Another Update

Ella is continuing to improve a little each day. She has come across another obstacle in the road to recovery. This is actually something that I have been prepared for. Before she had surgery, she was only allowed to oral feedings if her respiratory rates were below 75. That was not very often. We did work with Occupational Therapy a little bit before surgery to help with her feeds. Now that she is out of surgery and for the most part, recovered, we are now focused on getting her to eat so she can come home. She has just really struggled with pulling the milk out of the bottle. We are not surprised that she is having this problem. She really has not had a chance to learn how to eat. She is able to do all the components of eating, the suck, swallow and breath, but to coordinate them together is a bit tricky but she is getting it! Just on her terms. What does this mean??? What it means is, Wyatt and I can let her continue to practice her eating at the hospital and continue tube feedings there OR do it at home. Well, DUH!!! We want to do it at home. HOWEVER, there are many risks that come with tube feedings using the NG tube (tube in her nose) since it will be a long term use, meaning over a couple of weeks. There are the risks that she may pull it out during a feed or it is placed in correctly, all causing potential harm to her lungs. The other option is to put in a G tube (a tube in her tummy). This has a lot less risks for long term use, however, it does require anther surgery to place the G-tube. Obviously, I would rather her not have surgery, but I don't want to put her at risk for other health issues. The team and I met today to talk about Wyatt and I's concerns about both options, and it was decided that the best option for Ella is to get the G tube. This will get her home faster, is safer, has way less risks, and less scary for Wyatt and I as we will not have to worry about if it is in correctly. Plus she will not have to have anymore things taped to her little face! I am not 100% sure what will happen exactly in surgery, since I have not met with them yet. Hopefully soon! It is a pretty minor surgery (especially compared to what she already had!) It will take about an hour and she will recover in the NICU. No waiting for a PICU bed!!! She will have to go back on the vent, but they say that there is a high probability that she will be back off of it before she gets back to the NICU. During the recovery days, Wyatt and I will learn how to take care of the G tube. Once she has her stitches out and is feeling good we can take her HOME!!! The plan is, at every feed, Ella will start out with an oral feed. When she is tuckered out from that, the rest of her feed will go through the tube. The goal is to get her to take more by mouth, less by tube. Once she gets everything by mouth then we can take the tube out and stitch it up. It will take her a while before she gets to be done with the tube, but she will get there with a lot of dedication. I can be pretty determined! She may only need the tube for a few months. It is all up to her! In the meantime, I predict VERY LONG feedings! Those late night feedings are going to be brutal but we will do anything for Miss Ella!!!

 Just for fun, here is a video I took of Ella. This was from a week ago. She still has her nares on her head! She was enjoying the kissing noise and she was really trying to figure out her tongue.