So, she came into the world screaming. Her APGAR's were 9 and 9. Everyone was totally surprise and amazed by how well she was. L got to cut the cord. L followed her straight up to the special care nursery while I went into recovery. About 15-20 minutes later L returned to tell me that Holly was fine, in a cot in the nursery and that our family was waiting for us. I got wheeled out of recovery and just on the other side of the doors was our parents and brothers and sisters (except my mum who was on a plane back from her holiday!). I was wheeled up to my room and Luke took people over to meet Holly. The special care nursery is set out into bays. Bay 1 is the 'your doing pretty well' bay and bay 7 is the 'your pretty sick' bay. Holly went straight into Bay 1, she had done so well. I was in my room, overwhelmed by our family hugging and kissing, just so happy she was born, and I was busy texting everyone letting them know she had been born. It wasn't long before out very generous family and friends were sending in flowers and cards and blankets and clothes and anything else a 6 hour old baby might need!
L was bringing back photos for me. I had been told I wasn't able to go and see her until the spinal had worn off and I was able to get myself into a wheel chair. Holly couldn't leave the nursery and the bed I was in wasn't going to fit in! So by 3pm, come hell or high water I was going to get into that chair! I managed to get over there and meet Holly, to give her a proper cuddle for the first time. I got to try to feed her and do 'skin to skin'. She was so beautiful.
It wasn't long before we noticed how sick she was, she was blue, just so blue. We have photos of it, but I don't like to show people. She was just so sick. It was also then thay I noticed her "jitters" as I call them, but they are technically called myoclonus. She was put onto monitors for her heart rate, respiration rate and oxygen level. The nurses explained all the levels to us and we learnt which ones were important and which ones to ignore the alarm. We went back and forth to see her a few times before I had to get some dinner and some sleep. It was just before midnight when my legs went to jelly. I could feel that something was wrong, I knew it. I told L I had to get back to see her. He calmed me down, made me eat and said we'd go in 10 minutes, but I could feel that something was wrong. We eventually got back around to the nursery and I just burst into tears when I saw her. The nurse calmed me down and explained to me that she had collapsed. All her vital signs collapsed, no oxygen, no respiration nothing. They had bought her back up by making her spew and putting oxygen under her nose. She was OK, but she was sick. We calmed down a bit after that, went back to the room and got about an hour or so of sleep between needing to feed her. Morning came and our family was coming and going visiting. L went home to change clothes and have a decent shower, feed the dog and get himself sorted out. My Dad, sister and I were having some lunch and the same feeling overwhelmed me. Something was wrong, I knew something was wrong. We got back over to her and sure enough the docs were standing over her cot. The same thing had happened. The doctors were busy talking among themselves about putting a feeding tube into her. L and I had already had that conversation, we did not want to put a feeding tube in her, we were adamant about that. Again, the doctors had to ask me 3 times, again torture! I just remember having to tell them, no we don't want a feeding tube and looking over to my dad through my tears. Dad came over and put his arm around me, himself quite choked up. These moments in time are just burnt into my brain.
Anyway, from there Holly got put into Bay 3 in the special carer nursery. She had developed jaundice and they wanted to monitor her jitters. The put her in a humidicrub and put a brain monitor on her. Such a little baby. It was so heart breaking, such a helpless little baby just laying there. All you want to do is reach in a cuddle her, just to touch her, to hold her and tell her she isnt alone. The next few days are just blurry. So many emotions, joy, pain, worry, heartache, love, loss, gratitude, fright, longing, guilt, humble, but most of all sad. There was a time where we just asked to not see anyone. L and I needed it. We had spent so long going back and forth to see her and trying to talk to visitors and deal with emotions and look after ourselves and have time to talk to each other, it was all too much. We just had to stop, collect ourselves allow ourselves time to cry and move on.
It here that I do want to mention the staff at Monash. Far out, I cannot tell you how much they helped us, emotionally and physically. Those nurses and midwives are a breed unto themselves. They have such amazing talents and such big hearts to care for people like that day in day out. They always had our best interest at heart and everything from 'milking' me to changing Holly's poo explosion that went half way back up the cord to the machine on the outside of the humidicrib was done with such care.
I got discharged after 5 days and so for the next week L and I made the trek. We got there at 7am and by 7pm I had expressed enough milk to be able to leave her over night. It was awful leaving her there but we just sort of got used to it. I would fret when I was away and be bursting to get back in the morning, but it was good to sleep in our own bed. in this time Holly had her MRI, hearing test, ECG, ECC and genetic testing done. All the results were pooled and we had a meeting at the end of the week with the neonatologist, the social worker and the maternal health nurse (all of whom were fantastic). We were told that Holly was a severe case. She has a little bit of brain growth in the front of her head and a some in the back. She would most likely be able to see and hear but she won't understand what she is seeing or hearing because the rest of her head is just filled with fluid. It was explained to us that she had what they would say is like a stroke. The blood didn't get to her brain and so it stopped growing at about 20-22 weeks gestation. The gross motor movement parts of her brain didn't grow so she won't be able to walk. Its highly unlikely she will talk because talking involves some sort of understanding of what you are hearing and being able to process it and coordinate the movement of your jaw and tongue to make noise that makes sense. We were told her life span will be shortened but not short. Her life was no longer in danger, we could leave the hospital. We were sent to Frankston to link in with the integrated health services such as physio and speech path. We spent two more nights at Franskton before finally being able to bring her home.
What a relief, to be able to bring her home. There were so many times when we thought she wasn't going to come home. We'd come home from the hospital and walk into the nursery and just cry, the pain of the thought that she wasn't going to be coming home, to her cot, to her clothes to her toys, to the teddy we had bought her when I was 6 weeks pregnant. How could you be so in love with something you had known for 2 weeks? How could you be that in love that you already didn't know how you could live without her?
She was home and the learning began.
P.S. The first six months of Holly's life are blogged here - Holly 11/09-07/10 from 07/10 to present is on this sight.