Not what we were hoping for.

At our appointment with the G.I. specialist we were told that if we really had our hearts set on it, they would remove feeding tube, how ever it was suggested that we leave it in for another 8 weeks, through the end of RSV season. God forbid if Bryton were to get sick, that feeding tube is a secure way for us to get him meds and food. So we are going to wait. We already have an appointment to go back to have it removed. We've waited this long already, what's another 8 weeks? We are so excited about his birthday next week- how amazing is it to finally be here? A little less than a year ago, we were living a nightmare. Next Friday, we will be celebrating our little miracle man. We just hope that everyone knows how much we have really appreciated all of the love and support. It has been such an incredible journey. We are so excited to have my mom and JoJo here. It's going to be such a great week. We will be posting plenty of pictures!!!

This could be a big day for us!

Right now we are getting ready to take Bryton to see the G.I. specialist about getting rid of this feeding tube. Over the weekend it got very irritated and it looked like it might have been getting infected so we have been keeping it very clean and avoiding irritation. It looks much better already, but since my mom is coming from CA in 3 days, it would just be wonderful to eliminate it today. I'll have more news in a few hours! Lets cross our fingers!!!

We went to the Dr today . . . .

And I have to say, I really enjoyed it. Grandma Cathy came with us and we basically got to sit in a room with Bryton and 8 medical professionals and talk about how cute he is and how amazing he's doing. We thought that they would be doing an MRI just to get an image and see what everything looks like, but they don't think it's even necessary based on how incredibly well he's doing. He definitely has serious developmental delays, but other than that, he's amazing. He is healthy and we know that he is growing and learning. What more could we ask for? The weather is starting to improve up here in NYC so hopefully we will be able to make afternoon walks a daily fixture. Life is pretty good today.

We have internet!!!

Finally!!! We have a link to the outside world and this is the very first thing I am doing. Bryton is amazing! We are going to be getting rid of the feeding tube soon, hopefully before my Mom comes from CA for his birthday! He also is basically off oxygen. We have been working with the pediatrition, the pulmonologist, and cardiologist and it's only a matter of time before it's official. He is about 20 lbs now and he is still just growing and learning and amazing us every day. We haven't used the feeding tube at all basically and he is doing so well taking all of his bottles. He has teeth!!! He two front bottom teeth are making their way in and they are just so adorable. Thank goodness they don't seem to bother him a bit!!! Cookie has joined us and her and Bryton couldn't care less about eachother. Not what we were expecting. . . but it works. Over all we are doing really well up here. The weather was giving us quite a beat down for a while, but it looks like things are letting up. The 4 of us took a walk together the other day and it was just really nice to get out of the appartment and not go to a doctors appointment. So that's it in a nut shell. Now that we have our own reliable internet I promise to be on here everyday with updates. Yay internet!!!

Bryton is coming home tomorrow!!!!

It's a done deal! No ifs, ands, or butts about it. The medical equipment should be here sometime after 12 tomorrow afternoon, and as soon as we know how to use it we can finally take our baby home!!! When we leave here we will go back over to the Ronald McDonald house and spend one more night there to make sure that we have everything together and ready to go and we will get one more night to just rest. Then Saturday morning we will finally close this chapter of our lives, and we will go home with our son. What an amazing journey this has been. We have been living this way for 9 months now and it is just so incredible to see the light at the end of this crazy tunnel. I just really hope that you all know how much we have really appreciated all of the love, support, kind words, hugs and awesome baby stuff. I really can't imagine making this journey without you all. We have just been so incredibly blessed in so many ways. I am having a hard time finding the words to express all of the emotions running through me right now. This is our life story. How did we get to be the lucky ones? I cannot tell you how many tragic, heart breaking stories we have come across in our time here and I just don't know how to be. We have been so humbled, but at the same time I have never felt happiness like this before. It's amazing. And you all have been so incredible. Thank you so much for making this experience bearable. Thank you.

An Update. Finally.

I have been really terrible and I am really, really sorry. Life has never been more hectic around here. Bryton is amazing. He is basically almost off of the oxygen and not only is he taking all of his feeds by bottle, but we have been working on cereal! It's really amazing. Daddy has been up in NYC since December 13th and I have been going back and forth for a few weeks now- everything is finally ready! Now we are just waiting for the insurance switch and we should be good to go home. We had a really great Christmas with our little man and Grandma Cathy. I really want to thank everyone for the wonderful gifts- it was really special to see how much effort others put into making our first Christmas with Bryton a special one. I have a ton of other pictures that I will post soon, but it's very late and I just wanted to give you all a quick update. Check back soon- I promise I will not neglect the blog like that again!

Small Miracles Happen.

I am so sorry. I know I have seriously neglected the blog and I feel terrible. Life just gets crazier and crazier around here! So basically, Bryton is just about ready to come home. It has been a wild few weeks but he is just to cool to let anything keep him down. He is getting all most no support with his oxygen at this point and it's like he just gets it all of a sudden. He has totally blossomed. This is not the same little boy anymore. He is a chunky 16.3 lb curious, very opinionated, amazing little boy. He has made tremendous progress with just about every thing. He has no problem holding his head up on his own anymore. He is always cooing and making beafutiful baby noises that we just can't get enough of. We even heard him laugh a few weeks ago!!! It is a dream come true to see our little boy doing so well. This has been an especially good couple of weeks for us. Last week while I was at work, one of the nursing students from Christiana that worked with Bryton came to my work and brought us a gorgeious Baby's First Christmas ornament engraved with " Small Miracles Happen ". It was such a surprise and it really means to much to us. How incredibly fortunate are we to have people like this in our lives? We left that hospital more than 6 months ago! Not to mention all of the amazing people that have helped us out here in Wilmington. You know who you are! We are spoiled. We have our amazing little boy, a great family, and awesome friends. It has been a long, hard road, but I wouldn't change anything about the last 8 months. We were here for a reason. This is a bittersweet time in our lives. Daddy has been up in NYC since Saturday starting the big appartment hunt so that we can take the next step in our life as a family and finally bring our son home. We are so happy and so excited to get back up to the big apple, but how could we not be sad about leaving the people that have helped us through this incredible journey we've been on? We have made so many new friends that we never expected to have. We are so fortunate. I promise I wont ever take this long to update again!!!