Wednesday, April 26, 2006
Hannah and Kit a couple of months after their second stay in hospital
Kit and Hannah at RHW Randwick
Pregnancy and the first three months with twins
Hannah and Kit are ivf babies. We’d gone through various fertility treatments and this was our 3rd cycle of ivf (& probably our last). My hormones levels were low at my first blood test so they thought it was a single pregnancy but the 7 week ultrasound showed 2 babies – we were very excited!
The nuchal translucency test at 12 weeks showed a very low risk for my age of developmental problems like Down Syndrome. It was twins so there was no blood test taken. At my 20 week scan they noticed an echogenic focus on twin 1’s heart. We were told that this is quite common & not to worry but because they couldn’t get a good look at twin 1 they referred me to a cardiac pediatrician 2 weeks later.
The week before our appointment with the cardiac pediatrician we holidayed in Melbourne. It is the only week where I can recall really enjoying my pregnancy. The early weeks were tense waiting for the so called ‘safe period’ and the later ones filled with concern for the safety of twin 1. Even after I finally got the call that ‘yes’ the blood test was positive and I was pregnant I was told that sometimes a false reading is given (I presume due to the hormones used) and that the scan a little while after would confirm whether I had a viable or ‘real’ pregnancy. But that holiday in Melbourne was wonderful. We stayed in a plush Hotel, walked all around Melbourne, and ate well – finally I felt able to toast our success at dinner one night only to be disappointed when I discovered that champagne gave me heartburn! We caught up with friends who live there and then we drove home via Albury for my sister Debbie’s 40th birthday.
We met with the cardiac pediatrician the week after our holiday in Melbourne. This was to be the first time that the words 'Down Syndrome' were mentioned. The baby had a complete AVSD, or large hole in the heart,and the Dr said that about 50% of the babies he saw with this condition have ds.
I remember feeling numb with shock until the fear set in. My baby – the twin I had been laughing about being so like her Dada (her antics in utero of tapping her head in annoyance at the intrusion of the ultrasound waves) had a serious heart defect – I was terrified. As well as this she may have ds – I didn’t really know much about that condition but I knew – distinctive features, intellectual disability and difference. It took my breath away – how could my precious bundle be anything but perfect? My fears at first were mainly for the heart defect but also not far behind was concern and fear because of the ds. I think I cried for about a week, Phil took up smoking again and I devoured a family block of chocolate when we got home from that doctor’s appointment!
I had wanted to give my babies an ‘easy life’ but already for twin 1 it was going to be hard. I tried to forget it and enjoy what will probably be my only pregnancy but that wasn’t really possible. My husband was very worried he was anxious about my well being and that of the babies – especially twin 1. I had regular scans and it often seemed as if the heart became the focus of pregnancy rather than the babies themselves. I worked overtime up until the end of term 3. It helped to take my mind off it all.
My next scan showed a slow down in twin 1’s growth – my obs told me to go home and rest or end up in hospital so I borrowed a heap of DVDs and took to the lounge – I didn’t really have the energy for much else anyway. Luckily it was the start of the school holidays. Twin 1’s growth was still slow by the end of the holidays so I was admitted to the antenatal ward at Randwick Royal Womens Hospital. I was there for 2 weeks with daily monitor and scans every 2/3 days until emergency/planned Caesar. I had been there about a week when my obs after discussing with the cardiac pediatrician told me that this slow down in growth could be another indicator of ds but he was still hopeful that Twin 1 was alright.
But of course the worry was still there and so very real – becoming more real in fact with each passing day. So I cried some more – the sister in charge of the antenatal ward was wonderful – I just wanted to see what a baby with ds might look like so I could picture mine in case she had ds – the social worker brought me an introductory booklet and with the support of family and friends I had picked out a couple of babies from it who looked cute enough for me to love.
There were a few other horrible times while I was in antenatal – the main one I recall is when a particularly grumpy woman did one of the by this time regular growth scans. She hardly spoke but it was clear that she saw something odd about Twin 1. She called in the doctor – without saying anything to me but ‘don’t move’ and ‘I’ll go get the dr’. My heart was racing. I was desperate for Phil - I knew he would almost be at the hospital - coming after work every day as he did. My friend Kerry was probably there in my room waiting as I had not known about this scan and had told her it would be fine to visit that afternoon. The dr was very nice. He said he wanted a complete scan done on Twin 1 – not an easy thing – Twin 2 gets in the way, Twin 1 hides, my bladder blocks there view – all in all such a scan I knew from experience can be time consuming and exhausting. The grumpy scan woman said that she couldn’t stay to do it – she was tired after a busy day. The dr insisted that he wanted one done. The ‘on call’ person would be called in to do it - by now it was just after 5.30pm. I dared to ask the dr to ring my room and get my husband to come down - my fears were so real I didn't dare put voice to them. Together we waited until the on call person arrived to do the ultrasound.
She breezed in in a calm and energetic manner – I could have hugged her! It was Gabrielle! She had done a number of my earlier scans and I liked her. The relief was awesome but of course I was still afraid of what the scan would reveal. It wasn’t good but it was ok. No need to panic just yet. So about 7 pm I finally returned drained to the room where Kerry and her partner who had come by after work were still waiting. Phil and I sat quietly together a bit like trauma victims must.
Less than a week after that, I returned to my room after one of my customary strolls, to be quizzed about what I had eaten that day. My obs was looking for me - the latest scan had shown a negative growth response for Twin 1. We discussed my options and it was decided to have a caesarian that afternnon - as soon as he could book a theatre. My babies were born in time for the Bold & the Beautiful. I will always remember overwhelming joy & the look of excitement on my husband’s face. Such uninhibited extasy. Both babies were ok but we were worried for Twin 1 in case anything else was wrong – we knew it was possible. We also wanted to know if she had ds. I remember that after the initial excitement my husband kept saying to the head pediatricitan "Is she ok?" and he kept trying to fob him off - no doubt till he could assess her properly. We felt frustration at his hesitancy and the focus on ds.
Phil's first words to me after the birth were "She is beautiful" and then "It doesn't matter", So I knew that when he was asking the drs if she was ok - he meant is there anything else we need to know about this tiny bundle (my husband is a bit of a pessimist that way)? We wanted to know if was there anything else besides her heart and the possibility of ds for us to worry about but the head pediatrician (in hindsight not unreasonably) assumed we meant the ds diagnosis. He and Phil had a few arguments in those early days - he thought we were in denial, we just wanted the opportunity to enjoy our beautiful babies.
Being separated from them was horrible, lying in bed clutching those first photoes, it seemed like a dream then, surreal now. I cried a lot – all those hormones, when I cried it was because they looked so beautiful and yet so fragile. I remember feeling upset that the pediatrician seemed to assume it was always about Hannah's ds. It was as if I was being cheated of even having a normal 'hormonal time' after birth as well as the anxiety I’d had throughout the pregnancy. I was very pleased when one of the nurses in the special care was gentle and kind and when 3 days after their birth I did the cliché visit at 3 am and balled my eyes out she understood that I wasn’t crying about Hannah's ds diagnosis, I was just crying. Tears were my release. They were in special care for three weeks – eventually I had to go home without them – and then spend long days spent visiting them - pushing to get the breasfeeding going so I could bring them home. It felt like we were being watched & our babies were on layby.
They were home for one month prior to Hannah's heart surgery at Westmead Children's Hospital. Having them home was wonderful – we felt in control of our lives again – they finally felt like our children. So the tension and apprehension we felt taking them back to hospital was horrible. We stayed with Kit in the parents’ hostel at Westmead. Hannah's surgery went well – her scar is a work of art, but a day afterwards she started to slip – they think it may have been because one of her ventricles is a bit smaller – anyways she had a number of complications, major organs started packing it in and we thought she was going to die. They used the pacemaker for longer than they had hoped to, she was on a dialysis machine when her kidneys packed it in, they had to drain fluid from her lungs and she contracted a urinary tract infection. On that dark Friday when she was at her sickest the nurse assigned to her did not stop once – she was literally checking tubes and adjusting drug doses and taking blood for testing all day long. Our beautiful tiny wide eyed baby seemed bloated and her eyes were glazed. The ‘Christmas Tree’ as they called the stand with all the drugs on it was full and so they brought in other smaller ones to help sort out all the tubing of medications and glucose whatever going into her. At worst they would ‘line up’ the doses as there was no free tube to put a fresh dose into her until the first drug had already been administered.
I used to feed Kit at about 2 or 3 in the morning and I’d ring ICU to see how Hannah was going then I’d go up to the baby ward near ICU, express for her and visit her on the way back to my room. I learned that I could ring up and all would be fine but less than an hour later when I visited her she could have what seemed like an army of medical staff around her because of some complication. We were always on tenterhooks. She was so sick I still hate to think of how she looked at that time. Even when she was getting better I cried every time I went in and saw her in ICU.
My husband barely left her side (look out for Dr Phil II). My mother came down from Townsville and she looked after Kit in the waiting area most of the day and I went back and forth breast feeding him, expressing for Hannah and visiting Hannah. I remember my excitement when she could start feeding again – 1 ml per hour of fluid could be breast milk. We pushed to be able to bring her home.
Her move to a ward was very stressful because the level of care is nowhere near what we had become used to and it was heading into the Christmas break. The drs weren’t as consultative and we felt a bit sidelined. Finally we were told we could bring her home a couple of days before Christmas.
The night before her release I was in the ward with her and they had set up a cot for Kit in there too so I could breastfeed them together. I was to sleep on a fold out lounge by their cots. Kit had a raging temp – we took him down to emergency and a lumber puncture showed that he had meningitis – he was to be kept in hospital for 3 – 10 days in isolation. So at about 3 in the morning we returned to Hannah’s ward – Phil in one room with her and me in another with Kit. I cried all the next day. I didn’t care who came and went I lay on the narrow bed and wept – I came so close to believing that there was in fact no God. It was a very dark and difficult time. Phil seemed so far away – in another room with Hannah who was in poor condition revcovering from her own surgery – she looked like a baby with an eating disorder and now my beautiful strong chubby Kit was sick and in pain. I don’t know how I stood it.
They treated him as if he had the 2 worse types of meningitis although thank God I don’t think he had them. The pediatrician was wonderful – we discussed his care and were going to take him home Christmas morning all being well – except he had a temp that morning and so we continued his antibiotics and he & I stayed in for an extra 4 days. Hannah had a lot of recovering to do and so we wanted to get her away from the hospital environment – she went home with Phil on boxing day.
I felt so alone especially once Phil had taken Hannah home. Kit was upset and restless and it was literally just him and me – we didn’t get any visitors. Phil came up once a day for the milk I was expressing each night for Hannah. His stepmother and sister minded Hannah at home while he did this. Hannah was still on antibiotics after her heart surgery of course, so he didn't stay long but had to go home to her.
I was very grateful to one of the nurses who found me a pram and suggested I take Kit outside for a walk – I hadn’t been outside of the airconditioned hospital in a week. It felt wonderful – I almost started believing in God again although it would take a bit longer before I was really on speaking terms with the Almighty again.
There is a feeling of elation when you can finally go home – we experienced it when we first brought the twins home and again that day when Phil and Hannah came to get Kit and I from hospital. It must be quite like what it feels like to get out of prison. The freedom. The resumption of living. The fresh air! Home.
We were lucky because Phil had Long Service Leave. I was nervous about him returning to work and coping with the twins on my own but it was quite good. They were still little and manageable. Hannah needed fattening up but otherwise she was doing quite well. She had lost the little tone we’d started to get before surgery so I was worried about that and as soon as the dr said I could start her on tummy time that is what I did. They were almost three months old.