Wednesday, October 28, 2009

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!

Friday, October 23, 2009

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.

Monday, October 19, 2009

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!

Wednesday, October 14, 2009

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.

Tuesday, October 6, 2009

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!

Sunday, October 4, 2009

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.

Friday, October 2, 2009

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!