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!!!

Making arrangements . . .

What a wild 7 months! We aren't exactly enjoying the new unit, but it's not about us, right? It's a good thing that he no longer requires intensive care- but we still miss the NICU. Bryton is doing really great right now. They tried to wean his vapo therm settings the other day, but we think they jumped the gun and he just wasn't ready for that kind of change. Daddy and I have finally decided that we definitely want to go back to NYC. We are looking for a place right now, and we are hoping to get a place and start moving our stuff asap because it would work our wonderfully if we could just transfer Bryton to another hospital as opposed to waiting for him to be discharged down here and then take him up there. This way we will have a chance to be moved in and settled before we bring him home, not to mention it will make the process of establishing outpatient/follow up care much easier. So for now all is well. NYC- here we come.

So long NICU!!!

The day before yesterday dad and I both got phone calls from the hospital letting us know that Bryton is no longer in need of intensive care and was moved to a therapy floor!!! He is only being followed by pulmonology at this point and is doing so well that he could be home within a matter of weeks!!! We are so amazed and so happy with the way things going right now, it's almost hard to swallow! Unfortunately we have been having a rough time with finding housing in the area so if anyone knows or hears of anything please let us know!! We just can't justify spending $400-$500 on one room when for just a little more we could get an apartment- which we really don't want to do. As soon as Bryton is ready, we are ready to go back to NYC. This is however our safe place right now and until we're all a little more comfortable being home together, we don't want to go anywhere. He is such an amazing little boy and we can't wait to get him home! We don't have the luxury of having our own room anymore, but it's one step closer to coming home and we wont be there long anyway! YAY!!!!

Bryton Rocks

Life has been very busy here in DE- we can't stop playing with Bryton! He came off the ventilator 3 days ago and it has been such a wonderful time for all of us. They are weaning him off of all the sedation and he is finally able to be a baby! We were very hesitant and did a lot of thinking about and discussing the issue, but we are so glad that we chose to give him steroids to help with the swelling in his air way. We knew he was ready to come off the vent, but it is a miracle that he is doing so well. He is finally laughing and smiling and interacting with us the way we've been waiting for. We know that he is going to be a little behind developmentally, but really, who cares? We are going to get him all of the help we possibly can. He is happy and growing and not limited by that damn ventilator anymore!!! It's been a really awesome, special time for us. Now we just want to get him home.

Surgery was a success!!!

Surgery went beautifully yesterday! He went down at about 9:30am and was done at 3:30pm and it all went as good as well as we could have hoped for. Fortunately they were able to do the main procedure laproscopically and the incisions are very small and already healing. He is still heavily sedated and will be for a while, but all is good and we are happy. More soon!