A good day today.

It has been a pretty good day for our little man today. He is up to and tolerating full feeds and off of the IV fluids. He pooped twice and is doing well on the ventilator settings. His PIC line came out today so he officially has no IVs or any tubes other than the ET and OG tubes through his mouth into his lungs and belly. It's amazing to see the way he progressed and he went from having a ton lines and tubes connected, and now there are none. He is looking a little puffy again, but not nearly as bad as the 1st time. Tomorrow we might be able to help give him a real bath! It's not a sure thing yet, but we are excited anyway. It is weird to look at a basin a little bigger and taller than a phone book, and know that it's a full sized bath tub to that little boy! I can't believe it's almost been 3 months! What an awesome journey. And we are still just beginning!

He's making progress.

Bryton is just amazing. There is no other way to put it. We can't believe the things our little boy has been through, and managed to come out on top. We have our good days and our not so good days, but he is just such a fighter and has such a strong will to survive. It's amazing. He is amazing. The issue with his lung last week took us a few steps back, but he is making progress again. He is almost back up to full feeds and tolerating it well. He is pooping on his own and continuing to tolerate the adjustments on his ventilator. Hopefully within the next few weeks, he will be able to maintain his body temperature and move into an open crib. As soon as he proves that he can tolerate full feeds for a while, and the doctors are comfortable with his status, not to mention certain that he wont need any surgical procedures, we'll be going back to Christiana. Yay! It's nice to have him so close to us, but Christiana is like home. We miss it a lot- mostly because of the wonderful staff that we know take such amazing care of our son. A.I. duPont is a nice facility, but it's different. For now they don't plan on making any major changes and we are all pretty confident in they way things are going. He looks great ( 4 lbs 7 oz!!!) and he is making tons of progress. We still see a small amount of swelling, but nothing substantial. He is such a blessing and we just can't wait to finally bring him home and have our family together. Thank you so much everyone for all of your comments, e-mails, cards, and phone calls. We don't always have time to let you all know how much it means, but we would be lost without all of the love, support, and comfort we've had from you. You're all wonderful and we appreciate you so much. Have a great night everyone!

We knew it wouldn't be easy . . .

The last few days have been pretty rough on our little man, but he continues to take it like a champ. It seems that he has a mild infection in his right lung which has caused it to partially collapse. It's a little complicated, but because of the infection, they've stopped his feeds. Digesting food is the most energy consuming thing the body does, and he needs all the energy he has to fight this infection. So he is not being fed right now, he is on antibiotics, and he has already been given a blood transfusion to help him out. It is the hardest thing to watch him have to work so hard to do things we take for granted, but he is doing so well and we are so proud of and humbled by our little son. Thank you so much everyone, for all of your love and support- especially the last couple of days. We are just so used to him doing well and making progress, that it's especially hard when he has bad days. They are telling us that this is pretty common with preemies and that he is taking it all really well- he doesn't have as much energy as he usually does, but he's not a limp noodle either. It's kind of back to wait and see for now. The other day Uncle Casey and Aunt Lindsey got a chance to come meet Bryton for the first time- It's so nice to have people in the family that are on the same level. It's one thing to meet other people in The House and at the Hospital that are going through things, but it's just different. We finally got to meet Lily who is adorable and wonderful in so many ways. We can't wait for Bryton to "put on his big boy pants" and be able to play- as Lindsey says. It was a really good thing for all of us I think. Well that's all we have for now- you'll know if anything changes.

Happy 1st Fathers Day!

He doesn't look comfortable at all . . . . ;-)

Daddy holding his first ever Fathers Day gift

What a day. Bryton and I are so fortunate to have Rob in our lives. He is an amazing father, and a wonderful man. I can honestly say that I could not ask for more. I have a beautiful, amazing son who makes me so proud, and humbled every single day- and his father is more than I ever dreamed of. Bryton is having a great day today- he is wearing clothes and doing well in room temperature. He is up to 7 mls an hour and tolerating it fine. They tried to take him off of the ventilator and put him on the vapo-therm yesterday for about an hour, but he's just not ready yet. But now that he's tolerating being at room temperature, they're going to try to move him into a crib sometime this week. He's doing better than we could possibly hope for and we are so excited, and proud. Happy Fathers Day from us to all you Dads!

Bryton is still Rockin'

Everything has been going really well with our little miracle. He continues to make progress everyday. He is up to 6 mls an hour now and on pretty low ventilator settings, so we are hoping that actually might be gone in the somewhat near future. He is pooping pretty regularly, which is really awesome. Mommy and Daddy finally have our own transportation so going to spend time with Bryton is easier than ever. Overall, we're doing pretty good. Thanks for everything everyone.

Yay! More poop!

Today has been good to our son. His vitals are good and his vent. settings are the same, and he had a HUGE poop this evening! They gave him another suppository this morning because he had a lot of residuals building up, but at about 5 when Mommy helped with his cares, he had a nice full diaper, and a "barium plug". The barium they use in the contrast study solidifies and literally plugs up the bowel, so hopefully things are going to continue to make good progress. He is looking a little yellow because of high bilirubin levels, but they're giving him some meds to help with that. The only reason he has high bilirubin levels again is because he's been on the IV fluids so long that his liver can't filter it all for him. It will get better with time. We are just so incredibly happy to see the progress he is making. He looks better everyday and he is getting closer to coming home with Mommy and Daddy. We can't wait!!! Have a good night everyone!

Bryton defines "Awesome"

The little man continues to make progress and make his parents proud. They have already increased his feeds from 1ml every hour, to 3 mls every hour and he's tolerating it just fine. They gave him a suppository last night, and also started him on an anti-seizure which helps with the way the nerves in the bowel fire, to help move things along and he's handling it like a champ. He already had a good sized poop last night and this afternoon. We are so excited that they have been able to come down on his ventilator settings and he is doing great- they have come down to a rate of 22 bpm. In order for them to try to take him off the ventilator he has to be between a rate of 10 - 20 bpm so we are really happy about that. He still has a little puffiness in his face, but not nearly as much as he did a few weeks ago, and he is looking more like his handsome little self.

4 lbs!!!

Sorry it's been so long since we've posted anything, but we haven't had much internet access in the last few days. Our little man is doing great! He is officially 4 lbs and doing wonderful! He is going back and forth with the puffiness, but he's looking better everyday. Mommy got to hold him for almost 2 hours yesterday and it went great! Now we are just waiting to have regular bowel movements. He is tolerating being fed, which is awesome, and hopefully that will help him to start making progress. They were finally able to come down on his ventilator settings which is a good sign. We are hoping that when he's ready to come home, the only thing he'll be hooked up to will be apnea monitor. We'll post some more recent pictures later. Have a great day everyone!

Bryton is reaching new levels of awesomeness!!!

It has been a pretty good day and night for our little man. They tried to feed him yesterday, and it was not successful- the barium was still moving through his system and not allowing the formula to pass, so they decided to give him a rest for today. They started him up again at about 6 this evening, this time with breast milk, and he had a pretty good size stool a little after 8, so as long as he continues to tolerate it, they'll continue to feed him. The respiratory therapist was also able to bring him down from a rate of 30 to 27 bpm. He's still on 35% oxygen, but that's alright. He has been happy and stable all day with his usual de-sats here and there, but he doesn't drop to low, and he can bring himself back up pretty quick. We are just really happy with the progress he's making, and if he has a few more good days like this, maybe we'll try the Kangaroo Care again. Yay Bryton!

Bryton continues to be awesome!

It has been a few good few days for the little man. His puffiness continues to decrease and he looks more and more like himself everyday. Last night while Mommy and Daddy were visiting with him we got a chance to spend some time with him while he was very awake and alert. He loves to look around and observe and he makes lots of funny faces. His eyes are still very premature so he doesn't see us so well and he's still working on controlling his eye movement, but he's made tremendous progress in that department. The barium is still moving through his GI tract, but very slowly. They haven't done rounds yet this morning so they might order another x-ray to see what's going on, and there are a few medical options to help get everything moving along. Also, he was two months old yesterday and due for his immunizations so they'll have to discuss that this morning as well. Other than that, things are looking good. He is sating fine, and the nurse assured me that he his very comfortable at the moment. Daddy and I will be going over to visit later, so more pics and info then. Have a great day everyone!

Good news!

They did the second half of the barium study on Brytons' upper GI yesterday, and as far as they can tell there is no stricture, therefore no need for a procedure! It seems like his bowel is just still slowly recovering from the NEC and it's just taking time to move things along. They are going to continue to keep an eye on it for a few days, but if nothing else has to be done, we are really going to push to have him taken back to Christiana. His puffiness is going away a little more everyday, and so far nothing has developed in the blood culture to suggest that he'd have an infection. Overall, it has been a good 2 days so far and he is much more stable than he was when he first came to A.I. duPont. 

Finally a new update!!!

Sorry it has been a few days since I've had a chance to update- it's been very busy over here. Bryton is doing well and he is more stable now. The other night was not very pleasant as they found out that his intubation tube was going to far down and into the right lung, and not getting air into both lungs, so he was constantly de-sating and was very uncomfortable. They resolved that problem and he's doing much better now. He is a little less puffy than he was a few days ago and he's been able to open his eyes again, even though it looks like it's not very comfortable. He also had a good size stool yesterday and his bowels are sounding pretty good. He was supposed to have had an x-ray this morning to see what's going on with the barium in his system, but we haven't heard anything about the results yet. Daddy and I are getting ready to go over and see the little man in just a few minutes so hopefully we'll have some news and pictures for you in a bit.

God- grant us the serenity to accept the things we cannot change . . .

It has been a very trying 48 hours for the three of us. Bryton is having a few issues and it's just not fun to watch. He is very, very puffy- for lack of a better word. He is retaining a lot of fluid which is making it difficult for him to be comfortable and it does have an affect on the way he's breathing. His eyes are basically swollen shut at this point. We also just found out that he does have a tiny PDA that might be averting some blood past his lungs and making it hard for him to properly receive and distribute oxygen.   He didn't go in for the second part of the barium study today, because there is still a lot of barium in his system from the first study. This could be part of his discomfort. A.I. duPont is a beautiful facility, but we really wish that we could have the nurses from Christiana with us. Especially now that he's having some issues. We consider some of the women we were working with to be like family. It's amazing the bonds you form with people you never even knew you'd meet, especially when they're caring for the most important person in your life. Maybe we were lucky, or spoiled, or whatever you want to call it, but we are so grateful and we really miss what we had going at Christiana. It's nice to have our son closer to us, but I'd personally rather have to deal with the bus and the shuttle and all of the crazy scheduling to have him with people we know and trust. He is doing ok right now, and we are hoping to get back over to check on him one more time tonight. We aren't even putting our hands in the isolette right now because he's so sensitive. But tomorrow is a new day, and hopefully it will be a good one.

A big day today.

Bryton was a very busy little man today. He was moved from Christiana to A.I. duPont at about 4:45 this morning and everything went well. It's not his favorite thing to be moved, but he handled it like a champ as usual. He had a baby gram this morning, and they did the first part of a two part barium study. They did the study on the  big intestine this morning, and they'll do the upper intestine in the morning, so we should have the results of both by tomorrow afternoon. The facilities are nice, but we are sad to say goodbye to the Christiana NICU staff- they are amazing. We were lucky enough to run into two of our favorite people at A.I duPont this evening. It's just going to take some adjusting- for all of us. We are happy that he's so close though- it's very comforting to know that we can go see him anytime. Other than moving him, there haven't been any changes. He is up to 1490 grams, but part of that may be water retention, because he does seem a little puffy. He's still the most handsome little man ever though! We're going to get in as soon as we can tomorrow, so we'll keep you posted. Good night everyone! 

p.s.

I forgot to mention that he was weighed last night and he's 1450 = 3 lbs and a little more than 3 oz. Yay!

Bryton is even more awesome.

It has been a good night and a good day for everyone. Last night the little man was de-sating a bit so he's back up to 42% oxygen, but he's doing great now- very stable. Nothing else has changed. We have decided to go ahead and move him to A.I duPont this afternoon. Daddy and I went over to check out the facilities last night and we're very happy with them. It's a beautiful hospital and it's definitely more geared toward children and families, not that Bryton will notice. He is most likely going to have his own room, but there's a chance that he'll have to share with one other baby, and we might even get lucky and have a room with a view. We had a chance to take a tour of the entire NICU with one of the head nurses and learned about all of the policies and procedures. It's a lot like where we are now, just a few small changes. We are so excited to have him close to us- he is literally going to be across the street and we can visit him any time we want without having to rely on the volunteers or the shuttle. We have already been over to see him at Chrisitana this morning, but we're hoping that we'll be able to go see him this evening across the street. Lets all cross our fingers that the transport goes well and that in a few hours, he'll be closer to Mommy and Daddy. Go Bryton!

Movin' time

There are going to be some big changes for Bryton tomorrow. He is still having some bowel problems, and his belly is very distended again, so the doctors have decided that it would be best to move him to A.I. duPont to do the barium study, and possibly operate. The move will probably happen during the day tomorrow, and thankfully it's a 15-20 drive at most, so he wont be in transport for long. There are a few really awesome things about him being at A.I. duPont; 1) He will be right across the street from Mommy and Daddy so we will really be able to go see him anytime we want, 2) He will be in his very own room, but still closely monitored, and when we decide to spend the night, we can sleep in the room with him, and 3) Even though there will be an entirely new nursing staff, we will continue to work with the same practice of doctors. We aren't to excited about the actual transport part, because who knows what could happen, but we think this would be a good change for all of us. There is a chance that he'll go back to Christiana after he's recovered and tolerating feeds, but there's no telling at this point. Other than that, everything is fine. He had a good night and a good day and they haven't really made any other changes. They did adjust his ventilator settings to what they should be according to his weight, but that's a good thing. Daddy and I are getting ready right now to walk across the street to check out the NICU facility at A.I. duPont, and then hopefully we'll make it over to see our little man. More info. and pics later!

Bryton is still awesome!

Bryton is still doing great. Mommy didn't get a chance to hold him last night because he was in the middle of a blood transfusion when we got there, but that's o.k. , he just had a low hemoglobin level so they gave him a little extra. Nothing else has really changed- he is still clothed and swaddled. He was getting a little chilly so they turned up the temp a little bit, but he's good. We still haven't had a chance to speak with and of the doctors about the head ultra sound or the baby gram, but according to the nurse, nothing has really changed. The head ultrasound was looking great, but he still has some dilated loops in his bowel that they're not happy with. Now they're saying that when he's closer to 1800 grams, then they'll probably take him to radiology to do the barium study. They could come up and do it in the NICU, but they don't want to risk it- if it doesn't work properly, they don't want to have to to it a second time, so they're going to wait until they can do it right. Everything else is going pretty smoothly. We'll be going in later today, so hopefully we'll be able to talk to a doctor about all of these things. Have a great day everyone.