Miracle Month of May – Sarah’s Story

The purpose of Miracle Month of May is to raise awareness and funds for premature and sick newborns, their families and the hospitals that care for them. You can donate to the Miracle Foundation via the Miracle Babies website.

Sarah gave birth to twins at 30 weeks a little over 4 months ago. We are very blessed to have Sarah share her story with Gold Coast Kids.

My Journey by Sarah, mother to Chloe-Anne and Elijah

When I found out I was pregnant with boy/girl twins I could not believe it. My pregnancy was relatively smooth until a routine growth scan at 26 weeks. Babies were growing well and both were measuring slightly ahead of schedule but my daughters membranes had already started to funnel. To make matters worse my daughter was breach and her umbilical cord was presenting. Her cord was covering my cervix and in the event my waters broke it would be a medical emergency to get her out before she died from lack of oxygen.

I was transferred to the Mater Mothers Hospital and placed on bed rest. For the next 4 weeks I was in preterm labour. Labour would start but would not eventuate. Doctors were absolutely amazed that I managed to make it to 30 weeks and 6 days. The morning I gave birth I did not have any painful contractions. Instead I felt a strange tightening that lasted for hours. My Obstetrician examined me and it was confirmed the twins were coming.

I was rushed into theatre and my twins were delivered by an emergency caesarean. Antenatal classes could not have prepared us for what lay ahead. The twins were rushed out of the room and into Neonatal Intensive Care. Both twins weighed 1.6kg and measured 40cm long. My son, Elijah needed to be ventilated after birth and Chloe-Anne was placed on CPAP (Continuous Positive Airway Pressure). Three hours later I was able to be wheeled into the NICU to see my babies and I was met by a Neonatologist. In my drugged state I was given paperwork to read. The doctor talked about medication they may need, the risk of infection and possible blood transfusions. The Doctor left us after saying that they would do everything to help my babies. I was absolutely stunned. I always thought babies born at 30 weeks did really well and did not require oxygen support. Hours later I would realise how wrong I would actually be.

I was then whisked away to the post natal floor. Thankfully I had my own room but I still heard babies crying through the walls. It was an awful experience to know that my children were fighting for life. I then had the joy of learning to express milk. Oh my goodness what an experience. The nurses showed me how to use a pump and I would then pump every 3 hours around the clock.

The next day I had a Physiotherapist visit and talk to me about breastfeeding position after a csection. REALLY? I broke down and told the woman that my children were fighting for life and breastfeeding is the least of my concerns. I could not believe how cold some people could be. I was already devastated that I did not have a full term babies and was struggling to cope.

Chloe-Anne seemed to be the stronger baby. She was not ventilated and would move around her incubator. Yes this child was doing push ups in her incubator when she was just days old. Elijah was different. He needed ventilation and when they finally got him off ventilation he was also placed on CPAP. Elijah would have moments where his heart rate would drop and would have Apnea attacks. Watching your child change colour was terrifying.

By day five both were taken off CPAP and were breathing room air. We were so excited that they were doing so well. This was also the day that I was sent home without my babies. It was at this point that we were given our first cuddle. We were so excited to finally be able to hold our babies. They were so tiny but these babies just cuddled into us and responded so well to being held.

Elijah struggled to put on weight and it became a constant battle. As feeding was Elijah’s only problem he was transferred to Special Care. Here he learnt to feed. Elijah became an absolute champion and he came home 6 weeks after being born. Chloe-Anne however was in for a more difficult ride. Even though she did better to start with one thing we learnt is never trust a premature baby. Chloe-Anne had a setback. I received a phone call in the middle of the night saying that she had been placed on High Flow. Chloe-Anne was having issues maintaining her blood gases and was hyperventilating. Later it was identified that she had two holes in her heart. Both a result of being born premature. The holes were a PDA (Patent Ductus Arteriosus) and an ASD (Atrial Septal Defect). The PDA was forcing blood to fill her lungs. She had wet lungs and was really struggling. Doctors tried to wean Chloe-Anne off High Flow which is simply air being pushed into her lungs but she could not manage. There were days that I could not hold Chloe-Anne. I sat and watched her struggle to breath. I had moments when I thought she would never come home.

Elijah would come with us to visit Chloe-Anne. It was so difficult to parent and bond with a child at home when our energy was focused on our sick child in hospital. My mother became our lifeline and Elijah would spend a lot of time with his grandmother so that we could focus on Chloe-Anne.

Luckily we had a fantastic Paediatrician take over her care and he sought advice from Cardiac Surgeons. A Cardiac Surgeon visited Chloe-Anne and after numerous tests we were told it was in her best interests to have Heart Ligation Surgery. However as she only weighed 2.5kg at this stage and only 8 weeks old there was a chance she would not make it through surgery. Chloe-Anne was in heart failure so there was no real choice. Chloe-Anne needed to have this surgery for her best chance of survival.

Chloe-Anne had surgery 4 days later. Due to her small size it took 3 long hours to get IV access. The Anaesthetist had so much trouble that her lines had to be cut into her groin. It was essential that good IV access was available so that medications could be given after surgery. The surgery was successful and soon we could see our little girl. Chloe-Anne was ventilated due to the serious nature of the operation and was sedated. A consequence of having lines cut into her groin resulted in a blood clot forming in the artery and she would need to have clexane injections for the next 6 weeks which I would give her. Within days Chloe-Anne was off the ventilator and actually breathing on her own. To me this was a miracle. For the first time in her life she was able to breathe well and without trouble. She also started bottle feeding. Chloe-Anne came home a week after surgery.

Having both babies at home is my dream come true. Both babies are monitored very closely by medical and allied health staff. At a cardiologist appointment recently we were told that both babies do have an ASD and that further surgery will most likely be required in the coming years. These babies have been through so much and are so incredibly strong. Although they still look tiny at 4 months old they have proven that they are capable of doing everything that a full term baby can do.

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