I don't mean to brag, but DAMN! We made a cute baby!

They weaned his pressure support this afternoon from 8 to 7 and he's doing really well with it. And he looks so cute in his polo shirt and kakis!

Still doing good.

The little man is still doing awesome. They went up on his feeds the other day and the calories and he's doing really well so far. They came down from 30% to 25% oxygen and we are hoping that they might decrease the flow today. He is like a whole new baby now. He is so much more awake and interactive- he loves to look around. His voice is still really weak, but it's so nice to hear him cry. He hates having a dirty diaper more than anything. It's probably going to be another long road on the vapo-therm, but it's so much better for him and he is doing so well. We are still just so happy to be able to pick him up and cuddle with him whenever we want.

We couldn't have asked for a better day.

It didn't exactly go as planned, but it couldn't have been any better. Originally, the plan was that I was going to go to the hospital and the neonatologist was going to do the switch himself, however, Bryton had other plans. We got a call from the hospital at about 3:35 this morning because he had pulled out his tube and they decided to just go ahead and make the switch then. And he's doing awesome!!! We got to hear him cry for the first time today. And now we can hold him whenever we want- we don't have to get the nurse to help and it's not this big ordeal where we have to be afraid of losing the tube. Granted we still have to be careful, but it's just so much more comfortable for all of us. There are still some things we have to watch out for and there's a chance that he might have to be reintubated at some point but for now he's doing as good as we could possibly hope for. It is just so nice to see his whole face finally. He has the cutest little chubby cheeks!!!

The big day is coming soon.

There is talk of extubation on Thursday morning. The neonatologist is going to perform the procedure himself and we are going to try to get him on to just oxygen. He has just been doing so well on the new settings- it seems like he might really be ready. He is also extubating himself on a pretty regular basis so we know he's beyond ready to get rid of that tube. Everything this else is going pretty well. Lets say our prayers and cross our fingers everyone!

Who knew?

He is still doing really great on all of his new vent settings. They even came down on his oxygen a little more last night because he was sating so well. He is pooping and growing. We couldn't be more proud or happy right now. He is really making some serious progress and we can't wait to see what's next for him. We are going over soon but we wont know about any more changes till later. Actually, we're kind of hoping that they'll just leave him alone for another day or so to make sure that he's really had enough time to adjust and he's not over working himself. But we'll see. More later!

Clear skies ahead!?

I'm so sorry it took me so long to update, but I wanted to wait and make sure things were stable before I said anything. We spoke to the neonatologist yesterday afternoon and we came up with a plan of action. We decided that since there's no immediate reason to give him a trach, we have a little time to try and go about this differently. We are first going to try to wean his settings and get him on the VapoTherm by next week, without steroids. If it doesn't happen, we'll try to wean him again after a course of steroids. If all else fails, he'll have to get a trach. Yesterday they lowered his vent settings a little in the afternoon, and while we were visiting him last night they lowered his settings even more, and not only is he tolerating the changes, he's doing better than he was before they changed everything. All of his levels are great- better than they've ever been. He is sating well and doin his thing. He is still tolerating his feeds and pooping like he should. We don't want to get to excited, but it's really encouraging to see him do so well.

Update

The bronchoscopy went really well yesterday. They saw no reason to immediately give him a trach but we haven't had a chance to speak with the attending neonatologist yet so we aren't sure what the next step is going to be. It was all over and done within an hour and he tolerated it really well. We'll be going over in a little bit so I should have some new pictures and information by this afternoon.

Good morning NICU

Since daddy is out of town, I got a chance to sleep in the NICU with Byton an it was pretty awesome. It was so nice to be able to wake up and have him just be a few feet away. He's been doing really well. They have started to transition him onto a new formula that's overall better for him. It's not as broken down as the Ellacare he's been getting, and it has more calcium. We gave him a bath this morning and weighed him- 8 lbs 2 oz! He was supposed to get the bronchoscopy today, but that's actually going to wait till tomorrow. Today he's getting an eye exam which is no fun either. There is a chance that, if during the bronchoscopy, they feel that steroids will not help or benefit his breathing, they might just give him the trach while they're in the OR. If this is the case, we hope everyone will understand if we don't want any visitors for a while. It's going to be quite an adjustment for all of us- and I'm already paranoid about germs as it is, if he has a hole in his throat, it's gonna be a whole other story. But for now things are good. Hopefully we'll have some answers tomorrow.

Hangin tough.

These pictures are from last night. It was a good time for all of us. Not much has changed. Our little man is just hangin out doin his thing. He is tolerating feeds really well and poopin up a storm. He is starting to really appreciate his mobile which is nice. We are just waiting to see what happens on Wednesday. While I was on here making changes to the blog, I found out that if I have your e-mail address, I can set it up so that every time we add or change something it'll send you an e-mail so you know. So if anyone is interested in that, just send me an e-mail at iamrocky@live.com and I'll set it up. Thanks everyone!

Happy Birthday Daddy!!!

Even our little hero is ready to celebrate daddy's birthday today! Bryton is having a good day today, so in turn, we are having a good day today. While we wish our little man could be with us to celebrate, at least he's not far and he's doing great. We had a meeting yesterday with the neonatologist, the social worker, and his nurse so that we could all sit down, ask questions, and make sure we're all on the same page. While it's to early for an definitive answers about anything, at least we know what we need to be prepared for. On Wednesday they are going to take him down to the OR and do a bronchoscopy and there are basically 3 things they are looking for. 1) If there is any structural damage, they will be able to asses and repair it as quickly as possible. 2) If there is inflammation in the airways hopefully it'll can be treated with steroids. 3) If the main cause of his breathing issues is just the fact his lungs are still to severely damaged and scarred from being on the ventilator for so long, he will most likely end up with a tracheostomy. While the idea of a trach is scary and we're hoping to avoid it, I think it's best if we're all prepared for it. It will not be permanent. While there's no telling exactly how long he'll have it, we're told that most children have them for 2 years or less. I know it's not a pleasant thought, but the trach will allow him to start moving forward developmentally in other ways. He will be able to start having real tummy time and the best part is, it wont be so scary to hold him any more. It's a much more secure site that is also less prone to infection. Not to mention he'll be able to work on feeding orally. Nobody want's to see their child with a trach, but if this is the difference between him coming home, and not, then it's no question. With a trach we are basically guaranteed at least another 3 months in the hospital because while he has to prove that he can tolerate the change, mom and dad also have to go through some intense training. In order for him to be able to come home he'll have to prove that he can handle less support because the take home ventilator supplies significantly less support. One thing that should also help is the fact that it allows a larger airway which in itself should help. Like I said, this is not a sure thing. We will know more next week. For now all is well. They did the gastric emptying study yesterday and they didn't tell us anything we didn't already know. He has slow motility and his stomach empties slowly. He has no aspiration and extremely mild reflux. It's back to wait and see again. Yay. At least we finally got another good picture of him away. Go Bryton!!!

Another day in limbo.

It's not a bad day, but it's not a good day either. Little Man is still pooping and moving things through, but they have to regularly replace the hernia to help him out. They've been putting on his diaper a little differently so that it basically has a jock strap effect and it's seems to be helping quite a bit. This afternoon he was desating a lot so they've gone up on all of his ventilator settings, which is kind of a kick in the butt. He has been doing so well and we were really hoping to see him make some good progress in the next few weeks. He is scheduled for a bronschocopy next week so that they can get in and make sure that there is not structural damage to his air way and be able to judge the severity of inflammation. We are going to have a meeting with the neonatologist this week to discuss what's been going on and how we're going to move forward with his care. He is still hanging strong and even though things are getting bumpy right now- he is going to be great. He is so tough and he knows how loved he is- nothing is going to keep him down.

Sometimes it's hard to come up with a good title.

Our little hero is having a quiet day today. They went up on the concentration of calories in his formula yesterday and he's doing well so far. He had a big poop earlier this afternoon. They also came down from 9 to 7 on the ventilators pressure support today. The pressure support is one of many variables that will determine if/when they'll be able to get rid of the ventilator- it's not a huge factor, but something is better than nothing. Right now the biggest thing that is going to help him get off the vent is just growing and getting bigger and developing new lung tissue. Either way, he is so handsome and he is what gets us through. No matter what, we are so proud of Bryton and we are ready to do whatever we need to help him through this.

Almost 8 lbs

It has been such a long, bumpy road, I can't believe he almost weighs 8 lbs. It's a long way from 1 lb 7 oz. We knew he would get there. He is back up to full feeds as of this afternoon and it seems like he's tolerating it pretty well so far. That's the only change they've made. As soon as things get back to normal and he starts putting on weight more consistently we'll probably see more progress on the ventilator. He's sound asleep at the moment and it's looking like it'll be a nice, easy night.

It's hard being little.

Our little hero is having a rough time right now. He's had a inguinal hernia- air bulged into the sac where the testes would descend and now that's created a whole new set of issues. A surgeon came in to check him out and he fixed the immediate problem but it will have to be addressed surgically within the year, probably when he's circumsized. They had to stop feeding him because the hernia kept him from passing anything and his bowels were hugely dilated last night. His poor little belly went from 34 and 35 cm up to 39 cm, but it's back down to 34.5 cm right now and it's looking like they might start feeding him again soon- hopefully they'll start more slowly this time. I'll be sure to update later when we know more.

O.G.O.T.V.

Operation Get Off The Ventilator. Little man is doing awesome. He is poopin up a storm! And he really loves hanging out in his bouncy chair lately. They haven't done rounds yet, but his nurse for today said it looks like they're going to work on weaning some of the pressure support on the ventilator! We can't wait to get that tube out of his mouth- and I'm sure he can't either. Yesterday we got a chance to hang out with Janet and Heather for the first time- Thanks so much for coming up you guys- and for the awesome gift. He's got a little growing to do before he'll fit, but he'll get there soon! That's all for now.

A good day for all of us.

All is well today. No changes. He is just hanging out and growing. Hopefully we'll be making some changes on the ventilator this week. 7 lbs 3 oz!!!

Bryton is to awesome for his own good.

I don't know how he does it. He just never ceases to amaze us. They reduced the pressure support he's getting from the ventilator this morning and he's tolerating it really well. He is still pooping on his own- he hasn't had a suppository in a few days and he went twice today all on his own. This morning his bilirubin level was a little high again so they're starting him on a medication to help his liver move things along- the IV fluids just overload it so now that he's not on the IV anymore that should be resolved pretty quick. He is about 7 lbs and 3 oz now- he was a few ounces bigger last week, but now that he's off the IV fluids and he's still getting his lasix, so he's been able to get rid of a little of that water weight. That could also help with his breathing since fluid tends to accumulate around the lungs making it a little more difficult for him to breathe. We're gonna get there. Go Bryton!

And a special thanks . . .

To Robs Aunt Connie and our good friend Cynthia. Connie sent a box packed full of adorable clothes for Bryton that we were really needing. Thank you so much! He's getting so big so fast we didn't know what we were going to do about clothes! And Cynthia brought us an awesome bouncer, a bunch of baby toys and a really cute diaper bag. You guys are so awesome and we appreciate it so much! Thank you thank you thank you!

I know! I'm sorry!

We have just been so busy over here I feel like I have no time to get on here anymore! Bryton is doing pretty awesome right now. Last week they did another barium study and it showes no strictures or blockages so they put in an ND tube- it totally bypasses the stomach and feeds directly into the duodenal. So far so good. He is pooping regularly and on his own and he is tolerating full feeds really well. With the ND tube there has to be a constant flow so that it doest clog and as of right now full feeds is 20 mls every hour. On Friday Dr.Tuttle had the tidal volume on the ventilator increased (it makes him takes deeper breaths) to make sure that his lungs are fully inflating and if all goes well they are going to start trying to wean him off of the ventilator. It is going to be a process, but we're excited that we're finally getting to that point. The little man has been enjoying hanging out in a bouncer chair lately- it's nice to get out of that bed.