Surgery on Monday.

 JUNE 29, 2013:

It's been so crazy lately with our little one. We have had a conference with the care team and have discovered a little bit more about how he is doing. From a preemie standpoint he is doing well for everything going on. He is ventilating well, and they are going to try and slowly (and by slowly they mean slowly) wean him off of his ventilator.  He is also going into surgery on Monday, for the removing of his mass (or granted what's left, after they sucked out their sample weeks ago.

That is definitely a scary zone for mom, I don't like the idea but I like that it will help him and we can start solving some of the things that are going on.  I hate to ask but for those that are willing to pray for him and us, while he is undergoing this trial we would greatly appreciate it.

As you can see though he likes to sleep on his tummy. He calms down a lot and will sleep for hours when they let him sleep on his tummy. That's my tip for all of the nurses when he is needing a high level of oxygen and that will bring his level of need down too. Funny little boy.

He is starting to pudge up and look more like the average baby.  I love that he's getting bigger. He's definitely stolen my heart. I hope that you can enjoy the pictures. I wanted to share them with everyone to update you with what is going on.

We would like to thank everyone for all of their help in our little family's lives. We would not be able to do what we can without you. The prayers alone are so helpful to our son. It strengthens Sam and I to know that we have such a strong support system that we can fall on at any time.  Thank you.

From the Computer!!!! YAY!

JUNE 26, 2013:

Hello everyone. Sorry that I've been away. So Brady was a stinker and on Monday threw a tantrum so he did not get to have the upper GI done (that small intestinal study with more dye, to check for any leaks). He still hasn't pooped. :( I know that without eating anything I can only imagine that it's probably hard to make something out of nothing but fluids.

He has been swinging all over the place with vent settings as the fluid on his lungs isn't playing so nicely from his PDA.  I have tried calling the hospital a couple times, at inopportune times and so I will try again to see about the ultrasound's results on whether or not the mass has shrunk, stayed the same, or is larger...

The biggest and most frustrating change for me lately has been the fact that we are now in isolation.  Another baby that was moved from our room a little bit ago, came back positive for VRE (though he was showing no signs)... well even though that baby was moved before he came back positive, our whole room is in isolation. We now get ugly yellow gowns, and have to wear gloves as well as scrubbing down before leaving, and some other things. No more skin to skin contact with my baby.

When will this small version of hell end you ask??? Not until every baby is discharged, or moved into rooms. Which means for as long as Brady is in the hospital we can't touch him unless we are wearing gloves like the nurses. I won't lie and say I'm pleased. Even though I do understand the safety precautions and everything are good for my son. I'm sad that I won't be able to hold him like a normal baby. Instead I've got ugly gown in the way, and can't even touch his little hand without that disgusting rubber in the way....  Can't wait for him to be home, so that I can be able to have all those small little delights.

I was able to change his diaper, take his temperature, and move one of his probes the other day. That was pretty cool. I'm getting better at all this stuff. He did get to meet his Great Grandma Maughan, she was raving about how cute he is, and how he's a keeper. :) So I guess he's approved.  He is so stinking cute, I can't believe how big he is getting.

If you have any questions, please leave a comment and I'll answer everything to the best of my ability. We are having a care conference tomorrow so I will understand things a bit better I'm supposing. Thanks to all of you reading, and once again I am sorry for the delay in updates.

phone update again...sorry

june 23, 2013  so we have finally got the news we were waiting for. he finally passed the dye. so tomorrow we are doing the smaller intestines. yay. he is doing very stable. they changed up his vent settings and hes a happy boy now. we have an interview in the morning about some of his assistance. so excited. sorry about the belated update... that is my fault. oh and he now weighs 2 lbs 10 oz...getting bigger.

june 18

june 18, 2013...so we are still waiting on the dye to pass through his system.  then they will do the check of the small intestines. i aplogize or the forma of the post as i do not have internet at home, only on my cell phone. thank you all for thinking of us.

Father's Day/Update

JUNE 16, 2013

So it's Father's Day, I'm full of a lot of thoughts about the men and boys in my life. But first, I will update on Brady. He still is trying to pass the contrast dye from his large intestines before we can do the small intestines to check for a leak (they left that out when they were telling me on Friday). They are trying to make it easier on his little lungs and have him on another medication to help...since his PDA is making it harder for him to breathe. The PDA is a vessel in the heart that is open in babies before they are born, and a lot of blood goes to the lungs through it. It naturally closes in babies once they are born, normally. Brady's still has not closed and is sending too much blood to the lungs which is putting too much fluid pressure on them and is making it harder to breathe for the little man. So it's taking more pressure to fill his lungs.

They will be able to fix that with either a medication (sometimes) or with surgery. But where he is sick and with everything going on with my boy, no surgeons would consider even touching that right now. Tomorrow he goes in for a head ultrasound, and will be getting his labs done to make sure his liver and kidneys are working. So that will be a not so fun day for my baby boy. He's still seeming to be upset with things right now not that I can blame him seeing as he's probably sick of being poked and prodded.

He will hopefully be getting better soon. That boy has definitely been on a roller coaster ride of ups and downs.

I know that it's been easier on me this time at points than it was with Bradley. But I know that both of these two boys are very special. It just so happened that one has already fulfilled his mission and was able to return to his heavenly home, where there is no pain, and no trials. The path is never easy and it will never get any easier.  The reason I say that is because just because one trial ends doesn't mean you are done, there are tons of things that you will be dealing with more and more. The trick to staying happy is remembering all the good that is mixed in with the bad.

I do have to say that I have been blessed with an awesome little family. Sam is a great husband, and he is a good dad. He struggles with the fact that we can't fix everything going on with our little Brady bug, but I know he truly loves both our boys a lot.  I know he truly cares about me, and we work hard together to make everything work. He is truly amazing. Not saying that Sam doesn't deserve one but I do need to say about my own father:

My dad deserves a shout out that I couldn't possibly give to the extent he deserves. I remember my dad when I was little being there for a lot of things, from soccer/basketball games to helping with homework, to teaching wrong from right. We've had our moments of clashing and bumping heads. But I have always known that if there was one person that would do anything for me it would be my dad. He'd be the first to search high and low if I went missing. I know that if I call crying he will do anything in his power to fix it. He has been there for me through the thickest of times and has shown me that I have the strength to stick up for who I am.  He taught me to take care of myself in a fight, not to start them but I sure do know how to finish them.

He taught me to follow my dreams and ambitions but that I did need to do it in a smart way. Common cents, cooking, cleaning and a million other things that I promised I'd hate him for making me learn- well let's just say I'm so grateful for him taking the time to teach me. I miss that car rides to talk about things, the trips to the store just to hang out with him... He's one super dad.  I mean after all look at who I am because of him and my mom. :)  Thank you Dad, you are amazing.

News from tapping the mass

JUNE 14, 2013

So yesterday, we got news about what the mass under Brady's liver was... if anyone wants to guess I'm going to tell you that you are probably wrong.  His mass was made up of stool (aka poop), pretty gross right?  They got 2/3rds of the mass out, the other third we are still discussing best way to get rid of it. For now we are going to stick with his antibiotics and we will see if the other options are needed (such as operation or sucking it out through a needle).

We did do a contrast study today, it was not fun looking at all. Brady had to endure them going up through the rectum, and filling his intestines with a dye solution to check for leaks. We were able to get the large intestines done today, and if the dye clears up by tomorrow then we will be able to check the small intestines tomorrow.

We were very scared for a little bit becuase if they had found a tear or hole in the intestines that would mean that he would need surgery on his intestines.  They are thinking that there was a tear or leak at one time and that's where the stool leaked out from. In a few weeks we will be able to tell whether or not his has any damaged intestinal tissue that they will have to do surgery on.

I had finally hit a meltdown moment last night, the reason for your lack of update. I'm sorry, but I wasn't thinking of the blog when I was freaking out over whether or not we might have a surgery. :(  He is other wise doing well, though he is angry at the world for the trick this morning of sticking things where they don't belong. ;)

I will update again soon. Thank you everyone.

Another Day in Paradise

JUNE 12, 2013

 Sorry about the belated blogging everyone, I was celebrating Sam and I's two year anniversary on Monday, and we are working on fixing the A/C.  Jasmine (our puppy) was kind enough a few months ago to chew through the wiring outside. So it's been us trying to fix it yesterday... if any of you know how to do that stuff...let me know-you'll be my hero.  We have spliced the wiring, replaced the old, dead thermostat and right now it's still not working.

But onto the real reason you are reading my blog. Brady. He is doing well, they are slowly trying to wean him off of his ventilator but Brady isn't liking that so much. He sort of freaks out, so that will be a little bit of a process. They started him on a new medication that will help his lungs to open up easier so that it requires less pressure to sit and push the air into his lungs from the vent.  He also had another abdominal ultrasound done. It's still showing the little mass from last week (the one we don't know what it is, could be an abscess, or some bruising, etc) but it's showing that it's basically the same and just a smidge (or I guess slightly) smaller. That's as much as I know right now on his mass. I should know more once rounds are done on him later today.

I'm visiting my little boy at the hospital today. Didn't even realize that it's Wednesday, and so there is that parent thing today. Is it wrong that I think I'll go for the free lunch?  Yup, that's right, I enjoyed the food last time. Hopefully it won't be as awkward, if it is, I'll just not attempt the parent hour thing again.  Yes, I'm strange enough to think that.

I've been thinking on Bradley a lot this week and I went to visit him at his grave earlier this week.  It's crazy but that feeling that I get at Brady's bedside like someone is there was at the grave site. :) I think it's Bradley's way for letting his mom know that he hasn't forgotten me, and that he's looking after his little brother. He's definitely looking after us as an angel.  I keep thinking on how we've been blessed to have two sweet, special little boys.  We will just have to see how everything goes, but if it stays good, I will be excited that we only have 3 more months in the hospital. Possibly longer, and possibly shorter. Blessings have helped our little family so much, I can't express my gratitude enough to everyone who has helped to see us into the better times ahead. :) Thank you.

We are a little belated.

JUNE 09, 2013:

So as an update, Brady is doing good still. They have swapped up the ventilator settings, again just trying to help out Brady and make him happier. But he's a picky little boy and cannot make up his mind about what he wants where breathing is in place.

I've been told that people are requesting that I update at least once a day again, even if it is a sentence. So I will attempt it just to let you know that, though it may be from my phone and so it may not be very good at all as fair warning.

I would have posted sooner, but was having a rough day when I was able to post. Just was missing our Bradley and wishing that we could bring our little Brady home. I know it will be a while, and I'm very happy he's in the hospital getting the best care possible for him. But sure cannot wait until we are able to get that little boy home and so I can be able to love on him lots.

We went to our little nephew's baby blessing this morning and was able to listen to some people during the testimony meeting.  It was fun to listen to a new father who was talking about how grateful he was for his baby's crying. Can't say how truthful that is. :) How amazing that they are able to communicate with us even if it's not in words what they need. :) :)

Grateful for Brady, even though there is some trying moments with being away from him and setting up all of our meetings. But for all that has happened, that little boy is worth the world and more. I would give up everything just for him.

Thank you to everyone for all the support. We appreciate it a lot. Things are actually seeming to get a little bit better for Brady. He's holding steady and it's amazing to realize that his biggest goal is to grow. Instead of finding out all the problems. So grateful to see those sweet little eyes, the cute little hands that will wave, and the kicks. He's an amazing little boy.

I'm getting so big...

JUNE 05, 2013

So down at Primary's with my Brady Bug, not because something bad is happening but just to spend time. His eyes are both open. :) So adorable, I'm loving those eyes. He'll look straight at you as you talk. I can't get enough of it. See??? Now you probably got sucked in too. Right into his eyes, and you won't be able to escape.

For those wondering about his stomach the next few photos show his belly and you can see the bluish color to it.  They are still concerned with it and are watching it pretty closely. However, we are starting to see some pinkish spots - that coloring is slowly starting to clear up.

We have been enjoying all the time with the little bug, though Dad is bummed that he has to work and cannot spend as much time with him. But it will be good.

Looking forward to spending a little longer with him until I have to leave the hospital and go home. But he is doing good and will be meeting with the eye doctor today, just making sure that there are no fungal deposits in his little pretty eyes.

He is showing that he is a big boy and  they are weaning him on his vent to see how he handles it. But he has been doing stable and it's  great.   

I couldn't be any happier that he is doing so well it's very reassuring that he will be coming home ...or at least that's my interpretation of all the news.  I attended a lunch get together thing that is for the parents of preemies. I don't think I'll go to many, they are meant to be more of a support group and frankly, I'm thinking we have got this for the most part.  Now we just need him to grow big and strong, and kick this yeast crap to the curb. That way he can start all the fun things like feedings, and losing that ventilater (vent).  Keep it up Bug. :)

Thank you for everyone that reads the blog, sorry the updates aren't as daily as they used to be. I try to update, often for those who use it to keep up to date. But I'm a little slow sometimes at keeping everyone posted.  Thanks for everything you guys, you are all amazing.

We have an eye!!!

JUNE 2, 2013

So today, we have... an eye. (Dun dun dun!) So awesome. He opened it for Grandma and Grandpa Maughan today, as they were visiting him, and when Sam and I went down he was happy to show us his little eye. He was looking around and kicking like a happy little baby.  So content as he is fighting off his infection.

We did find out that his infection is a fungal infection, and today they have confirmed that it is a yeast infection.  He is on the medication that will clear it up, but it can take weeks for some yeast infections to clear up. In the case that sometimes there can be an abscess that takes longer to clear up as well.  So he's got a fun little ultrasound set up to see if there are any.

He is so stinking cute, I would have gotten a picture but my phone was completely dead.  So I will be trying to catch a photo of it as we go on down a little later this week.

But everything is going well, his skin color looks good and his belly is starting to not look as horrible.  It's still a darker color but it's lightening up a little bit.

So this is the update for today. and I will keep you posted. But it's all going good for now, so that's always great to report.