Leading up to……
The Friday before I had been at my mother in laws for dinner and had been sitting on the floor when I noticed that my feet had swollen up to the size of elephants. On to the Sunday morning I woke up with headache so my Mum suggested I go to the GP just to be on the safe side. He said my blood pressure was elevated to 140/90. He said to take it easy and let my obstetrician know in the morning.
Monday 13th August 2007 (29 + 2 weeks)
Monday morning I got up like normal and went to work. I faxed my results from the GP to Dr How and didn’t expect to hear from him. He called me however and said I should come in at 2pm for an emergency visit. At 1.30pm I went to leave work and realized that my feet had swollen again and I couldn’t get my shoes on. So I left work with my shoes under my desk, coffee cup still sitting there and walked to my car with a pair of borrowed thongs! I didn’t realise then that I wouldn’t be back!
When I arrived at Dr Hows office he took my blood pressure again which was still 140/90, he then got me to pee in the cup and tested for protein. Sure enough I had a level 3 protein which is not good. I was a bit unsure of what was happening. He told me to go out to the waiting room for a minute while he called the Royal womens or the Mercy. I was in a bit of a fog so I wasn’t sure why he was doing it! I calledmy husband Tony and told him something was really wrong. Dr How called me back in and said that I needed to go to Werribee Mercy Hospital straight away and I would be admitted pending a bed at a Level 1 hospital as I was only 29 weeks pregnant and Werribee couldn’t take me until 34 weeks. I was a mess driving home and Tony met me there where I packed a bag and we drove down to Werribee. That evening at around 6pm I received my first steroid injection to help develop Melissa’s (yes, we knew we were having a little girl and had already named her) lungs. It was so painful. After that it was just waiting and waiting. By midnight nothing had happened so I told Tony to head home and I would call him in the morning once I knew more thinking that they would not move me in the middle of the night. Boy was I wrong. 1am I was suddenly woken by a nurse telling me that a bed had been made available at the Royal Womens and I was on my way. I quickly called Tony and told him to meet us there as he would not make it back to werribee before I was moved. Into the ambulance I went with a nurse sitting beside me monitoring me the whole time. The funny thing was I felt fine. No headache, no pain nothing. By the time I arrived at the womens my blood pressure had risen to 160/110. I was sent straight to Labour ward and Tony met me in there. I was hooked up to a number of machines and monitors. At least Melissa wasn’t in any distress. I was there for hours! Finally they moved me to a ward. Level 3 at about 5am and I fell straight into the bed with my clothes still on and fell asleep. Poor Tony drove home totally exhausted.
Tuesday 14th August 2007 (29 + 3 weeks)
I sat in hospital all day being monitored. Went down for an ultrasound and they guessed that Melissa weighed about 1kg at that point. We were supposed to have a tour of the neonatal facility but never got around to it as the person supposed to take us was called away. I spent the rest of the day speaking with Angela, a lady across from me who had been on permanent bed rest since 19 weeks pregnant as her waters had broken.
Wednesday 15th August 2007 (29 + 4 weeks)
Again, spent the day being monitored, nothing was changing which was a good thing kind off. My blood pressure was still high and I still had level 3 protein but it didn’t seem to be getting worse. That evening they decided I was allowed to go home as long as I was on complete bed rest and I saw Dr How on Thursday. Tony came back in a picked me up and took me home. The hospital called on the way home letting me know that I had left my pillow and that I would be able to pick it up another time! Famous last words.
Thursday 16th August 2007- Delivery day. (29 + 5 weeks)
Tony went to work this morning. I slept till about 7am and decided I would spend my day on the couch watching daytime tv. I had a backache which I put down to sleeping in my own bed for the first time in a few nights, plus I was pregnant and backache is just part of the job!
My Drs appointment was at 2pm and Tony was finishing work at midday to come home and take me to it. However by 10am my backache was so bad that I couldn’t get rid of it no matter how hard I tried, I couldn’t sit or stand or lay without being in pain and the whole morning I had only managed to eat 2 grapes. I called Dr How and told him I thought something was wrong and could I come in earlier. He said don’t bother just call the Womens and tell them you were discharged last night and something is wrong and you are coming back into emergency. I called Tony and he came straight home. Meanwhile I packed another bag and waited for Tony. He arrived and we hoped into the car for the drive to the Womens. Half way there I started feeling very ill. Wishing I had brought a bucket to vomit into I sat as still as I could so not feel so ill. By the time we arrived at Grattan street near the womens I quickly yelled Tony to pull over and I leaned out of the car and vomited everywhere! Charming.
He dropped me off in the emergency bay at the womens while he went and parked the car while I went to Triage and informed them that Dr how had told me to come back and level 3 should have sent my file down to ED. They ushered my straight through and sat me in a bed where I continued to throw up for the next 3 hours or so every 5 minutes. My stomach hurt so much from the vomiting and as there was nothing in my stomach the bile coming up was burning me . I had developed severe reflux as well and the gavason they had given me had been vomited up straight away. My back was in severe pain I my abdomen around my pregnant belly had started to hurt. I asked a nurse tearfully if I was in labour and she said do I need to push? I said no and she said well you aren’t in labour then.
Finally after hours it felt like I was moved back up to labour ward. Again I was hooked up to machines and monitors and blood was taken constantly . I felt like a pin cushion! My doctor Dr Laura Lee was amazing and kept coming in assuring me that Melissa was ok but that I had developed severe pre ecclampsia. My arms had become bruised from the blood tests and the veins were starting to collapse as they were doing so many tests. I was absolutely freezing as well which was odd. Even with 3 heated blankets on I still couldn’t stop shivering. My memory is a bit hazy from then on as I was in so much pain that I was a bit delirious I think. The doctors came in later and administered Magnesium Sulfate in a very high dose which instantly had effect. I suddenly was very warm from my toes up to my head. The midwife Mary Conway had told me that most people didn’t like it but I was so happy, it was the first time I had been warm in hours. They put me in a gown and put in a catheter.
I remember Tony going downstairs around 7ish looking for something to eat as he had barely eaten all day and found only the giftshop so came back with a bag of clinkers. After that the first thing I remember is the doctor coming in about 10.30pm advising that I had HELLP syndrome (H-Haemolysis EL- Elevated Liver Enzymes LP- Low Platelets) and that I needed to deliver right now. I had never heard of HELLP Syndrome before and as the next thing we knew the sides of the bed had gone up and we were being wheeled to theatre the Dr didn’t really go into to much detail. I was in the waiting area feeling high as a kite from the Magnesium still while they took Tony away to be gowned up. They told me that I would have a spinal and that Melissa would be taken straight away to the NICU. Tony would go with her while I went to recovery. Suddenly within 10 minutes of waiting in theatre that all changed. After my last blood test which had been about 10 minutes previous my Platlet count had dropped below 50mg or something which meant there was a real risk that I would bleed to death on the table. They advised that I would need a general anesthestic now and that Tony would have to wait outside and he was not allowed in when GA was used as it was to distressing on the individual. I was suddenly wheeled into theatre remembering only saying goodbye and love you Tony and talking to the orderly about his frog hat!
After that all I have is heresay. Tony spent a very long 40 minutes pacing up and down outside waiting till he finally went up to the NICU with Melissa and I was wheeled into recovery to wake up. When I woke up I didn’t even remember that I had had a baby. I was so out of it. Melissa was delivered at 11.40pm Thursday Night. She weighed 1040 grams and was 36 cms long. Tony came back to recovery and went with me back to my room on level 4 and waited with me till I came round a bit. He also called everyone and let them know what had happened. This was about 2am. Eventually after checking on melly again he went home and had some sleep after a very long day.
Friday 17th August 2007 (Day 1)
All I remember is the next morning being very sore, very out of it still and hooked up to so many machines. I had drips in my arms and a drip in my neck with a massive bandage around it. I wasn’t able to move and so still had the catheter in. I was told that I was still on the magnesium and they were very worried that I would start to have seizures and so I wasn’t able to do anything. All I had to show that I had had a baby was the pictures Tony and the midwives had taken for me. They were my whole world till I could see my baby. I still wasn’t sure at this point what was actually wrong with me. I knew I’d had the pre ecclampsia but I had never heard of HELLP syndrome before. Dr Lee came in and explained to me that I was very ill and had nearly died. That was huge shock. So to was the arrival of my Dad! He had jumped on a plane the night before and had caught the red eye from perth. When I saw him come in I realized just how dire the situation had been.
That day was so hard, everyone came in to visit me and wanted to see Melissa , but I wouldn’t let anyone go and see Melissa until I had seen her first except Tony of course .
Saturday 18th August 2007 (Day 2)
Finally the midwife came in today and said that my condition had improved enough and that I was able to go see her today!
I still had to wait till the dr saw me, and for Tony to arrive to help me. But finally at about 10am I was wheeled upto the NICU to see Melissa for the first time
It is hard to describe the feeling. I was wheeled into room 10 where there was I think 5 babies at the time and introduced to Linda, Melissa’s first nurse. The worst thing is not knowing what my baby looked like, I had to trust that the baby they were showing me was in fact my Melissa! She was so fragile. I was terrified and didn’t know what to do. I was so teary and stayed only a little while as I was still so sore and shell shocked I think. When I went back to my room Cathy the midwife helped me have a shower and clean myself up a bit. I felt so much better after that. She then helped me to start hand expressing so melly would have milk. Not that she was drinking anything at that point. That became my routine for the next few days.
Sunday 19th August 2007 (Day 3)
I was moved out of high dependency today and down to the ward. This was the hardest part I think because suddenly I had very little help. I was still so sore from the csection, I still had a catheter in and was still trying to hand express. Very hard on your own when you cant really move. Each day I would have my medication, my breakfast and express. Then I would have my shower and go upstairs to level 9 where I would sit with Melissa for a few hours. Then back downstairs for lunch, more medication and more expressing. Finally I called back into labour ward because I had asked Tony to bring in a bunch of flowers for me to give to the nurses who had looked after me so much and when I was up there, Cath asked me how the expressing was going and I told her that it was very hard and that nobody could really help me. She offered to do it for me because she wasn’t busy at the time and her hard work meant that I finally started “spurting” which meant I could use a pump to express finally.
Tuesday 21st August 2007 (Day 5)
I am released today. Very glad to be going home but sad as well that I wont be close to Melissa. It is the hardest thing and feels the most unnatural thing in the world to leave the hospital without your baby. Being on the ward has been horrible because I am in a room with 3 other women who all have their babies. Especially the one next to me, she thinks that when she heard me say my baby is in the nursery that I don’t want to look after her and she is with the nurses. Very frustrating to hear her baby cry when all I want is to be able to hold Melissa and feed her when all I have is a pumping machine and the image of my beautiful girl in a humidity crib.
And so started the routine for the next 51 days.
The day I was released Tony and I went back to the hospital that afternoon only to discover Melissa wasn’t in Room 9. She had graduated to Special Care and we were estatic! We couldn’t believe our 5 day old little girl was doing so well. She was off CPAP and although still in the humidity crib was breathing on her own, we said our goodnights and headed home at 9pm. The joy was short lived as Wednesday morning when I was getting up and ready to go to the hospital, my Dad and I were just about ready to leave when the case manager called me to let me know that Melissa had become very ill during the night She had started with A’s & B’s (which I later found out in apnoea and bradycardia) and had crashed. She was rushed back to NICU were she was very sick and hooked up to many monitors and had been intubated. I remember standing there with the phone in my hand in shock and my Dad yelling whats happened as I had gone so pale that he thought I would collapse. I called Tony and he met us at the hospital. When I walked back into Room 10 it was like a nightmare. I could barely see Melissa for the wires and tubes. She wasn’t moving and she had a huge pad on her arm holding the needles in place with her medication. I don’t know who called Pastoral Care but suddenly they were beside me asking if I wanted to consider having her baptised. That was it for me, I had to leave, I remember running down the hallway to the parents room and bursting into tears. The consultant spoke to me after I had calmed down and told me that they suspected menigitis and that they needed to perform a lumber puncture. So at 6 days old my little girl had that procedure done in room 10 with the curtain drawn around so we couldn’t see. Thankfully it came back negative but they determined she had a Golden staph infection. 5 days of medication later and she had started to come around again. Still intubated and back to only having 1 ml of milk but she was alive and was going to be ok.
Each day I would go to the hospital. For the first week Dad drove me in and took me home and when he went back to Perth , Tony would drop me off at 8am and pick me up at 4pm. Finally after 3 weeks I could drive myself and I was there all day, would go home at 4pm, cook dinner and then Tony and I would go back till 9pm. I would express every 3 hours every day and night to maintain my milk and take it to the hospital each day.
The guilt was terrible especially when she got sick at 5 days old. I used to call the hospital every night at 2am because that was the time she crashed the very day I was sent home from hospital, it was almost like she knew that I wasn’t in hospital anymore. I used to wish every day that I had been able to keep her in longer to give her the best start in life and how guilty I felt at not being able to provide a safe haven for her to grow in. So many things hurt at that time. The fact that I never went into labour, that I never really got to breastfeed her, that I never got to get big and fat with pregnancy and enjoy those last 11 weeks. I built up a tower of resentment for those women who had perfect pregnancies. Eventually after much soul searching I realized that all that mattered was Melissa. It didn’t matter how she came into the world or how she had her milk.
I remember all the milestones in hospital,:
27th August – you joined the 1 kg club after dropping to 935 grams. I remember how excited we were to come in that day to find your little certificate attached to the cot!
8th Sep – Went into an open cot
18th Sep- First Bath
25th Sep- Transferred to Werribee Mercy
29th Sep- Feeding tube removed
6th Oct- HOME
Not everything was smooth sailing though. Even though we attempted many different ways, you wouldn’t breastfeed, you had terrible sticky eye which they constantly kept testing for infection, Jaundice which plagued you for weeks on and off, and ROP (Retinopathy of Prematurity) which developed in your eyes. For weeks after you were finally discharged I had to take you to the SCN at the Womens so Dr James Elder could check her eyes which had developed into 3:3 ROP which means that the blood vessels in her eyes aren’t developing correctly. It happened so quickly to, one check in hospital and she was 0:0 which means that there is no ROP to suddenly 1:1, then 2:1, then 2:2 and finally 3:3 which is borderline surgery. Once the ROP goes to stage 4:4 or stage 5:5 it can cause blindness and permanent damage to the eyes. We watched anxiously waiting to see what would happen as it can correct itself. Every 2 days we were having to go in to check your eyes and it was so painful for you. I could hear your cries as I waited because you were so much bigger by then than the little tiny babies who were still inpatients. I definatley don’t recommend watching the procedure that they do to check the eyes, I only watched it done once and I couldn’t watch it again. Then finally on the 18th Dec we had another check to discover her eyes had gone to 0:0 just like that! 2 days earlier they had still been 3:3. We had to go in again 2 days later to make sure it wasn’t a mistake but sure enough they were all fixed.
We had to have your eyes checked again a year later and everything was perfect. We saw Dr Kevin Dunne, you Paedritian up to 18 months and you were doing great, just little! At 1 you developed a strange movement in your arms when you got excited and after much investigation you have Stereopty, a habiting forming arm movement that you will grow out of and is nothing more serious.
At 18 months old we went to our first Premmie Day morning tea. It was amazing meeting other parents who had been through the same stuggles we had and so we joined the monthly support group. It made such a difference to us because we just didn’t fit into normal mothers group. It was great to see you make friends with the other kids in the group and get to know the other mums.
I look at you now, 3 years old and such a little madam and I am so proud of you. You are so smart, so beautiful and so loving. Such a sweet girl who loves and is loved by so many. I have come to realize that we were given a gift as such because we were given an amazing daughter who made her presence known to her nanna in a dream 2 weeks before your arrival. Your strength is what got us through and I am sure that you knew we would need that assurance during that trying few months. The knowledge that you had told your nanna that you were coming and you would be ok was all that got me through some nights because I was so sure that you would be ok and you were.