Sunday, November 21, 2010

Step by Step

In the beginning, I was almost scared to go back and see him because each time I did, something else was wrong.

In the NICU - The towel on my head is try and get the dots for the EEG to stick

Mummy at my bedside


But after a couple of days, things slowly started getting better.  They got his seizures under control, he was able to come off the ventilator and breath on his own, and he was able to start getting milk feeds through a NG tube.  Slowly but surely, things were improving.  They began to wean him off all of the seizure medications and slowly he started waking up (the medications have a sedative effect).  He remained on the EEG to monitor any seizure activity, and he was still on all of the monitors.  I hated it, they'd freak me out.  I couldn't touch him without looking at the screen and seeing what they were doing and worrying about his breathing, or looking at the mysterious waves on the EEG and wondering what they meant.  He was moved out of the NICU and back into the regular Special Care Nursery where he was placed in a humidicrib.  This seemed to be worse to me, because in the NICU he was on an open bed where I could easily kiss him and touch him (and he could be quickly accessed by medical staff in an emergency), and now there was this barrier between us, but they assured us that this was a 'downgrade' and that it would keep things nice and quiet and cosy for him to start getting better.

My downgraded bed in the Special Care Nursery

Having a "feed".  Breast milk via NG tube

 When he was 5 days old, we got a nice surprise.  We went in to see him that morning and he was being moved into an open cot.  The nurses were getting things ready and they said "Here, hold him while we do this".  I nearly cried, it was the first time I'd gotten to hold him since the morning he was born!  He also had his eyes open for the first time since then too!  Later that day,  Rod got to have his first cuddle ever.  

Mummy's first cuddle since the morning I was born
Hello you!  Nice to see you awake!
Daddy's First Cuddle
 This was also the day that he had his MRI.  We went with him and then we anxiously waited for the results.  It was a day or two later before anyone talked to us about it, even though I kept asking the nurses about it.  (Of course, the doctors have to be the one to talk to you about such things, and we seemed to keep timing things badly and miss them)  Finally, they took us off to another room and so I knew that had to be bad.  It was one of the consultants, plus one of the nurses that had been looking after Joshua.  I think she was supposed to be there as some kind of comfort to us.  Then the doctor told us:  "The MRI showed extensive injury to the brain, and we would not expect him to be normal.  Of course there are always miracle babies that have something like this and nothing wrong with them, but we would not expect that for him".  I started crying of course and I said "Well, what does that mean, what do you think is going to be wrong with him?  Will he be physically disabled, just have a bit of a learning disability, what?" And she said "We don't know, there is no way for us to know, all we can do is watch him as he grows and see if he meets all of his milestones.  Right now, he is a newborn baby and all we expect a newborn to do is lay around, it won't be until he should be doing things like smiling, or walking that we will know if he cannot do those things.  The process now is go through everything.  You need to be able to breath on your own or you will die, and he is doing that.  The next thing is that he need to be able to feed.  We know he has a good gag reflex, but we haven't formally assessed his suck/swallow so we will need to do that before he can start feeding orally.  Once he is feeding well then you can take him home but we will be taking things very slowly and we won't rush him."  So that was that....  our precious newborn had a severe brain injury and was not going to be normal.  I went back out to his bed, picked him up and sat down with him and cried my eyes out.  We left the hospital that day to go home and digest the bad news we had been given.

The following day, we went into the Special Care Nursery and in the place his open bed had been was a humidicrib.  My heart sank, had he gotten worse over night?  I walked over to the bed and realised the tiny baby in it was not mine.  A nurse said "Your little boy has been moved to General Nursery!"  This was great news, as they always told us, the closer you get to the door the closer you are to going home, and General Nursery was the last step in that direction.  So we went into the General Nursery and the nurse told me she was hoping he could start on suck feeds today, but she was just waiting for the Doctors to come around and give the OK.  When the doctor came, he put a finger in Joshua's mouth and he began to suck on it.  "Yep, he has got a good suck, give him a try!"  (Gee, I could have told you that!)    So the doctor proceeded to give me a big speech about how I shouldn't expect too much, and not to worry about how much milk he was getting, to just think of it as a nice bonding experience between us and good practice etc.  So I put him to the breast, he latched on and sucked away for 15 mins.  The nurse said "Aren't you a smarty pants!?"  So then they told me that just because he fed well the first time it doesn't mean it is going to go like that the next time and not to be upset if it doesn't.  He did alright though, and we really didn't run into any breast feeding problems, which I know I should be very thankful for.  To begin with, I would breast feed him and then he would receive a top up via the NG tube.  

Little man after he was moved to General Nursery

Having a top up feed via the NG tube
 Things moved pretty quickly now, and soon he was allowed to start demand feeding and then his NG tube was removed completely.  I went in on my own on a Saturday morning, because there were rules that no more than 2 people could be in the nursery per baby including the parents, if people wanted to come and see him, one of us would have to leave so they could come in.  So Rod stayed home this morning and I had a lot of visitors come in. My brothers and girlfriends and my best friend Holly all came up to see him.  When I first arrived that morning, they told me they were considering moving him to the general paeds ward, where I would be able to spend the night with him and work on exclusively breast feeding him.  If he put on weight there, he would be allowed home.  So later that day while Holly and I were sitting there having a chat, the Nurse came and said "3pm, he is going to the kids ward, what are you going to do?"  It was 2pm, so I was like Holy crap!  And I raced home, threw a bag together of things for myself and threw a bag together of things for Joshua, and raced back to the hospital with Rod. We arrived just as they were wheeling him out of the Nursery!  So the kids ward was a bit different.  In a way it was much more relaxed, because you could pretty much take your baby anywhere you wanted, even outside if you wanted to (I didn't, because everyone sits around smoking down there anyway) and they had a family room with a TV that you could go and sit in instead of staying in the room (which was shared with about 5 other babies and their mothers, with no curtains or anything between) And in some ways it was like a third world country.  There was only one toilet and shower right down the end and it wasn't the greatest.  It was a bit hard for me, as I was still experiencing post partum bleeding and the facilities really weren't adequate for changing pads etc.  But I made do and I had decided upon entering the kids ward that I was not leaving unless Joshua was coming with me.  So I stayed there for 2 nights with him, until finally he was discharged on Monday 31st May.  I nearly had a mental breakdown waiting for the doctors to come around that day and say if it was ok for him to go home.  And our room was the very last room on the ward they came to that day.  I was dying with anxiety.  But finally they came, and said we could take him home. I called Rod (who was at work) and he couldn't have gotten there fast enough.  Joshua was 12 days old when he came home, and when I say that now, it doesn't sound like very long at all, but when we were living it, those 12 days seemed like months!

Free at last!  We're going home!

In his car seat for the drive home



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