Author: Shannon Badke
Finally after 2 years of trying, 30kg weight loss and 2 months of hormone injections I got a positive test. After bloods and waiting for an ultrasound I found out was 6 weeks pregnant. The scan showed 3 sacs and 2 heart beats!! I was so shocked but excited. We went back 2 weeks later at 8 weeks and had 3 heartbeats! Still so shocked but so excited.
As I was in a high risk category, I sent off paper work to the Mater Mothers hospital to ask to be seen by midwives there. Our 12 week scan showed that we had lost one of our precious babies (MCDA twin to Jaxton) and one of the others (now baby A) had oligohydramnios which is a condition where baby has low fluid volume (less then 2cm) the hospital told us there was nothing they could do except wait another 4 weeks for another scan. We waited anxiously until out 16week scan which showed baby B (DCDA twin to Jaxton) was a boy and perfectly healthy, but baby A’s sac still had near to no fluid. The specialist did his talk and explained my waters was slowly leaking and to expect the worse. He told me about all these horrible things that COULD go wrong, being that he didn’t have much fluid and even asked us if we would chose to terminate my pregnancy. This option was completely off the table; if he was still fighting I was not giving up on him. From 20 weeks I had weekly scans to check fluid levels but they never went above 1.8cm in the biggest pool.
Although the doctor didn’t believe bed-rest would help, I decided to do it anyway, and spent the next 9 weeks sleeping on my recliner and moved around my house on a computer chair to minimise leakage. I had a few bleeding episodes where I was admitted overnight but everything else was fine. I had to keep a log of my temp and heart rate and stay off my feet as much as possible. At 29+3 I went into labour at home by the time I got to the hospital I wasn’t feeling well. I had developed a fever and had an infection. They tried to stop the contractions but decided it was time for them to come. As both boys were breech I was taken for a c section.
At 10:04 Jaxton Willoe (1350g) was born. I didn’t get to see him, as they ran off with him straight away because he wasn’t breathing. At 10:06 Leonardo Ace (1390g) was born. I got a quick look in the mirror but he was not breathing either they were both resuscitated and intubated. I had to wait in recovery for hours, as I keep having apnea episodes. Once I was stable they wheeled the bed into the NICU so I could see my boys. They were the most beautiful sight I could see. So tiny and hairy. Jaxton has some physical issues that stood out, and of course was horrible to see him look so squished. I felt responsible and heartbroken. We were told his chances of living through the night were slim so my immediate family met us in the room to say our possible goodbyes to my sweet baby. After a long night hand expressing my liquid gold, in the morning I got a call asking permission for Jaxton to have chest drain put in as his right rib cage was showing fluid, it was a success. It had been 24 hours since my 10 minute visit after they were born, and I was aching to see them. They were doing great, considering, and I was finally able to go down and see my boys again.
This was the start of our NICU stay. I wanted to spend as much time as possible as I could with them, but the pain of the c-section, and what with sitting all day, I wasn’t healing and my wound reopened. However I wasn’t worried about myself. I just wanted to make sure my boys were okay. Every day was a new adventure. Walking into the hospital to ask the nurse how my boys were overnight, what they had achieved and to hand in my bags and bags of expressed milk. Both had jaundice episodes, but other then needing help because of their premmie lungs they were very lucky healthy babies. Leonardo only spent 24 hours intubated, and 9 days on c-pap with a total of 10 days and 14 hours with breathing support! Jaxton, whose waters broke at 16 weeks, was diagnosed with chronic neonatal lung disease and spent 6 days and 4 hours intubated and a total of 26 days 22 hours on c-pap and high-flow. Now at 7.5 months, he is on continuous low flow at home.
It was mentally exhausting going into hospital day in and day out, and having to leave my boys in hospital to go home to my husband and daughter at home. I felt judged by the other mothers and the nurses even if they weren’t, you still feel it; “was I in here enough today”, “did I ask the right questions”, “did I help enough”, “will they look at me weird if I talk to my babies through their incubators”.
Leonardo was 3 weeks old and wanting to breastfeed. It was an amazing feeling but I couldn’t help but feel pressured into it. I asked them to start offering bottles but they refused and said to just keep offering my breast near feeding time. Over the following weeks I fed Leonardo and tried to with Jaxton, but with all his tubes it was a lot harder. He also had horrible reflux and his tongue was always on the roof of his mouth. so breastfeeding wasn’t easy for him. Luckily the wonderful nurses at Logan hospital helped and were more then happy with me trying bottles. We got a few successful breastfeeds but he was exhausted within minutes, so I stuck to expressed milk in bottles for him and Leo. Plus breastfed Leo every feed I was in for. Jaxton was seeing a physiotherapist daily for his feet and arms for stretching. She was great but not very informative on what she thought his condition was. This left us in the dark for a long time until we met an amazing physio at Logan hospital whom we still see today. She gave us print outs with photos oh how to do stretches for myself and the nurse on care looking after him. We were at Mater Mothers for 6 weeks waiting for Jaxton to come off high flow onto low-flow oxygen. We were then transferred to Logan Special Care, as it was closer for us to get to. We were there for for 2 weeks for Leonardo and 3 weeks for Jaxton. Both hospitals were amazing, and the staff were so helpful and I will never forget the ladies that helped save my boys. In the 62 and 68 days and I only ever stayed at home twice; once for my own mental wellbeing and the other was the day before Easter.
I am so extremely proud of myself, and my two beautiful miracles, for what we have been though. The road never felt like it was going to end, but eventually we got there. And so began another journey for Jaxton, with feet casting and boots and bar for his club food and congenital vertical talus, and hand splints for both hands. We are still waiting for a MRI for his shoulder dislocation and underdeveloped shoulder sockets. I await the day we have a plan to help fix his arms so he can achieve all he is meant to. Jaxton and Leonardo are how 7.5 months old or 5 months corrected. Both are amazing sleepers and fill my day with endless love, laughter and smiles.
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