Well once his blood sugars were on the level and seeing that I was in meltdown they agreed to let Jules come to my bedroom in the parents rest area.
I had been there for a week at this point. When he woke up I was turfed out of the post natal ward but they offered me a room for two nights. I really feel strongly that I was not capable of being on my own. I was in a lot of pain still and struggling to move. My pelvis was very bad after the operation. I felt very bruised down there so I feel that my legs and pelvis had not been supported. I suffered with SPD (Symphysis Pubis Dysfunction)so it
must have been easy to cause me pain what with it being a tad
delicate. I remember the first night laying in this single bed in a room so cold and drafty that the curtains were blowing.I was freezing, I was shaking and I do not feel the cold so bad. I did not know what to do, I could not move as my pelvis had locked and I was in so much pain from the c-section still and had been helping myself into and out of bed using the arms and headrest on the hospital bed when I had been downstairs on the post natal ward but here I was on a bed where there was nothing to grab hold of. I felt totally stuck. I think I cried just about all night.
Roger had to go home and check the kids plus I wanted to know he was getting sleep plus he was bringing in and washing my bits for me and taking food back for the kids etc. I eventually managed to move enough to get my by now big fat swollen feet and legs (thanks to not moving much and being sat in a chair all the time in NICU with the heat etc) by using the weight of my big fat lardy body I had managed to grab hold of the sheet and kind of shuffle myself around.
The morning after the second night I felt like my life was about to fall apart. I could not stand to leave him now he was awake, it felt wrong. I know many people have to leave their baby in NICU but when they are months premature versus full term only in now to establish feeding I feel that it is important that Mum is on hand. I would never have been able to establish breast feeding with the rules as it were and I would not have been able to drive back and forth to see him due to the c section and we felt that Roger was being nagged by now for a date to return to work and worried if I was home and he was at work for 12 hours a day how and when would I get to see Jules?
That morning I had a shower and fell badly, it was so slippery in there and I just remember being on the floor sobbing my heart out trying to figure how I was going to leave Jules. They realised I was in a bad way when I got to see Jules and when the ward matron said about me going home I said well I will leave the room but I am not leaving him, I am going to sleep in the car outside or on the sofa in the parents area. I felt very strongly about leaving him especially at night. I had mentioned before that the day nurses were amazing but the night ones were mainly foreign it seemed to be and one had left him in a dirty nappy for a number of hours that had made him very sore and she did not seem to care. It was heartbreaking for me to find him sore and wet and been left so long that it had dried to him. They checked the notes and confirmed he had not been changed yet I could smell it as soon as I got close to him. Likewise the same nurse was almost causing a fire by putting a tea towel over a spot light on the desk to dull the light...it was smelling burnt and I had to beg her not to put it on there and went and complained to the nurse in charge...my baby boy was right next to it and after this I felt I could not relax and would be up and down all night checking on him. I was getting more and more tired and more and more run down because of this and only felt I could go and get a few hours sleep when Roger was with him during the daytime or one of the daytime nurses I trusted was working.
Anyway they realised that we were both emotionally in a bit of a bad way, we had done this journey primarily very alone and the staff kept expressing shock at us being alone and I think it was one thing that worked somewhat in our favour as they took pity on us and offered us a double room which we then had for a few nights....so it was to this room that Jules was let loose to us.
I remember pushing him through the double doors in his crib and out of the pain NICU into the waiting area and then into the parents area and through the door to the bedroom to shock Roger who had been having a catch up nap. I think he thought I had finally broke and kidnapped him lol.
So there we were....parents alone with our gorgeous boy for the first time. First thing I wanted to do was change him and give him a wash so what was the first thing Jules did...yep he pulled out his nasal tube. Ten minutes after we had left I was back there explaining what he had done and that it was half out and what to do. I do not think they believed me and thought it was me I think but they told me just to take it out so I did :) he was now free of wires except the one monitoring his breathing.
We knew we had to keep an eye on his feeding to make sure his blood sugars stayed up as we knew this was the catalyst for us to escape so I was waking him every 2-3 hours for some milk. I was even setting my phone alarm because if they came in to do a random check and his sugars were low he would be back to the ward. Well we worked really hard because each time they came he was doing really well. 24 hours after I made noises about wanting to go home. I had to get back due to child care for Jennifer and I had just about had enough and had severe cabin fever. I had been going out for the odd short try to buy bits or for a meal but I just wanted and needed my bed, Jules needed his family and the family needed us. They were very unsure and it took all day to get us discharged. The primary delay was waiting for the pharmacy to send up the prescription milk...then the consulant caught wind of our escape attempt. This was the one who had been leading us down the path to switch off life support about 10 days earlier. Jules had already been passed as fit to leave by a doctor but he would not let us go until he had checked him as he did not believe he was ready.
I held my breath the whole time he was examining him but shocked the consultant stood back and said I can not believe how good he is to me it seems he is a normal reacting healthy baby...and he signed us off...we had already packed by this point and were tapping our fingers to go, I think we may have walked anyways. I felt I had proved I could look after him safely and keep his sugars up etc and I wasn't stupid I would have taken him right back, in fact one of the nurses had said this that I had my wits about me and we would be fine!
I guess the only upsetting thing that day had been that he failed the hearing test but I will come to that in another post....