Some information

In the last (almost) three years, I have read so much information on Theo's condition, I like to imagine I am expert on the many aspects that it presents.
I have also neglected the blog for a few months now. Obviously having a new baby is one reason, but mainly it is because I felt lost for words for several months.

I am going to start sharing information now, because I think that it could do with being summarised.

So, the start.

July 2008, wednesday 16th. I was having an ordinary 39+ weeks pregnant sort of day. Heavy, hot & tired. Early afternoon, I developed agonising stomach cramps and found myself confined to the toilet for a few hours, feeling as though I was going to pass out.
Eventually symptoms subsided and Colin took me to see the GP who prescribed gaviscon, plenty of fluids and rest. She also gave me the reassurance that my baby would be fine as s/he was protected by the placenta.

So on Monday July 21st, when I delivered Theo, I never even thought to tell the midwives that I had been poorly. In all honesty, we had such a scant amount of attention that day from the midwifery staff, I doubt they would have made any observations anyway. After a few hours, we took our new baby boy home and proceeded to argue over his possible names!

Tuesday July 22nd we took Theo to the GP for his 24 hour check. Our GP examined him and proclaimed him to be fine, in spite of not being able to feel the femoral pulses (where leg meets groin).
Again, we left, oblivious of anything untoward.

Wednesday, thursday & friday were what I would consider normal for having a newborn baby. Days spent resting, trying to get baby to nurse effectively. It was very hot weather and once or twice I wondered if Theo had a fever but it seemed inconceivable to have already caught something, & I know that fever in neonates is quite uncommon. I was also thinking that Theo was quite a nice baby to have as a third. He didn't cry much, if at all, he was very sleepy and didn't take ages to feed, in fact, he didn't feed very much at all.

On Saturday 26th, day 5, the midwife came to do the heel prick test and weigh him. He had lost 8% of his birthweight; I was actually quite upset about this as I felt that breastfeeding was going 'ok' and my other babies hadn't lost any weight after birth so what was I doing wrong? I was again reassured that up to 10% was acceptable in the first 5 days.

By Saturday evening, I was getting quite concerned about Theo. We attended a family gathering and Theo did not wake once all afternoon. I had to go and wake him during the afternoon as he had not fed for about 4 hours. He didn't feed well when I woke him. All afternoon, in spite of the summer heat, everyone had been commenting on his cold little feet. Later on in the evening I tried to feed him some more and had a little more success. I was in a lot of pain from engorgement and expressed a great deal of milk.

Day 6, Sunday 27th July, I was feeling positively unhappy. I called the midwife team on several occasions to ask for help with Theo's feeding and was told to try him in different positions. I explained that I t wasn't how he was latching on, but that he wasn't capable of even trying. I kept on trying though.
At one point in the day, I had laid him in the moses basket upstairs on his tummy, while I went outside to peg out some laundry. I heard him crying through the bedroom window and have never run upstairs so fast; it was the first time I had heard him cry pretty much since birth.

I remember dad and Kath coming to visit and thinking Theo didn't look well, didn't look right. Dad and Sacha got a little excitable and Theo got his head bumped and I flew into a rage. I was feeling so edgy and worried. Theo barely woke or fed for the remainder of the day and during the night I couldn't get him to latch on to my breast at all. I spent the night in a panic, and finally expressed milk to simply pour into his mouth. By 7 a.m. I was distraught and burst into tears at Colin, telling him 'I am so worried about theo'. Famous last words, I think.

We took him to the walk in centre who immediately sent us to the GP. I remember telling him that I thought he was dehydrated because he wasn't feeding well and was very lethargic. I recall Dr Brockhurst examining Theo and looking at me, perplexed. He sent us into the corridor rather than back into the waiting room while he decided what to do. He came out and told us that the team at the children's admissions unit at Leicester Royal Infirmary would be expecting us.

The midwife had been due to come out that morning and so in between dropping Tabitha off with relatives, I called the midwife team to let them know where we were going. The midwife I spoke to was genial and said to call them back 'when he is discharged'. On ending the call, I burst into tears.the idea that my newborn baby would need admitting to hospital. I knew from tv that severe dehydration is treated with IV fluids. How awful I felt knowing he would need this. I had failed him.

Worse still were the outstretched arms of the team on the children's ward. Theo was at the top of the list for attention and within a few minutes he was allocated a cubicle and his cot was surrounded by serious looking registrars. A kind faced dr introduced herself as dr Brockhurst..our laughter at the coincidence of names..our local GP and now her..became clear, as they were husband and wife. She was a wonderful person there, explaining things gently where she could. Within a few short hours, Theo had been taken to the treatment room. I was told not to come in as 'parents generally find the lumbar puncture very distressing'. I was numb, I know at the time I felt that I was just coping very calmly but actually I was in severe shock. I could hear his newborn shrieks and screams from the treatment room and felt my stomach twist. When he was brought back, he was asleep again but had a cannula in his hand and a tube up his nose. I felt sick, but he was started on fluids and perhaps other things but I can't recall.
I can't remember whether Colin was with me or not. I know he was at first and I know he decided to head back home to take care of Tabitha and to call his folks but when and where he left, I can't remember. I guess it must have been when Theo was taken by ambulance to Glenfield hospital, mrs dr Brockhurst came with me & Theo was given an echo by dr leanage. I expressed milk in the feeding room on the children's outpatients clinic at Glenfield, poor Theo in his little space shuttle n a trolly. My milk was poured straight into him. I remember my absolute terror at what was going on. We were sent back to the Royal, as Dr Leanage could find no structural faults with theo's heart. Nobody had actually explained why we were sent for cardiac investigation at this stage, so when I was told he didn't have a co-arctation of the aorta, I was very pleased that he wouldnt need open heart surgery. Looking back, it's as if every time I was told the good news, the bad news was far more relevant. We spent the night at the Royal, I tired to express milk every few hours. It wasn't essential as he was having something like 20ml per hour.
The next morning, we were sent back to Glenfield. He was admitted to ward 30, and many drs surrounded him again. Still no real explanation for me, but Theo had more energy, or more discomfort, I cannot tell, but he was vomiting constantly, gasping for breath and unable to lie still. I remember thinking that it was obvious he was really poorly but it wasn't that bad as he wasn't in intensive care. I know that his oxygen levels were critically low, at 60%, on maximum oxygen through the mask. I was told to carry him through for another echo and I met Dr Duke. It was early afternoon. Dr Duke echoed Theo and while he was laying on the couch, he collapsed. Distinctly, I heard 'this child needs intensive care NOW' and he leaped up, saying, 'I'll go and tell them to prepare'. A few minutes later, the cardiac liaison nurse, Sharon, appeared with a wheel chair. I couldn't understand why. She told me to get in and carry Theo. I understood later that I would have probably collapsed with shock. She pushed us through the back entrance to PICU and a nurse leaned over with outstretched arms 'let me take him, I'm Rekha. It will take about an hour'.

I had NO idea WHAT would take about an hour. The nurse who was with me was rubbish, barely said a word to me and checked her mobile phone regularly. I was shown to the 'comfy room' (which later came to be known to us as 'the bad news room') and Colin was called to inform him of events. Colin arrived and we hugged. We cried.
Presumably when the hour was up we were told we could come and see him. That was the biggest and most horrible shock. Like a waxwork baby, cold to touch, a hundred wires and blood filled tubes coming from every orifice and every blood vessel possible. We sat, we touched, bewildered. We still did not know what was wrong with our baby, but that he was critically ill and near death.