Axel & Rocco

[image]Stephanie Soulos - Axel & Rocco 28 weeks hospital r.jpg

Miracle Mum, Stephanie needed an emergency c-section after her bubs were given a diagnosis of late stage Twin To Twin Transfusion Syndrome.

"My pregnancy was going smoothly up until I got to 27 weeks. I started getting back pain. I ignored it at first thinking it was just due to carrying twins.  

On June 16th I took my son to his friends birthday party. While I was there the pain escalated. I couldn't sit or stand without being in agony. I felt nauseous and it even hurt to breathe. I ended up in tears, texting my husband to come and get us. By early evening I was struggling so my mum came over and took me to ED.

I was given an Echocardiogram and was told I was having contractions. The Dr diagnosed me with Polyhydramnios (excess amniotic fluid) threatening pre-term labour. I was given medication to stop labour and transferred by ambulance to King Edward Memorial Hospital.

On 17th June at 28 weeks pregnant I was taken for an ultrasound at 8:30am. I was told that the babies had late stage Twin To Twin Transfusion Syndrome and that as my smaller twin was compromised I needed an urgent c-section or I'd likely lose him.  I panicked as my husband was 2 hours away and I had no one with me. The Drs agreed to hold off the surgery while he drove up and decided to administer medication while they waited. I was given Anti D, antibiotics and a magnesium infusion. Every 20 mins I'd be asked how far away my husband was. As soon as he arrived we were off to theatre.

Axel was born at 2:25 weighing 1220kg and Rocco at 2:26 weighing 970g. Rocco wasn't breathing and needed CPR after birth but was quickly revived. The boys were placed on a Neo Puff CPAP, covered in glad wrap and taken straight to the NICCU.

The boys spent 59 days in NICCU where Axel was treated for Anaemia & Respiratory Distress. Rocco was treated for Anaemia, Respiratory Distress and IUGR. Despite being revived at birth he thrived. Weighing less than 1kg Rocco was off his drip & CPAP and on full tube feeds and hiflo oxygen support before he was 2 weeks old. He charmed the nurses and they nicknamed him "fiesty" because he'd put up a fight if he didn't like something. Rocco quickly worked out how to pull out his nasal prongs and feeding tube. He'd set his machines alarming and fight the nurse as they put his tubes back in.

Axel struggled the first few weeks and had a deterioration at 4 weeks of age. He had an episode of multiple bradycardias & desats. His numbers were scary low and he didn't pick himself up. After 2 days of extra meds & oxygen he didn't improve so the Dr did an Echo of his heart. He was diagnosed with a common congenital heart defect- Patent Ductus Arteriosus (PDA). He took medication for 3 days and the duct had significantly improved. The change in Axel was extraordinary. His breathing was stable, he wasn't desating as hard or fast and he was gradually able to be weaned off his oxygen. The nurses nicknamed him "sweet boy" as he was so easy going. He put up with anything without fuss.

The twins transferred to the SCN at King Edward for 12 days. They put on baby clothes, had their first baths and I bottle fed them for the first time. After 70 days total at King Edward the boys were both transferred to Bunbury Hospital as Axel required 5 days of cardiac monitoring due to the PDA.  He was still having the occasional bradycardia & desat. A cardiac specialist was called in and the PDA had closed and he isn't likely to have any ongoing complications.

Axel & Rocco came home 1 week before their due date and are growing beautifully.
My five year old hadn't been allowed into the NICU so was very excited to meet his brothers for the first time. After 3 months living away from my family I was so happy for us to finally all be together."

Thank you Stephanie for sharing your story.

Stephanie Soulos - Axel & Rocco 28 weeks now.jpg

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