Our heart warrior Evelyn is turning four months! That means we have been in the hospital for four months, of which three weeks in medium care. Evelyn has already had the Norwood and the Glenn procedures – the last one a lot earlier than other HLHS babies. The Glenn has made so much difference. She has been making progress in baby steps.
Since last week, we have been slowly building down some of her meds and taking some steps every couple of days. That has been leading to her being subject to withdrawal. That means wild nights and a lot of physical attention needed from mom and dad. There are times where withdrawal doesn’t affect her, but mostly at night, she has some symptoms. Wild movements in her head, arms and legs. The only thing that helps, is a lot of love and a lot of holding her in our arms. That comforts her and helps her get back to sleep.
The main focus in the last week however has been her infection and her wound. Her wound has been recovering slowly. The staff has been using alginate to help her wound recover as it’s been going slow. And she has been receiving antibiotics via IV and will need that for the next couple of days. After that, she can switch to receiving antibiotics orally.
That means that she doesn’t need an IV anymore. And in the last couple of days, her heart monitor and saturation monitor have been taken off and are not monitored continuously anymore, but every eight hours. We won’t be going home with them! That’s right – we are finally able to think about going home. We won’t know when exactly, but it might be soon if no new obstacles get in our way.
So right now, that is our prayer focus! For her wound to heal, antibiotics to work and to be able to move to oral antibiotics so we can go home! We are very excited by the prospect that Evvy will finally see her own home. And a little bit scared, as we have to do all her care by herself, but we have been getting trained by the staff here.
Thanks for all your support and your prayer and your lovely messages! Special shout out to our friends at C3 Edinburgh for sending Evelyn some lovely gifts. We will keep you up to date of her progress for sure!
For now, if you had not seen it yet, enjoy this little clip of a smiley Evvy.
