It’s been a rough few weeks for us here at the hospital. It feels like as soon as we take a step forward, we then take 3 back. But overall Oakleigh is still doing well! She is finally starting to gain faster and is now 3lbs 13.5oz! It took a while for them to figure out the best combination to help her grow at the rate she needs to be, but I think they found it now! She also has been maintaining her temperature so she was weaned from an isolette and is now in a crib! Unfortunately, she developed thrush and that caused her to have a severe oral aversion. She completely stopped taking bottles and now is refusing to suck on either bottle or pacifier. She finally is tolerating the pacifier in her mouth, but just won’t suck. Speech Therapists have been working with her trying to rebuild those skills but she isn’t progressing the way they would like. They suggested a G-tube (a feeding tube in the stomach) in order to get her home with hopes that she will progress faster. We would continue to work with her on oral feeds but at this point it could take months before she is capable of taking her feeds entirely by mouth. The surgery to insert the G-tube will be on Monday, October 20. She is also suffering from pretty significant reflux so they are trying to find a solution for that as well. We took Abilene to Lincoln Ridge Farms as a fun day. We missed Oakleigh but it was fun to get out and spend time with Abilene. She has been handling this better than expected but does struggle sometimes with her feelings. She doesn’t understand everything, but she prays every night for Oagley Kai (Oakleigh) to get big and strong, so she can come home. She can’t wait to meet her and hold her! I know she will be the best big sister!
This road has been long and not at all the way we had hoped, but I am so thankful for Jesus and for our village who has rallied around us. We are grateful for all the ways people have helped us and don’t know how to adequately thank everyone. There have been many times along this journey that I (Alyssa) have thought and even voiced that this is too hard and too much, but then I hear God say, “It isn’t too much for me.” We know that He is going before us and working even when we don’t see it. I’m thankful for the promise that He won’t leave us! If you are going through a difficult season, I pray that Jesus meets you where you are. Take a listen to Leanna Crawford’s song “Honest”. So many phrases that put into words what I couldn’t and still can’t at times. May you find comfort in knowing that He is beside you!
