Day Five

E is still on the ventilator and under phototherapy lights. Feeds were ceased for a while and started again later at night through an oral gastric tube.

The doctors suspected an infection as his white blood cell count was dropping and so he has started a course of antibiotics. His notes say he is lethargic.


Day Four - We Start to Eat

Ok, so I realise that these posts are not exactly uplifing and it is very hard to try and instill some humour in what was essentially the worst few days of our lives but hang in with me, because it does get better (and funnier and happier). One day at a time, or when those days are just too hard and long - one minute at a time (to be honest I think we were really coping on the one breath at a time scenario back then).

From E’s hospital notes
“Baby remains active intermittently however does not appear to be in pain/ discomfort”. Who would have ever believed that a mother and father could be so happy to read that their child is not in pain/discomfort? Surely this should be the norm?

E was placed on full phototherapy lights and is sprawled out “basking” in the lights. I am sorry about the photo - I know it is pretty hard to look at but this is our precious baby boy.

Today he commenced feeds – 1 ml every 4 hours. We have been told that feeds may stop if he does not tolerate them and this is not uncommon. 1 ml every 4 hours - that is not a lot of food. I am a Jewish mother and quite frankly I think he should be having 100ml and a bit of chicken soup to boot.


Day Three - Morphine Infusion

E remained on his ventilator. He was very unsettled and was given a morphine infusion to settle him. I pray that he never remembers the trauma of the beginning of his life.

He was started on TPN (Total Parent Nutrition) as he is too little to start eating yet. He still continues to desaturate at cares.

My heart is breaking to watch this child in such distress.


Day Two - Ventilation Required

All we need to do is make it through each day.

We could not touch or hold E as he would lose too much oxygen being handled. He was not at all ready for the outside world. He was extremely small and painfully thin, he had no fat whatsoever, no eyebrows or eyelashes, no toenails and his fingers were so thin that they were almost transparent. In spite of all of this E was simply beautiful.

The urge to touch him and hold him, comfort him and be close to him was overwhelming. The maternal instinct to help him on his journey by letting him be and wanting to hold him close was breaking me apart. The environment was clinical and hostile yet the nursing staff were supportive and wonderful. I sat next to E's "cot" and I read to him, and sang to him and read to him and then I sobbed and cried, and I cried some more and I did everything in my power to resist reaching out and grabbing him and holding him close to me and then I cried some more (and I think the other mothers in the unit stopped crying when I stopped singing).

The fact that I was still on pethadine from the caesarean helped me to face this awful time but my heart was in pieces and my level of fear was astronomical. This little tiny, defenceless baby seemed so much stronger than me.

E was placed on a ventilator today as breathing on his own was becoming too much effort. He also got moved to level 3 care. He seemed to be settled on the ventilator. He was also placed under a single phototherapy light as his jaundice levels were too high. In the beginning of this light treatment we really thought that he enjoyed it as he stretched out and looked to be offering his body to the lights. After a couple of days we realised that this was not the ideal way for him to lie, he needed to feel more contained and ideally would like to be swaddled and in a fetal position. I began to hate the lights.


Day One - The Birth

I had been admitted to hospital with pre-eclampsia for a second time two weeks previously. My blood pressure was high and continuing to rise despite the enormous amounts of medication that I was taking. There was protein in my urine which is an indication that the kidneys are not functioning optimally. All these symptoms were explained to me as signals that the placenta is “not happy”. I stayed at the Prince of Wales Private Hospital for two days and then it was decided that the baby would probably have to be delivered early and as there was no newborn intensive care at the Prince of Wales, I was transferred to the Royal Hospital for Women.

My condition continued to deteriorate. On the night of Friday 9 February I started to experience severe epigastric pain. My blood pressure was still very high and there was a significant amount of protein in my urine. I was told that I would need a steroid shot to help mature the baby's lungs. Yikes. How strong must those drugs administered to my thigh be - they had to get to his lungs??!!

On the morning of 10 February my consulting physician and specialist in medical disorders of pregnancy came to see me on her daily morning rounds. She decided that, based on my condition, the baby would have to be delivered immediately. A theatre was booked for 11:00am, the doctors were notified and we were on our way. Out baby was to be delivered after only 30 weeks gestation.

I phoned my husband at about 8am to tell him we would have the baby that day. To say that we were very frightened is a severe underestimation of the terror that we were feeling. We knew that there was a possibility that he would be born early but this was so quick and we could not believe the enormity of the situation we were now faced with.

We had been on a tour of the Newborn Care Centre the previous day and knew what to expect in terms of where the baby would go and how things operated there but we had no idea of how our own baby would be and what level of care he would require. Let me say at this point that I was not the biggest coper on Planet Earth and I really never believed when I had read the terribly maudlin "What to expect when you are expecting" that this "worst case" scenario would unfold. I believed that these things happened to the sad and depressed woman rocking on the cover - not to me.

I was taken to theatre just before 11:00. Hubby changed into his theatre gowns and despite the fact that he looked pretty cute as a surgeon the whole thing was becoming scarily real. I was really frightened and scared and no dreaming of now being married to a doctor was making me feel any better. The epidural was very unpleasant (no kidding) and I think my level of fear contributed to that in a large way - that and the fact that the doctor said "now don't move" and I decided to jump up in fear . After the epidural was given I was wheeled into theatre. The drape was put up and before long I heard them tell M to stand as the baby was about to come out. It was the strangest feeling, as if someone was digging out the contents of my stomach and instead of just muddling about in my fat they pulled out a little human.

As they took him out I told M that I love him (did I mention that he looked very cute in his surgery garb?) and then he was gone with our baby boy.

E was rushed off to the anteroom where his paediatrician took care of him. His APGAR scores were a brilliant 7 and 9. They wrapped him up in silver foil to insulate him and brought him to see me. My first thought was that he was so perfect – he didn’t even look that small but I could not believe that he was my baby. When they took him away again I was sick - physically, voliently ill. I had survived the birth, my baby was fine and I was relieved. Then began E’s valiant struggle.

Ethan was taken to the Newborn Care Centre where he was admitted to Level 2 breathing by himself with a head box providing him with extra oxygen.


The Reason Behind the Blog

Eight years ago, my beautiful little boy came into this world 10 weeks early. It was a distressing, difficult and emotional time - it was also the last time that he was ever early.

After his birth and during the difficult days that followed a social worker at the hospital suggested that I keep a diary to monitor his progress so that I could see the enormous strides that he was making. Being ever subservient (and scared to put a foot wrong in this scary place that was the neo-natal intensive care unit), I listened to her and started to write every day. Although we were in a place of amazing modern science with machines keeping babies alive and well, my diary was kept on old fashioned paper using a pen that I had stolen from one of the doctors no doubt.

Eight years later I have decided to bring that diary to life and to share our journey. I have also decided not to return the doctor's pen.