February 10, 2020

Hi everyone! Maddie moved out of the nicu and is now on a different floor working on her feeds before she can come home. We’ve had a very good few days but hit a little bump in the road today. Maddie has been throwing up a lot of her formula. I believe they may be giving her too much too soon but they are going to do an X-ray today to make sure her belly is okay. Hopefully they will back down on the feeds so her belly can handle it better. We are really hoping going slower can help her with the feeds and we hope to get her home sometime soon!

February 2, 2020

Maddie had a great day today! She went up on her feeds from 1.25 ml/hr to 2.5 ml/hr. If all goes well, they will up it again tomorrow! She had a lot of awake time today now that they are weaning her pain meds. Things seem to be improving, although we try not to get too excited because it seems that things can turn around quickly in the NICU as we have seen in the past. We are hoping the feeds continue to go well through the tube so she can start a bottle soon. We will update everyone again tomorrow!

January 31, 2020

Today was a pretty good day in the NICU. We are still trying to resolve this bacteria but it’s possible she could’ve gotten it from her breathing tube. We will find out more in the coming weeks, as hard as it is to wait. The good news is that Maddie’s team at children’s hospital stopped one of her post operative pain/sedation medications. The other one will continue to be weened off slowly. After that, she will just need Tylenol if needed for her pain from the surgery. Another big milestone today is that she got her repolgle tube out of her nose! This is a tube that was in her nose to drain her belly while she wasn’t eating. As long as she doesn’t throw up or have a distended belly overnight, the tube can stay out and she can hopefully start feeding tomorrow but we are not sure. Today was a good day, but it is tough because it seems that each time we have a good day, the next day is not so good. We feel that we keep taking one step forward and two steps back. We are trying to remain positive and hopeful but we never know what to expect on this roller coaster of a journey. I will continue to write updates each day to let everyone know how Maddie is doing. We are really hoping we can get her home soon!