Our journey: two months of HLHS

Welcome to our first post on our website. We posted updates during Intan’s pregnancy and one month after Evelyn’s birth on Loey’s website. Our lives have changed quite a bit since knowing about our daughter having Hypoplastic Left Heart Syndrome. We are now almost two months in and Evelyn is still on the Intensive Care. Thanks for taking the time to read and be a part of our journey.

We were warned that life might become a rollercoaster after birth and that’s exactly what it’s been like. There are so many good moments: moments we can hold her, look her deep into the eyes and spend as a family. There are also difficult moments. Moments that she’s not doing well and doctors have to figure out why. Fevers. Infections. Sats dropping and heart rates rising.

March started off good. Evvy was able to build down breathing support. First from intubation to CPAP and on March 12 she even moved to OptiFlow. For the first time since birth we could see her nose! We were really excited about that. Some off her meds, especially sleeping meds, painkillers and heart meds were built down (not completely). The benefit of her being off intubation was also that now we are able to hold her. So that’s exactly what we have done almost every day since then. The only exception has been the days that she has not been doing well.

Unfortunately there have been quite a few of those as well. Fever has been a regularly occurrence, especially at night. Since her infection in February she has had two infections in March as well. Earlier this month she took it quite well. This week was a bit harder. Evvy has been a bit more stressed and really needed her mom and dad to comfort her. The nursing staff is amazing here and they do everything they can, but she needs to be held by her mom. Her favourite thing to do whilst being held by mom is looking at dad.

This last week has been a hard one. She is very difficult to comfort and has been getting quite high fevers. The last infection has been taking a toll. Her heart meds are back at old levels. She is getting an antibiotic cocktail that seems quite heavy. Doctors are worried that she might have NEC, but it’s still inconclusive. We think she is really having a hard time with the enriched foods. She has been throwing up quite a bit and felt really fussy, until they stopped giving her those enriched foods.

The last time she started improving, somewhere in late February, it seemed like it came out of nowhere. We are believing and waiting for that moment that the situation turns this time around as well. We know she is strong and determined. She has a strong will. She lets us know if something happens that she doesn’t like. She doesn’t lying on her left side for example. And she makes known that she doesn’t want to lie down on that side.

We are very thankful for having an amazing community of people around us. People praying, bringing food, asking if they can do anything for us. This time is a testimony of living a life shared with others, as we never imagined that we would have to lean on others as much as now. Our encouragement would really be to find a tribe and share your life.

And we know that for those who love God all things work together for good, for those who are called according to his purpose

Romans 8:28 ESV

Thanks everyone for praying and believing for the best. We know that somehow, God works in all things for the good of those who love him. At some point, we will see how. To all our fellow heart parents: we are so impressed by you. You are strong, you can do this!

Love,

Loey & Intan