NICU
The first week in NICU, passed in a blur, I think this was partially due to the fact that I was feeling so ill, still in a state of shock, and absolutely terrified. I wasn't sleeping, I didn't see how anything so small and so dependant on all those machines could live.
I was so totally convinced that he was going to die, that in order to protect myself I stayed away emotionally. We weren't allowed to touch him, I couldn't do anything for him, anything he needed the nurses did. I just sat, and stared at the machines, every time an alarm went I was convinced that was it. In fact it took all the strength I had just to be able to walk to the NICU, and getting through the door..............
I would lie in my bed on the ward waiting for the knock on the door, I have never known fear like it...
At the end of the first week I remember the Consultant saying that Michael wasn't at that point doing anything that they wouldn't expect a baby of his gestation to do, and at that time they were giving him a 50-50 chance of survival......
By the end of the second week Martin and I were being taken into a little room to discuss Michael's developing problems. The concerns were that his PDA wasn't closing and flooding his lungs with blood, this was causing problems with his SAT's levels, there was also talk for the first time of the IVH's he developed, grade 2 bilateral, and the words should he continue to bleed it will be the equivalent of him having had a stroke were being mentioned.
There was a concern that maybe there was a problem with his stomach, and his intestines, and the difficulties that he was having digesting his food & the possibility that he was developing NEC.
There were also concerns that the ventilator was damaging his lungs, they were apparently having difficulties actually locating one of Michael's lungs on x-rays.
We had this conversation with them, & I remember asking what all this meant, what it meant for Michael, were they saying that he was too sick and the future too bleak??? I don't remember actually getting an answer other than - you need to be aware of what is happening, and we will have to see how it goes.
Michael had a big notice stuck on his warming tray "DO NOT TOUCH - MINIMAL HANDLING" he did not like being handled or touched by anyone, his sat's would drop when touched, the nurses had learnt to leave him well alone, which meant that we too were not able to touch him.
Four days later Martin went to see Michael in the NICU, with his mum, when he got home he was in tears, and when he was finally able to tell me what was going on, he said that the Dr's were saying they wanted to switch Michael's life support off, and that they wanted to discuss it with both of us.
When we got back to the NICU together that evening we sat with a Dr and Michael's nurse that night, the same nurse who'd been there they day he was born, and they went through it all with us.
Michael's IVH's were grade 2 bilateral with some ventricular enlargement - The concern was around the amount of damage being done, by the enlargement and what that meant for his future. (we were always told they were grade 2, but all the info I have come across elsewhere would suggest that actually they were a grade 3)
His PDA, was not re-acting to the medication in the way that they had hoped, which meant that he was still flooding his lungs, and if this remained open he would need surgery. The downside to this however was he was too sick to withstand surgery, or being transported for surgery and the opinion was that he would die either on the way there, during surgery, or on the return journey.
His lungs had been so badly damaged by the ventilator that they were not able to continue venting him for much longer, his blood gasses were such that Michael was starting to poison himself.
They was one option left to try, but at the same time they were looking for permission to withdraw support, as they were not hopeful that Michael was going to survive for much longer.
We discussed this at length, my opinion was then, that if Michael was suffering then I wanted it to end, I did not want him to suffer anymore than he had already. I didn't want them to continue venting him for him to eventually poison himself, the thoughts of him dying slowly and painfully, was more than I could deal with.
As for the bleeds my concern was not only for him but for his brothers too, I did not want him to live a life, trapped within a mind and body that did not work. We always stated that we could cope with a child who had a certain level of disability, but thinking of his siblings I did not want to bring home a child that would have a major impact on their lives. I loved him enough to be able to let him go, to prevent him suffering for the rest of his life.
But we also wanted Michael to be able to make the decision for himself too, it's funny, I remember feeling that although I didn't want him suffering anymore it would be so much easier if he decided that he'd had enough, and slipped away peacefully.
The Dr's wanted to give Michael the opportunity to try C-PAP, which would mean taking him off a ventilator, which does his breathing for him, and put him onto a machine which, although would be blowing oxygen up his nose, the responsibility for breathing was more with Michael.
They also explained to us, that they were not hopeful that Michael would be able to cope with this, and stated that if he didn't he would not be placed back on the ventilator, and requested that we agree to a Do Not Resuscitate Order.
Over the next 48 hours caffeine and steroids would be given to Michael, and he would then be removed from the vent and put onto CPAC, his chance of survival at this point - less than 1%....
The following day Michael seemed to be much better, his pressures had come down as had his 02 requirement, I remember leaving that evening feeling quite positive.
However after a pretty much sleepless night, I would have given anything not to have been having to make that journey the following morning, the journey there was difficult, Martin and I both with our own thoughts, but both of us realising that maybe the first time we would get to hold our son, was as he died.
I was not totally convinced I could actually be with him as he died. I'd seen him a few days before when they changed his vent tube, and as the tube was removed he was terrified, I did not want my last memory of my son to be one of him panicking. I was not sure I would ever be able to sleep again, and that vision of him still haunts me even now almost 7 years later.
When we got to the NICU, our worst fears were confirmed. Michael was back on max pressure in max 02 settings, and he looked awful, every blood vessel was visible through his skin, the night nurses had said that Michael had been in pain during the night, his 02 requirements had gone up over the course of the night.
During a nappy change they had noticed a swelling in his groin area, Michael had developed bi-lateral inguinal hernia's, this is where the intestines break through the muscle. It was not looking good for our son.
I remember asking if they could not put off transferring him to C-PAP, just for 24 hours, to give him chance to settle after developing the hernia's. We were told no his transfer was to happen that day.
We sat in the parents room, I just could not cope with the thought of being there as my son was disconnected from the ventilator, so we sat in the parents room, waiting for a call back onto the unit or for them to appear in the door way, so we could hold Michael as he passed. Time stopped.
We seemed to have been in there forever, when the nurse came to get us.
Michael was holding his own..........
The above picture was taken when we got back into the NICU unit, my first thought on seeing Michael was how glad I was to see him alive, but also that he looked so much better than he had when we left him. He was a better colour and he looked more comfortable laid on his front than he had on his back.
We were certainly a lot happier when we left him that evening than we had been on our way over there in the morning.
Ok, I have to admit, as parents we were pretty ignorant of most of the things that were going on with our son, and I have to confess I struggle with just how ignorant we were..................
It wasn't until the next day when one of our "favourite" nurses was talking to me about how she'd had to peep through the doors on her way in, to see if Michael was still there, because she hadn't expected him to be, that it dawned on me..........
No-one had expected him to survive the transfer and they certainly hadn't expected him to make it through the night.
We had gone home thinking that because he survived the transfer so we were home free!
As I mentioned I still struggle with how uninformed we were about all this, information held regarding our son and his conditions that was never shared with us, it is one of my lasting memories from this whole experience - I have tried to put my feelings about this down, on the following page
http://www.michaelrigaud.co.uk/howdoesitfeel.htm
Sadness
Christmas came and went, and on Boxing Day we got another shock - the 25 weeker that Martin and I had seen on our visit to the NICU unit. The baby we held as our shining light, our inspiration, if he could do it, then so could Michael, died.
We were devastated, not only for him and for his parents, but his death shook our very foundations of security. We will never forget that little boy and the hope and belief that he gave us, in the short time we knew of him.
The New Year
The new millennium - a whole new century, and our son opened his eyes for the first time, we also got to hold him for the first time too.
Michael spent about 3 weeks on CPAP before they started trying him in Nasal Cannula, just for short periods, then increasing his time off. The first time I walked in and his CPAC had gone I almost died. I had got into a routine of having to peek through the doors take a deep breath, and see who was standing around my son's cot before I could walk through the door.
This particular day there was no-one, the incubator was covered by a blanket and the CPAC was gone........I went into a flat spin - my first thought was that he had died while I was on my way over - I was scared witless.
I was met by, "we took him off the C-PAP his SAT's are the same in that as they are in cannula so we're leaving him in cannula" then "Tell Mummy who's a clever boy Michael"
About a week later Michael caught an infection which meant that his SAT's were not so good and he was put back into C-PAP.
Michael did so many of the fairly usual preemie things, but because I didn't keep a journal at the time I don't remember half of them. I do remember the apnea's, the bradycardia, and the desats. I remember him having blood transfusions, I just don't remember how many, I remember the time spent under the Bili lights for his jaundice, I remember the diuretics because my baba had swollen up like a balloon - most of it water, I know that happened frequently, and oh so many other fairly "typical" preemie things. I just can't recall how old he was when they happened.
Michael was fast turning into what most people would think of as a "baby", I guess the stereo-typical image of a baby, it's the only way I can think of to describe the change in him.
The more days went by, the more we started to feel we were home and dry, and that all would be well, that Michael had recovered....
Noises were made about thinking of transferring him back to the Special Care Baby Unit at our local hospital after all he was 8 weeks old now. Because of family commitments, the distance we needed to travel etc, we were not able to spend all day every day at the hospital with Michael. The nurses were starting to think that Michael needed more stimulation etc, than they were able to provide.
Michael had his first bath at 8 weeks old, and also started to venture out of his incubator at 9 weeks the nurses found a bouncy chair for him to sit in. He sat on a towel to stop him sliding through the leg holes.
The night before Michael was transferred back to our local hospital it suddenly dawned on me that no-one had mentioned Michael's brain bleeds, (IVH's) again. The Dr's were scanning another child, at the time & I just happened to mention to the nurse that nothing more had been said about Michael's and because they hadn't, did that mean that they were better and all sorted????
The reply blew me away.
"We don't know if Michael will ever walk, so no they aren't better"
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