We're going home on Thursday!! I can't believe it..... just seems like a dream! I'm a little afraid to completely get my hopes up, but it looks like a go. I had to say goodbye to some of my nurses today and I had a difficult time letting them go and knowing that they had to let my son go. They have invested a lot of time and energy into Ned's survival and progress. They have become my friends and the only family Ned has really known. As much as I am ready to get back home and to our normal life, the people I have met here will be dearly missed.
Most of our days are now being spent getting prepared for home. I have trained on the feeding pump that we'll be taking home. Ned began bolus feedings today and seems to be tolerating it rather well. The feeding change is a big adjustment for his belly, but he looks like he's going to make his peace with it. Ned passed his carseat test with flying colors. What that basically means is that he sat in his carseat for 3 hours without any problems....he actually slept through the whole thing. I can only hope he does the same for the road trip on Thursday!
The doctors have been so good to get everything set up for us at home. They have tracked down a pediatrician, and all my specialists in Charlotte. I will return to Chapel Hill for follow-ups with our surgery team, but everything else will be handled out of CMC. Ned's general surgeon told me yesterday that he and the heart surgeon were high-fiving in the hallways about how well Ned has done and how he's going home. That melts my heart that they are so excited about Ned...such truly beautiful people.
As an aside, baby Charlie has made it through his CDH repair this afternoon. His hernia didn't end up being that severe and they were able to close the whole without the use of a patch. They are planning on peforming his first of several surgeries to repair his heart defect on Friday. Please keep Charlie and his family in your prayers. They are still struggling to get their minds around everything and they have a long road to hoe.
I want to thank you all again for all your prayers and encouragement over the past 4 months and even prior to that. I know everyone will want to see Ned and I so wish we could have a big coming home party, but until we meet with some of his specialists, we're not sure how they are going to want us to handle germ control. I'll keep everyone posted on what they think his immune system and lungs can handle and as soon as we can have company, I'll let everyone know. Until then, I'll keep the blog updated so everyone can continue to track Ned's progress. I know you all have a lot of time and emotions invested in our little man as well. Love you all and can't wait to see you soon!
Much love and many blessings,
Betsy, Travis, Jack & Ned