December 30, 2013-
It's almost the new year, and can you believe I'm updating again?! After that long bad spell I'm feeling terrible for the long gap and making everyone wait. I apologize from the deepest chambers of my heart. So everyone has been asking are you loving having him home? The answer to that question is yes, I am loving it. But it is also a stress that I never expected.
I was telling myself that I was so prepared for having a baby... and you know what? I was totally not prepared for this. But I tell you what I'm trying my best... and Brady is growing like a little weed. He weighed in at 12 pounds 12 ounces. We finally made the charts if we look at his adjusted age (How old he would be if he were born on his due date in September). He is in the 5th percentile for weight, 7th for length, and 18th overall if he was born on time. We are making progress, and all that in a month.
We both just got over some stomach bug, and it lasted for a few days for the little man; not something that I would wish on anyone. Surprised me that when I got puked on, it didn't bother me at all as much as I thought it would. I will say that it was warm, and luckily was right after a feeding so that I only got the formula smell. But I was more concerned with if he was okay, than the fact that I was drenched in baby vomit. Poor baby.
I am loving being at home with Brady, as with everything I haven't returned to my night job yet. He has almost learned to roll over. It's funny to watch him get halfway and then realize he can't go due to his arm being positioned oddly and preventing forward progress. He is slowly learning to like tummy time a little bit more and hopefully he will start to learn to use his little arms to push up and hold his head up a little more. He is sitting pretty well too (still needing help, of course), but holding his head up and learning to work on holding himself a little more.
Turning into quite the Mommy's boy though. He just wants to be with me. He refuses to just hang out with Dad. As soon as I leave the room he is screaming because I'm gone. But we are doing well. Christmas was fantastic and fun, he got some new clothes, some toys, teething assisting toys, and a few new books.
Still very grateful for the prayers and thoughts we receive, we can definitely see the impact of them in our lives. Truly thankful for everything. We will keep you all updated as Brady continues to grow. Thanks for bearing with us, throughout the slow updating.
Wishing you all a Happy New Year!! As we start 2014, we can all think of all the great miracles we've seen this last year. Who knows what the new year will bring as we strive to make some New Year's goals, I know that some of mine will be including weight loss. I am finally back under the 200 pound mark and I am aiming to get back down to 130 hopefully. Though truthfully I think I would even be content at 150. :) Well Wishes, and we will see you all next year!
Monday, December 30, 2013
Wednesday, December 18, 2013
HE has made it HOME!!!!!
December 18, 2013-
I'm so sorry everyone for the delay. We have had so much good news. Brady was able to be discharged on November 25th, and was able to be home for the holidays!! He has been a charming little love. But it's been so hard to adjust to having a baby at home now. It's been crazy.
He is now 12 pounds 2 ounces, and will take roughly 3/4-1 ounce by mouth with his bottle when he is allowed to try (which is roughly 2 times a day). He has been doing so well, and so I'm going to include some pictures.
Brady finally got a button g-tube and was able to for the first time spend some time on his tummy. If it will let me I'll add the video of him. :)
I can't help but think about how grateful I am for my sons, and my husband. I know it's hard to believe for me how my little Brady has made it from 1 pound 12 ounces, with so many complications to the amazing little boy I put to sleep each night. Who smiles at me, and giggles when we play together. The difference between my two boys situations within the first few weeks of life, could not have made a larger impact on my life.
I will be able to update more frequently now that things are slowly calming down, the holidays are almost over. He is trying to roll over, and even though he sits pretty well he still needs some assistance. :) Can't say much more other than I am the happiest woman on the planet.
I'm so sorry everyone for the delay. We have had so much good news. Brady was able to be discharged on November 25th, and was able to be home for the holidays!! He has been a charming little love. But it's been so hard to adjust to having a baby at home now. It's been crazy.
He is now 12 pounds 2 ounces, and will take roughly 3/4-1 ounce by mouth with his bottle when he is allowed to try (which is roughly 2 times a day). He has been doing so well, and so I'm going to include some pictures.
I can't help but think about how grateful I am for my sons, and my husband. I know it's hard to believe for me how my little Brady has made it from 1 pound 12 ounces, with so many complications to the amazing little boy I put to sleep each night. Who smiles at me, and giggles when we play together. The difference between my two boys situations within the first few weeks of life, could not have made a larger impact on my life.
I will be able to update more frequently now that things are slowly calming down, the holidays are almost over. He is trying to roll over, and even though he sits pretty well he still needs some assistance. :) Can't say much more other than I am the happiest woman on the planet.
Thursday, October 24, 2013
Post Surgery!!
October 24, 2013-
So surgery went and happened!! And then I felt like the worst mom on the planet afterwards. I'd been so excited and he was so miserable, worse than I've seen him in months and months. So I told myself that I earned the bad mom award, for actually being excited about something that could cause my little Brady Bug pain.
I know it had to happen for him to get better, but I seriously was staring at a Mr. Michellin Man baby. (You know that giant white marshmellow-y looking tire guy, yeah he looked like a mini one) He was so swollen, and miserable. The week following surgery I couldn't help but call like 3-4 times a day, along with all of the updates from the nurse practitioners. We had to go back onto the osilator ventilator that is the model t of vents, not that it's ancient but it shakes their little bodies.
Within the week after surgery we did go fairly quickly and as of today, we are back down to 1.0 liters of oxygen flow. He just started feedings with a bottle, twice a shift, with an hour's worth of food as of last night. They are feeding him the rest of what he doesn't take by mouth through his g-tube and we just went up on feedings. I think if I remember correctly we are at 5 mL an hour. He is looking great! No more swelling, and is looking like a normal baby. He even recently graduated from the heater bed back to the big boy crib.
He is loving being able to move again. :) He searches for the source of the voices and loves stories, conversations, and songs. The nurses have been loving getting to play with him, and he gets upset when play time is interrupted. He is so alert, and attentive it's crazy to think that he may miss milestones eventually when we start to hit them.
And before I forget the promised photos of Brady to update:
So surgery went and happened!! And then I felt like the worst mom on the planet afterwards. I'd been so excited and he was so miserable, worse than I've seen him in months and months. So I told myself that I earned the bad mom award, for actually being excited about something that could cause my little Brady Bug pain.
I know it had to happen for him to get better, but I seriously was staring at a Mr. Michellin Man baby. (You know that giant white marshmellow-y looking tire guy, yeah he looked like a mini one) He was so swollen, and miserable. The week following surgery I couldn't help but call like 3-4 times a day, along with all of the updates from the nurse practitioners. We had to go back onto the osilator ventilator that is the model t of vents, not that it's ancient but it shakes their little bodies.
Within the week after surgery we did go fairly quickly and as of today, we are back down to 1.0 liters of oxygen flow. He just started feedings with a bottle, twice a shift, with an hour's worth of food as of last night. They are feeding him the rest of what he doesn't take by mouth through his g-tube and we just went up on feedings. I think if I remember correctly we are at 5 mL an hour. He is looking great! No more swelling, and is looking like a normal baby. He even recently graduated from the heater bed back to the big boy crib.
He is loving being able to move again. :) He searches for the source of the voices and loves stories, conversations, and songs. The nurses have been loving getting to play with him, and he gets upset when play time is interrupted. He is so alert, and attentive it's crazy to think that he may miss milestones eventually when we start to hit them.
And before I forget the promised photos of Brady to update:
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| Nasal cannula trial before surgery - we were seeing if he could breathe without it, and he made it for an hour. |
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| Nasal cannula trial before surgery - we were seeing if he could breathe without it, and he made it for an hour. |
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| Nasal cannula trial before surgery - we were seeing if he could breathe without it, and he made it for an hour. |
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| Day of surgery- right after. Daddy snapped this picture. It lasted 4.5 hours, and then mom and dad had to wait for about another hour and a half before they could see me. Mom wasn't happy about that. |
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| Mom's favorite face. The "o" face, he purses his lips in the o shape and then looks around for a bit, this was the first and only time she's been able to catch it on camera. |
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| My reaction to mom relaying dad's message, "I love you. Even though you are a monster." Because I'm wearing my monster pjs. The monster is on the butt, and the feet. |
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| Day two after surgery- Michellin Man baby... look how majorly swollen. |
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| About a week after surgery, the swelling is almost all gone and I'm feeling better. |
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| Meh... I'm hanging out with mom and enjoying some camera time during our chit chat. |
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| Daddy was clever enough to snatch this photo, it's so precious. |
Friday, October 11, 2013
Surgery!
October 11, 2013-
Life threw us a curve ball recently, and this one we likely. Brady's currently in surgery, getting his intestines reattached and also getting a feeding tube placed (a g-tube). This wasn't supposed to happen until Thanksgiving!! So we have been super excited and stoked that we are able to do surgery now. He has the potential to be home within 5 weeks of surgery. So we are looking to bring him home, roughly around the week before Thanksgiving.
We are hoping that all will go well so that we can get our little man home. :) He has been getting so big, he is now up to 3650 grams which in normal speak is 8 pounds 0.7 ounces. He has been doing pretty well lately- he is busy growing, becoming vocal and opinionated, and learning to do things.
Well that's all the update that I have for the current moment, I will update again a little later.
Saturday, September 21, 2013
A Bump In The Road
September 21, 2013-
Wednesday, Septemeber 18, 2013-
We received a call from the hospital, letting us know that they had scheduled a surgery for Friday the 20th, for the "take down"- to put his intestines back together. I asked about putting in a G-Tube, and they were going to ask around and see if he was eating well enough to not place it. A G-Tube is a tube that the rest of the feedings would go through, that he couldn't eat by mouth. It goes directly into the stomach and is a surgical procedure that we could combine with the "take down".
They were impressed with how well he's been doing but wanted to put things together soon, as he was pooping out more than he should be and once everything was together it would have more intestine to help not only absorb more nutrients but help to keep the amount of poop down.
Thursday, September 19. 2013-
8:00 am: "Brady is doing great! His bili levels are down and it seems his liver is recovering pretty good from the prolonged exposure to the TPN. The G-Tube is a go for on Friday as well. So we will combine the surgeries."
"Awesome! How long are we looking at before we can bring him home??"
"If all goes well like we think it will, about 3 weeks."
"Oh I was thinking more like 6 weeks, that is amazing, I bet Sam can't wait to hear the good news! So 3 weeks?"
"Well if we encounter any unexpected problems more like 4-6 weeks."
"That's awesome, we will plan on the surgery on Friday, we'll be down for it."
1:00 pm: "It is with regret that I must inform you that our surgeries have been cancelled, Samantha. Your son, Brady, has NEC once more. The air is no longer in the stomach lining and is beginning to look better on the x-rays. Brady is fine his looking pale, but he's not feeling well and is rather sick again."
I know can you believe the difference hours makes, I was so elated and giddy. And 5 hours later, as I was getting ready for work, I got the call cancelling all of the good news. all of the hope... Gone. Dashed. And my questions started after I cried it out. How? Why? When?
Well as for how, they can't really say. There are a few possibilities. Virus, Bacteria, possibly too much on the bowel, etc. I'm frustrated, none of these seem to make sense. The cultures are all coming back negative, nothing showing as positive.
Why makes no more sense then how. As for when there is no answers there either. We are frustrated. The tangible date in reach and no longer. We are going to be in the hospital for a minimal 10 weeks, more likely much longer. 2 weeks of antibiotics and then 6-8 weeks after for surgery to even do surgery afterwards.
Friday, September 20, 2013-
It's officially the year anniversary. Bradley passed away one year ago... I went and spent a few hours at the hospital with Brady. He wasn't feeling good and just wanted to be cuddled. So we cuddled and still our questions really can't be solved still. It's still a mystery.
But as for the anniversary of my first born, I still miss him. But I was not saddened and grieved on this day- I could only be grateful for the time we had with him. For the blessing he was and is in my life. He has changed me, in ways I never thought I needed. But looking back now I see that I am a much better person because of all he's done for me in my life.
I love my sons. I would do anything for them. I am grateful for them. I am frustrated with the trials, but now see that it's the persevering that I need to learn from still, continuously. I know that I need to better myself.
We are asking that you all keep us in your prayers some more, as we continue to struggle through the hospital stay. We know that all of the prayers, the fasting, that everything has helped. And we would like to say a tremendous thank you for all you've done to better our lives. The donations we've received have helped with the expenses we've gone through with Brady. Thank you. God bless you all.
Wednesday, Septemeber 18, 2013-
We received a call from the hospital, letting us know that they had scheduled a surgery for Friday the 20th, for the "take down"- to put his intestines back together. I asked about putting in a G-Tube, and they were going to ask around and see if he was eating well enough to not place it. A G-Tube is a tube that the rest of the feedings would go through, that he couldn't eat by mouth. It goes directly into the stomach and is a surgical procedure that we could combine with the "take down".
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| This is a picture I pulled from Google. I don't have any rights to it, and this is not Brady. But the G-Tube is placed on this child and to give a better idea of what in the world I'm talking about. |
They were impressed with how well he's been doing but wanted to put things together soon, as he was pooping out more than he should be and once everything was together it would have more intestine to help not only absorb more nutrients but help to keep the amount of poop down.
Thursday, September 19. 2013-
8:00 am: "Brady is doing great! His bili levels are down and it seems his liver is recovering pretty good from the prolonged exposure to the TPN. The G-Tube is a go for on Friday as well. So we will combine the surgeries."
"Awesome! How long are we looking at before we can bring him home??"
"If all goes well like we think it will, about 3 weeks."
"Oh I was thinking more like 6 weeks, that is amazing, I bet Sam can't wait to hear the good news! So 3 weeks?"
"Well if we encounter any unexpected problems more like 4-6 weeks."
"That's awesome, we will plan on the surgery on Friday, we'll be down for it."
1:00 pm: "It is with regret that I must inform you that our surgeries have been cancelled, Samantha. Your son, Brady, has NEC once more. The air is no longer in the stomach lining and is beginning to look better on the x-rays. Brady is fine his looking pale, but he's not feeling well and is rather sick again."
I know can you believe the difference hours makes, I was so elated and giddy. And 5 hours later, as I was getting ready for work, I got the call cancelling all of the good news. all of the hope... Gone. Dashed. And my questions started after I cried it out. How? Why? When?
Well as for how, they can't really say. There are a few possibilities. Virus, Bacteria, possibly too much on the bowel, etc. I'm frustrated, none of these seem to make sense. The cultures are all coming back negative, nothing showing as positive.
Why makes no more sense then how. As for when there is no answers there either. We are frustrated. The tangible date in reach and no longer. We are going to be in the hospital for a minimal 10 weeks, more likely much longer. 2 weeks of antibiotics and then 6-8 weeks after for surgery to even do surgery afterwards.
Friday, September 20, 2013-
It's officially the year anniversary. Bradley passed away one year ago... I went and spent a few hours at the hospital with Brady. He wasn't feeling good and just wanted to be cuddled. So we cuddled and still our questions really can't be solved still. It's still a mystery.
But as for the anniversary of my first born, I still miss him. But I was not saddened and grieved on this day- I could only be grateful for the time we had with him. For the blessing he was and is in my life. He has changed me, in ways I never thought I needed. But looking back now I see that I am a much better person because of all he's done for me in my life.
I love my sons. I would do anything for them. I am grateful for them. I am frustrated with the trials, but now see that it's the persevering that I need to learn from still, continuously. I know that I need to better myself.
We are asking that you all keep us in your prayers some more, as we continue to struggle through the hospital stay. We know that all of the prayers, the fasting, that everything has helped. And we would like to say a tremendous thank you for all you've done to better our lives. The donations we've received have helped with the expenses we've gone through with Brady. Thank you. God bless you all.
Sunday, September 15, 2013
GOOD NEWS AFTER SUCH A LONG DELAY!
September 15, 2013
Hey everyone, so I'm so sorry that everything is taking so long. I meant to update before, but I started up working two jobs to help keep my mind off of things. Even though they are part time, they keep me running around a lot.
But as to start at where we left off. We recovered from the NEC. We found out that it was a lot of air in the lining of his stomach, and that it was easily treatable with heavy bowel rest (meaning no food) and antibiotics. It cleared up and after two long weeks of antibiotics, Brady was starting some very very tiny feedings.
We did well and increased feedings so stinking slow. But we were so excited to be increasing that slowly. We requested it, so we can hopefully avoid any more possiblities of NEC. :)
We did have a "stool out" - were his body decided that it didn't want to process things and just pooped it all out basically. So we are finally back to full feedings. But we are looking at a couple complications.
Brady has super high blood pressure, which they say is from his being so early and his mild lung disease. The mixture they are seeing more and more that it causes high blood pressure when the babies are coming to their term date. But with the medication that they have him on he is doing well and they have it under control.
They just removed his PICC line since he has grown and it was now in a place that it wouldn't be able to be used if they did need to use again. So we are slowly losing lines and hoping that we won't have to be having them back.
His brain bleeds are remaining consistent and are unchanged. His eyes however after having two laser surgeries are now are now back to regressing ROP and are stage 2, zone 2. A big improvement from when we hit the stage 3, zone 2. He still is getting consistent weekly eye exams, unless they are needed more frequently.
We have been moved to a new team that is working with us to hopefully be able to get Brady home as soon as possible and we are looking to hopefully be having him home by Thanksgiving. Merely 6 months after being born. 2 months after his due date. He is currently doing well and we hope that will remain, he currently weighs in at 6 lbs 4.5 oz and is 18 1/2" long.
We did celebrate Bradley's birthday, and Brady's due date. It's good to know that our family is together for eternity and that no matter what my boys will be able to know one another even if they cannot physically be playing side by side in the flesh and blood. It is good to know that no matter what happens family will always prevail.
I will always be grateful not only for my husband and my sons. But for my parents, for their goodness and their willingness to be there through thick and thin. They are amazing and will always be the highlight of my memories. I apologize for all of the things that I have done that has ever brought shame, or blemish onto their family name. They should be treated in the highest regard. My siblings, whether they know it or not have helped me with their examples and their support. My in-laws have also been diligent in supporting us, and showing love.
Family is truly the one thing that you will always have. That is truly why I know without a shadow of a doubt that is why it so important to keep them central in our lives. Eternal families exist. Truly, I don't want to get all religion-y on my blog, but seriously ask me about it sometime and I can tell you about it.
Thank you everyone for your support and I'm sorry that it took so long to update. We love all you are willing to do to help us in our time of need. I will be updating again soon with photos.
Hey everyone, so I'm so sorry that everything is taking so long. I meant to update before, but I started up working two jobs to help keep my mind off of things. Even though they are part time, they keep me running around a lot.
But as to start at where we left off. We recovered from the NEC. We found out that it was a lot of air in the lining of his stomach, and that it was easily treatable with heavy bowel rest (meaning no food) and antibiotics. It cleared up and after two long weeks of antibiotics, Brady was starting some very very tiny feedings.
We did well and increased feedings so stinking slow. But we were so excited to be increasing that slowly. We requested it, so we can hopefully avoid any more possiblities of NEC. :)
We did have a "stool out" - were his body decided that it didn't want to process things and just pooped it all out basically. So we are finally back to full feedings. But we are looking at a couple complications.
Brady has super high blood pressure, which they say is from his being so early and his mild lung disease. The mixture they are seeing more and more that it causes high blood pressure when the babies are coming to their term date. But with the medication that they have him on he is doing well and they have it under control.
They just removed his PICC line since he has grown and it was now in a place that it wouldn't be able to be used if they did need to use again. So we are slowly losing lines and hoping that we won't have to be having them back.
His brain bleeds are remaining consistent and are unchanged. His eyes however after having two laser surgeries are now are now back to regressing ROP and are stage 2, zone 2. A big improvement from when we hit the stage 3, zone 2. He still is getting consistent weekly eye exams, unless they are needed more frequently.
We have been moved to a new team that is working with us to hopefully be able to get Brady home as soon as possible and we are looking to hopefully be having him home by Thanksgiving. Merely 6 months after being born. 2 months after his due date. He is currently doing well and we hope that will remain, he currently weighs in at 6 lbs 4.5 oz and is 18 1/2" long.
We did celebrate Bradley's birthday, and Brady's due date. It's good to know that our family is together for eternity and that no matter what my boys will be able to know one another even if they cannot physically be playing side by side in the flesh and blood. It is good to know that no matter what happens family will always prevail.
I will always be grateful not only for my husband and my sons. But for my parents, for their goodness and their willingness to be there through thick and thin. They are amazing and will always be the highlight of my memories. I apologize for all of the things that I have done that has ever brought shame, or blemish onto their family name. They should be treated in the highest regard. My siblings, whether they know it or not have helped me with their examples and their support. My in-laws have also been diligent in supporting us, and showing love.
Family is truly the one thing that you will always have. That is truly why I know without a shadow of a doubt that is why it so important to keep them central in our lives. Eternal families exist. Truly, I don't want to get all religion-y on my blog, but seriously ask me about it sometime and I can tell you about it.
Thank you everyone for your support and I'm sorry that it took so long to update. We love all you are willing to do to help us in our time of need. I will be updating again soon with photos.
Sunday, August 18, 2013
A Little Mix of Everything!
August 18, 2013-
Hey everyone! It's crazy to think that here in 2 1/2 short weeks, would be Brady's due date. However, we aren't looking at making it home by that time frame due to some things that have happened. Sorry, it's been so long in the updating process. Let me start from where we left off. When I left you, we were celebrating Brady's progress which had been holding steady for a little bit and he was able to keep doing super well for around 2 weeks.
August 8th, was the day that the phone call to update me turned into more than just a standard update phone call. They were calling to notify me, and us, that Brady once again had NEC. For those who don't want to read all the way through the other to know what it was again. NEC is what had us transferring down to Primary Children's in such a panic. In severe cases it can cause perforation in the bowels, bleeding, etc, and at the worst death.
At the phone call I was scared and freaking out it a nice way to put it. I bawling so hard that I later gave myself a migraine. I tried for a half an hour to get a hold of Sam. But it would ring and ring and ring then go to his voice mail. So frustrating!! So I sent him a text to update him with what was happening and then called my mom. Who of course wasn't able to understand much of what I was saying as I was still bawling and bawling so hard I could barely make out what I was trying to say. Finally, after getting frustrated beyond all else I was able to calm down enough to tell her what was happening. My parents, rocks that I frequently am so very grateful for, took off early and were on there way shortly. Promising that they could get Sam from work if I was still failing to make contact with him.
I called him again, and still nothing. Then my phone was vibrating and it was reading SAM... I hurried and picked up the phone. Sam apologized that the phone was in his work bench and he couldn't hear it over the machinery but what was going on? He hadn't even read the text message with the explanation. So I broke down and asked if he could get off so that we could go to the hospital. Mental images of my two boys, with their darkened discolored abdomens, and the extremely terrifying experiences we'd been through before were racking every thought. I picked Sam up shortly and we made a mad dart down to Salt Lake.
When we made it down, Brady was all one color (a normal baby color) he just wasn't looking so hot. He was looking miserable. They had caught it in time that nothing had perforated, he just had air in his stomach lining. Still not a good thing but nothing like what I had anticipated in my head. So we were given all the information, they difference between his x-rays was showing improvement, he wasn't on any feedings. So we stayed and visited awhile but left feeling relieved though still stressed.
The few days were showing continued improvement and eventually the air in the lining was gone and no longer showing up. It's a mystery as to why he got it but they scheduled for last Wednesday for a brain MRI to rule out infection in his brain as an option. Gratefully we found no infection, and the contrast they used was able to see better the damage done to his brain due to his brain bleeds.
Wednesday brought another surprise, when he routine eye exam brought another problem to the table. Brady has had stage 2, zone 2 ROP for awhile (this is a normal disease in the eye cause by being so premature; it can cause blindness as it gets worse.) He was now at a Stage 3, and it was going to be needing surgery for correction. They talked to us and we signed for the surgery to happen the next day on Thursday. They were doing a procedure where the laser would go around the eye and hopefully correct the abnormal growth of his blood vessels. They said he was looking at a 50-70% chance of blindness if no correction was to happen and things were to remain the same. The surgery would take his chances and lower them to 20-25%.
He has underwent his surgery and he is doing well, his eyes are still swollen, red, tender and with some discharge. But he's currently doing well, and Dad is holding him as I update. Any questions I can answer without any problems, if you leave them in the comments.
Hey everyone! It's crazy to think that here in 2 1/2 short weeks, would be Brady's due date. However, we aren't looking at making it home by that time frame due to some things that have happened. Sorry, it's been so long in the updating process. Let me start from where we left off. When I left you, we were celebrating Brady's progress which had been holding steady for a little bit and he was able to keep doing super well for around 2 weeks.
August 8th, was the day that the phone call to update me turned into more than just a standard update phone call. They were calling to notify me, and us, that Brady once again had NEC. For those who don't want to read all the way through the other to know what it was again. NEC is what had us transferring down to Primary Children's in such a panic. In severe cases it can cause perforation in the bowels, bleeding, etc, and at the worst death.
At the phone call I was scared and freaking out it a nice way to put it. I bawling so hard that I later gave myself a migraine. I tried for a half an hour to get a hold of Sam. But it would ring and ring and ring then go to his voice mail. So frustrating!! So I sent him a text to update him with what was happening and then called my mom. Who of course wasn't able to understand much of what I was saying as I was still bawling and bawling so hard I could barely make out what I was trying to say. Finally, after getting frustrated beyond all else I was able to calm down enough to tell her what was happening. My parents, rocks that I frequently am so very grateful for, took off early and were on there way shortly. Promising that they could get Sam from work if I was still failing to make contact with him.
I called him again, and still nothing. Then my phone was vibrating and it was reading SAM... I hurried and picked up the phone. Sam apologized that the phone was in his work bench and he couldn't hear it over the machinery but what was going on? He hadn't even read the text message with the explanation. So I broke down and asked if he could get off so that we could go to the hospital. Mental images of my two boys, with their darkened discolored abdomens, and the extremely terrifying experiences we'd been through before were racking every thought. I picked Sam up shortly and we made a mad dart down to Salt Lake.
When we made it down, Brady was all one color (a normal baby color) he just wasn't looking so hot. He was looking miserable. They had caught it in time that nothing had perforated, he just had air in his stomach lining. Still not a good thing but nothing like what I had anticipated in my head. So we were given all the information, they difference between his x-rays was showing improvement, he wasn't on any feedings. So we stayed and visited awhile but left feeling relieved though still stressed.
The few days were showing continued improvement and eventually the air in the lining was gone and no longer showing up. It's a mystery as to why he got it but they scheduled for last Wednesday for a brain MRI to rule out infection in his brain as an option. Gratefully we found no infection, and the contrast they used was able to see better the damage done to his brain due to his brain bleeds.
Wednesday brought another surprise, when he routine eye exam brought another problem to the table. Brady has had stage 2, zone 2 ROP for awhile (this is a normal disease in the eye cause by being so premature; it can cause blindness as it gets worse.) He was now at a Stage 3, and it was going to be needing surgery for correction. They talked to us and we signed for the surgery to happen the next day on Thursday. They were doing a procedure where the laser would go around the eye and hopefully correct the abnormal growth of his blood vessels. They said he was looking at a 50-70% chance of blindness if no correction was to happen and things were to remain the same. The surgery would take his chances and lower them to 20-25%.
He has underwent his surgery and he is doing well, his eyes are still swollen, red, tender and with some discharge. But he's currently doing well, and Dad is holding him as I update. Any questions I can answer without any problems, if you leave them in the comments.
Thursday, August 1, 2013
Yard Sale
so there has been a change in the yard sale that is taking placing tomorrow and saturday, august 2nd and 3rd. it will be held in the eagles parking lot not del taco. the address is roughly 900 s wall ave ogden, ut 84404. there will be food for sale as well at the items that have been donated for our awesome yard sale.
Tuesday, July 30, 2013
So much good news!!!
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| Size Comparison (Holding hands with Mommy) |
So sorry everyone that the update took so long. There has been so much good news that I've been getting to work with a lot of new groups that are going to help Brady. So I haven't been up to date on my blog. But here goes the run down. :)
We no longer have a breathing tube down the throat. Brady took it upon himself to take it out himself. The day after the doctor was talking about if Brady removed it himself they'd try the nasal cannula, but that they would see for another few days. A day later, Brady was sleeping on his tummy, popped himself up and pulled that tube out. He has been rocking that nasal cannula and is doing well on it. There is talk of going to the next stage in nasal cannulas, a high flow. Then from there there is a normal cannula, then sweet blissful freedom.We were able to start holding him. It was the most amazing experience that I cannot even put into words. I have held him almost every day since. I know I'm a little selfish, but he likes it too. He loves being held.
He is now in a big boy crib. He has graduated from his giraffe isolette. He is on the small side for a baby to be in the big boy crib. But they say he's doing great. He is even wearing preemie baby clothes.This is his happy face when sucking on his binkie and he has learned a new trick and now smiles in his sleep. :) So adorable. Things are all looking on the up, they are thinking roughly around beginning of September to reattach his intestines back together. :) 8 weeks from his last surgery.e most amazing experience that I cannot even put into words. I have held him almost every day since. I know I'm a little selfish, but he likes it too. He loves being held.
He is now in a big boy crib. He has graduated from his giraffe isolette. He is on the small side for a baby to be in the big boy crib. But they say he's doing great. He is even wearing preemie baby clothes. We are even upto 21 ml every 3 hours... and he keeps going up with the milk intake.
This is his happy face when sucking on his binkie and he has learned a new trick and now smiles in his sleep. :) So adorable. Things are all looking on the up, they are thinking roughly around beginning of September to reattach his intestines back together. :) 8 weeks from his last surgery.
As I've been seeing more and more pregnant women in the last portion of their pregnancy, I feel gipped. I totally wish I could experience all of the uncomfortable sensations. (Though everyone is telling me that it's really not awesome and it's nothing to miss.) I wish I was huge, and getting kicked lots. But then I look at Brady and I can't wish for anything more perfect than the little boy that's right in front of me. Even though he's not inside, we have stuck this out together as a team. He is willing to let me know how much he needs his mommy, and I know that it makes me feel better knowing that I am getting better at reading that special little boy. I love it. And I can't wait to take this little stinker home. :)
Let me know if you have any questions or comments. I would love to answer.
Monday, July 15, 2013
Brady is Getting Better Slowly :)
JULY 15, 2013:
So, Brady is doing well. They will be removing the broad spectrum antibiotic! He is still going to have the one for yeast but we are removing things and not adding. I feel like we are making progress in the right direction. Slowly. He has been a little stinker, but he is so worth it that it's amazing.
Hoping to be getting hold him sometime in the future. The sooner the better, but with everything he has going on, that's a little off limits. I did get to "hold" him in a containing touch to calm him down over the weekend. He seemed to be able to calm down much faster when I talked with him, and hummed to him. He really does enjoy that and stories, but I forgot to take his stories with me today. I'll have to bring one down with me tomorrow.
He is growing like a weed, his hair and finger nails are a dying testament to those words. He can even have his little bed head moments going on with his hair now. I was joking with Sam that we will have to have him get a haircut before we take him on home. :) I think I'm funny, Sam just shrugged like I'm a strange duck.
A little more about the fundraising events if anyone is interested:
So, Brady is doing well. They will be removing the broad spectrum antibiotic! He is still going to have the one for yeast but we are removing things and not adding. I feel like we are making progress in the right direction. Slowly. He has been a little stinker, but he is so worth it that it's amazing.
Hoping to be getting hold him sometime in the future. The sooner the better, but with everything he has going on, that's a little off limits. I did get to "hold" him in a containing touch to calm him down over the weekend. He seemed to be able to calm down much faster when I talked with him, and hummed to him. He really does enjoy that and stories, but I forgot to take his stories with me today. I'll have to bring one down with me tomorrow.
He is growing like a weed, his hair and finger nails are a dying testament to those words. He can even have his little bed head moments going on with his hair now. I was joking with Sam that we will have to have him get a haircut before we take him on home. :) I think I'm funny, Sam just shrugged like I'm a strange duck.
A little more about the fundraising events if anyone is interested:
- July 16, 2013 - THIS IS TOMORROW! (Oops I should've done this earlier) The Bake Sale, is going to be held in Ogden, UT. On the Meadowview loop. We would love to see anyone if they would like to donate. :)
- August 2-3, 2013- Yard Sale, being held in Ogden, UT as well. It is in the large parking lot out front of Del Taco, just off of Wall Ave, and roughly 12th Street. Could be a great opportunity to find some treasures.
Friday, July 12, 2013
July 12, 2013
JULY 12, 2013:
Hey everyone!! It's so exciting, got to come down for the first time by train. It was an adventure at first, but I made it. I am liking it a lot. It's a little different than driving for sure. I haven't taken a bus since high school really. It showed. I got off on the wrong stop, took the wrong bus, walked a long way to a mysterious bus station (I didn't know where it was but I found it in my walking). Talked to a bunch of people, who helped me to get on the right bus, and I made it to the hospital at about 10. I was supposed to have arrived around 9. But oh well, just glad that my prayers were answered even if I didn't realize I was praying at the time.
But thank you to everyone who has been helping us out. I know that our family friend has planned a couple of fund raiser events for us, to help us out, as well as there has been an account opened for Brady at Golden West Credit Union; you can walk into any location and ask to donate to the Brady Wright Donation Fund. For those who have been wondering.
Life has been busy but it is going on Brady has had a great week, the last 5 days have only been quite good news. They tried putting his anderson tube (the one that sucks all the gunk out of his stomach) on down drain, he didn't tolerate it very well. So it's back on suction. They can't start feedings until he begins to tolerate the down drain first.
He has been harassing the nurses by peeing out his catheter, several times. He is now catheter free, I believe he is probably proud of himself. :) He was able to get that bandage removed off of his stomach, and it's starting to heal up nicely.
They are telling me that he's looking good and much better. They are setting goals for him to heal, rest and grow. :) I am starting to get used to the hospital setting and I'm a little terrified for when we are able to take him home, about being able to care for him as well as the nurses have been able to. I know that I have a lot to learn to make this little guys life as easy as possible. I can't wait.
He is resting right now, and I am getting ready to catch another bus to start the journey on home, but I cannot wait to be back soon. I love that little boy, watching his little eyes open up when you talk with him, or watching him settle a little bit when you hum, it can definitely make your day very happy.
Hey everyone!! It's so exciting, got to come down for the first time by train. It was an adventure at first, but I made it. I am liking it a lot. It's a little different than driving for sure. I haven't taken a bus since high school really. It showed. I got off on the wrong stop, took the wrong bus, walked a long way to a mysterious bus station (I didn't know where it was but I found it in my walking). Talked to a bunch of people, who helped me to get on the right bus, and I made it to the hospital at about 10. I was supposed to have arrived around 9. But oh well, just glad that my prayers were answered even if I didn't realize I was praying at the time.
But thank you to everyone who has been helping us out. I know that our family friend has planned a couple of fund raiser events for us, to help us out, as well as there has been an account opened for Brady at Golden West Credit Union; you can walk into any location and ask to donate to the Brady Wright Donation Fund. For those who have been wondering.
Life has been busy but it is going on Brady has had a great week, the last 5 days have only been quite good news. They tried putting his anderson tube (the one that sucks all the gunk out of his stomach) on down drain, he didn't tolerate it very well. So it's back on suction. They can't start feedings until he begins to tolerate the down drain first.
He has been harassing the nurses by peeing out his catheter, several times. He is now catheter free, I believe he is probably proud of himself. :) He was able to get that bandage removed off of his stomach, and it's starting to heal up nicely.
They are telling me that he's looking good and much better. They are setting goals for him to heal, rest and grow. :) I am starting to get used to the hospital setting and I'm a little terrified for when we are able to take him home, about being able to care for him as well as the nurses have been able to. I know that I have a lot to learn to make this little guys life as easy as possible. I can't wait.
He is resting right now, and I am getting ready to catch another bus to start the journey on home, but I cannot wait to be back soon. I love that little boy, watching his little eyes open up when you talk with him, or watching him settle a little bit when you hum, it can definitely make your day very happy.
Friday, July 5, 2013
Following up on the Surgery
JULY 5, 2013:
Hi everyone!! So surgery went well on Monday, they had to remove a quarter of his right colon. So for right now his intestine is attached to his stomach, and he will poop into a bag for a little bit. He's got to get bigger before they will attach his intestines all back together. He had a follow up surgery on Wednesday because they found that he had a few abscesses on his intestines that were full of fluid and pus. They did have one of the cultures that they took come back positive for yeast so he will stay on his antibiotics for at least another two weeks.
Wednesday they washed out his gut, and were pleased to see that it was looking good, so they closed him on up. This is his pre and post op pictures.
He is doing well though, and is now on a new ventilator. They say that healing up from the operation will probably take 7-10 days, and then by that point we can start talking about feeding him.
I know he hasn't eaten anything, since he was a week old. He is now 7 weeks. So they will have to start very slowly with the feedings. But if he eats anything like his dad, I know that he will be chowing down faster than we can blink. My favorite of these photos is his little "uh-oh spaghettios" face in the pre-op pictures. I think I'm sold.
He did get to meet with the rainbow kids- what an awesome organization! They were great to get to know. I look forward to continuing to work with them throughout Brady's life. They definitely have thought some of these things through.
Shout out to the amazing family and friends that we have! I really appreciate all that they are willing to do for us. They are so willing to help us out, at the drop of a hat. I love them all.
Thank you everyone that is following the blog. I know that it's been rough trying to follow with the crappy phone updates and that they've been days apart. I will try to do better on updating you all from the laptop preferably. I know that your support and love has been felt, we can definitely tell that there are prayers being said for our little boy and us. Thank you, once again. And we will update soon. Have a happy Holiday! I hope you enjoyed the fourth. Thank you to all of the military personnel that are out there making it so we can stay free. But that is also one thing that the citizens of America are doing as well, making America a place that we all want to remain living. Bless you all.
| Pre operation |
Wednesday they washed out his gut, and were pleased to see that it was looking good, so they closed him on up. This is his pre and post op pictures.
| Pre operation |
He is doing well though, and is now on a new ventilator. They say that healing up from the operation will probably take 7-10 days, and then by that point we can start talking about feeding him.
I know he hasn't eaten anything, since he was a week old. He is now 7 weeks. So they will have to start very slowly with the feedings. But if he eats anything like his dad, I know that he will be chowing down faster than we can blink. My favorite of these photos is his little "uh-oh spaghettios" face in the pre-op pictures. I think I'm sold.
| Post operation |
Shout out to the amazing family and friends that we have! I really appreciate all that they are willing to do for us. They are so willing to help us out, at the drop of a hat. I love them all.
| Pre operation |
Saturday, June 29, 2013
Surgery on Monday.
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.
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.
Wednesday, June 26, 2013
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.
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.
Sunday, June 23, 2013
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.
Tuesday, June 18, 2013
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.
Sunday, June 16, 2013
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.
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.
Friday, June 14, 2013
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.
Wednesday, June 12, 2013
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.
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.
Sunday, June 9, 2013
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.
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.
Wednesday, June 5, 2013
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.
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.
Sunday, June 2, 2013
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.
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.
Friday, May 31, 2013
2 Weeks, and Some Thoughts.
MAY 31, 2013
Last day of May, and how am I celebrating by seeing my little Brady Bug. He is still holding stable, but did have a bone survey done (which if you're like me, you've no idea what this is... it's like an x-ray of all his bones). They found out he has a corner fracture in his left femur (which isn't very fun, they don't know how old it is where his bones aren't mature enough to be very hard). They also said that he has a low amount of minerals in his bones due to being preemie too. I was curious and had to ask and see if the fracture might be why his levels of infection were up. But they don't think so where it wouldn't stay elevated for as long as it has.
I did get to help bath him today, or really wipe him down and sponge him. It was awesome. Though he honestly, didn't like it very much. especially not when they washed his hair. But I told him he was a big strong boy and he needed to be tough. He even seemed to listen and tolerated it pretty well after that. :) We read some books. "Me and My Dad" and "If You Give A Mouse A Cookie", then I hummed him a song and talked to him a bit. :) I loved it. I even got to hold him a bit so that they could change his sheets (holding him at this stage is just lifting him up a bit, but still freaking awesome!!!).
I love being able to sit and have some alone time with him (Sam teases me for reading to him, and stuff...I think it's absurd to him), and getting to hold him and help; it makes me feel like I'm really a mom. Kinda let's that fact sink home, and I absolutely love it. I did find a work from home position with Convergy's; I applied. I want to help make an income but I also want to be there for everything with Brady, no matter how small.
Sitting with him today, I felt so comforted. It's almost like there is so much in life that we miss. As he's fighting this infection, he's still pretty happy, and he's only 2 weeks old. I mean what have I complained about in the last two weeks. Breastfeeding/Pumping (huge pain every two hours ish to be sitting there forever to stash up milk and not let it dry up, but really totally worth it for my baby), having to drive further, the drivers on the road, etc...
He can't talk but I'm sure he's not complaining about his life. Such an inspirational little boy, and he's teaching his mommy so much. She's so blessed to have him. I know he loves us, and he seems to be able to recognize my voice, which is so cool. I love it. Just cannot wait until he is old enough to come home.
I know life will through us a curveball, but we can handle whatever comes our way. thank you Brady for showing us the best in life. :)
Last day of May, and how am I celebrating by seeing my little Brady Bug. He is still holding stable, but did have a bone survey done (which if you're like me, you've no idea what this is... it's like an x-ray of all his bones). They found out he has a corner fracture in his left femur (which isn't very fun, they don't know how old it is where his bones aren't mature enough to be very hard). They also said that he has a low amount of minerals in his bones due to being preemie too. I was curious and had to ask and see if the fracture might be why his levels of infection were up. But they don't think so where it wouldn't stay elevated for as long as it has.
I did get to help bath him today, or really wipe him down and sponge him. It was awesome. Though he honestly, didn't like it very much. especially not when they washed his hair. But I told him he was a big strong boy and he needed to be tough. He even seemed to listen and tolerated it pretty well after that. :) We read some books. "Me and My Dad" and "If You Give A Mouse A Cookie", then I hummed him a song and talked to him a bit. :) I loved it. I even got to hold him a bit so that they could change his sheets (holding him at this stage is just lifting him up a bit, but still freaking awesome!!!).
I love being able to sit and have some alone time with him (Sam teases me for reading to him, and stuff...I think it's absurd to him), and getting to hold him and help; it makes me feel like I'm really a mom. Kinda let's that fact sink home, and I absolutely love it. I did find a work from home position with Convergy's; I applied. I want to help make an income but I also want to be there for everything with Brady, no matter how small.
Sitting with him today, I felt so comforted. It's almost like there is so much in life that we miss. As he's fighting this infection, he's still pretty happy, and he's only 2 weeks old. I mean what have I complained about in the last two weeks. Breastfeeding/Pumping (huge pain every two hours ish to be sitting there forever to stash up milk and not let it dry up, but really totally worth it for my baby), having to drive further, the drivers on the road, etc...
He can't talk but I'm sure he's not complaining about his life. Such an inspirational little boy, and he's teaching his mommy so much. She's so blessed to have him. I know he loves us, and he seems to be able to recognize my voice, which is so cool. I love it. Just cannot wait until he is old enough to come home.
I know life will through us a curveball, but we can handle whatever comes our way. thank you Brady for showing us the best in life. :)
Thursday, May 30, 2013
Day 13!!
MAY 30, 2013
So update from the phone again. Sorry. But I'll work on getting it fixed with the laptop soon hopefully. Brady is holding steady, they are working on finding out what the infection is. He is looking a little bit better. We had a conference with the doctor to talk about his care and I must say I love that Sam and I are on the same page without even talking. We were asked how we felt about having a 50 perfect chance of a normal child... I teared up when Sam said that he could handle any disability our boy may have...exactly how I feel too. Brady is our world. We are so gratefully for everyday we have him. We celebrate the good in everything. If we were to dwell on the negative then life wouldn't be worth struggling through. But trust me when I say that life is amazing. Always look at the small victories they are worth more than any major downfall. We haven't updated the blog because Brady's been holding stable and they haven't been running as many tests. I love our little boy like no other, we are all wrapped. Update you all soon. Thank you for all the love, support and prayers.
So update from the phone again. Sorry. But I'll work on getting it fixed with the laptop soon hopefully. Brady is holding steady, they are working on finding out what the infection is. He is looking a little bit better. We had a conference with the doctor to talk about his care and I must say I love that Sam and I are on the same page without even talking. We were asked how we felt about having a 50 perfect chance of a normal child... I teared up when Sam said that he could handle any disability our boy may have...exactly how I feel too. Brady is our world. We are so gratefully for everyday we have him. We celebrate the good in everything. If we were to dwell on the negative then life wouldn't be worth struggling through. But trust me when I say that life is amazing. Always look at the small victories they are worth more than any major downfall. We haven't updated the blog because Brady's been holding stable and they haven't been running as many tests. I love our little boy like no other, we are all wrapped. Update you all soon. Thank you for all the love, support and prayers.
Sunday, May 26, 2013
Day #9... Can you believe it?!
MAY 26, 2013
Here is the daily tidbit, you've all been waiting for. Brady is doing well, he is on the up road. Looking better than Friday for sure. We went and visited him this afternoon and got to touch the little man. Though he was flailing his arms about a bit. Sam was being so gentle that Brady kept jerking his little hand out of Daddy's reach. Kind of funny to watch Sam trying to hold his little hand gently, but watching it jerk out of Daddy's touch.
He had his own little anger moment when they took the iv out of his hand, since he's not needing anymore blood transfusions. They put him on a new ventilator, so he's not vibrating like a model t. I bet he's liking the freedom. He's got a really high urine output due to his kidneys being immature. They are not keeping what they should be and just getting rid of lots of fluids. So to make sure he doesn't get dehydrated they are going to be giving him more fluids. They won't be doing feedings for a while, so he's getting all his nutrition through the fluid lines in a mixture that's made up just for him.
His blood pressure is high, but that is possibly a side effect from one of the drugs that they had him on. He's been having some more quiet nights and we've really been needing those. Both Sam and I with the stress have been running a little short on sleep.
So that's all of the good news wrapped up pretty neatly. So I've got the pictures that I promised of the baby room. :) Yes, now you can all see it. My parents say it's 'bright', and that he will have some getting used to the color to do. But I love it...so here is our work in progress... though getting close to being done.
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Here is the daily tidbit, you've all been waiting for. Brady is doing well, he is on the up road. Looking better than Friday for sure. We went and visited him this afternoon and got to touch the little man. Though he was flailing his arms about a bit. Sam was being so gentle that Brady kept jerking his little hand out of Daddy's reach. Kind of funny to watch Sam trying to hold his little hand gently, but watching it jerk out of Daddy's touch.
He had his own little anger moment when they took the iv out of his hand, since he's not needing anymore blood transfusions. They put him on a new ventilator, so he's not vibrating like a model t. I bet he's liking the freedom. He's got a really high urine output due to his kidneys being immature. They are not keeping what they should be and just getting rid of lots of fluids. So to make sure he doesn't get dehydrated they are going to be giving him more fluids. They won't be doing feedings for a while, so he's getting all his nutrition through the fluid lines in a mixture that's made up just for him.
His blood pressure is high, but that is possibly a side effect from one of the drugs that they had him on. He's been having some more quiet nights and we've really been needing those. Both Sam and I with the stress have been running a little short on sleep.
So that's all of the good news wrapped up pretty neatly. So I've got the pictures that I promised of the baby room. :) Yes, now you can all see it. My parents say it's 'bright', and that he will have some getting used to the color to do. But I love it...so here is our work in progress... though getting close to being done.
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