was looked after, cared and provided for in the hours, days, weeks and now months after Thomas died. 

Let me start by introducing Claire House Childrens Hospice. 

An absolutely invaluable charity that provides...

Exactly one year ago we heard the words ‘I’m really sorry but there’s a problem with your baby’s heart’. And in an instant, our lives changed forever. At that moment, we had no clue what the future held for us as a family, or for our newborn baby boy/girl. We could only hope for the best. And we got better. We got Thomas. 

Our beautiful, strong, courageous fighter who went through more in 185 days than most of us ever will in a life time. He taught us what a true fight is, he showed us what true commitment is and he proved to us that life is short and that every moment of it must be celebrated, cherished and loved and nothing should be taken for granted. 

We have to face the rest of our lives without Thomas, but we can keep his legacy living though us...

Thomas Edward Garner

27.10.17 – 29.04.18

Thomas was born on 27th October 2017 at St Mary’s hospital in Manchester and he started as he meant to go on – with a dramatic entrance into the world!

Very early on, Thomas showed that he had the strength and determination that he continued to show throughout his life, when at just 2 days old, he was going to be given a try off the ventilator. Thomas however had other ideas, and took the matter into his own hands and extubated himself, setting the pace for his nurses in st Mary’s.

After a few days, it became obvious that Thomas would need his heart surgery much earlier than we had all hoped and anticipated. He was transferred to Alder Hey hospital at 9 days old and this is where he would then spend the rest of his life.

Upon arriving at Alder...

A very difficult day today – Thomas went back onto conventional ventialtion from the high frequency oscialltory ventilator on Friday. He was doing really well and we were happy with how he was doing. However his abdomen started swelling and getting bigger and bigger.

Thomas has always had a large liver due to his condition and because he’s been recieving intensive care for so long, however this was more than just a large liver. It was expanding in front of us.

He had a surgical review in the morning, when it wasn’t as large where they said we will watch and wait. But by the evening the surgeons had to be called back in and within 20 minutes of them arriving I was signing the consent fo to take him to theatre for explorative surgery.

He was gone 90 minutes where they didn’t find anythi...

STENT DAY! Today has been a long awaited day. The day Thomas receives his bronchus stent with the hope that it will open up his left bronchus enough to be able to allow him to come off the ventilator.

He went off to theatre at 11am and was back by 1pm. The procedure was apparently one of the most difficult and complex (shocker!) ones they’ve done, but it was a success.

Thomas however has appeared not to like the procedure, and came back unable to ventilate on conventional ventilaton and had to be put on high frequency oscillatory ventilation. This is definately a step in the wrong direction for Thomas, and hopefully just a blip in his journey to move forward.

For now, we wait.

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...

Sorry for thr the lack of updates on Thomas over the last month. Not much has been happening in terms of lreogress forwards and we’ve been stuck pretty much waiting. So, what has been happeneing…:

An interesting few weeks. Since the last update on the 28th Jan, there have been a few ups and downs and he’s pretty much in the same place ventilation wise.

We were told that Thomas’ main immediate issues were his nutrition (he was failing to thrive), his continual infection cycle and his airways issue.

So, his feeding method was changed to continual NJ needs (into his jejunum) with high calorie formula and topups of EBM as extra NG. This seems to have been the answer to his weight gain...

Thomas has had an interesting couple of weeks.

There have been no updates really as there wasn’t much to say other than ‘still weaning his ventilation’. This was going really well and he was settled, happy and content.

However, he’s been hit again by infection. Thomas managed to get down to almost extubatable pressures by Tuesday of last week. We were planning his extubation to be Thursday or Friday, following one more pressure wean and we’re talking about the best non invasive ventialtion to wean him on to. However, by Wednesday morning all this had changed and he was desaturating over night and required increase in ventialtion.

By Wednesday morning, all the work of the last two weeks was undone and he was back on the same high pressure that he was when the weaning was started...