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!

Bryton is a chunker.

At 12 lbs, he is almost the biggest baby in the unit. Things are going pretty well in the NICU. He is basically being heavily sedated to keep him from moving around so much and irritating his air way. They tried to extubate him the other day but it didn't happen because his airway is so swollen from him trying to pull the tube out. He hates that tube so much. So do we. The infection in his airway is getting better everyday. Everything is still go for tuesday. We are really anxious to get this surgery over and done with so that we can hopefully start getting ready to finally get our little man home.

Hangin in there.

Not much has changed with our little man. He's doing pretty well despite some of these recent issues we've come up against. He is already responding to antibiotics which is awesome. Especially the diarrhea. So much fun. We are just hoping that they wont decide to hold off on surgery any longer. We want to get him off this ventilator! But if they do decide to wait, we know it's only in his best interest. Hopefully we'll know more tomorrow. Go Bryton!

Square One.

I'm sorry it's taken so long for me to update. To be perfectly honest, I've kind of been avoiding it. I was hoping that if I held off for a few days that we might have better news to post for you, but it's just not so. Last Friday in the afternoon, Dr.Tuttle called us to let us know that Bryton had to be reintubated. He had a pretty severe episode of aspiration and there was no way around it. He is scheduled to have surgery next Tuesday. They are going to do a handful of procedures and hopefully we'll be able to put this all behind us in the very near future. We aren't even talking about discharging him anymore. Only God knows when that'll happen. At this point it seems to dad and I that he'd be ready to come off the vent right now, but they don't want to take him off it just to put him back on again in a few days for the surgery. We are very frustrated with this turn of events. It's like being at square one again. His nurse said to us "Well, they told you when he was born that this was going to be a long road." Yes. We know. But why don't you try on my shoes before you say that? We know that he is going to get past this just like the tons of other issues he's had to deal with. That doesn't make us any more comfortable or happy about the situation. We know he's strong. We know he's going to be alright. That doesn't mean we can't be upset about it, right? It just seems like we've had to put our relationship with him on hold for the time being because he is so heavily sedated and we don't want to hold him for fear of losing the ET tube. There are no plans to change anything this week. I'll be better about updating, I promise.