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ENT Update and Surgery

Eden had her evaluation with the ENT doctor last Friday and the results were... mixed. On the one hand, they were able to determine that she does need a feeding tube and we can forego any future testing and move right towards the surgery for the g-tube (which is scheduled for this Thursday morning at 7:30). This was good news in many ways because it means having her home sooner. 

The hard part was that they were able to see that when there is liquid in her mouth, it goes right into her airway rather than down into her stomach. She is not able to protect her airway and send the food down the right tube, so to speak. This is something that should happen unconsciously as the brain sends the right signals to the right places. Because of the complications with Eden's brain development, or lack of development, she is not able to swallow and in fact, it's dangerous for her to try to do so. If too much liquid gets down into her lungs, it could cause her to aspirate and could lead to lung infections and pneumonia. 

So, we're thankful for modern medicine and things like feeding tubes and excellent doctors and surgeons, but sad for more evidence that our little sweet's brain isn't working as it should. 

Please pray for her during her surgery on Thursday. They will put her under anesthesia, do the surgery, and then she will likely have at least another week or longer in recovery at the NICU. They want to make sure that it heals well and that she is able to tolerate her feeds via the new tube before they send her home. And then we will have lots of training to make sure that we're prepared to take care of her at home. 

We know that this is a relatively easy procedure and that infants tend to tolerate these types of tubes really well, but I'm still nervous. I know that her heart is good, her lungs are good, but she's still a fragile little thing and we're praying that she makes it through without any complications. A nurse even asked us if we wanted to have her blessed or baptized before the surgery and it made me wonder if they think somehow she won't make it. That's probably not the case, but it has played with my emotions a little and I'm finding myself having to actively entrust her to the Lord again and again, which is probably exactly as it should be. 

I don't know exactly what to say other than that we are taking this a day at a time. God has given us the resources for today and has asked us to trust him with tomorrow. And we do. We know that he has been faithful in the past and will continue to be faithful in the days ahead. 

ps. Isn't she sweet? I've discovered that she looks great in periwinkle and mint and that her lips are the perfect heart shape. I can't wait to have all of those cords removed for better snuggles and easier access to those kissable cheeks. 


Dona said...

She is very sweet! I am praying for Eden and your family. May the Lord bless and protect Eden as she goes through surgery tomorrow. May He grant you and Don the Strength, peace, grace and skill to walk this path. Sara, I pray that you will have rest and your body will be strengthened. My love and prayers

Corrie and Phil said...

You are right about the periwinkle. What a doll. Thanks for keeping us all posted. We're all praying!!

Rochelle said...

Ohhh sooo sweet and kissable!!! Love the outfit on her. She's so darling. We are praying for tomorrow - oh surgery is so terrible and hard when they are so little, even though everything should go so smoothly. I was terrified when Elijah had surgery for chest tubes put in even though the doctors said it was a standard procedure. It's all just so scary feeling when they're so tiny. You're right though - entrusting her again and again to the Lord is just as it should be. We love our little ones so much, something God instilled in us (and he loves them even more than we do, which is hard for us to fully comprehend!), and I think it's perfectly normal to want to just hold her, not let go, and keep her safe. But knowing this is the best thing for her does make it easier, and God truly has her in his Almighty hands. So much to be thankful for in the midst of the super hard. Sending you lots of love, hugs, and prayers!!

Ashley said...

We love her and love all of you.