Zachary and Elysse Webb entered the world on 2nd March 2003, 14 weeks early, weighing 955 grams and 915 grams.
Our twins were conceived after 4 years of fertility treatment, including 8 operations and 149 injections. Words could not describe the excitement we felt when we heard the words, “you’re pregnant.” Although this excitement soon turned to fear as at the same time we were told I had to be admitted into hospital as I was hyper-stimulating, a rare side effect of the IVF program.
During my 3 weeks in hospital I was given numerous drugs that should not be administered during pregnancy, including kidney medication, for which I had to sign a consent form, as there was a high chance that it would damage the twins’ kidneys. Whilst this was incredibly frightening, I was told I had to take all the medication in order to stay alive, as my own body was beginning to shut down. Due to my condition my stomach started retaining fluid. Over the next 6 days my stomach grew equivalent to someone who was nine months pregnant, when I was only six weeks. As a result 13lts of fluid was drained from my stomach. After this problem was overcome I was told that I should have a healthy pregnancy.
Elysse – 1 week old
Zachary – 3 weeks old
The pregnancy continued to be disastrous; an ultrasound at 8 weeks found a huge blood clot and I was informed that the chances of the pregnancy continuing were very slim. Throughout the pregnancy I spent 3 months in hospital with continued bleeding, had three hemorrhages, all of which I was told I was miscarrying, and then labored from 23 weeks. After numerous amounts of medication to stop the labor, at 26 weeks it was time to have the twins. I was informed that there were no beds available in Melbourne and there was a chance I would be flown to Adelaide by helicopter.
I finally broke down at this point and refused to go. Fortunately a miracle occurred and my labour slowed down for another 48 hours enabling me to have a C – section in Melbourne.
Zachary was born not breathing and was taken away immediately without us seeing him, Elysse was shown to us for a split second before being taken away. My husband was torn into three. Who did he go with? His wife who was scared to death, his son who was in trouble or his daughter who was stable. He stood in the room and could not move. The doc led him towards Elysse as they were still working on Zachary.
Once back in my room I was told that whilst being very fragile, they were both stable (relatively speaking), although Zachary’s lungs were very immature. I felt OK and decided to ring some family and friends. Instead of joy, the news I had given birth to premature twins was met with silence or sympathy. My dreams had been shattered. Most of our dearest friends and family decided to stay away, for reasons that I still do not understand. This was a hurt that words could not explain. Seeing everyone else with visitors and hearing the laughter from the other rooms made me want to scream out that I too had just had babies. On day 4 I was discharged from hospital leaving the twins behind.
We entered a new world called NICU, a language we had never heard before, we felt helpless around our own children. CPAP, ventilation, artificial surfactant, intravenous drips, brain scans, duct open in heart, blood transfusions, low blood pressure, desaturating, what did all this mean? Within the first week of NICU we too started speaking this foreign language. We learnt that every alarm going off was not life threatening, we learnt how to read x-rays, we learnt how to read their medical charts including the results of every heal prick. We started to feel less overwhelmed. It was important for us to also look at the positives; we took lots of photos, we videoed and celebrated every week we had with them. Although we also felt that when family and friends were over positive around us, making comments like ‘they will be fine’ when they had never seen them, only made us feel that they were underestimating the seriousness of the twins condition.
Elysse continued to take very small steps forward. She needed medication to close the duct in her heart and her weight went down to 700grms. Other than these minor hiccups, everything seemed to be going OK. Our first harrowing moment with Elysse came on day 14. I walked into NICU and started washing my hands when a nurse, with whom I had developed a friendship, put her arms around me and said ‘I am so sorry about Elysse’. My heart stopped, I was unaware that there was anything wrong. My feet would not take me to her isolette. I could see several doctors around her. I slowly walked towards her expecting the worst. I was informed that she had blood in her stomach and that she was going to be given antibiotics through an IV. This was not life threatening, just a set back. The nurse later explained that all she meant by her comment was that she was sorry that they were not going to try Elysse off CPAP as was planned for that particular day.
Although being the bigger twin, Zachary seemed to take 1 step forward, 3 steps back. His oxygen requirements seemed to be climbing every day. His ventilator was on max levels and he just did not seem to be getting any stronger. Zachary did not cope with any handling, nappy changes; temp checks etc caused his oxy levels to go up to 100%. On day 10 Zachary developed PIE, tiny holes in the lungs, and was placed on an open table on a vibrating ventilator, as he was deteriorating rapidly. His little body just shook while being connected to this equipment. We thought this was the end for our dear little boy, and we had never even held him. We had seen two babies in beds next to Zac pass away only days after being placed on an open table. The fear we felt was indescribable. Zachary needed heel pricks every hour, his poor little feet turned into very swollen purple balls. After three long days Zachary began to improve, and was placed back in an isolette on intermittent ventilation. Morphine was started to try and relax him so as they could stabilize his oxy levels.
Our first very brief cuddle occurred on day 22. This cuddle also caused him to deteriorate so we were advised not to attempt another hold until his condition improved.
On day 23 we received a phone call at midnight from the doctor advising us to go into the hospital as Zac was not doing well. Over the next three days Zachary developed high levels of CO2 in his lungs, blood in his stools, and continued to deteriorate. Drips were placed in both arms and legs, which took two hours to insert as they could not find his veins, fluid was taken from his spine and scans of his brain and kidneys were ordered. Zachary had developed an infection that could possibly cause long term brain damage. After 4 lots of antibiotics he got over yet another hurdle and started to improve once again.
On day 31 Elysse had her first cuddle with no tubes. We could finally see our little baby girl, her body so small. The next day weighing 1210grms Elysse was taken out of intensive care and moved to another floor ‘Special Care’. At this stage she had been off CPAP and Oxy for 5 days. Elysse did not enjoy the ride up to the 11th floor and was once again placed back on oxy. Elysse continued to put on weight and she quickly joined the 2 kilo club. On day 53 she was taken out of the isolette, given her first bath and the next day had her first bottle. We could now see the road to home with our daughter.
Although we cherished every milestone with Elysse it also reminded us just how sick Zachary was. At this stage he was still on a ventilator, the average time for a 26 week prem was six days, his oxy levels were at 65% and he was still receiving regular blood transfusions. On the night of day 43 we once again received the agonizing phone call and were asked to be by Zac’s side. He started to retain fluid, the rapid weight gain making it harder to breath. Antibiotics were started again as he had developed another infection. It looked as though he had drips in every part of his body.
On day 46 we were asked to meet with the doctors as they had concerns about Zachary’s progress. Zachary’s lungs were not improving and the longer he stayed on a ventilator the less chance he had of coming off it. The decision had to be made as to whether or not to place him on CPAP, even though he was clearly not ready. Did we push him and possibly cause him to deteriorate further? Our paed felt that he was not ready, although the head professor of ICU was of the opinion that this may be our only window of opportunity.
On day 47, my birthday, the decision was made to place him on CPAP. What a beautiful moment, we heard Zac cry for the first time. Although he only lasted for two hours before being placed back on the ventilator, it was a step in the right direction. On day 53, after 4 attempts, Zachary remained off the ventilator. We could now cuddle our baby. During the next 10 days Zachary managed to cope with a lot more handling. He had his first bath and bottle and on day 63 was taken off CPAP. After 67 days in ICU he could finally be with his sister in special care.
40 days after arriving in special care, Elysse finally came off her oxy again, and was able to go home on day 78 at 38 weeks gestation weighing 2728grms. Apart from poor suction Elysse appeared to be in good health. Another split of emotions as we were overwhelmed to be taking home our baby girl, although we felt a great deal of sadness to be leaving Zachary behind. Three weeks later and on day 100 Zachary came home (on oxygen weighing 3736grms). A family at last!!
The twins are now 30 months old. Zachary, now weighing 13.5 kilos, came off oxy after 6 months and apart from chronic lung disease, which has not caused any problems, mild asthma and very slight hearing loss requiring grommets, he is a healthy happy little boy. (Although at eight months of age he did have to wear an orthotics helmet for three months in order to correct the shape of his head).
Elysse, now weighing 11 kilos, has had a few hiccups since being home. She is still a very poor feeder only eating pureed food and has been admitted into hospital on a few occasions to be tube fed. Elysse also has very mild cerebral palsy resulting in delayed motor skills. She rolled at 16 months, never crawled and did not walk until 24 months. Apneas are still a problem after immunizations. Elysse is also long sighted and has just started wearing glasses.
Zachary and Elysse have touched the hearts of so many people. They spent the first three months of life fighting with every bit of strength to stay alive. Since their birth our outlook on life has changed. We now have a clear understanding of what life means. Material things do not make you lucky in life, it is every breath that we take unassisted, and the time that we spend with loved ones, that makes us the luckiest people in the world.
Elysse – 4 years old
Zachary – 4 years old