Busy day today

Today has been busy for our man. This morning he had to be extubated and re-intubated because mucus was building up on the inside of the tube and it was making it hard for him to breathe. They did x-rays on his abdomen and nothing has changed yet. They also gave him a diuretic because it sounded like there was some fluid around his lungs and they stared the dopamine again to help his kidney function. He seems to be handling it pretty well, just napping for now. They wont be doing any x-rays again until saturday.   

More pics . . .

We just did his cares and everything is looking good. The little booger is already trying to get his hands down his pants when I change his diaper! Men!!! He is back up to 640 grams, about 1 lb 6 1/2 oz! The resident came and told me that they are going to take him off of one of the antibiotics because the Disease Control Specialist said that it's just not necessary at this point. He will however continue on the other antibiotic and the anti-fungal for the next 8 days. Go Bryton!!!!

As you all know . . .

We have spent a lot of time here in the NICU talking to all of Brytons Dr.'S and Nurses about what's going on with him and doing our very best to learn about his situation and the different ways they are taking care of him. We have done a lot of research on the internet and in various books to help us better understand what's going on right now and what we could be facing further on down the road. One website I've found to be particularly helpful is TheTinyMiraclesFoundation.com It offers a glossary of common NICU terms, a ton of different resources and links, and some other very helpful sections. I have used it frequently, and it has been a huge help, so if you're just interested or not sure of something I've posted, this is a great place to check.

Today . . .

He looks more pale in these pictures than he actually is. They just came out kind of dark and I lightened them. He actually has a better tan than mommy and daddy!

So we are looking good today, they haven't made many changes. The resident just came and spoke to me and they are officially calling his belly problems NEC but they are really not too worried about it at this point. His bowel just basically isn't working correctly, there is a pocket of air in his bowel that hasn't moved in a few days and all they can really do at this point is continue to treat the bacteria (Klebsiella) causing the abnormal bowel function with the antibiotics and keep an eye on it's progression. His blood cultures from the 24th and the 27th are still negative, so that's a really good sign. There are some very serious problems that NEC can cause, but at this point it doesn't seem to be getting any worse, and it wasn't very bad to begin with, but they will be keeping a very close eye on it. They will be doing x-rays everyday until the obstruction is gone. He is in his 6th day of the 2 week antibiotic treatment, and he is also on an anti-fungal as a preventative measure. He wont be getting fed at all during the antibiotic treatment, so they are going to increase the amount of calories, specifically glucose, in his Glorified Gatorade, as the nurses call it. He is also going to continue getting his lipids and fats. Even without the dopamine, he has continued to have a good urine output and tomorrow they'll be checking his kidneys and liver to make sure everything is ok. Being on the Glorified Gatorade over extremely long periods of time can potentially cause serious long term problems with the liver, but this is usually only after several months. They just want to check for certain enzymes that will tell if there is any damage being done, just to be safe. He wasn't weighed last night, so they'll do it today at about 4 p.m. and I'll be sure to update then.

a couple pictures

Bryton is doing well today. They took him off of the dopamine and they are happy with his urine output and kidney function. We are still keeping an eye on the infection, but other than that, everything is looking good. I didn't get to hang out with him for very long today, and he was asleep the whole time, so no pictures with his eyes open yet, but at least you can see how cozy he looks in his snuggle up.

lookin good.

Not much has changed with our man. He did go back down to 520 grams, so he lost less than half an oz, which the nurse said is nothing to be worried about. He is not being fed right now but he is getting all of his nutrition and calories through his IV right now. The residents still haven't done rounds yet this morning, so we don't know the plan for the day just yet. I promise there will be pictures by tonight.

Hello, Blue Eyes!!!!

He is opening his eyes! The right more than the left, but we can still see those gorgeous baby blues! They opened sometime last night, and we got to see them today! It's such an amazing thing to see. I promise I will get some pics asap! Everything is looking good with our man today. One of his blood cultures came back positive for the gram negative bacteria again, so that's not quite over, but he is dealing with it very well. He will be on antibiotics for at least another 10 days, and they will be keeping a close eye on it. They are happy that it's taking much longer to develop and show anything in the culture which means that there is less of the bacteria, and it's not as strong as it was initially. They backed off his dopamine from a 5 to a 3 and they are really happy with his urine output and kidney function. All of his levels are looking good and they aren't changing anything. They did do a head ultrasound on friday, and we had to wait till today to get an official reading, but it's looking great. There has been no additional bleeding, and it looks like the clot that's in there has decreased a little in size and is metabolizing back into his system. He isn't being fed right now because he basically just can't really tolerate it yet. He hasn't pooped in almost a week, and when they feed him, his belly gets distended and discolored. They did to an x-ray and it didn't show anything serious, just a little irritation and irregular bowel movement, which isn't abnormal at this age. So we are pretty happy right now. We are so excited to see those eyes! He has just had such a busy time lately, we really want to keep it calm and quiet around him. He looks exhausted.  But better than ever. He will get weighed tonight, so we are hoping to see some more weight. Pictures asap!

Just spoke to the Dr. . . . .

I spoke to one of the residents a little while ago and not much has changed. They backed off on his dopamine a little so his hard rate went down a little, but no more than they expected it to and not enough to be worried about. His last 2 blood cultures came back negative for the bacteria, and if the 3rd one comes back negative tomorrow, they'll be taking him off of one of the antibiotics. Also, his spinal culture came back negative and everything is looking good respiratory wise. They did stop his feedings again because his belly became a little distended and bile was coming up in his feeding tube, so they did an abdominal ultrasound just to be safe, but we don't have the results yet. The resident said it's probably just a sign that he's not ready to tolerate breast milk, but they are continuing with his electrolytes and calories, and he'll be getting more fats and lipids tonight. Also they'll be weighing him tonight, so we're hoping for a few more oz on the little guy. Everything else is pretty stable and in good condition right now, so we're pretty happy. I'll be back on when we get the results from the ultrasound.

Good mornin' to you

Today has been another good, lazy day for our man. Nothing has changed and they haven't done rounds yet, so there is no new news. His nurse said he's just been hanging out today, not giving her too much trouble. Tomorrow there will be a radiologist at the hospital to give us an official reading of his head ultrasound, so pray for good news! Our little man has already had to fight so hard to just be here with us, he needs all of the help we can give him. Thanks everyone for all of the time you take to be involved and share your love and support with us. It means so much to the 3 of us.

We love good days.

Sorry there were no posts or pictures yesterday. It was a long busy day for all of us. They were able to get a new PICC line in yesterday, so we don't have to worry about a CVL. The results from the last head ultrasound came in and the Dr.'s here said it doesn't look like much has changed, but we will be getting an official report from the radiologist on monday. He went up another 10 grams, so we are at 630 grams, and they started feeding him again yesterday, so everything looks good. He has been very stable and he's just doing his thing for right now. We are here with him, but we haven't spoken to his nurse yet, so if we find out anything new when she comes in, I'll be back on to let you know asap.

YAY!!!

It looks like Brytons eyes will be opening soon! There is a little tiny opening in his left eyelids so who knows, it could be be any day now! And, he is 620 grams ( 1 lb 6 oz ) so he's almost back up to his original birth weight! They aren't feeding him right now, and he probably wont be fed again until he has a negative blood culture ( until the infection is gone ). And they removed the IV from his scalp, so hopefully they'll be able to do another head ultrasound soon. Yay! Go Bryton! 

we're here

We finally made it to see the man. He is doing great and nothing has changed. What a trooper! Daddy still isn't feeling well so we are trying to figure that out and the lactation nurse said that part of why I'm so tired could be because I'm not eating enough!!! Overall, we are doin pretty good today. I know i keep telling you all how great Bryton looks, but I haven't had a chance to get any pictures up, so you don't even know what I'm talking about! I promise that is my next mission though. I will try to have some more up by tonight or tomorrow!

Another late morning . . .

Bryton is doing fine, they haven't made any changes. He still weighs 600 grams so he hasn't gained or lost any weight yet. They will start talking tomorrow about wether or not they want to attempt another PICC line in his left arm, or if they want to do the CVL. A PICC line is obviously our first choice because inserting it is much less abrasive, however a CVL has a much lower chance of infection. We wont know for sure until sometime tomorrow though because they have to wait at least 48 hours since the last line was taken out before they can put a new one in. It has been another slow, late day for us today. Daddy still isn't feeling so great, there is something up with his stomach. And Mommy could sleep forever. I feel like no matter how much or little I sleep, it's just never enough. We are going to the hospital late today because we're going to stay the night. We wont be leaving the house until about 6:30. I promise I will get more pictures up as soon as I possibly can, but it's not that easy. We don't have the card reader to get pictures off of our camera and not all of the nurses are willing to let us use the one they have in the NICU, so I will do what I can as soon as I can, I promise. We want more pictures too. Today should be a pretty mellow day for us, so I will only update if anything happens. We want to try to take a walk and get the room cleaned up. Peace.

So many Dr.'s to talk to!

Another Dr. just came to speak to me and when they did his blood tests, his hemoglobin level came back pretty low, so they're going to give him another blood transfusion just to help him out and keep him from getting to tired. Nothing to worry about. Pretty normal these days.

all Snuggled Up

I have been here with Bryton for a couple of hours now and everything is fine. He is stable and all of his normal labs are coming back fine. They did have to remove the PICC (peripherally inserted central catheter) line that was going in his right arm because some of the gram negative bacteria were sticking to it and making it hard to flush and get a blood sample. One of the Dr.'s explained to me that since they really need a good line that they can pull blood from, so they will be talking to the surgeon about inserting a CVL. This is a line that will be inserted by a surgeon through a tiny incision in his neck and will go in directly through the jugular. The surgeon would come into the NICU and everything would be done right here at his bed side. It will take about an hour to do, and that line will be in there for a while. They would give him something for the pain, and also a paralytic to prevent him from moving around while the surgeon is working. This is not a sure thing, just an option to be considered. I just spoke to Dr.Tuttle and she said that they will be looking to see if there is and appropriate insertion site on his other arm before they decide wether or not to go through with the CVL, but that is all going to have to wait until friday. Everything is looking good for now. He is stable and in what they call a Snuggle Up, which is basically like a little tiny baby sleeping bag, and they still have the k pad under him to make sure he maintains his temperature, but the nurse did put a gel pad under him to make sure he doesn't develop any flat spots, and I think it also helps make sure that his posture wont be affected in the long run. So that's all for now. I'm not sure if we'll be hearing much more tonight, but if we do, you will know about it.

P.S.

If you click on the PICC and CVL links above, they will take you to Wikipedia for a more comprehensive overview of what the both mean.

Getting ready . . .

to go see the man! I decided to hold off on my errands today, Rob had some things to take care of out of town, and I just feel better knowing that one of us is close. When we get a car situated, it will be different, but while we have to depend on the volunteers at the House and public transportation, I'd rather stay near Bryton. I just spoke to the nurse and nothing has changed- he's still doing well and hanging in there. The Dr.'s are doing rounds right now, so there might be more news by the time I get there. 

Off to a good start . . .

Everything is looking good this morning. He still has the IV in his scalp which I'm not sure either of us wants to see. The blood culture they took yesterday already came back positive for bacteria, which we expected, and they are going to do another one today. The spinal tap isn't showing anything yet, and that we're happy about- we DO NOT want meningitis. Who does? He is still on the dopamine so his urine output and heart rate are good and he is obviously still on the antibiotics. Last night he did drop his heart rate, but they're not to worried about it because he is probably just really tired. I'm not sure if I mentioned this yet, but the residents decided that he should only get cares every 6 hours instead of 4 because it seemed little to much stimulation and not enough rest for our man. It's hard being little. Oh! And, his umbilical cord fell off on Sunday. I wanted to save it, but it was just too small. You can barely see his belly button! I asked and they said it will look perfectly normal when he gets bigger. So we are pretty happy with everything for right now. We are all hanging in there the best we can. We are so proud of Bryton. I can't believe  he will be 2 weeks old tomorrow! We will be going into the hospital a little later today, but we do have some things to take care of, so I'm not sure exactly when we'll get there. The sooner, the better. Go Bryton!

Took em long enough!!

So they finally got the results from the blood work back and everything looks pretty good. He had IV going into his foot today, but there was a lot of blood around the insertion sight, so the nurse tried to clean it up and save the site, but it wouldn't flush, so they had to put the IV in his scalp so he can receive the antibiotics. We haven't had a chance to see it yet, and we probably wont make it there till later tomorrow because we both have some errands to run, but the nurse assured me that he is handling it just fine. Since he doesn't really perceive pain the way we do, it's not really bothering him or stressing him out. Other than that, nothing has changed and they are still happy with how he's doing. It's already getting pretty late here and we have a long day tomorrow, so that's all for now. 

411

There is nothing really new to tell just yet. One of the women that works in the lab came up to draw some blood and kind of explained to me what they'll be looking for when they get the samples from his spinal tap. They will take 3 tubes of spinal fluid and look for different things in each one- in one, they will check is white and red blood cell count, another they will be looking at his protein and glucose levels, and they will culture the 3rd sample. We will have the results of the first 2 samples sometime today, but they have to watch the culture for 48 hours to determine if there is any bacteria in the fluid. He is still stable and looking good though. I'll be on again when we get the results.

More news . . .

Dr. Tuttle just came and spoke to us during rounds, and despite the bacteria in his blood, she had nothing but good things to say. She said it is a really good sign that he has been so stable and the infection doesn't seem to be progressing at all. The infection is being caused by bacteria that normally lives in the GI tract, but because he's so premature and his immune system isn't fully developed yet, the bacteria was able to cross that boundary and move into his blood stream. It's really not as bad as it sounds, and they already started treating him with antibiotics yesterday as a preventative measure, and will continue that treatment for probably the next two weeks. They are also going to get a sample of his spinal fluid just to make sure that it hasn't spread anywhere else, but she is pretty confident that he is going to pull through this just fine, and so are we. It is amazing how much of a difference 3 oz can make, but between that and the way his skin is developing, he really looks so much better. We can't wait to so what kind of progress he will make in the next few weeks. We are going to be here for most of the day so I'll be sure to update more later if anything changes.

Some Good, Some not so good.

He is doing much better with not dropping his heart rate when they do his cares. Yesterday and the day before it was getting as low as 40 something and 70 something, but the lowest it has been since last night is 128 and 137 which is much, much better. Yesterday they sent a blood culture into the lab and they did find some bacteria, but they are already giving him antibiotics and his nurse said they'll continue to monitor that closely and they will probably keep him on the antibiotics for another week, just to be safe. She also mentioned that the bacteria could have been what was causing to drop his heart rate so dramatically because it basically just makes him tired and not feel well- just like if you or I were to be sick. He did put on weight though! He was 510 grams (1 lb 2 oz) on Sunday, and today he is 600 grams (1 lb 5 oz)!!! It is a pretty dramatic jump, so one of the residents is going to take a look at his feet and the area around his testes because he might be retaining some extra fluid, in which case they would give him a diuretic to help him pee it out because the added pressure can make it harder for him to breathe, but it looks like he's breathing just fine. This morning I made it in to see him just in time to watch the nurse change his bedding that he peed all over! It was a lot of pee for such a little man! Plus a soaking wet diaper! We will probably be here for most of the day, and one of the Dr.'s is supposed to talk to us at some point, so I'll let you know what's up.

Having a good night.

So, the nurse said that the last time she did his cares, he didn't drop his heart rate much, he only did it once and it wasn't as low as it has been. Nothing else has really changed. We both took turns letting him old our fingers tonight- I can't believe how tiny those hands are. It was nice to feel his little fingers squeeze our pinkies. I'm just so glad we are here right now. It definitely makes us both feel better to be close to him. Today at the house, Daddy picked up a blanket for our man. It is a a handmade blanket from Project Linus- an organization of volunteers that hand make blankets for children that are seriously ill, traumatized, or in need. It is a beautiful blanket and we have it over the top of his deluxe penthouse suite to help keep it all dark and cozy in there, just the way he likes it. It's a pretty great program, and we are looking forward to giving him the blanket someday when he is big enough. You can check it out at www.projectlinus.org Well it's getting late here, so we're going to get to bed pretty soon. I think they were supposed to weigh him a little while ago so I'm going to go check on that in a min. We hope everyone is doing well. More soon.

Finally made it!!!

He looks so good today! His skin looks sooo much better and he hasn't been weighed yet today, but he looks like he might have put on at least a little weight. When he breathes, you don't see his ribs anymore. They do have his oxygen all the way up to 40% which concerns us, and they said that when they do his cares, he is continuing to drop his heart rate extremely low, which we don't like at all, but they said it's probably that he is just tired from working so hard. It has been a long 11 days. He is also on a sodium drip right now, and they're going to pay close attention to that. We just really need all the prayers and positive thoughts we can get right now- we know that it is a lot to ask for him to work so hard just to be here, but we love him so much and want him to have every chance we can give him. Thank you so much for all of you love and support everyone. It means so much to us and we really need it right now. Bryton really needs it right now. I really want to work on the Kangaroo Care, but I just don't think this is the time for it. The nurse said that his heart rate drops practically the second they open the hand doors, so I don't want to mess with it just yet. I hope he just needs to rest. I'll be sure to update again later if anything changes. Thanks everyone!!!

Running late today . . .

Sorry it took so long to update today. We had a weird morning. Bryton also had an interesting morning. When they did his cares this morning they noticed that his intubation tube was clogging so they took it out and re-intubated him. When they did this his heart rate dropped really low so they had to do a little compression to help him out. Also he isn't urinating the way he should be so they are going to up is dopamine which will help them get a urine sample to send to the labs to figure out why his sodium levels have been low, and they are going to give him a sodium supplement until they figure out what's going on there. They have done a couple of ultrasounds on his abdomen today and they've found that he's having a hard time digesting the milk so they have stopped the feedings for now and they'll be getting him calories through the IV. Other than that everything is fine. He doesn't tolerate his cares well, he really drops his heart rate so they have gone from doing his cares every 4 hours to doing them every 6 hours so they don't mess with him to much. He is stable again so we are happy about that. Since we didn't make it in to see him yesterday, we are going to stay at the hospital tonight. The next time he pees they're going to send in the sample so hopefully that will be sometime tonight and there should be more news later. 

Don't worry, Be happy.

Bryton is doing well. They haven't made any changes and the Dr.'s are pretty happy with everything right now. He just got new fluids for the night and he will eat again at 9 tonight. Daddy is feeling a little better, just tired at this point, and I got all of the laundry done and cleaned the room. It has been a pretty low key day for us, but I think we needed it. We can't wait to go see our man tomorrow though! I'll be calling the nurse again in a few hours and I'll only be posting if they make any changes. Thanks everyone! Love you all!

Bring on the chubby cheeks!!!

I just spoke to the nurse and our man is doing fine. He has lost weight since delivery - we started at 1 lb 7 oz and then he went down to 1 lb, but now we are at 1 lb 2 oz and since they are feeding him every 3 hours we should see some pretty good weight gain in the near future. It is a little unnerving to know that he was down to just 1 lb, but all of the Dr.'s and nurses assured us that it's totally normal- all babies lose weight after they come out of the womb, and it's usually just fluids they were holding in that they just don't need anymore. They did decrease his dopamine and it's looking good. His heart rate and urine output are where they want them to be and other than that, there's nothing new to tell. We are sill at the house. Daddy is resting and working on getting better and I am finally getting caught up on some laundry and cleaning up the room. Overall it's been an o.k. day. It really sucks that we wont actually be seeing our baby today, but we just really don't want to risk it with daddy having a fever. There's always tomorrow though. I am feeling great so even if he's not doing so hot, I will probably get myself cleaned up and go hang out with Bryton for at least a few hours. We hate to be away from him so much! Even the nurses started to tell us that we need to get out a little though, so it's a little break for all of us. More soon!

Good Morning.

We are getting off to a slow start today. I just spoke to the nurse and everything is looking good. They had him under the lights again yesterday, but they took them off this morning because his bilirubin went down to 1.7 when they checked it and they are going to check him again tomorrow morning. The nurse practitioner also decided to up his feedings to 1 ml every 3 hours instead of every 6 hours, so that should help with just about everything. They are also going to talk about reducing his dopamine drip because his urine output and kidney function are doing much better. They are really trying to cut back on the number of blood samples they have to take because he really does not like it and they don't want to have to give him to many blood transfusions. So it's looking pretty good today. I'm not sure if we're going to make it down there today because Daddy is coming down with something and we don't want to risk tracking it in there since Bryton is so prone to infection right now. Not to mention transportation is really tricky on weekends so we might work on just making sure we stay at the hospital when we know it's going to be like this and yesterday was a very long day for both of us and we could really use some time to get our feet on the ground. I'll be calling his nurse pretty frequently so I'll do my best to update as much as possible. 

Still doin good

We stayed at the hospital again last night. We got a little rest, but not much. Everything is still stable and looking good, nothing new to tell. His glucose levels are still fluctuating but it's nothing to worry about. We met with the neurologist this morning and she just kind of went over things with us again. There has been a tiny bit more bleeding on the right side of his brain, but nothing significant. They are going to continue to  monitor his head closely to make sure it doesn't change in size or shape at all, and the neurologist was happy with it. She did make sure to let us know that children with a grade 4 bleed do pretty uniformly have some kind of developmental problems in the long run, but there is no way to know yet what we're looking at. The left side of the brain mostly controls motor skills on the right side of the body so there is a chance of some sort of physical problem later on, wether he has a hard time walking or one side of his body is weaker than the other- there is no way to know. One thing they do keep reiterating to us is the fact that there are parts of the brain that haven't even developed enough to be damaged yet and it's very possible for other parts of the brain to compensate for some of the damage that has already been done. She also said that it's a good sign that he reacts to light and sound- however to much light and commotion do tend to stress him out so we want it to be calm, dark, and quiet- at least he is reacting to these things. It's nice to see him able to go from his back to his belly- he seems much more comfortable. Earlier he was all sprawled out on his back taking up as much room as possible in his little deluxe sweet. We are going into Milford today to get some more clothes and things from Cathy's house- but we don't want to be gone for more than 3 or 4 hours. We are so excited to see Cookie and Hugh!!! So at least things are stable for now. We are so happy with the progress our man is making. I'll let you all know more as soon as there is more to know.

Bryton King Hamilton

So just so everyone knows how we came up with his name- I'm going to break it down for you: We wanted a name that would, in it's own way, represent where our little man comes from. Bryton came from Brighton Beach- a well known neighborhood in Brooklyn that we were actually considering moving to before we ended up in Delaware. King because Brooklyn is known as Kings County where we started our lives together and where the little guy was conceived, and then Hamilton obviously because that's his daddy's last name. So thats how Bryton King Hamilton came to be. We thought it sounded strong and unique, without being weird enough for him to be teased for it later on. Kids can be so cruel. So that's it folks, Bryton King Hamilton.

New Pics!

I almost can't believe how tiny he is! it was so nice to make this contact with him though. He needs to know that not all touch is bad and his mommy and daddy are here.

I helped change his diaper for the first time!!! He has the smallest poop I've ever seen! I would censor his wee wee, but you can hardly even see it!

My ring is big on his leg!!!

It has been a busy day for our guy. One of the nurses hooked our man up with some cuter blankets so it's not so boring in there. They turned off the humidity in his incubator, gave him another blood transfusion, he peed A LOT, he got a new IV in his arm, more lipids and fats and he got more milk today. It was so nice to finally make some real contact with him. Reasoning skills or not, he knows his mommy and daddy and he needs to know that we are here loving him more than ever. His skin looked especially dry today, he has a bit of an alligator thing going on, but they said that's just part of the development process. Other than that things are pretty stable. We are staying at the hospital again tonight. It's nice to be close to him, not to mention it's nice to have access to the cafeteria from 10 pm to 2 am- they definitely know how to accommodate any midnight craving! Thanks again everyone for all of your love and support. It's so nice to have such an awesome support group right now. It really means so much to us. You're all amazing. Thank you.

Hangin in there

We finally got the results from the renal kidney ultrasound last night and they said everything looks good. He might have just over worked himself the other day so the have been helping him out a little with the dopamine and some extra fluids. We are still at the house right now- we both got some more much needed rest last night and we finally had a chance to take advantage of the work out room this morning. It feels good to be more active and move around. Everything is going well for now and our little guy is stable. We touched him last night!!! We didn't actually help with his cares or anything, but the nurse has us each rest our hands on his back and around his feet! It was so amazing to finally make that connection with our little guy. I miss having him around all the time! We are definitely going work on helping with his cares and maybe getting into the kangaroo care soon. It's a little intimidating because he's so tiny, but I want him to know that we are here and that we love him. Last night after I touched him and was getting ready to leave, the nurse gave me the eye mask/goggles that he wore during phototherapy and his first hat, so we put them on the adorable little bear that Cathy bought for him and he is hanging out in our room with us. It's nice to have something he wore since we can't have the real thing with us just yet. I got my pump in the mail today, and it's so nice! My insurance is really taking care of us. We are going to be here at the house for a few more hours so we can get cleaned up and do some laundry, but we will be staying at the hospital tonight. It's so nice to be right there with him. I'll be calling to check on Bryton pretty soon so I'll let you know what's up. Thanks everyone! 

Go Bryton, It's your (1 week) Birthday!

There is no new bleeding in the brain and what's there has already started to metabolize back into his system! Yay! No one has read the renal kidney ultrasound yet, but there should be some news by tonight. He is continuing to urinate and even had a little poop. Who ever knew you could be so happy about poop?! The nurses are really encouraging us to start Kangaroo Care- they want us to make some skin to skin contact and hold him. He will still be connected to everything and they tape all of the tubes to our arm. Kangaroo Care started in a lot of rural, undeveloped countries as a way to soothe and encourage premature babies and babies with other significant problems when the technology to help them wasn't available. It is supposed to make the baby more comfortable by being in a more familiar environment- they like the actual skin to skin contact and hearing mom and dads heartbeat and voice. We are still a little standoffish because we don't want to do anything that could harm him, but all of the nurses and Dr.'s keep telling us that it's very beneficial for all 3 of us. I don't know if today is the best day because we went into Pets Mart and pet a few cats. We will probably start by helping change his diapers and check his temperature and move into the Kangaroo Care in the next week or so. It sucks that he's a week old and we haven't touched him yet, but we are just so glad that he is here and doing as well as he is. We went into Babies R Us earlier and had a hard time not walking out with the entire store. So that's all for now. We'll let you know if anything changes.

Happy 1 Week Bryton!

Right from the beginning the statistics were against us, but our little man is just like his mommy and daddy! He will not be a statistic! We are 1 week old today and going strong. It seems like he is much happier on his belly and he is already urinating more, which is good. The results for both ultrasounds are in but the radiologist isn't here yet. I will get them up asap. We will probably be at the hospital all day and my cell is dead and his has no minutes so if anyone absolutely has to get through to us, give us a call in the NICU. We really want to keep it calm around him so we would like to keep visitors to a minimum and we even like the Dr.'s to speak with us away from his bed. We don't want anything to disturb him right now.  We should have more for you by this afternoon. Go Bryton!!!!

Tummy Time

Still no word on the head ultrasound. They finally put him on his belly. I will get pics as soon as I can. He looks much more comfortable. And he is peeing more which is a very good sign. Other than that there is nothing new. You'll know when we know. 

P.S.

One of the residents just told us that the results for the kidney ultrasound came in but there wont be anyone here to read it until morning. She will be able to read the head ultrasound when it comes in so we will for sure have that tonight. She said that the radiologist should be in here in the morning but if they don't have it read by about noon, they're going to contact someone at A.I. Dupont to check it out for us.  A.I. Dupont is the hospital across the street from where we're staying at the House- it's the surgical hospital. So hopefully we will get the head ultrasound results soon and I'll get them to you asap. We are going back to get some rest in the room for now. Love you all.

Still here.

No test results yet. They are changing his fluid right now and they took out all of the potassium because it's been pretty high and increasing. He peed a little earlier but it wasn't enough to send to the lab so when they do all of his cares again at 9:30 tonight they will check on that. They did take out the umbilical line they had in there and now they are just keeping an eye on it for a while before they put him on his belly. It should help with his breathing and just make him more comfortable. They also started him on a very low dopamine drip which is supposed to help with his blood pressure and urine output- they explained to us that this will directly contribute to helping his kidney function. They also stopped with the breast milk for now until they figure out what's going on with his kidneys. I think I mentioned before that they would be giving him 1 ml of milk every hour, however I was wrong- they were actually giving him 1 ml every 6 hours. They will probably get that going again as soon as we have the kidney situation figured out. It's getting late but we will still have the results of both ultrasounds tonight. We just came back up from the cafeteria- we both needed a little caffeine. The nurse said it's o.k. for me to have one or two cups of regular caffeinated coffee a day, but I don't want to get to much in my system so I'm going half caf. for now. Everything else is pretty stable. He is moving around a little more and being a feisty little guy which we take as a good sign. We will be able to get into the room soon so we are both going to go in and take a nap and then come and hang out with him for a while. It's so nice to be able to be so close- we just have to walk down the hall to be with him. And as long as the room is available and we put our names on the list we can stay here as often as we'd like. We are going to try and stay here both friday and saturday nights because transportation to and from the House gets a little tricky on weekends because there are no volunteers and we'd rather not depend on a cab. As soon as we get the results I'll get them on here for you all. 

FYI

Today we do have a couple of concerns. His kidneys aren't exactly failing, but they aren't doing what they are supposed to do which is why he isn't urinating the way they want him to. They already did a renal ultrasound of his kidneys and we should have the results in a few hours. A couple of things they're doing to help determine what's going on include a few changes in what fluids he's receiving and they also gave him a small amount of blood. Another major concern right now is a pretty drastic drop in his blood platelet and hemoglobin levels which means there might be some more bleeding in his brain so they have already ordered another head ultrasound which should be happening pretty quickly. They are definitely concerned, but it's nothing to panic about. We knew that there would be some good days and some bad days, but just because today isn't as good as yesterday doesn't mean it's bad. He is a strong little man and all we can do for now is continue to love and support him and let him know that we are all out here rootin for him. Rob and I are going to go ahead and just stay here at the hospital tonight so we can be close to him and see him whenever we want. As soon as we get some results I'll post them for you. Just keep praying and loving our man. Thanks everyone.

More good news!

We still haven't made it to the hospital, but I am getting ready to go and talk to the Social Worker here at the House to finally figure out transportation. All of his levels are looking good, still haven't got the caffeine levels back yet, but it shouldn't be much longer. He isn't having as many wet diapers as they'd like so they're going to do an ultrasound on his kidneys just to be safe. The nurse also mentioned that they are considering taking out the umbilical line today which means they'll finally be able to lay him on his belly so he will be much more comfortable and it will make it easier for him to work on breathing on his own. It's how he rolls :)

Keep it up little man!

We had another good night. All of is levels are good and he's tolerating the milk well. Last night on his left foot, his second small toe started to turn black because of a lack of circulation, but the Dr examined him and said it would be ok and they put saran wrap around his feet to help with the blood flow. They said it's really not uncommon and it's caused by the line they have going into his belly. They are keeping a close eye on it, but there is nothing to be worried about. Labs will go out at about 8 this morning and we should know by 9am wether or not he'll have to go back under the lights. His heart rate settled down, it was between 160 and 188 all night which makes us feel much better. They are still going to check his caffeine levels because I have a feeling that's what was causing his high heart rate- he slowed down a little as the day went on so it was probably just wearing off as he metabolized it. So over all we're looking good. We haven't been able to get down to the hospital yet because we need to talk to one of the house employees and get definite answers about the shuttle situation, but I'm sure we'll have it figured out in no time. Thanks for all of your love guys. He knows he's got a whole fan club supporting him and waiting for him to get big and strong so we can all love and spoil him. Go Bryton! 

Yay!!!

This is iBryton. Candace wanted to give something to refrence the size of his diaper, which is still big on him, so she put it on her iPhone. The picture is blueish because he was still under the UV lights at the time. Just so you know.
He is so handsome!!!

We just got the results back and there is nothing abnormal about his heart at all! Go Bryton! Since the Echo came back good they already gave him 1 ml of bank breast milk. Bring on the chubby cheeks! I started producing milk the day after he was born and I have produced some every day since, but they have to put it in a deep freezer for 5 days before they'll give it to him to kill any bacteria. In the morning they are going to check his caffeine levels and if need be they will re-evaluate the dose and frequency, however this might just be his norm. It's different with every baby. We are so happy about the test results! Thank you so much everyone for all of your love and support and prayers, it means so much to all 3 of us. Our little man is doing as good as we could possibly hope for and we are confident that he will keep getting stronger and healthier everyday. Love!!!

Hanging out with our favorite man . . .

So they were in the middle of doing the Echo when I got here at about 2:15 and we will definitely have results and a plan by tonight. One thing that was mentioned to me is if they do have to go through with the PDA, they are going to consider giving him the indomethacin instead of going straight to surgery, and that's even if they need to do anything at all. The only reason they decided to do the Echo was because his heart rate went above 200 when it has been pretty consistently between 170 and 190. This does not mean there is a problem with his PDA, it might be being caused by the caffeine they gave him which is pretty common. They only gave him the caffeine as a way to help him break down whatever blood has been clotting in his brain. He has no heart murmur or any other heart problems, they are just being thorough. It is a very good sign that his insulin and sodium levels are correcting themselves and he has high, but good kidney function which are all signs that the bleeding might have already started to resolve itself. They do plan on doing another head ultrasound  by the end of this week or this weekend. We are hoping to see that the bleeding has at least stopped if not started to metabolize back into his system. An ultrasound will not tell us if there is any damage to his brain tissue, but when we are closer to getting ready to go home they will do an MRI which wont tell us exactly what problems we could be facing, but will give us a better idea of what to look for. So we are just hanging out right now. We have nurse Shannon today and she is very sweet and she loves how feisty he is. Our man is a fighter and already a ladies man! More soon. 

Bye Bye Bilirubin!!!

We still haven't made it in to see our man yet, but we have some good news! They took off the lights! His bilirubin level is down to 3 so no more tanning bed for our baby. There is a chance that they'll have to put them back on, but that's not uncommon and it's good news for now! They still haven't done the echo, but it shouldn't be to long. If the results don't show anything abnormal with his PDA, they are going to start him on 1 ml of bank milk every hour and start working on those chubby cheeks we're waiting for. Go Bryton!!!!

So Far, So Good

The tiniest little feet!!!

We haven't had a chance to get down to the hospital yet today, but I have already called and spoken to his nurse this morning. They were able to take him off the insulin!!! Yay Bryton! They are very happy with his heart rate, sodium and wet diapers. They did order the Echo which they will perform sometime this afternoon and we should know by tonight what their plan of action is. I promise I am working on getting more pictures up for everyone asap. I spend a lot of time by his bed so I am really only going to be able to work on this when we eat or come back to the house, but I promise you will all be able to see what's going on with our little man. In case anyone is interested, you should really check out www.marchofdimes.com there is a ton of information about what they do for people and lots of good resources if you want to understand Brytons situation a little more. Also check out www.rmhc.org if you'd like to see what Ronald McDonald House charities is about. They have already been such a blessing to us and as soon as our little man is better we are going to do whatever we can to volunteer and help out and we encourage you all to do the same. I always took for granted the little boxes you put your soda can tabs in and even the little change thing in front of the register at any McDonalds, but they provide some truly amazing things for people like us and every little bit counts. You'll know more when we do. Thanks everyone.

Finally!!!

His little legs are smaller than the nurses fingers!!!

It has been an incredibly long week, but I can finally get this all going so you can all keep updated on what's up with Bryton, Rob, and I. Let's start from the beginning:

On Sunday we found out that I had an incompetent cervix and was admitted to Christiania hospital in Wilmington, DE. I started to have contractions so in addition to a variety of other things, they started me on Mag Sulfate to stop the pre term labor. On Tuesday in the late afternoon, they took me off the Mag and started me on a similar oral medication, Indomethacin. My contractions stopped for a while and they even took me off all of the monitors and started checking on me every few hours. On Thursday morning Rob and his mom Cathy had to leave the hospital to take care of a few things, and at about 6:30 my contractions started again, however we didn't know they were contractions. They left at 7, by 7:45 they hooked me back up to monitor the contractions, and ordered an ultraltrasound to see if anymore of the sac had moved out of the cervix. They determined I was fully dilated by 8:30 and 2 good pushes later, Bryton King Hamilton was born at 9:08 am April 9th, 2009. He came out at a very tiny 1 lb 7 oz and 12 1/4 inches. They immediately intubated him and started to check is vitals and blood work. They noticed a pretty significant loss of blood and that led them to doing an early head ultrasound. The Dr. informed us that he has a Level 4 Intraventricular Hemorrhage. He has the most severe level of bleeding in the brain. The bleeding started on the right side but his affecting both sides. This can cause 4 major long term problems including any degree of mental retardation, cerebral palsy, deafness, or blindness. They can monitor the bleeding and there is a procedure they can do to help with the clotting of blood, but there will be no way to determine the serious long term effects until we start making and missing certain developmental milestones. His other major obstacles so far include maintaining his glucose and sodium levels as well as keeping his body temperature level. Thankfully they are seeing some improvement in his glucose and sodium. One major contributing factor is his incredibly premature skin. Water is able to evaporate right through his skin so they keep a piece of plastic over him that looks a little like saran wrap and they have also been keeping the humidity in his incubator close to that of Florida or Jamaica. They did an EKG today to see why his heart rate is so high and they have decided to do and Echo today which will determine wether or night his will have to have the PDA closed. We should know by tomorrow afternoon if we're going to have to have the surgery. Other than that he is looking good. He has some truly amazing nurses and everyone in the NICU is amazing.

Until Bryton is ready to come home, Rob and I are staying at the Ronald McDonald house in Wilmington. This place is so amazing, I don't know what we would do without it. It will basically cost us nothing and we have our own room with a bathroom, access to laundry facilities, 2 kitchens with 2 refrigerators in each- one for families to store their own food and one of free food that anyone can help themselves too. There are cabinets full of free food and every possible cooking utensil you could ever need. There are several beautiful living spaces, a work out room, a teen room, several computers with internet access and printers. There are so many little things they have provided us, I can't even remember them all. There are even people that come in and volunteer and prepare meals for all the families in the house every night. I have no idea what we would do without this place. It is so nice to be close to Bryton and so many comforts of home. There is milk on tap!!!!

This is our life for now. We are confident that Bryton is going to pull through with flying colors. We have such an amazing support group of friends, family, and staff at the hospital and at the House. He is such a handsome little man and obviously a little fighter. It is a difficult time for all of us and it's a hard truth to accept, but we are really trying to stay positive. Rob and I are practically pre med students and if you do a little research, it will make a world of difference in your perspective. There are still a lot of hurdles for him to overcome, but we really believe everything is going to work out for the best. We realize and totally accept that there is a very good chance that he will have some serious long term problems, but we love our little boy and we want him to have every chance at a happy, fulfilling life. It could be better, but it could be worse, and we are just so grateful that he's doing as well as he is. Thank you all for your love and support and I promise I will keep you all updated with lots of news and pictures. We love you!!!