My auntie M said "to go buy a lottery ticket" the other day, if any one has a chance of being "THE ONE" to win, it would be Brody. This kid is pfighting against all the odds and coming out a winner - so far. He is 1 of 13 in the world with his trachea sleeve battle, 1 out of every 100,000 child that is born with Pfieffer syndrome, and of course he was in the 5% of the "brain shunt" population to get a BROKEN shunt. He is my lucky little angel.
The friday before Christmas, was the big "B" day - brain surgery. It wasn't an extensive sort of brain surgery, but it was still brain surgery. The day went VERY well. Better than I expected. Except for the delay on surgery time. It went from 130p to 330p. Not that big of a deal, but you try explaining to a hungry 3 month old why his momma isn't feeding him. Dr. G, our neurosurgeon, is a great dr. One of the best, or thats what I hear. He came in, explained the procedure, threw a few jokes in there to take the edge off, and wheeled Brody away. I was comfortable at that moment and knew my angel would come out strong. 1 1/2 hours later, we got our page that he was done. Heading to recovery, and very much alive. I always hate the walk into recovery, its hard to see your baby in that "state". Pale, shivering, still....but this time was different. As soon as he heard me tell the nurse hello, that kid screamed his head off. If you could hear him cry, you would've heard him all the way out the door. As soon as I could, I picked him up and held him and we cuddled for at least 2 hours. Sweet sweet victory. He did really well with recovery. By saturday afternoon they were releasing us, and we were free as birds to go home. The next couple of days were routine. We were glad to be home for Santas big visit. It was so nice to have our family drive up Christmas day to share the holiday joy with us. I cooked all day, Gabe cleaned up after our mess all day, and we just soaked in all the wonderful family time. It was amazing to have so much love and joy in our house. I don't think Brody was put down 1 time. He sure is a spoiled little cuddle bug.
Thursday was a different story. Gabe and I both had a long list of "chores" to do. Our nurse for the day had noticed a rash on Brody and his little bit of fussiness...We gave him some tylenol and put some cream on his rash, and all was well for a little bit. But by the time he woke up from his afternoon nap, this momma bear was very concerned. The side of his head where his shut is was swollen beyond belief and his "soft spot" on the top of his head was sunken in. Not a sight anyone wants to see. I called the neurosurgeon and sent them pictures, and 2 min after receiving the pics, they called back and said take him to the hospital and they would admit us. After getting there, they took us down to get a CT scan and and X-ray....and it showed exactly what they had expected, his shunt was broken and wasn't even attached to his ventricle. The fluid was building up. Although he wasn't showing symptoms of serious discomfort, if we would've waited a little longer, he would've been in some pain. My poor baby, my heart was hurting for him. All I wanted to do was cuddle and take his place. What are the odds that this would happen to him. They couldn't really tell us why it happened. Only, this happens to 5% of shunts placed. It could have slipped out, it could have not been placed right, who knows... all I know is Dr. G is now on my "list"...my list of Drs that I don't want to see ever again... there are now 3 on that list. I know it may not be his fault, but I want an explanation. I want to know why MY baby had to deal with this. So here we are, a week later, going back in for his 2nd brain procedure in a week. POOR LITTLE GUY. This time we had Dr. L. Not my favorite, but he is the one doing it. If I could ask for his nurse practitioner Maura to do it, I would. Shes my new favorite...and its not just because she brought us starbucks friday morning. She just knew her stuff. So Friday afternoon, they wheeled Brody back for a shunt re-do...hopefully the only one they will have to do. Like the first time, he did amazing on recovery. He really is a strong little man. Its like he goes in and says... "I'll be stronger this time". He has a bigger scar on his head this time...but hey..chicks dig scars, right?? So, the post op CT scan showed that the shunt was in place and draining properly..... we are free as birds to go home yet again. No telling us twice... we ran out of that place.
We are exhausted and drained - emotionally, mentally, and physcially - the hospital sofa beds are hard on your back, but WE ARE HOME... safe, alive, and recovering well.
Thank you EVERYBODY under the sun for the prayers, thoughts, well wishes, calls, text, messages, EVERYTHING. Yall are OUR support system, and we would be lost with out yall. Thank you for supporting us. Its one more bump in the road we got through. PRAISE JESUS.
Now, that we are home and recovering, its back to the daily grind. Physical and Occupational Therapy. I pray that Brody starts to get on track with his "grabby" hands and hits the milestones that we need to be at... I know I shouldn't stress about the little things, but what mother doesn't want their child to play, and grab, and put things in their mouth. Even if it takes time, Im sure we will get there.
Its 2 days until 2014... a new year that WILL bring NEW CHEERS..... I am faithful, that we will continue to have special memories with our Brody Bear, and we will continue a victorious PFIGHT for him. I know we have some MAJOR surgeries coming up this year, but it won't stop us from PFIGHTING...one day at a time, one prayer answered at a time, and one victory, big or small... its all GOING to happen in time. And, I take it as a sign that as I finish writing this, the song "Jesus take the wheel" by Carrie Underwood comes on. Im letting go and letting God do his thing.
I pray that EVERYONE of you are blessed with health and happiness this New Year. Keep Pfighting for everything you believe in, I know we will.
http://www.gofundme.com/58c7p4
Love you!
Stephanie
Monday, December 30, 2013
Friday, December 20, 2013
A rock on the outside, but a mess on the inside
Happy Thursday yall... or I should say happy day before the big "b" day.... tomorrow we go in for brain surgery, and Im a mess. A.COMPLETE.MESS. I am sitting here with Brody on my lap, and savoring every sweet precious moment with him. He is such a mommas cuddle bug, its amazing. Im sad I wont get this for a couple of days, but I am keeping my hopes up that come Christmas morning, we will be able to cuddle all day by our Christmas tree. It will be sad that we wont be able to make it "home" to SA for Christmas, but if we can at least have Brody home for Christmas, Ill take it!!
Things have been weird lately...Ive been in a hole, a dark hole, where I don't want to really talk to anyone, or do anything but be home holding him and talking to Gabe. Just when we got into a routine, and kinda "forgot" that we had these issues to deal with, we got hit with the brain surgery deal. It was like a fast ball coming right for us. So we have been dealing with getting ready for that this week. Wednesday we had his pre-op appointment, where they had to draw his blood, and it was not fun. If you could hear him cry, you would've heard it from the parking lot. They couldnt get into a vein in his arm, so they had to do it from his head...my poor bear. It was quick, but still... OUCH. We then got a phone call today saying that his levels were off, so they needed to re draw his blood....geeeze, here we go again. My poor baby....at least its them hes gonna hate and not me!! So, now that that is all done, tomorrow is the big day. We are ready! Maybe.
There are 2 statements that I have heard multiple times in the past couple of days that have really got me thinking and appreciating more than ever.
1. "The way you are handling all of this is simply amazing...Im so proud of you for being so strong".
- First off, I would be NOTHING with out all of my support. That includes EVERY SINGLE person that reads this. Even if I dont know you. You are truly supporting us just by your thoughts and prayers. I would be NO where with out Gabe, our families, our friends, the Drs and Nurses at Dell, and every one in between. Yes, I did have to learn how to be a nurse and a mother at the same time, but that in its self takes a lot of support. We had people cheering us on from the moment he was born. The nurses taught me how to take care of my son, and with that comes an enormous amount of strength. It took me a long time to accept the challenge, but once I realized that I was not in this alone, it was no biggie. I have accepted this challenge, and think of it now as a blessing. It makes me look around more and appreciate the little things. I appreciate and enjoy every tiny thing I can. From the tiny little smiles, the way he chews on his hands, the way he kicks his feet, to every blow out of his diaper.... it means that he is ALIVE. He is healthy...somewhat...he has a few minor issues, but for now... its what we have... we have HIM...HOME...with us... Sure I have never heard him cry, or I won't hear him giggle for the first time, but just seeing him smile melts my heart every time. I know he is giggling up a storm... we can only just see it.... and thats OK with me. He is what makes me strong. I will pfight till the very last minute for him. He is my reason. I can only handle this with courage, faith, and a positive attitude. So yes, I will be strong, I will be faithful, and I will keep this smile on my face...just dont think that I am not losing it on the inside. SO I ask this of you... keep praying for us, keep reading, keep thinking of us... its all of you that make me stronger.
2. "Wow...he looks so good, yall must be doing a great job taking care of him"....
- Thank you. Thank you to the people that taught us how to take care of him. THANK YOU Gabe for being my partner in this and helping me step up to the plate. Thank you to our families who had to learn with us how to care for him. Thank you to our friends that get us out of the house to take care of US mentally, and let us have a bit of normalcy. This is NOT a single person job. We are a team. A loving and pfighting team for Brody. We will give him as normal of a life as possible. It is a very hard job, but again...its for him. Because yall are taking care of us, emotionally, mentally and spiritually, we as a family are able to care for him. I couldnt be more thankful for the support we have. I LOVE that Gabe and I do this together. Every night. Let me tell you. Trach care is NOT easy. Its a 2 person job, and being in our routine, makes me happy, stronger, and a better person for it. I love that my mom put her fear aside and jumped in to help me with trach care when Gabe was gone. Sure she was scared, but she put on her super grandma cape and did an excellent job. Like its something she did on a daily basis. I love that both of our families will drive up here on the weekends or week days and spend the day with us and give us that normalcy. It makes me appreciate that we are not confined to the house. Some babies with trachs cant leave their house, We can. So yes, I will pat my self on the back and Gabe on his, because we do take GREAT care of him. We do all we can for him. He is our boy. Yes, sometimes we are super tired and dont feel like doing trach care, but its our routine, and it gets done. And when we wake up in the morning and see his little face smiling and silently giggling in his crib... I KNOW in my heart we are doing a good job. Who wouldn't try their best to care for their child?
So my friends, I ask this of you... PRAY HARD for us tomorrow and every day. Keep us in your thoughts. And most importantly, appreciate all that you have. From the late night cries, to the early morning giggles.....look up and thank the big guy up there for what you have, and pray for those that dont have it.
Good night.
http://www.gofundme.com/58c7p4
Love to all
-S
Things have been weird lately...Ive been in a hole, a dark hole, where I don't want to really talk to anyone, or do anything but be home holding him and talking to Gabe. Just when we got into a routine, and kinda "forgot" that we had these issues to deal with, we got hit with the brain surgery deal. It was like a fast ball coming right for us. So we have been dealing with getting ready for that this week. Wednesday we had his pre-op appointment, where they had to draw his blood, and it was not fun. If you could hear him cry, you would've heard it from the parking lot. They couldnt get into a vein in his arm, so they had to do it from his head...my poor bear. It was quick, but still... OUCH. We then got a phone call today saying that his levels were off, so they needed to re draw his blood....geeeze, here we go again. My poor baby....at least its them hes gonna hate and not me!! So, now that that is all done, tomorrow is the big day. We are ready! Maybe.
There are 2 statements that I have heard multiple times in the past couple of days that have really got me thinking and appreciating more than ever.
1. "The way you are handling all of this is simply amazing...Im so proud of you for being so strong".
- First off, I would be NOTHING with out all of my support. That includes EVERY SINGLE person that reads this. Even if I dont know you. You are truly supporting us just by your thoughts and prayers. I would be NO where with out Gabe, our families, our friends, the Drs and Nurses at Dell, and every one in between. Yes, I did have to learn how to be a nurse and a mother at the same time, but that in its self takes a lot of support. We had people cheering us on from the moment he was born. The nurses taught me how to take care of my son, and with that comes an enormous amount of strength. It took me a long time to accept the challenge, but once I realized that I was not in this alone, it was no biggie. I have accepted this challenge, and think of it now as a blessing. It makes me look around more and appreciate the little things. I appreciate and enjoy every tiny thing I can. From the tiny little smiles, the way he chews on his hands, the way he kicks his feet, to every blow out of his diaper.... it means that he is ALIVE. He is healthy...somewhat...he has a few minor issues, but for now... its what we have... we have HIM...HOME...with us... Sure I have never heard him cry, or I won't hear him giggle for the first time, but just seeing him smile melts my heart every time. I know he is giggling up a storm... we can only just see it.... and thats OK with me. He is what makes me strong. I will pfight till the very last minute for him. He is my reason. I can only handle this with courage, faith, and a positive attitude. So yes, I will be strong, I will be faithful, and I will keep this smile on my face...just dont think that I am not losing it on the inside. SO I ask this of you... keep praying for us, keep reading, keep thinking of us... its all of you that make me stronger.
2. "Wow...he looks so good, yall must be doing a great job taking care of him"....
- Thank you. Thank you to the people that taught us how to take care of him. THANK YOU Gabe for being my partner in this and helping me step up to the plate. Thank you to our families who had to learn with us how to care for him. Thank you to our friends that get us out of the house to take care of US mentally, and let us have a bit of normalcy. This is NOT a single person job. We are a team. A loving and pfighting team for Brody. We will give him as normal of a life as possible. It is a very hard job, but again...its for him. Because yall are taking care of us, emotionally, mentally and spiritually, we as a family are able to care for him. I couldnt be more thankful for the support we have. I LOVE that Gabe and I do this together. Every night. Let me tell you. Trach care is NOT easy. Its a 2 person job, and being in our routine, makes me happy, stronger, and a better person for it. I love that my mom put her fear aside and jumped in to help me with trach care when Gabe was gone. Sure she was scared, but she put on her super grandma cape and did an excellent job. Like its something she did on a daily basis. I love that both of our families will drive up here on the weekends or week days and spend the day with us and give us that normalcy. It makes me appreciate that we are not confined to the house. Some babies with trachs cant leave their house, We can. So yes, I will pat my self on the back and Gabe on his, because we do take GREAT care of him. We do all we can for him. He is our boy. Yes, sometimes we are super tired and dont feel like doing trach care, but its our routine, and it gets done. And when we wake up in the morning and see his little face smiling and silently giggling in his crib... I KNOW in my heart we are doing a good job. Who wouldn't try their best to care for their child?
So my friends, I ask this of you... PRAY HARD for us tomorrow and every day. Keep us in your thoughts. And most importantly, appreciate all that you have. From the late night cries, to the early morning giggles.....look up and thank the big guy up there for what you have, and pray for those that dont have it.
Good night.
http://www.gofundme.com/58c7p4
Love to all
-S
Thursday, December 12, 2013
The rollercoaster you dont want to be on
I remember when I was younger, my parents took my sister and I to Disney World and there was this ONE ride I speciffically remember. Space Mountain. We waited in line for what seemed like hours back then. As we finally got to the "space car", I remeber my sister stepping in and then stepping right out. She decided she didnt want to go on it. All that waiting and she just stepped right off. It was a roller coaster... what could possibly be so scary? Well... it was a scary ride, a very scary ride, especially to a child. But it was a ride that Im glad I had, it was an experience...one I can say I made it through. Im sure my sister was glad she didnt have to endure that ride, and back then it was probably the best decision. She made it out alive, and I made it out alive.... 2 different ways, but none the less, we both made it.
The emotions of life have been just that lately... A rollercoaster. A ride I would not choose to go on, but I am glad that I get the chance to endure it. Im proud that GOD chose me to take this ride. One way or another I will make it through this and I will get my family through this. It might include me kicking and screaming and a lot of crying... but WE will pfight. Lately, I have been all over the place emotionally. I've had my good days, I've had my sad days, I've had my lonely days, and I've had my fun days. Up, down, up, down, straight, curved, but today it went straight down....
We had a visit with the Craniofacial and Neurosurgery team this morning. They are the 2 teams that will correct Brody's skull. We met the Craniofacial team when we were in the NICU, and I can't say enough great things about them. Neuro was a new meeting today. And although I LOVE the Dr. I didn't like the news. One of the aspects of Pfieffer syndrome is hydocephalus, which is basiclly a large amount of fluid in the ventricles. It causes the brain to grow rather quickly. And because Brody's skull was fused before it was supposed to, the brain doesnt have very much room to grow, which also causes the skull to grow in a "clover leaf" shape. The brain takes what room it has, and it fills the spots. The growth needs to be slowed down. The only way to do that is to place a "shunt" in his brain.
WAIT...what? My 3 mo old is having brain surgery? I was mentally prepared to go in to this appointment to talk about the surgery for the correction of the skull when he is 6mos, but BRAIN surgery? My emotional ride just went straight down....
Gabe wasn't there with us today. He is out of town for work. He is the strong one. He is OUR rock. He does the talking and listening, while I usually just rock Brody and stare into the distance pretending that I am understanding all of this. NOT TODAY... I had to put on my big girl panties and take all the information, understand it, ask questions for the both of us, rock Brody, and put on my brave face...a face that I had to put on when I sat down for the space mountain ride.
OK...we are having brain surgery. Its not a long surgery, only about 30 min... but its still brain surgery. What I also wasnt prepraed for was the Dr telling us that it needs to be soon... like NOW... before Christmas...WHAT?? Before Christmas?? Thats like 2 weeks away....
Brain Surgery....the real life version of space mountain. A scary ride for sure, but one that I KNOW we will step off of alive, stronger as a family and back on the steady and straight part of this emotional rollercoaster.
http://www.gofundme.com/58c7p4
The emotions of life have been just that lately... A rollercoaster. A ride I would not choose to go on, but I am glad that I get the chance to endure it. Im proud that GOD chose me to take this ride. One way or another I will make it through this and I will get my family through this. It might include me kicking and screaming and a lot of crying... but WE will pfight. Lately, I have been all over the place emotionally. I've had my good days, I've had my sad days, I've had my lonely days, and I've had my fun days. Up, down, up, down, straight, curved, but today it went straight down....
We had a visit with the Craniofacial and Neurosurgery team this morning. They are the 2 teams that will correct Brody's skull. We met the Craniofacial team when we were in the NICU, and I can't say enough great things about them. Neuro was a new meeting today. And although I LOVE the Dr. I didn't like the news. One of the aspects of Pfieffer syndrome is hydocephalus, which is basiclly a large amount of fluid in the ventricles. It causes the brain to grow rather quickly. And because Brody's skull was fused before it was supposed to, the brain doesnt have very much room to grow, which also causes the skull to grow in a "clover leaf" shape. The brain takes what room it has, and it fills the spots. The growth needs to be slowed down. The only way to do that is to place a "shunt" in his brain.
WAIT...what? My 3 mo old is having brain surgery? I was mentally prepared to go in to this appointment to talk about the surgery for the correction of the skull when he is 6mos, but BRAIN surgery? My emotional ride just went straight down....
Gabe wasn't there with us today. He is out of town for work. He is the strong one. He is OUR rock. He does the talking and listening, while I usually just rock Brody and stare into the distance pretending that I am understanding all of this. NOT TODAY... I had to put on my big girl panties and take all the information, understand it, ask questions for the both of us, rock Brody, and put on my brave face...a face that I had to put on when I sat down for the space mountain ride.
OK...we are having brain surgery. Its not a long surgery, only about 30 min... but its still brain surgery. What I also wasnt prepraed for was the Dr telling us that it needs to be soon... like NOW... before Christmas...WHAT?? Before Christmas?? Thats like 2 weeks away....
Brain Surgery....the real life version of space mountain. A scary ride for sure, but one that I KNOW we will step off of alive, stronger as a family and back on the steady and straight part of this emotional rollercoaster.
http://www.gofundme.com/58c7p4
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