You might have seen it online. We are home! We have been for almost two weeks now. This is what we have been looking forward to for months and months. And roughly three weeks ago the medical team told us she might be able to go home in a week. After a week of building down meds and us taking over almost all care for Evelyn, the moment finally arrived. We could go home!
Evvy’s cardiologist and some of the nurses warned us that the first couple of days to first week might be really hectic as she has never been outside the hospital and needs to get used to a completely new environment. This means new sounds, different scent, different temperature and no nurses coming in her room anymore. That all might be a big adjustment for her. And for us too. We had been rooming in with her – one of us at a time that is – but being home with her is different. It’s what we wanted all along of course!
We love our time together. We get to take in every smile, every baby conversation and every diaper. Evvy has been impressing us. She is becoming stronger every day since we are home. We still need to be careful with her wound and it’s not completely healed yet and it is still a bit sore, so we are taking it slow with tummy time in short intervals. But we can see her neck getting stronger, her becoming more flexible and starting to babble more and more. Also, her schedule wasn’t impacted by her moving home too much. She sleeps and wakes around the same times (which is still too early for us) and does naps around the same time.
We are thankful. Thankful we get to be together as a family. Thankful that we could dedicate her in our church last Sunday. Thankful that she’s made it to the other end of a very challenging hospital stay. But that doesn’t mean it’s all over now. Evelyn still has HLHS and has a different blood circulation, driven by half a heart. The current warm weather makes her sweat more and spit more as well. So she doesn’t retain all her food or her meds. She is not off all meds yet. She still has two types of diuretics, is on aspirin and on an antibiotic for another two weeks. We don’t know for how long she will need the diuretics and aspirin. For now, we are taking weekly trips to the hospital for checkups, but we will have to go less often as time passes if she keeps on doing well.
Also, she still has her ng tube as she can’t drink a whole bottle. We are trying to train her and have help from a speech therapist so she can get more of her feeds from the bottle and less via tube. Hopefully we can start little bits of solid foods in the near future too!
For now, we would love for you to keep praying for Evelyn – for her wound to heal completely, for her to develop her drinking skills and for her to keep on being stable and strong. And for us to find the right day care for her! It’s a bit harder to find something that works for her, as not every day care centre wants to accept her as they don’t want to work with an ng tube.
Thanks everyone for reading, still being a part of our journey and for praying for Evvy!