Thomas & Alexander Bradley-Miracles born at 24.4 weeks
After 4 years of trying to conceive we turned to IVF to try and realise our dream of becoming parents. We were so lucky when after just one cycle of IVF we received the news that we were finally pregnant. We were elated, I remember coming home from work and doing a pregnancy test just to make sure! At our first scan, we discovered that we would have an instant family, we were having twins. We were in disbelief but excited all the same. Our dream of being parents was finally coming true.
Scans and checkups were all going well, we were booked in to begin Ante – natal classes and had booked into the private hospital near us. We had started to put the nursery furnityre and other bits and pieces on lay-by. Things were going great up until the weekend before Easter 2007. Our lives changed forever.
I woke early on Thursday 5th April 2007, no pain just wet. I was a little embarrassed and thought I had just wet myself… I had heard of having a weak bladder but I didn’t expect it to start this early into my pregnancy. I crept to the bathroom trying not to wake my husband. I soon realised that something much worse was happening & in tears I told my husband something was really wrong with me and our babies.
Scared we phoned our private hospital, they said they could do nothing for us but the midwife called my Ob and he phoned me telling me that I needed to get into hospital ASAP. We headed into our local public hospital and went straight to the maternity unit. My ob visited and it was confirmed that my membranes had ruptured. We actually weren’t too worried; I guess neither of us really understood what was actually happening or how serious our situation was. My OB instructed the staff to give me a steroid injection and explained that this would help the babies if they were to be born. He also instructed the staff to get me to a hospital with a Level 3 nursery.
I was taken to the Mercy for Women in Heidelberg and underwent a few more tests and also an ultrasound. I asked the midwife looking after me when I was allowed home, she simply said I would need to wait for the doctor. The doctor advised me that I would not be leaving hospital until my babies were born. I was shocked, we weren’t due until the end of July & it was only the beginning of April!!!! I was taken to a room and settled in for the night. I was 23.3 weeks pregnant & now very worried.
I spent a week at the Mercy; I had numerous blood tests, CTG’s, ultrasounds and was on strict bed rest. We were advised that I had a very high chance of getting an infection and this would more than likely result in our twins having to be born. We had been told that we had to make it to 24 weeks otherwise they couldn’t do anything to save our babies. That was devastating to hear but we had to accept the reality of what was going on. After another day of contractions and my infection levels raising daily it was decided that at just 24.3 weeks my precious babies had to be born. I was hysterical and terrified. As there were no beds in NICU we were transferred to The Royal Women’s Hospital in Carlton.
After a short discussion with what seemed like 100 medical professionals, it was decided that I would deliver naturally. Never ever in my entire life have I been so terrified. I couldn’t stop crying and was racked with guilt. Why had my body failed? We had been told that babies born at 24 weeks gestation could face a life of disabilities, and they only had about 50% chance of survival, less again for twins and also boys. We told the doctors to do everything they possibly could to save our babies, they agreed. So much was going through my mind. I was vomiting throughout the labour, my body was not coping with what was hapening. When the doctors checked on me around 4am, they advised us that I was fully dilated and its time to deliver. Around 30 people entered the delivery room along with a lot medical equipment. At this point, in tears, I told Dr Karina, that I didn’t want to deliver and they were not ready to be born. She understood, but she said they had to be born, we had no other option.
At 4.15am on Friday 13th April 2007, Thomas Joshua entered the world weighing just 630grams, no screaming just a very tiny fragile little boy. I saw him for a brief moment then he was whisked away. 4.24am, Alexander Stanley entered the world weighing 546grams. Again no sounds and I never got to see him. I had dreamt of what I hoped my delivery would be like and this was not the way it should have been. I never got that first cuddle, the first time I saw my sons, was in a photo the nurses had taken and Josh had brought back to me. I felt relieved that the boys were alive and was running on pure adrenaline; reality of the situation had not hit me. It would be weeks before it would.
After a few hours I was allowed to go up and meet my sons. They were beautiful, and so tiny. I remember saying sorry to them for what they were going through. I think that guilt will stay with me forever. Little did I know at the time, that this would be just the beginning & from this day forward our life was going to be very different.
The boy’s journeys in NICU could not have been more different. We had been told that twins usually follow a similar path…welll our boys had other ideas.
Alexander spend 5 days ventilated before going onto CPAP. He was on CPAP for 9 weeks and then nasal prong high flow oxygen, before coming off oxygen altogether around his due date. He had blood transfusions, brain and heart ultrasounds, suspected NEC, PDA, Pulmonary Stenosis & hernia’s both bilateral inguinal and also umbilical. His umbilical hernia reduced itself and he only required surgery on his bilateral hernia’s 2 days before discharge. The surgeons at RCH were very relaxed and said it was a straight forward procedure and it would all be fine. No comfort for me though, it was awful watching my tiny baby going in for surgery.
We had a few scary moments when Alexander struggled with breathing he would always bounce back very well. After 132 days in NICU/SCN he was discharged on full suck feeds and weighing 3.4kg!! Not bad for a baby that started out at 546grams. It was a bittersweet moment for us, we were so excited that one of our babies was coming home, but it was so hard leaving Thomas in hospital.
Thomas’ journey was scary to say the least. He was ventilated for 65 days, and it was only the use of steroids that helped his lungs become strong enough to be put onto CPAP. I did a happy dance when he was moved out of Room 8 to Room 9. It showed he was doing much better. Thomas did well being on CPAP and was moved to an open cot. We thought things were improving and he would soon catch up to Alexander. Some of the things Thomas went through in his early days in NICU were: a lumbar puncture, 2 urine taps, 4 blood transfusions, heart and brain ultrasounds, bilateral inguinal hernia, developed pulmonary hypertension, PDA, his lungs collapsed several times and he spent about 4 months on CPAP.
At the end of August, Thomas was doing really well; he was now in Special Care and only requiring a whiff of oxygen and doing well with his suck feeds. There was talk of home, it was exciting. It all turned pear shaped, when one morning in early September, Thomas developed Rhino Virus and was taken back to NICU and put back on CPAP, he remained on CPAP for 11 days and it was decided to give him a rest from such feeds. This would result in a massive backward step for all of us.
Thomas was on and off CPAP for a few more weeks, but it was in late October that it became worse. This was the only stage during our journey that I felt like our little boy had given up his fight. Thomas was 6 months old and on CPAP and had been doing well, when one night he struggled and his CPAP was turned up to 10 with 98% oxygen. Things didn’t look great. When I arrived at the hospital that morning with Alex, the consultant told me to call Josh at work and get him to come in as they couldn’t tell me whether Thomas would make it through the day. It was the most heartbreaking phone call I have ever had to make.
Thomas was immediately taken to NICU Room 10 as the doctors had decided to give Thomas a course of Nitric Oxide to help his lungs absorb more oxygen. It worked and Thomas’ oxygen was reduced by nearly half and his CPAP was slowly brought down over the week. It took a few more weeks, before he was well enough to go back onto high flow humidified oxygen, he continued to do well, and was soon just on high flow oxygen and managing some such feeds. I could certainly see the light at the end of the tunnel. However if there was one thing I had learnt, it was that the light could be taken away very fast.
The doctors had started to talk about home around November, but they had told us he would come home on oxygen & possibly NGT feeds. By this time we didn’t care, we wanted him home and we were willing to do everything possible to make it happen. After lengthy discussions, Thomas was transferred to Monash Medical Centre; this was to enable us to link in with their respiratory, cardiology and dietetic services. We were taught about oxygen and also shown how to insert and remove the NGT. I am proud to say I managed to insert the NGT successfully on my first attempt, even the nurse was impressed! After 4 days at Monash, we were finally allowed to take our little man home. It was December 24th2007 – 255 days after he was born & 4 months after his brother had come home. We knew life would be tough, when we first discovered we were having twins, but this was going to test even the strongest person. We had a baby on oxygen and NGT feeds, not to mention 3 medications. It was a juggling act but we did it. Both the boys had so many appointments in 2008, for all different things. I must admit when Thomas and Alexander were born, I thought once we were discharged we would have “normal” babies. How wrong I was. We were lucky to only have one readmission in 2008, Thomas had developed Influenza A and they wanted to monitor him for 24 hours. Thankfully the doctors were happy for him to come home after only 24 hours, but we had been told the cough and sniffles would last around 6 weeks so we were told to limit going out and having visitors. It was a tough winter and one I will never forget.
Alexander did well not to get too sick in 2008, although his feeding and sleeping was going badly and I think I spent at east 6 weeks sleeping on the couch from 1am – 6.30am getting him to sleep in his rocker! Thankfully it got easier.
Thomas came off oxygen in January 2009 and it was also in the time he finally sat unaided! In May 2009 he began to eat solids and therefore we finally removed his NGT. His meds had been reduced down to just one and things were going well.
Alexander was doing well, although struggling with sleeping and gaining weight. He was not putting on enough weight and it as getting concerning, he was started on a new formula to help assist weight gain. He was rolling, crawling and doing very well. He also started to take steps, which was absolutely amazing.
With Thomas off the oxygen and no longer requiring his NGT, I thought everything else would fall into plae and he would catch up.
Fast forward to now 2011, Thomas and Alexander will turn 4 this April and things are still just as hectic and challenging as they were the day the boys were born.
Alexander still struggles to gain weight and at 4 years old, he is stil only 11 kg!! He is on special formula which he still only drinks from a bottle, he only eats pureed vegies ang struggles with new foods and lumpy foods & will often vomit. He has only in the last 6 months developed a wide vocabulary but struggles to comprehend and only speaks in 3 word sentences. He has regular speech and also regular appointments with the dietician. Alex is also sensitive to touching different textures. He is however walking, jumping, singing, dancing, running, climbing and loves to bounce on his trampoline. He is not yet toilet trained & struggles to feed himself with a spoon, but he is improving.
Thomas has never crawled and never will. Although he developed the Thomas “bottom shuffle” which he has mastered and is extremely fast at. He took a very long time to weight bare through his legs. He loves foods, but like Alex he struggles with lumps. Thomas’ pulmonary hypertension has improved which is a massive relief. We see his cardiologist every 6 months, to keep an eye on it. He no longer needs his dietician which is fantastic, nor do we see his respiratory specialist.
Some of things we were not prepared for after having Thomas & Alex were all the issues they face. We were told about 24 weekers having disabilities but we still weren’t fully prepared for it all. Whilst we always knew Thomas had Gross Development delay, I never expected to be told that he had Cerebral Palsy. He is quite how – toned and struggled for a long time to gain trunk control. We were also told in early 2009 that Thomas may never walk. It was heartbreaking and although I held it together talking to the physio, I cried a flood of tears driving home from that appointment. To everyone’s amazement Thomas has started to walk and there is no stopping him, it has taken 2 years of solid work to get him to walk, many physio appointments & many hours at home doing the exercises given to us by his physio. We taught our little boy to walk and we could not be prouder.
Thomas is also delayed in speech, he bangs his head in frustration and struggles to make eye contact with family and friends. These characteristics raised alarm bells for our paediatrician and therefore he was assessed for Autism. He was diagnosed late 2010 with Autism. Yet another challenge for us as a family and also many more tears from me. Although if I was totally honest I already knew he had it. We work very hard with his Occupational Therapist, and Speech Therapist to help him communicate. Alexander will be assessed just before school, but they are confident he will overcome his speech and comprehension delays with more speech therapy. As for feeding, we take it one day at time with his feeding. Though we may take out shares in Red Rooster as both the boys LOVE their hot chips.
This year we face surgery for the boys to have their PDA’s closed, and Thomas will have an MRI late March to determine any brain damage as a result of being oxygen dependant for so long. We will also continue along with all our appointments.
Thomas and Alexander attend childcare or as Alex calls it “school” twice a week for 3 hours, we also do music. These activities have helped the boys in their development as well. They both love it and I now enjoy my time whilst they are at childcare to enjoy that nice hot cuppa and even read a book!
Having extremely premature babies can be challenging & scary at times both in hospital and once home, BUT it is also a very rewarding experience, to see these two little boys, no one expected to live, reach milestones, dance and laugh is truly inspiring. We are so proud to be their parents.
Jenny & Josh