The Special Care Unit
Michael was transferred to the special care unit of our local hospital when he was 10 weeks old. They phoned us from the NICU to say he had left their end & was on his way, we gave the ambulance about 20 minutes before heading off to the local hospital.
I really wanted to be there when he arrived, unfortunately due to parking problems Michael was in the unit before me. I was devastated, this is going to sound really strange, but I felt like I'd missed welcoming him into the world, I wanted to be there when he arrived in his home town. I'd even failed to do that
When I got onto the unit they were still doing hand-over and the nurse that had brought Michael from the NICU was going through his conditions with the nurse in SCBU.
Grade 3 ROP was mentioned --- hang on what??? This has never been mentioned to us??? What is ROP?? More information we weren't aware of..........I was still reeling from the previous nights revelation without more information having been hidden from us.
If I thought NICU was a shock to the system it was nothing compared to the shock Special Care was.
By the end of the first night there I was wanting to bring Michael home, I sat there with Michael beeping away on the SAT's monitor with the Nurse sat behind the desk on the phone, discussing her divorce and her social life.
I was appalled, over the last 10 weeks we had got so used to having more or less 1-1 nursing, where was the care?? Am I really supposed to leave my baby here with you???? In fact when I left Michael that night, by the time I got home I was in such a state, that Martin went back to the hospital, to check and make sure Michael was ok!
In SCBU (Special Care Baby Unit) there are roughly one nurse to 4+ babies, shall we say it was a bit of a shock to the system.
Michael spent over 12 weeks in SCBU and in that time we had more than one run in with the Nursing Staff.
This ranged from feeding him when they knew we were coming in, to leaving him to sleep in his vomit. The response to "well baby was asleep" was "And you sleep in your vomit do you?????
Another pet hate of mine was one nurse in the unit who insisted on calling him "Baby" and me "Mummy" I have a name, he has a name, please use them
The common feeling seemed to be that I needed to talk to someone about how I felt, it was something that they didn't seem to be able to let go. I needed to accept that Michael was better now, and they understood what we'd been through, they'd all worked in NICU's.
Unless you are the parent of a preemie you cannot begin to understand what it is like.
There wasn't anyone on that unit that I would have trusted with how I felt, I was less than impressed when Martin came back one night and told me that they were worried about the way I was handling all this, and that I should be talking to them.
I basically didn't want to talk to them, because as I've already said I don't think there was one member of staff there who I felt really understood what it was like, and that I felt I could turn too and trust..............
During his time in Special Care, Michael was seen as basically a feeder grower, I'd like to say his time through SCBU was basically uneventful. But I'd be lying, it wasn't.
One night whilst we were there feeding Michael, a student Dr came and asked if she could listen to Michael's heart murmur?
We politely pointed out to her that Michael didn't have a heart murmur. To which she replied "this is Michael B isn't it??"
yes!
"Well I was told that he does have a heart murmur and to come listen"
As you can imagine all hell let loose about how come everyone else knew our baby had a heart murmur and that no-one had seen fit to let us know. The following day we received a letter in the post requesting we attend a heart clinic at one of the London hospitals.
So when I got into SCBU with letter in hand I requested to speak one of the Senior Doctors, and made her sit down and go through everything that she knew about my son.............just to make sure that there wasn't anything else we didn't know about.
Michael was referred to one of the big teaching hospital's about 20 miles from home, he was referred to see the Eye Consultant regarding the ROP, because the concern was that he was going to need surgery, at the same time he was also referred to have his hernia's surgically corrected, and also for an echo on his heart.
His hernia's had grown in size since they first erupted at 3 weeks of age, they had got so big that they restricted his leg movements, his 'winkle' had disappeared completely and the outline of his bowel was visible through the skin. We were told there was no way we would be allowed to take him home with them, due to the risk of them strangulating. But he did get his photo taken for prosperity and for training!!
He was taken over to the teaching hospital for the day, his eyes checked, the Opthamologist said he wanted to leave his eyes, see him again in a week or so to see how they were doing, and then he would make his decision re laser surgery. Michael was seen by the hernia surgeon and a date set for surgery. His hearing was tested - which he passed with flying colours. He was then returned to our local unit.
He was transferred back to the teaching hospital on his due date, for hernia surgery the following day... he weighed 7.5lbs.
Back on a Vent
We arrived at the University Teaching hospital, and Michael was put into the feeder grower nursery. During the day his 02 requirements went up, his breathing increased, and suddenly we found ourselves back in the level 1 High Dependency Unit, and back on a vent. Michael looked so huge compared to all the tiny babies in there, he just didn't look like he belonged.
Michael was tested for meningitis, and had blood tests taken to rule out various other conditions etc, he spent 2 days back in the HDU, and 24 hours back on a vent.
It was awful, I was beside myself, I couldn't believe that we had come so far & here we were back on a vent. I sat with him until the early hours of the morning before the nurse persuaded me that I should get some sleep and if there were any problems she would come and get me.
I shall be for ever grateful to her for coming to see me before she went home to say that he'd had a good night. She frightened the life out of me, but it was reassuring to know that she cared enough to tell me that he was ok. Apparently the blood results had shown Michael was anaemic, so he was given a blood transfusion and this helped to pick up his SAT's enough for the vent to be removed.
His hernia operation was cancelled! So we were to return to our local unit, and come back in two weeks time to try again!
We returned to the Special Care Unit, with hernia's still in situ.
Due to an emergency admission Michael was returned to our local hospital in the middle of the night, the night before he should have been returned. We received a telephone call letting us know what was happening, and Michael returned at midnight.
After I'd left, Michael had an echo done of his heart, this showed that Michael had an Aortal Septal Defect, and a Pulmonary Stenosis.
Our understanding of this is that Michael had a small hole in his heart between the chambers meaning that the blood was washing back between the chambers, which it should not have done. Michael also has a defect in one of the valves, meaning that it is smaller than it should be.
We were told that the possibility was that both would heal themselves with time, but that they would want to do regular heart echo's. This was explained to us by the Registrar at the local hospital and an apology was sent by the Cardiologist/neonatologist who'd done the scan, he hadn't been able to do the scan until really late and so hadn't been able to go through the results with us.
However when Michael returned to that hospital 2 weeks later for an eye check, the Consultant sort us out and made sure that he went through it all with us, again apologizing for not having been able to do this with us at the time. My respect for the Staff at this hospital was growing all the time.
When Michael returned to the Teaching Hospital for his hernia operation, we saw the surgeon, the neonatologist and the anaesthetist.
There was a lot of concern that given the condition of Michael's lungs that he would not cope with having both hernia's put back together at the same time. The plan was that they would do one side, leave him half an hour and then do the other side, again leaving him for a while to make sure that the intestines were not compromising his lungs any further.
We were advised that he may end up only having one side done and then coming back again in a couple of weeks time to have the other side done!
There was also concern that re-venting him was not a good idea, again given the condition of his lungs. It was agreed that the best way forward was for Michael to have a spinal - which would numb any feelings of pain, and for him to have an IV sedation, which would put him to sleep, but still allow him to control his own breathing - although should he decide he didn't want to breathe for himself, all the equipment would be there to deal with this.
We were very nervous when the day of the operation arrived. But all went smoothly, and much to our surprise Michael returned with both hernia's fixed!
Although they didn't look much different for quite a while after the operation, because of their size, and all the extra skin he now had, but they did tell us that eventually he will grow into that skin!
Return to SCBU
On our return to the Special Care Unit following the operation, noises were made about going home! Yippee!!
After 20 long weeks we were now on the home straight, the chance to take our baby home and get back to normality!!
At long last I was going to get to be a Mum to my son, and we were getting outta there!
Wow, was that fun, the home straight included having oxygen concentrators fitted into the house, getting scripts from the GP, trying to find a chemist that supplied oxygen cylinders etc, as well as sorting out insurance - house and car, the fire-brigade, the gas & electricity company, filling in DLA forms, learning CPR and spending a night in with Michael on the unit.
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