Lucy

[image]Lucy.jpg

My pregnancy started in a typical way, but I don't think I could ever have expected or been prepared for the journey we were about to experience. I had a positive test, morning (or all day) sickness, exhaustion and lots of excitement. That excitement was mostly shared between my husband and I, as we were waiting until I reached 12 weeks before we started to let everyone know. My grandmother was longing to be a great grandmother and so we wanted to tell her in person that I was expecting. Since we weren't going to be able to see her around 12 weeks, we decided to tell her at 10 weeks. She was very excited and so were we, because we had finally started spreading our exciting news. This day however turned out to be bittersweet.

Just minutes after visiting my grandmother and my aunt and uncle who lived nearby, I suffered a sub-chorionic bleed, which at first (on presenting to the ED) was thought I had miscarried. This early in the pregnancy, we were given no hope of survival and my husband and I were devastated. We could do nothing more now than mourn for our baby and we were sent home with a referral to my local Early Pregnancy Problem Clinic for the following morning. The next morning we went to the clinic, where I was examined and again told that I had most likely miscarried and I was sent for an ultrasound to confirm this. The sonographer placed the receiver on my stomach and my baby appeared on the screen before us. I squeezed my husband's hand so tight and tried to be brave as the sonographer said she was now going to try listening for a heartbeat. I was terrified that all we would hear was the sound of silence. But to everyone's surprise, my baby's heartbeat came through very loud and very strong. The ultrasound showed that I had had a sub chorionic bleed towards the bottom of my uterus and my baby was none the wiser. We were so relieved that our baby was still hanging in there, but things still weren't looking good. So another ultrasound was needed in one week time to check on baby. Until then, lots of rest.

One week later, the ultrasound showed that the volume of the bleed had now increased to 110mls but was thankfully still showing no effects to the baby. The next few days were very unpleasant and extremely scary, as the haemorrhage that had accumulated left my body and I prayed that my baby would stay safely inside. My next ultrasounds showed that the haemorrhage had now dissolved and my doctors were happy to say that we could now treat my pregnancy as normal and everything seemed to be fine. I went back to work and enjoyed my now very obvious baby bump, with a fond new nickname "Lucky". Just as I had started to feel happy and comfortable with my pregnancy, things took another unexpected turn.

One afternoon I had a feeling of getting my period. I was now 17 weeks pregnant and I panicked, but I was very confused to find no bleeding. Instead I saw clear fluid. Once again in the Emergency department we were given bad news. My waters had started leaking and whilst the doctor explained what was happening, they then broke completely. We were told that the baby couldn't survive like this at this early gestation. I would most likely go into labour in the next 48hours and deliver our tiny baby. Shattered with the imminent loss of our child’s life, we headed home exhausted and emotionally drained, to wait for first signs of labour. Already mourning our loss, I was also so scared of what was to come when the labour pains and a forthcoming miscarriage were to start. At first I couldn't get out of bed because I was lost in the emotional pain of losing my baby. A few days past and there were still no signs of labour pains and waiting for everything to start happening was making me an emotional wreck. After 2 weeks had gone by and still no signs of labour, I started receiving 2 ultrasounds a week. My baby was still alive and the heartbeat strong, but the doctors still weren't hopeful. We were told that even if our baby was born at 24 weeks her lungs would have missed out on so much development from lack of fluid that she most likely wouldn't survive. We decided at this point to find out the sex of our baby, so that we could connect strongly with him or her while inside my belly. It was difficult for them to make out, because the baby was so squashed with no fluid around it. But we had another ultrasound 2 days later and they confirmed we had a girl. A small 2cm pocket of fluid was also identified just near our baby's mouth. This small pocket probably saved her life. With each ultrasound showing a strong heartbeat, there was a little bit of hope to cling to. I still couldn't completely let go of the idea that my baby would not survive. So while we waited for labour to start, I stayed on bed rest and drank 3 litres of water a day. To everyone's amazement, by week 20, still no pains AND I had built up my amniotic fluid levels. At this stage, I hadn't leaked any more fluid since they broke. Though it wasn't over yet. We were told that unless she makes it to 24 weeks, she will not survive. So I held onto my optimism and also my waters.

At 3am on my 24 week gestation date I got up for a bathroom visit, only to be overcome with terror and the feeling of my waters breaking again. We rushed to the hospital where they gave me a steroid injection to help quicken the maturity of her lungs and I received another injection the following day. Now we had to play the waiting game again. Another week went by and still no sign of labour, but this time the fluid was leaking constantly. Her heartbeat was checked twice a day and ultrasounds showed no fluid surrounded her and she was sitting in breach position. 3 days later, I wasn't feeling all that well and not taking any chances, we raced to the hospital where and I was found to have an infection. IV antibiotics were given and I was transferred to RHW in Randwick. My baby was monitored for a number of hours and I had started to get some tightening’s. We were visited by one of the Neonatologists, who gave us some information about what we could expect after our baby was born. The outlook was not good at all. When her heart rate started to deteriorate with each tightening, I was whisked off to theatre for an emergency c section. I don't think I have ever been so scared in all my life. I was glad that she had been able to wait until 25weeks and being delivered gave her a chance of survival, but I was also terrified that when she was delivered, she would not survive. Lucy was born at 10.50pm that night at 25 weeks and 3 days, weighing 970grams and 32cms long. Although this seemed to be a great weight for a 25weeker, her entire body was oedematous (full of fluid) due to bruising she sustained in my uterus. Her fragile little body was so bruised that her face was almost entirely purple. We were told that she let out the faintest of cries as she was delivered, then whisked past me to the back of the room, where the Neonatology team placed her onto breathing support. Now that she was here in the world, another journey was about to begin. 

After I had done my stint in recovery I was wheeled into the NICU in my bed to see my new baby girl. The doctor encouraged me to touch her hand through the incubator. They didn't expect her to last through the night. I remember wanting desperately to touch her, but at the same time I was so scared that in doing so I would hurt her. I couldn't believe how tiny she was, her whole hand was the size of my fingertip. Lucy spent the first few days on a high frequency, oscillating ventilator with ridiculously high amounts of oxygen and nitric oxide. She was a very sick little girl, with severe Chronic Lung Disease and a huge arterial patent ductus arteriosis (PDA). Over the next few days, Lucy lost all of the fluid she was retaining and was now just skin and bones. On day 5 she was taken for surgery to close her PDA as she was too sick to have the medicine that some babies have to close a PDA. She was so tiny, so sick and so fragile that a small part of us thought this could be our last moments together. The hours we waited for her to return from theatre were horrendous. I can remember being encouraged to go for walks, get something to eat and try to take our minds of things, but I just couldn't go anywhere. I was so terrified that the next call we got would be devastating news. However she recovered from surgery well, but remained intubated and showered in blue biliruben lights for the next few weeks. Not long after Lucy's surgery, we received more terrible news. During a routine head ultrasound, Lucy was found to have a grade 4 Intraventricular Haemorrhage in the left ventricle of her brain as well as a grade 3 haemorrhage in the right. We were told that there was no way of telling exactly how much damage had been done to the area of her brain tissue. They were however able to tell us that the area of her brain that was damaged, controls the movement on the right side of her body. She could go on to have no problems at all, she could have some minor gross motor problems or she could have major motor movement problems. It was such an unknown area.

On a few occasions we were told that it was our decision to make, if we wanted to turn off Lucy's life support at this stage. These were some of the worst days of our lives as we were faced with issues that would change ours and Lucy's life forever. We always rang the NICU around 3am to check on her when I got up to express. We called one night and she was doing just fine, however at 5am the same morning our phone rang. It was the worst phone call of our lives. Lucy had suffered a huge haemorrhage in her lungs and her condition was deteriorating rapidly. They had stabilised her but didn't expect her to last very long. We just hoped she would hold on until we got there. Hysterically we raced into the hospital and did not leave her side. Over the next few days Lucy surprised everyone with her strength as she started to recover from the bleed, but a lot of damage had been sustained by her lungs. She remained intubated, which was now only causing more damage and without some assistance from steroids, Lucy simply would not progress. So it was decided to give her a dose of steroids to try and help Lucy move onto CPAP which would be much gentler on her lungs before the ventilator caused her further damage. Of course even though this would help her, giving Lucy this particular steroid at such an early gestation came with its own risks, but it was a decision that we had to make. After a few days on the steroids, some huge improvements were made and after 3 weeks of ventilation Lucy made it onto CPAP and was heading in the right direction.

Just when we thought things were looking a little bit brighter, Lucy's head scans were now starting to indicate Hydrocephalus (swelling of the ventricles), to the point where further damage could be done to the brain tissue. So the neurosurgical team from Sydney Children’s Hospital visited her to discuss inserting a Ventricular Peritoneal Shunt. However in true Lucy fashion, the day before scheduled surgery, a routine ultrasound showed a slight decrease in one of the swelling ventricles. So she was promptly reviewed and it was decided that surgery would be postponed. They would monitor her closely, but the bigger and stronger she could get before surgery the better. Around this time, a routine eye check showed that Lucy's retinas were damaged which can sometimes happen with prematurity and the high amounts of oxygen used early on. She was progressively getting worse and if the next test showed a further increase in damage, she would need to have laser surgery on her eyes to correct them. Once again, just when we had prepared for surgery, her eyes started to spontaneously repair. So she skipped having surgery and as of her last follow up with the Ophthalmologist, she has fantastic vision.

It was 3 weeks before we got our first cuddles because Lucy was far too sick up until then, but once we did, she just seemed to blossom. We had longed for the day we could hold her, something most parents get to do the instant their baby is born. After 2 months of CPAP the doctors decided to try her on high flow for a day, but she was struggling a little so went back to CPAP. Little did we know, that she had contracted rotavirus and the effects set her back months and months of progress. She needed more and more oxygen and when she started needing CPAP with 30 assisted breaths per minute, something else needed to be done. After trying diuretics, lasix and inhalers the doctors advised that she wouldn't get off CPAP without some further help from another round of steroids, so another weaning dose was started, which we eventually took her home on. Lucy celebrated her 100 days in level 3 and on CPAP, but eventually made it onto high flow oxygen 2 weeks later and then low flow in quick succession. After 137 days of life in the NICU, we nervously took Lucy home on low flow oxygen.

After 3 months at home, Lucy had an MRI to review the swelling in her ventricles. The swelling was slowly increasing and it was decided that a VP shunt should now be inserted to prevent further damage to her brain. Unfortunately Lucy suffered a rare complication from the shunt surgery which led to her requiring further surgery a few months later. Lucy came off oxygen just a few weeks before her 1st birthday and she just loves the freedom from the tubes. Lucy has just turned 2 and is just over 20 months corrected and whilst some of her development is delayed, she is making positive progress in all areas in her own Lucy way. Given only a 5% chance of survival at birth due to the combination of complications, we feel so blessed that our little girl is here today and we are thankful every day. She has changed our lives forever and made us stop and appreciate all the small and more important things in life. Her beautiful dimply smile could light up the darkest day. She is our "Lucky" Lucy and our very own miracle. Just as I prepared to submit Lucy's story, Lucy has had to go in for emergency surgery to repair her shunt as it had blocked. This will be something we will have to watch for and can happen at any time, as her shunt will be left in for life. Whilst it was a very scary few weeks for Lucy and us, she is now recovering well.

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