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!

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.

Update!!

I just spoke with Dr.Tuttle and they have basically decided to give Bryton a more permanent feeding tube- a G tube. It's not actually permanent, but he will probably have it for 6 months to a year. They decided on the tube because he just doesn't have the stamina to take the thickened feedings. It's basically like trying to suck peanut butter out of a bottle for him. I don't know about you, but that would make me tired after a while too. The G tube will help with a few different things though. First of all, it wont irritate his air way and his moth as much- he doesn't act like it bothers him to much, but it does cause some extra irritation. Second, when they take the NG tube out of his stomach, it will allow the valve into the stomach to close more and help with his reflux/aspiration in general. Third, the G tube is in general a more stable alternative and it's something he could come home with. They haven't had a surgeon in to see him yet, but they're hoping to do it next week. They want to also repair his hernia and do his circumcision at the same time. It seems like a lot to do at once, but part of why I'm personally in favor of it is because the hernia and the circumcision need to be done anyway, and this way he wont have to be put under general anesthesia or re-intubated more than once. They can just do it all at one time and get it over with. I'm not exactly in favor of re-intubating him, but it should only be for a few days and it'll overall be a good thing for him. The hernia doesn't really hurt him, but it's not comfortable either, and with the changes the G tube will make, we'll hopefully be able to make more progress with his respiratory status in the generally near future. It's not what we were hoping for, but it could always be worse.

11 lbs!

The conversion chart they keep in the rooms to convert kilos to lbs doesn't even go high enough to see exactly how much he weighs in lbs any more! But he basically weighs exactly 11 lbs as of today. Everything is going well with the little man right now. They've decided to hold off on bottle feeding him for all this week to give him a break and let his lungs have a rest too. We'll probably start bottle feeding him again next week with his formula thickened to the consistency of honey. The only problem with that is that it'll probably tire him out real quick and he might not be able to finish the whole feed by bottle. All we can really do is wait for him to build up his stamina and start swallowing correctly so that we don't have to thicken his formula. We just got done giving the little man a bath and when we came back from the cafeteria he gave us this gorgeous little smile! If there's one thing daddy and I do well, it's make gorgeous babies! It's just so awesome to see him like this. We have been doing a lot of reflecting lately on how far we've come and it has already been such an incredible journey. Terrifying, heartbreaking, and a million other things, but above all, incredible. And he's only 6 months old!

10 lbs 11 oz!!!

Bryton is a little chunker! He is like a little tank! It's so awesome to see him growing and catching up to what he should be. Everything is going well right now. Tomorrow they're more than likely going to try to bottle feed him again except they're going to thicken his formula to the consistency of honey to help keep him from refluxing and aspirating. It'll also help make him be a little more efficient in his sucking and swallowing.

Swingin-n-Rockin!

We got Bryton his very own swing last night and we all love it so much! I got to put him in it first thing this morning because I stayed with him last night while Daddy had to go out of town for the night. We found the most awesome swing ever! Not only is it a swing, but the seat comes off of the swing and acts as an infant seat, and later as a toddler rocking chair! The only person that loves it more than me, is Bryton! We knew he would love it because he loves sitting with us in the glider already. He had an awesome night- a huge poop at about 1:45 this morning and a few wet diapers since then. Today he'll be getting his swallow study and another upper GI barium study. We are all pretty sure that it's just reflux and hoping it can just be treated medically. He had be getting extra diuril and he had a dose of lasix yesterday and he's been urinating so much that his electrolytes and a few other things are a little out of whack so hopefully we'll be able to get that all taken care of pretty soon. Daddy and I got a chance to finally give him a bath together the other night in his awesome whale bath tub with his very own little baby loofah. All is going pretty well for right now. Go Bryton!

There is a light at the end of the tunnel! Finally!

We still don't have an exact date yet, but we are well on our way to getting our little man out of the hospital. He had a bumpy night last night and it looks like everything just moved a little to quick for him and he was just to tired to keep up. He came off of the vapo therm and started taking bottle feeds very quickly and it just wore him out. He is having a really good day today though. He isn't getting any food by bottle, but he is still producing plenty of gas out of both ends. They are going to do a swallow study by the end of this week and hopefully we'll have a new plan of action before the weekend.

Now he's just showing off.

The day Bryton was born, was nothing short of terrifying. We didn't have a clue what we were facing. All we knew was that we had to do everything we possibly could to love our son and get him through whatever came our way. And look at him now! We still have good days and not-so-good days, but lately he is just showing off with how awesome and handsome he is! He has been off of the vapo-therm for a few days now and he is doing great on regular nasal cannula. For the last couple of weeks they have been working on his bottle feeding and today they wanted to start bolus feeds- instead of being fed continuously or on for a couple hours and off for a couple hours they were going to start just giving him 3-4 oz every 4 hours and he has actually taken both of his last 2 feeds entirely by bottle so if he keeps this up and keeps making progress there is every chance that they'll be able to take out the feeding tube soon!!! It's hard to try and not get ahead of ourselves but we can't help but be hopeful and start looking forward to having our baby home with us! They haven't given us an actual date yet, but we are really hoping to have him home before Thanksgiving. We wont be able to back up to New York for quite a while, even after he's released from the hospital, but all that matters is having him with us. They say home is where the heart is- then home is going to be right here for a while. And that's just fine with us. So many people take for granted, and even can't stand some of the things that we can't wait for. We are so ready to wake up in the middle of the night to change a dirty diaper! Go Bryton!