TTTS Parent Stories: Samuel & Thomas
My husband and I decided to have our children close together so in early February I was relieved to find out I was pregnant due in early October 2001. In our terms this was perfect as it would be just before our very busy time of harvest.
At 13 weeks we went off for an ultrasound and were absolutely stunned to see two moving bodies on the ultrasound screen.
I felt various emotions, elation, panic (Isabella was only just one, and that would mean three kids under two), fear, etc. Dr Phillips felt by the scan that they were identical; he said it was harder to tell as the pregnancy developed, and would have been better diagnosed at around 8 – 9 weeks. We went back to our hometown that night absolutely dazed, and kept the secret just within the family for about a week. I needed time to get my head around this twin thing.
We were first 'diagnosed' at 19 weeks.
It wasn’t actually a diagnosis, more a suggestion that I was showing symptoms of TTTS. Dr Phillips who was doing the ultrasound said that one of our babies had more fluid than the other, and I was carrying same sex babies, and rather 'large' for my size. It might be and it might not be 'Twin Twin Transfusion' .He asked if we had heard of it and I sort of nodded dumbly and my husband Terry said he hadn’t heard of it at all. Yes, I had heard of it and that was it. I knew nothing else. The same day we went to my obstetrician who did his own ultrasound in his office, he said 'I had nothing to worry about' and that everything looked ok and to come back to Perth in the usual 4 weeks.
We live approximately 2 hours from Perth in a small town called Wongan Hills where my husband Terry farms with his father. I had used the same obstetrician for my first-born daughter Isabella and I was sure that if Kah-Lim had felt at all concerned he would have sent me off for further ultrasound. We came back to Wongan Hills and that night I remember putting the words Twin to Twin Transfusion into the search engine of the computer. What I read next had me believing my babies were doomed and that they would die in a matter of weeks.
The next day I rang Kah Lim (who happens to be a gorgeous fellow) and explained that I just couldn't settle here in Wongan Hills and asked if I could get a second opinion. He was more than happy to refer me for another ultrasound and so I booked an ultrasound for 21 weeks with a different sonographer. I had used her with Isabella and felt confident that she would make the correct diagnosis. She didn’t offer me much information at the time of scanning and was nodding, pointing and talking with her offsider and when I asked if I was showing symptoms of TTTS she looked at me and said 'I'll leave that to the ob to explain'. Prior to going to Perth each night after work and whenever I could get time I had searched and researched everything I could about TTTS, I kind of had an idea what was going on and knew she wasn’t telling all that she knew.
In amongst all this turmoil I had managed to track down via many hours on the Internet a dedicated doctor named Jan Dickinson, who works at King Edward Memorial Hospital in Perth, and who is recommended by the TTTS Organization in the USA. I emailed her and she suggested that I once again come back to Perth for an appointment. I remember feeling a tiny bit of relief after receiving her email as it said:
”I am more than happy to meet with you. Twin-twin transfusion syndrome is a very serious condition and requires a high degree of expertise and knowledge in its management to optimise the outcome. Therapy must not be delayed if it is indicated and I would strongly suggest you see me as soon as possible for an assessment of the prognosis and need for therapy (which is not universal, some cases being mild and never requiring intervention)”
I really hoped then that somehow my pregnancy would fit into the ‘mild’ case. Finally at 23 weeks I saw her and I was admitted immediately to hospital for an amnio reduction of 1.2 Litres. It was sheer relief because I had started to feel very uncomfortable by this stage. The fluid levels of each baby came back to almost level and this was the 'beginning' of it all.
Jan recommended that I saw her on a weekly basis at King Edward Memorial Hospital in Perth. At this stage I was working 3 days per week, so things rapidly changed. I worked Tuesday and Wednesday and then after work Wednesday we would pack up and drive to Perth for a Thursday appointment with Jan. In a way it was like a ritual for us and we would come home Thursday night or Friday depending on how we both felt. This was not an easy time as Isabella was only a bit over one and it was difficult traveling for her. Terry’s Mum lived in Perth and she would look after Isabella when we went for the ultrasound. It was a time where she could bond with Isabella and it helped us out immensely.
The people I work for are a wonderful, caring family and there was never any pressure to keep working on the Friday, although the two days a week somehow shifted the focus off TTTS and on to other things. In a round about way the balance was just right for Terry and I. I drank Ensure protein drinks almost immediately after I had been in touch with the TTTS Organisation in the USA and I feel sure this is one of the reasons the boys grew so well, even with the TTTS. During this time Jan had planned an overseas holiday and a very capable young Doctor called Greg Duncan took over our case. I felt a sense of panic when she told me she was going away as I felt comfortable with her. It turned out I didn’t need any reductions the whole time Jan was away, and in a funny way the TTTS got ‘better’ while she was away, almost like it waited for her to come back, then decided to break loose once she was home.
We went to the 28-week appointment and everything was well, the boys were growing and the discordance not that great about a week in Ultrasound terms if I remember. We had bought cakes for everyone, as it seemed like a good milestone to celebrate when initially we had aimed for 26 weeks. We had found out what we were having as being farmers it was important to Terry to have a boy, he would have loved girls if he had got them but you know it’s just a ‘farmer thing’. It also helped me to feel as though I could bond with my boys. We named them and knew that Samuel would be born first as he was head down and Thomas was breach and unlikely to turn. Samuel was Twin 1 and Thomas Twin 2. Samuel was on my left and Thomas on my right side. In a way I felt I sort of knew them and their personalities by their movements. Thomas was passive and gentle; in hindsight this was most likely caused by the lack of fluid and being ‘jammed’ up under my ribs somewhere. Samuel was more aggressive and moved a lot more. We could also see them so well on the Ultrasound that it was almost like a photograph to us and we became very good at instantly recognizing if there were any problems.
We came home after the 28 week scan feeling confident and on the Monday I took Isabella to the local GP in Wongan Hills to have an ear infection checked out. We had been out to football on the Sunday, (I longed to be normal), but I had never felt so uncomfortable in all my life, I was enormous and struggling for a breath. Anne (local GP) asked me how I felt and I asked her casually if she could just check out the bad pain I had in my back. I told her I was puffed and that the severe pain had meant I had had little sleep the night before. She put me up on the table and checked for arms, legs etc. She could feel all of Thomas (stuck) and Samuel was just swimming in amnio and she couldn’t feel any body parts of him at all.
I went home and packed and left for Perth I would not come home for several months and when I did it was with my precious babies. Once we arrived in Perth I was immediately admitted to hospital and had an amnio drain of approx 2.4 litres and from then on things got progressively worse. They were draining every second or third day ranging from 2 to 2.5 litres depending on my comfort level during the procedure. Samuel (recipient) had a very bad habit of kicking or rubbing up against the needle and therefore it always took longer to perform and was quite uncomfortable. Pethadine doesn’t react well with me so I often felt nauseous and faint for the duration of the reduction. I loathed them but knew that my pain was almost certainly helping make my boys bigger and stronger for the outside world.
During this time Terry never missed one of the appointments or drains, in a strange way he was always ‘there’ when I needed him. If he happened to be home in Wongan Hills I always rang and told him how I was feeling and would ask him to come to Perth, as I seemed to know when I would need a reduction. He became involved with the amnio reduction usually by helping get the hospital trolley in and out of the room or helping the orderly get me back up to my room after it had been done. KEMH like most hospitals is lacking in funds and so all help was gratefully received. I think it was his way of doing something for me, as I know it saddened him to see me personally going through what I was.
My Mum had turned 60 on the 1st of August and I remember getting a bit down that day, I have an extremely close relationship with both my parents and bed rest wasn’t all that appealing to me. I managed to while away the hours of each day, with the help of a steady stream of visitors somehow the days passed.
The reductions went on until I was about 31 weeks and by then Samuel had started to deteriorate. He had begun to retain fluid, which looked like little white dots in his liver and kidneys, and Tom’s bladder the smallest I had seen it the whole pregnancy.
On the Friday they made a decision that the boys would be born on the following Tuesday, the 7th August.
The 4 days seemed like they would take forever to come around. I had 'had enough' by then, I was low, very fat, and very uncomfortable, the last reduction was a nightmare and it had really hurt. They had only just managed about a litre of fluid, which I remember thinking wouldn’t get me to the Tuesday in comfort. The plan was to have another reduction Monday if needed and then deliver on the Tuesday at 31 weeks 3 days. A friend visited on the Sunday, and after he left I cried for a long, long time. The night nurse noticed I was down and gave me a sleeping tablet and a good back rub. Since 28 weeks the severe pain in my back had not left me for longer than 12 hours or so after a reduction and then the fluid would build up and the pain come back. This was the first good nights sleep I had had in weeks and Terry and I had planned to do the ‘fat photo’ shots on the Monday or Tuesday before the boys were born. I remember I felt excited about meeting my ‘little fellas’ and couldn’t wait for it to be ‘all over’ and then get on with fattening them up and getting them home.
In the early hours of the morning of the 6th August 2001 I woke with what seemed like labour pains. I layed there for a while and timed them and they were about 10 minutes apart. I called the nurse and she phoned Jan. They wanted to stop the labour as they were all geared for the next day but that was not to be. I was well established and there was to be no stopping them. I had had steroid shots when I first came down from Wongan Hills 2 week’s prior so the boy’s lungs were developed. I called Terry at his Mum’s house from the labour ward about six o’clock in the morning and told him to come to the hospital ASAP.
The theatre was a very busy place and there seemed so many people in the room. I had an epidural and Samuel Borgia Clune (Borgia is a Clune family name) was born at 10.25 am on Monday 6th August 2001 he weighed 2160 grams or 4lbs. 13 oz in the old scale. Thomas Selby Clune (Selby is a family name on my side) arrived one minute later and he was 1600 grams or 3lb 8 oz.
I remember Jan saying ‘classic stuck twin’ as she whipped Thomas out, and I only saw them for a very short moment before they were taken to NICU; they were beautiful but very tiny. Terry went with them at this point, he is a little fuzzy on the details but I do know he didn’t stay with me, and I saw him a few hours later back up in the ward. Samuel was bright red and Thomas was very pale and anemic looking. It was a special day because they share their birthday with my sister who died when she was two. My Mum and Dad felt God blessed us that day. The doctors gave us a good prognosis and we felt confident then that the road would be hard but we should get to take both our babies home.
It was some time before I saw them again, as a consequence of the reductions often comes haemoraging during birth. I had bled quite bad during the C Section and needed time to recover. At the time I felt down as many people had seen and touched ‘my’ babies before me and I remember the night after they were born the night nurse asked me if there was anything I needed, I nodded and said ‘to see my babies’. She arranged to have digital photos taken and about 3 am in the morning a couple of beautiful photos arrived for me to look at. It helped me to be more at ease. I finally got to see them longer and touch them about 24 hours after they were born. I held Samuel for the first time and he screamed, it was beautiful as it put me at ease to hear a good hearty cry!! Thomas on the other hand was in another part of NICU and a little sicker than Samuel. I never held him in my arms for at least another 3 days.
Samuel was very red and needed a lot of time under lights and Thomas was just tinier and more fragile.
He needed help with his breathing and was on CPAP. The first week or so was such a blur that details are a bit sketchy. I remember that Thomas never lost a gram of weight from the day he was born. We aimed for 20 – 30 grams a day but he often put on more, Samuel on the other hand needed to get his ‘thick’ blood sorted out and so he did lose a little in the beginning but not so much that it caused concern.
When they are so tiny it is hard to do much for them apart from stroke them and sit with them, whisper all words you want your newborn to hear, but there were no nappies to change or hours where you could sit with them in your arms and look at this beautiful child you had created.
I decided very early in the piece that the very best thing I could give them was my milk. So I set myself a task, I set the alarm clock four hourly and expressed milk like I have never done and never likely to do again in my life!! I desperately didn't want them to have BMS (also known as Breast Milk Substitute!!) and I remember still being on the ward and delivering my milk to the Milk room for freezing and hating to see any other Mum with more milk than me!! It was just the focus I needed to have to get me through those stressful early weeks.
I found it hard to stay in NICU for longer than 20 or so minutes at a time. It was at times depressing to see others who had tinier babies than me, it was also very hot in there and made me feel like I was going to faint. Once the boys moved to Special Care Nursery Two things were more ‘normal’ and I tended to spend a lot longer with them. I spent a lot of time recovering and getting myself into good shape for when I would go home. It took until the boys were about 36 weeks to get their sucking reflex but when they were being fed through the tube we encouraged them to suck a dummy so they thought sucking made milk. I also allowed them to have a bottle when they started to get their suck reflex. So after being solely GNT fed they progressed to two tubes one suck, which meant in a nine-hour period they were fed twice by the tube then had a bottle to suck if they could cope. This was a roller coaster ride because at that stage they still hadn't learnt to control their body temp and so time out of the isolette was limited. I remember distinctly the day I first put Samuel to the breast he latched on to it like a shark; it was a precious time for us all and our first real step towards home.
Once the boys were strong enough we transferred to Glengarry, this is an outer hospital in Perth where I had initially planned to have them. I remember the day we transferred there, I rang the Director of Nursing and fired her 101 questions. I had become accustomed to the routine and clinical nature of KEMH and was scared to death of them going backwards out there, and not being able to return to the safe haven of KEMH. The boys were still tube fed at that stage and slowly we progressed to breast feeds. This is a hard time because if you try to rush them they go backwards and let you know 'don't hurry me along Mummy’ It was around the time of my 30th birthday early Sept and I wanted to go home by then. A special friend organized a surprise 30thbirthday for me, and it was wonderful to see 50 or so good friends from Wongan Hills all at once. I did however set free those emotions of needing and wanting desperately to go home. I decided to room in with them for the last week in Perth as I felt TTTS had stolen that precious time from me that you get and love with your newborn. It was a weird feeling and I have never felt such elation as the day we left Perth for Wongan Hills.
A highlight was actually doing a grocery shop. We were walking the aisles and my face was beaming, shopping had never felt so good in all my life!! I hadn’t had to think about all that in months and now I was actually going home as a mother of three. The drive from Perth to Wongan Hills was beautiful, when I had left home the crops were small and now they were tall, lush and healthy. The noise of the gravel road was almost music to my ears. I had beaten TTTS. Mum and a good friend had moved our daughter Isabella to her new room and set up the 2 cots in the nursery for me. I was thankful for it but remember with it came a tinge of sadness because this was another thing TTTS had cheated me of and I knew that I would never be bring another baby home from hospital again.
The first few months were sleep, feed, change nappy routine with little or no break. The boys were excellent feeders but puked up almost everything they drank. As a consequence the workload was enormous and my Mum practically lived with us for the first few months. It was hard with such a little toddler like Isabella and plus it was coming on to our harvest and Terry couldn't be a lot of help even if he wanted to be. We coped and got through and you know we are better people for experiencing this.
Not only am I better for it; I feel our marriage was 'tested' if you like and survived with flying colours. We have a mutual respect for each other, because for both of us it was a very trying time. We found an inner strength that perhaps we never knew we had, a real faith in God, and it brought our already close families even more together.
My continual hope is that the TTTS nightmare we have lived and survived will be a thing of the past, and no family will endure its pain again. For us the outcome was the best it could be, and today as I write this we are approaching their 1st birthday, they appear to be developing perfectly and we treasure them dearly.
At 13 weeks we went off for an ultrasound and were absolutely stunned to see two moving bodies on the ultrasound screen.
I felt various emotions, elation, panic (Isabella was only just one, and that would mean three kids under two), fear, etc. Dr Phillips felt by the scan that they were identical; he said it was harder to tell as the pregnancy developed, and would have been better diagnosed at around 8 – 9 weeks. We went back to our hometown that night absolutely dazed, and kept the secret just within the family for about a week. I needed time to get my head around this twin thing.
We were first 'diagnosed' at 19 weeks.
It wasn’t actually a diagnosis, more a suggestion that I was showing symptoms of TTTS. Dr Phillips who was doing the ultrasound said that one of our babies had more fluid than the other, and I was carrying same sex babies, and rather 'large' for my size. It might be and it might not be 'Twin Twin Transfusion' .He asked if we had heard of it and I sort of nodded dumbly and my husband Terry said he hadn’t heard of it at all. Yes, I had heard of it and that was it. I knew nothing else. The same day we went to my obstetrician who did his own ultrasound in his office, he said 'I had nothing to worry about' and that everything looked ok and to come back to Perth in the usual 4 weeks.
We live approximately 2 hours from Perth in a small town called Wongan Hills where my husband Terry farms with his father. I had used the same obstetrician for my first-born daughter Isabella and I was sure that if Kah-Lim had felt at all concerned he would have sent me off for further ultrasound. We came back to Wongan Hills and that night I remember putting the words Twin to Twin Transfusion into the search engine of the computer. What I read next had me believing my babies were doomed and that they would die in a matter of weeks.
The next day I rang Kah Lim (who happens to be a gorgeous fellow) and explained that I just couldn't settle here in Wongan Hills and asked if I could get a second opinion. He was more than happy to refer me for another ultrasound and so I booked an ultrasound for 21 weeks with a different sonographer. I had used her with Isabella and felt confident that she would make the correct diagnosis. She didn’t offer me much information at the time of scanning and was nodding, pointing and talking with her offsider and when I asked if I was showing symptoms of TTTS she looked at me and said 'I'll leave that to the ob to explain'. Prior to going to Perth each night after work and whenever I could get time I had searched and researched everything I could about TTTS, I kind of had an idea what was going on and knew she wasn’t telling all that she knew.
In amongst all this turmoil I had managed to track down via many hours on the Internet a dedicated doctor named Jan Dickinson, who works at King Edward Memorial Hospital in Perth, and who is recommended by the TTTS Organization in the USA. I emailed her and she suggested that I once again come back to Perth for an appointment. I remember feeling a tiny bit of relief after receiving her email as it said:
”I am more than happy to meet with you. Twin-twin transfusion syndrome is a very serious condition and requires a high degree of expertise and knowledge in its management to optimise the outcome. Therapy must not be delayed if it is indicated and I would strongly suggest you see me as soon as possible for an assessment of the prognosis and need for therapy (which is not universal, some cases being mild and never requiring intervention)”
I really hoped then that somehow my pregnancy would fit into the ‘mild’ case. Finally at 23 weeks I saw her and I was admitted immediately to hospital for an amnio reduction of 1.2 Litres. It was sheer relief because I had started to feel very uncomfortable by this stage. The fluid levels of each baby came back to almost level and this was the 'beginning' of it all.
Jan recommended that I saw her on a weekly basis at King Edward Memorial Hospital in Perth. At this stage I was working 3 days per week, so things rapidly changed. I worked Tuesday and Wednesday and then after work Wednesday we would pack up and drive to Perth for a Thursday appointment with Jan. In a way it was like a ritual for us and we would come home Thursday night or Friday depending on how we both felt. This was not an easy time as Isabella was only a bit over one and it was difficult traveling for her. Terry’s Mum lived in Perth and she would look after Isabella when we went for the ultrasound. It was a time where she could bond with Isabella and it helped us out immensely.
The people I work for are a wonderful, caring family and there was never any pressure to keep working on the Friday, although the two days a week somehow shifted the focus off TTTS and on to other things. In a round about way the balance was just right for Terry and I. I drank Ensure protein drinks almost immediately after I had been in touch with the TTTS Organisation in the USA and I feel sure this is one of the reasons the boys grew so well, even with the TTTS. During this time Jan had planned an overseas holiday and a very capable young Doctor called Greg Duncan took over our case. I felt a sense of panic when she told me she was going away as I felt comfortable with her. It turned out I didn’t need any reductions the whole time Jan was away, and in a funny way the TTTS got ‘better’ while she was away, almost like it waited for her to come back, then decided to break loose once she was home.
We went to the 28-week appointment and everything was well, the boys were growing and the discordance not that great about a week in Ultrasound terms if I remember. We had bought cakes for everyone, as it seemed like a good milestone to celebrate when initially we had aimed for 26 weeks. We had found out what we were having as being farmers it was important to Terry to have a boy, he would have loved girls if he had got them but you know it’s just a ‘farmer thing’. It also helped me to feel as though I could bond with my boys. We named them and knew that Samuel would be born first as he was head down and Thomas was breach and unlikely to turn. Samuel was Twin 1 and Thomas Twin 2. Samuel was on my left and Thomas on my right side. In a way I felt I sort of knew them and their personalities by their movements. Thomas was passive and gentle; in hindsight this was most likely caused by the lack of fluid and being ‘jammed’ up under my ribs somewhere. Samuel was more aggressive and moved a lot more. We could also see them so well on the Ultrasound that it was almost like a photograph to us and we became very good at instantly recognizing if there were any problems.
We came home after the 28 week scan feeling confident and on the Monday I took Isabella to the local GP in Wongan Hills to have an ear infection checked out. We had been out to football on the Sunday, (I longed to be normal), but I had never felt so uncomfortable in all my life, I was enormous and struggling for a breath. Anne (local GP) asked me how I felt and I asked her casually if she could just check out the bad pain I had in my back. I told her I was puffed and that the severe pain had meant I had had little sleep the night before. She put me up on the table and checked for arms, legs etc. She could feel all of Thomas (stuck) and Samuel was just swimming in amnio and she couldn’t feel any body parts of him at all.
I went home and packed and left for Perth I would not come home for several months and when I did it was with my precious babies. Once we arrived in Perth I was immediately admitted to hospital and had an amnio drain of approx 2.4 litres and from then on things got progressively worse. They were draining every second or third day ranging from 2 to 2.5 litres depending on my comfort level during the procedure. Samuel (recipient) had a very bad habit of kicking or rubbing up against the needle and therefore it always took longer to perform and was quite uncomfortable. Pethadine doesn’t react well with me so I often felt nauseous and faint for the duration of the reduction. I loathed them but knew that my pain was almost certainly helping make my boys bigger and stronger for the outside world.
During this time Terry never missed one of the appointments or drains, in a strange way he was always ‘there’ when I needed him. If he happened to be home in Wongan Hills I always rang and told him how I was feeling and would ask him to come to Perth, as I seemed to know when I would need a reduction. He became involved with the amnio reduction usually by helping get the hospital trolley in and out of the room or helping the orderly get me back up to my room after it had been done. KEMH like most hospitals is lacking in funds and so all help was gratefully received. I think it was his way of doing something for me, as I know it saddened him to see me personally going through what I was.
My Mum had turned 60 on the 1st of August and I remember getting a bit down that day, I have an extremely close relationship with both my parents and bed rest wasn’t all that appealing to me. I managed to while away the hours of each day, with the help of a steady stream of visitors somehow the days passed.
The reductions went on until I was about 31 weeks and by then Samuel had started to deteriorate. He had begun to retain fluid, which looked like little white dots in his liver and kidneys, and Tom’s bladder the smallest I had seen it the whole pregnancy.
On the Friday they made a decision that the boys would be born on the following Tuesday, the 7th August.
The 4 days seemed like they would take forever to come around. I had 'had enough' by then, I was low, very fat, and very uncomfortable, the last reduction was a nightmare and it had really hurt. They had only just managed about a litre of fluid, which I remember thinking wouldn’t get me to the Tuesday in comfort. The plan was to have another reduction Monday if needed and then deliver on the Tuesday at 31 weeks 3 days. A friend visited on the Sunday, and after he left I cried for a long, long time. The night nurse noticed I was down and gave me a sleeping tablet and a good back rub. Since 28 weeks the severe pain in my back had not left me for longer than 12 hours or so after a reduction and then the fluid would build up and the pain come back. This was the first good nights sleep I had had in weeks and Terry and I had planned to do the ‘fat photo’ shots on the Monday or Tuesday before the boys were born. I remember I felt excited about meeting my ‘little fellas’ and couldn’t wait for it to be ‘all over’ and then get on with fattening them up and getting them home.
In the early hours of the morning of the 6th August 2001 I woke with what seemed like labour pains. I layed there for a while and timed them and they were about 10 minutes apart. I called the nurse and she phoned Jan. They wanted to stop the labour as they were all geared for the next day but that was not to be. I was well established and there was to be no stopping them. I had had steroid shots when I first came down from Wongan Hills 2 week’s prior so the boy’s lungs were developed. I called Terry at his Mum’s house from the labour ward about six o’clock in the morning and told him to come to the hospital ASAP.
The theatre was a very busy place and there seemed so many people in the room. I had an epidural and Samuel Borgia Clune (Borgia is a Clune family name) was born at 10.25 am on Monday 6th August 2001 he weighed 2160 grams or 4lbs. 13 oz in the old scale. Thomas Selby Clune (Selby is a family name on my side) arrived one minute later and he was 1600 grams or 3lb 8 oz.
I remember Jan saying ‘classic stuck twin’ as she whipped Thomas out, and I only saw them for a very short moment before they were taken to NICU; they were beautiful but very tiny. Terry went with them at this point, he is a little fuzzy on the details but I do know he didn’t stay with me, and I saw him a few hours later back up in the ward. Samuel was bright red and Thomas was very pale and anemic looking. It was a special day because they share their birthday with my sister who died when she was two. My Mum and Dad felt God blessed us that day. The doctors gave us a good prognosis and we felt confident then that the road would be hard but we should get to take both our babies home.
It was some time before I saw them again, as a consequence of the reductions often comes haemoraging during birth. I had bled quite bad during the C Section and needed time to recover. At the time I felt down as many people had seen and touched ‘my’ babies before me and I remember the night after they were born the night nurse asked me if there was anything I needed, I nodded and said ‘to see my babies’. She arranged to have digital photos taken and about 3 am in the morning a couple of beautiful photos arrived for me to look at. It helped me to be more at ease. I finally got to see them longer and touch them about 24 hours after they were born. I held Samuel for the first time and he screamed, it was beautiful as it put me at ease to hear a good hearty cry!! Thomas on the other hand was in another part of NICU and a little sicker than Samuel. I never held him in my arms for at least another 3 days.
Samuel was very red and needed a lot of time under lights and Thomas was just tinier and more fragile.
He needed help with his breathing and was on CPAP. The first week or so was such a blur that details are a bit sketchy. I remember that Thomas never lost a gram of weight from the day he was born. We aimed for 20 – 30 grams a day but he often put on more, Samuel on the other hand needed to get his ‘thick’ blood sorted out and so he did lose a little in the beginning but not so much that it caused concern.
When they are so tiny it is hard to do much for them apart from stroke them and sit with them, whisper all words you want your newborn to hear, but there were no nappies to change or hours where you could sit with them in your arms and look at this beautiful child you had created.
I decided very early in the piece that the very best thing I could give them was my milk. So I set myself a task, I set the alarm clock four hourly and expressed milk like I have never done and never likely to do again in my life!! I desperately didn't want them to have BMS (also known as Breast Milk Substitute!!) and I remember still being on the ward and delivering my milk to the Milk room for freezing and hating to see any other Mum with more milk than me!! It was just the focus I needed to have to get me through those stressful early weeks.
I found it hard to stay in NICU for longer than 20 or so minutes at a time. It was at times depressing to see others who had tinier babies than me, it was also very hot in there and made me feel like I was going to faint. Once the boys moved to Special Care Nursery Two things were more ‘normal’ and I tended to spend a lot longer with them. I spent a lot of time recovering and getting myself into good shape for when I would go home. It took until the boys were about 36 weeks to get their sucking reflex but when they were being fed through the tube we encouraged them to suck a dummy so they thought sucking made milk. I also allowed them to have a bottle when they started to get their suck reflex. So after being solely GNT fed they progressed to two tubes one suck, which meant in a nine-hour period they were fed twice by the tube then had a bottle to suck if they could cope. This was a roller coaster ride because at that stage they still hadn't learnt to control their body temp and so time out of the isolette was limited. I remember distinctly the day I first put Samuel to the breast he latched on to it like a shark; it was a precious time for us all and our first real step towards home.
Once the boys were strong enough we transferred to Glengarry, this is an outer hospital in Perth where I had initially planned to have them. I remember the day we transferred there, I rang the Director of Nursing and fired her 101 questions. I had become accustomed to the routine and clinical nature of KEMH and was scared to death of them going backwards out there, and not being able to return to the safe haven of KEMH. The boys were still tube fed at that stage and slowly we progressed to breast feeds. This is a hard time because if you try to rush them they go backwards and let you know 'don't hurry me along Mummy’ It was around the time of my 30th birthday early Sept and I wanted to go home by then. A special friend organized a surprise 30thbirthday for me, and it was wonderful to see 50 or so good friends from Wongan Hills all at once. I did however set free those emotions of needing and wanting desperately to go home. I decided to room in with them for the last week in Perth as I felt TTTS had stolen that precious time from me that you get and love with your newborn. It was a weird feeling and I have never felt such elation as the day we left Perth for Wongan Hills.
A highlight was actually doing a grocery shop. We were walking the aisles and my face was beaming, shopping had never felt so good in all my life!! I hadn’t had to think about all that in months and now I was actually going home as a mother of three. The drive from Perth to Wongan Hills was beautiful, when I had left home the crops were small and now they were tall, lush and healthy. The noise of the gravel road was almost music to my ears. I had beaten TTTS. Mum and a good friend had moved our daughter Isabella to her new room and set up the 2 cots in the nursery for me. I was thankful for it but remember with it came a tinge of sadness because this was another thing TTTS had cheated me of and I knew that I would never be bring another baby home from hospital again.
The first few months were sleep, feed, change nappy routine with little or no break. The boys were excellent feeders but puked up almost everything they drank. As a consequence the workload was enormous and my Mum practically lived with us for the first few months. It was hard with such a little toddler like Isabella and plus it was coming on to our harvest and Terry couldn't be a lot of help even if he wanted to be. We coped and got through and you know we are better people for experiencing this.
Not only am I better for it; I feel our marriage was 'tested' if you like and survived with flying colours. We have a mutual respect for each other, because for both of us it was a very trying time. We found an inner strength that perhaps we never knew we had, a real faith in God, and it brought our already close families even more together.
My continual hope is that the TTTS nightmare we have lived and survived will be a thing of the past, and no family will endure its pain again. For us the outcome was the best it could be, and today as I write this we are approaching their 1st birthday, they appear to be developing perfectly and we treasure them dearly.
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