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
Monday, November 18, 2013
Spilled Milk....I did cry over it.
When you have a baby in the Nicu...there is really only so much you can do for them. In my case, there were 2 things....A. love on him every chance I got and B. Becoming a pumping machine so he can have breast milk. I was/am fortunate enough to be able to have a good milk supply, so for 2 months now, I have been, as Gabe says, running a milk factory. Every 4 hours I stop what I doing and pump....and pump...and pump. Ok,ok ...most of the time I stop what I'm doing. Sometimes I sleep right through my pumping, and sometimes I'm a little busy and can't get to it. And trust me, you don't want to miss a pumping session. The out come of missing is pretty painful and not worth it. I have suffered my fair share of mastitis because of missing.... NOT FUN!! Pumping milk is a pretty tough job. And I one hundred 100% believe that it is worth as much as gold... therefore I believe it is "liquid gold". Because Brody was in and out of surgeries, had a feeding tube in his mouth for so long, and was having trouble keeping his food in, they were not giving him very much to eat. Therefore I am WAY WAY WAY ahead of him on milk. My milk storage has resulted to sending about 130 3-6ox bags to San Antonio for storage and I have about 90 bags here, not to mention what the hospital was storing for me.... either way... its A LOT!!! And if pumping wasn't such a chore, I wouldn't cry over spilled milk.. but THIS DAY I DID... Here's the story...
Friday was our first outing as a family, and it was to a doctors appointment....a very early doctor's apt, and it was nothing short of a DISASTER.
Because the cute little mr decided it was play time at 330 am that morning, for 2 hours, I, A. Didn't get much sleep (again) and B. Slept through my alarm. So of course we were running late....a very common thing in this house, something which I'm trying to break, and something that I know is weird because Gabe is in the military. Anyway...back to the story. As I finally got everything ready - which is A LOT. 5 bags to be exact, I realized that it was his feeding time and my pumping time. Which was easy enough (or so i thought) since he is on a feeding pump. I would just set up the pump and he would get his food while we drove there. So, I hook the pump up to his little tummy, and get the food going. I cover him with a blanket, buckle him in his seat, and have Gabe take him to the car. 10 min later as I am on the phone trying to get an address for this Dr office, Gabe yells for my help. I go over and he says that I didn't hook up the connections right and milk has been pouring out all over Brody for the past 10 min... OH SHHHH.... We run back in side, grab new clothes to put on him, and I defrost more milk to feed him... after about 15 min of "redressing" and "refeeding"... we are now officially LATE!!! Spilled milk # 2. I forgot to mention that at 12am that morning, I ran into our bedroom with Brodys milk bag, and spilled it all over our bed... YES.. at 12am... that was the start of a very long day....
We finally make it to the Dr office exactly an hour late, and get things going.... Did I mention that we have to take 5 bags with us?? A bag with his feeding pump, a bag with his suction machine, a bag with emergency supplies, a diaper bag, and my purse. I decided to consolidate as much as I could last min before leaving, and that was a bad idea. I threw diapers, wipes, and pacis in his er bag, to help with the bag load. As we start getting Brody undressed to be weighed... the little stinker has a MAJOR blow out of his diaper... Im talking BIG... of course it goes all over his clothes, and socks, and since I consolidated, I have NO change of clothes for him, or little stinker would remain naked for the remainder of the apt.....so I hand Gabe the box of wipes and a diaper, and he gives me the clothes to start rinsing off... 1 min later, I get the wipe box handed back to me BECAUSE ITS EMPTY.... I forgot to put wipes in in.... OOOOHHHH SSSHHHHH.... by this time the nurse is probable thinking we are a bunch of idiots and our 2 month old is probably smarter than us.... LORD HELP ME...
The Dr and her team of specialist come in (all female) and start the apt. Since they are all female, I feel comfortable enough to do my pumping in there while they are talking. I start putting my stuff together, and realize that I forgot one of the parts to the pump. WHAT THE H!!! Now what? My boobs are throbbing and Im on the verge of jumping off my ledge!! Half way through the apt, I realize that I can pump one side at a time... I AM BRAIN DEAD AT THIS POINT... so I start pumping. 40 min later, 20 min on each side, Im done... RELIEVED... free for another 4 hours..... I put the bottles of milk down, and start getting our things together. Stand up, and BAMM... knock over the bottles of milk... all over the floor...all 6 oz... a big puddle of precious white liquid on the floor... WHAT IS GOING ON WITH ME.... and of course I turn to Gabe and he is giggling like a little school boy. I now have one foot off my ledge... Spilled milk #3 for the day.
Finally, we make it back home. I put B down for a nap, and I lay down with him, but my mind is racing with all the chores I have to do, that I can't sleep. Finally our nurse arrives for her shift (30 min late) and I can run upstairs to pump and lay down. 20 min of pumping and thinking, and trying not to fall asleep, and I am finally done. I can lay down for a quick hour before I have to run errands. I get dressed and BAMMM spill the milk all over the bed AGAIN.... quickly pick it up and place it on the bathroom counter, go to grab a towel and BAMMM knock the bottle off the counter and spill the rest of my precious 6 oz.... Spilled milk #4 and 5 in a matter of minutes....and at this point... IM CRYING OVER SPILLED MILK...
So whoever came up with the phrase "Don't cry over spilled milk" has obviously never has a day like mine....and if you are a pumping mom, and have a day like this... YOU ARE ALLOWED TO CRY... Its MY MILK AND I"LL CRY IF I WANT TOO!!!
http://www.gofundme.com/58c7p4
Friday was our first outing as a family, and it was to a doctors appointment....a very early doctor's apt, and it was nothing short of a DISASTER.
Because the cute little mr decided it was play time at 330 am that morning, for 2 hours, I, A. Didn't get much sleep (again) and B. Slept through my alarm. So of course we were running late....a very common thing in this house, something which I'm trying to break, and something that I know is weird because Gabe is in the military. Anyway...back to the story. As I finally got everything ready - which is A LOT. 5 bags to be exact, I realized that it was his feeding time and my pumping time. Which was easy enough (or so i thought) since he is on a feeding pump. I would just set up the pump and he would get his food while we drove there. So, I hook the pump up to his little tummy, and get the food going. I cover him with a blanket, buckle him in his seat, and have Gabe take him to the car. 10 min later as I am on the phone trying to get an address for this Dr office, Gabe yells for my help. I go over and he says that I didn't hook up the connections right and milk has been pouring out all over Brody for the past 10 min... OH SHHHH.... We run back in side, grab new clothes to put on him, and I defrost more milk to feed him... after about 15 min of "redressing" and "refeeding"... we are now officially LATE!!! Spilled milk # 2. I forgot to mention that at 12am that morning, I ran into our bedroom with Brodys milk bag, and spilled it all over our bed... YES.. at 12am... that was the start of a very long day....
We finally make it to the Dr office exactly an hour late, and get things going.... Did I mention that we have to take 5 bags with us?? A bag with his feeding pump, a bag with his suction machine, a bag with emergency supplies, a diaper bag, and my purse. I decided to consolidate as much as I could last min before leaving, and that was a bad idea. I threw diapers, wipes, and pacis in his er bag, to help with the bag load. As we start getting Brody undressed to be weighed... the little stinker has a MAJOR blow out of his diaper... Im talking BIG... of course it goes all over his clothes, and socks, and since I consolidated, I have NO change of clothes for him, or little stinker would remain naked for the remainder of the apt.....so I hand Gabe the box of wipes and a diaper, and he gives me the clothes to start rinsing off... 1 min later, I get the wipe box handed back to me BECAUSE ITS EMPTY.... I forgot to put wipes in in.... OOOOHHHH SSSHHHHH.... by this time the nurse is probable thinking we are a bunch of idiots and our 2 month old is probably smarter than us.... LORD HELP ME...
The Dr and her team of specialist come in (all female) and start the apt. Since they are all female, I feel comfortable enough to do my pumping in there while they are talking. I start putting my stuff together, and realize that I forgot one of the parts to the pump. WHAT THE H!!! Now what? My boobs are throbbing and Im on the verge of jumping off my ledge!! Half way through the apt, I realize that I can pump one side at a time... I AM BRAIN DEAD AT THIS POINT... so I start pumping. 40 min later, 20 min on each side, Im done... RELIEVED... free for another 4 hours..... I put the bottles of milk down, and start getting our things together. Stand up, and BAMM... knock over the bottles of milk... all over the floor...all 6 oz... a big puddle of precious white liquid on the floor... WHAT IS GOING ON WITH ME.... and of course I turn to Gabe and he is giggling like a little school boy. I now have one foot off my ledge... Spilled milk #3 for the day.
Finally, we make it back home. I put B down for a nap, and I lay down with him, but my mind is racing with all the chores I have to do, that I can't sleep. Finally our nurse arrives for her shift (30 min late) and I can run upstairs to pump and lay down. 20 min of pumping and thinking, and trying not to fall asleep, and I am finally done. I can lay down for a quick hour before I have to run errands. I get dressed and BAMMM spill the milk all over the bed AGAIN.... quickly pick it up and place it on the bathroom counter, go to grab a towel and BAMMM knock the bottle off the counter and spill the rest of my precious 6 oz.... Spilled milk #4 and 5 in a matter of minutes....and at this point... IM CRYING OVER SPILLED MILK...
So whoever came up with the phrase "Don't cry over spilled milk" has obviously never has a day like mine....and if you are a pumping mom, and have a day like this... YOU ARE ALLOWED TO CRY... Its MY MILK AND I"LL CRY IF I WANT TOO!!!
http://www.gofundme.com/58c7p4
Thursday, November 14, 2013
Dont say the H word....
The phrase "we are going home" is not something you say until you are in the car driving home....and today 11.12.13, we finally got to say those words. Something I've waited for, for 11 months. I said that to Gabe earlier and he was confused about the 11 months.... ummmm hello...9 months of being pregnant and 2 in the hospital.... gggeezzzz that guy sometimes.... he keeps me.on my toes...
Any who..... we made it home... the 1st of many mile stones. Not to mention, we just closed on our house 4 days ago, moved in over the weekend, and are still in the process of moving in....its been a busy 5 days...But I wouldn't have it any other way.... Brody is home, thats all that matters..... our pfamily life begins now....
OK fast forward to WED 11.13.13... its 11:54 pm and I am finally done for the day. Well almost. I have 9 min left of pumping breast milk. WHAT A FREAKIN DAY.... thats all I can say. Did you ever watch that tv show on mtv "The Real World" ? And they used to say "You think you know, but you have no idea"....well thats what I feel like. Ill be real honest. For 2 months now, I haven't really felt like a real mom. I didn't get to experience what most new moms do. The late night crying, no sleep, up all night trying to feed and keep food down. I got none of that. My days have consisted of sitting in a chair holding my baby, pumping breast milk (saving this topic for another day), learning HOW to take care of my child, and sleep... lots of it...whenever I could....whenever I wanted....thats it. I left the rest up to the nurses. The wonderful wonderful nurses and doctors. BUT LAST NIGHT WAS A DIFFERENT STORY..it was my time to shine.
Because Brody has a trach, I have NEVER heard him cry... nothin, not one peep....its a sound that I have longed for since I found out I was pregnant. The only way I know if he is in distress is by the "gunky" "mucus" sound coming out of his trach. So most of my sleep was really me lying there wondering if I just couldn't hear the gunk and hoping he was ok. I thought I knew about sleepless nights, but I had no idea until last night....
I will be back to finish this blog tomorrow.... MUSt.GET.SLEEP.
http://www.gofundme.com/58c7p4
OK fast forward to WED 11.13.13... its 11:54 pm and I am finally done for the day. Well almost. I have 9 min left of pumping breast milk. WHAT A FREAKIN DAY.... thats all I can say. Did you ever watch that tv show on mtv "The Real World" ? And they used to say "You think you know, but you have no idea"....well thats what I feel like. Ill be real honest. For 2 months now, I haven't really felt like a real mom. I didn't get to experience what most new moms do. The late night crying, no sleep, up all night trying to feed and keep food down. I got none of that. My days have consisted of sitting in a chair holding my baby, pumping breast milk (saving this topic for another day), learning HOW to take care of my child, and sleep... lots of it...whenever I could....whenever I wanted....thats it. I left the rest up to the nurses. The wonderful wonderful nurses and doctors. BUT LAST NIGHT WAS A DIFFERENT STORY..it was my time to shine.
Because Brody has a trach, I have NEVER heard him cry... nothin, not one peep....its a sound that I have longed for since I found out I was pregnant. The only way I know if he is in distress is by the "gunky" "mucus" sound coming out of his trach. So most of my sleep was really me lying there wondering if I just couldn't hear the gunk and hoping he was ok. I thought I knew about sleepless nights, but I had no idea until last night....
I will be back to finish this blog tomorrow.... MUSt.GET.SLEEP.
http://www.gofundme.com/58c7p4
Tuesday, November 12, 2013
The end of the week but beginning of a future
Happy Friday everyone. Welcome to our PFamily blog - "A Pfighting Pfamily". You are probably wondering why I am putting an "P" in front of my "F" words, and I shall get to that in a moment. But first and foremost lets get something straight...this blog is a place for updates, prayers, support, and unconditional love. I will share our pfamily adventure in our pfight for our son Brody - currently 2 months old. So follow us and share our ups and downs, happiness and sorrow, milestones and triumphs, but most importantly PRAY and BELIEVE with us.
Here's is the story of how and why our PFIGHT started......
Ok...wait...
Fast forward to now Tuesday 11-12-13....I had the whole story of my pregnancy and delivery written out, but as I sat in Brodys disaster of a room at 530am pumping, I decided that this first blog needed to be finished TODAY. So I erased all of it.... and I'll tell you why.
You see 2 months and 3 days ago, our son Brody was born with a very, very,very rare syndrome called Pfeiffer syndrome. He has the second stage of it called Type 2. He also has one more difficult aspect of it called a "trachea sleeve", which is SO rare, there are only 12, I repeat 12, documented cases in the world. To this day...my son is number 13 in the world. Pfeiffer syndrome is already a difficult syndrome, but throw the trachea sleeve in the mix and you now have a life limiting - as in most haven't made it past infancy syndrome. The road so far has been filled with 2 surgeries, many test,mri's,ct scans and God only knows what else. BUT the one thing that hasn't happened is us losing our Faith. We know that we were given this opportunity to learn, grow, and love by God and we are trying and will try everything in our power to do it, and give Brody the best life possible. Whether its 3 months, 4 years, or 35 years, this challenge is ours as a family and we will PFIGHT it. With all our heart and soul, we as a PFAMILY will make it.
Brody has been a resident in the NICU at Dell Childrens Hospital since day 4 of life, (something I will save for another blog) and since he can't breath through his nose, he has a trach that he breaths through. ..also known as an artificial nose. He also had a feeding tube - called a gtube placed in his stomach so he can eat. How long he will have to have these devices, no one knows, but its the only way of life he knows, so thats what we know...2 other aspects of Pfeiffer that Brody has, is a clover leaf" shaped skull and a receded or pushed back mid face, which will also be saved for and explained in another blog. That's our Brody...our world, our life, and our pfight. The beginning of a whole new chapter in our lives.
So.... the reason I deleted the first draft of my blog is because in the past 2 months, if there is any thing that I have learned, its this.... Don't look back on the past, you can't do a single thing to change it, don't look ahead at the future because you will never know or control how much time you have, BUT LIVE AND ENJOY EVERY SINGLE SECOND OF YOUR PRESENT.....MAKE MEMORIES....SMILE....AND LOVE FIERCELY.....and that my friends is exactly what we plan on doing. You didn't need to know about my pregnancy or my delivery....this blog is about our present....and the journey we are on as a pfamily....
So, as I sit here in Brodys disaster of a room, trying to set it up for his anticipated arrival, I say to you, Thank you for following along with us and watching us grow, love, and Pfight for Brody..... it's bound to be an adventure. And please keep us in your prayers. That is all we can ask from you.
http://www.gofundme.com/58c7p4
Love,
Steph
P.S. please excuse any and all spelling and grammatical errors...since we just moved our internet and computer are not set up yet, so I am writing this on my phone. And I promise as soon as I get set up, you will get a blog full of pictures.
Here's is the story of how and why our PFIGHT started......
Ok...wait...
Fast forward to now Tuesday 11-12-13....I had the whole story of my pregnancy and delivery written out, but as I sat in Brodys disaster of a room at 530am pumping, I decided that this first blog needed to be finished TODAY. So I erased all of it.... and I'll tell you why.
You see 2 months and 3 days ago, our son Brody was born with a very, very,very rare syndrome called Pfeiffer syndrome. He has the second stage of it called Type 2. He also has one more difficult aspect of it called a "trachea sleeve", which is SO rare, there are only 12, I repeat 12, documented cases in the world. To this day...my son is number 13 in the world. Pfeiffer syndrome is already a difficult syndrome, but throw the trachea sleeve in the mix and you now have a life limiting - as in most haven't made it past infancy syndrome. The road so far has been filled with 2 surgeries, many test,mri's,ct scans and God only knows what else. BUT the one thing that hasn't happened is us losing our Faith. We know that we were given this opportunity to learn, grow, and love by God and we are trying and will try everything in our power to do it, and give Brody the best life possible. Whether its 3 months, 4 years, or 35 years, this challenge is ours as a family and we will PFIGHT it. With all our heart and soul, we as a PFAMILY will make it.
Brody has been a resident in the NICU at Dell Childrens Hospital since day 4 of life, (something I will save for another blog) and since he can't breath through his nose, he has a trach that he breaths through. ..also known as an artificial nose. He also had a feeding tube - called a gtube placed in his stomach so he can eat. How long he will have to have these devices, no one knows, but its the only way of life he knows, so thats what we know...2 other aspects of Pfeiffer that Brody has, is a clover leaf" shaped skull and a receded or pushed back mid face, which will also be saved for and explained in another blog. That's our Brody...our world, our life, and our pfight. The beginning of a whole new chapter in our lives.
So.... the reason I deleted the first draft of my blog is because in the past 2 months, if there is any thing that I have learned, its this.... Don't look back on the past, you can't do a single thing to change it, don't look ahead at the future because you will never know or control how much time you have, BUT LIVE AND ENJOY EVERY SINGLE SECOND OF YOUR PRESENT.....MAKE MEMORIES....SMILE....AND LOVE FIERCELY.....and that my friends is exactly what we plan on doing. You didn't need to know about my pregnancy or my delivery....this blog is about our present....and the journey we are on as a pfamily....
So, as I sit here in Brodys disaster of a room, trying to set it up for his anticipated arrival, I say to you, Thank you for following along with us and watching us grow, love, and Pfight for Brody..... it's bound to be an adventure. And please keep us in your prayers. That is all we can ask from you.
http://www.gofundme.com/58c7p4
Love,
Steph
P.S. please excuse any and all spelling and grammatical errors...since we just moved our internet and computer are not set up yet, so I am writing this on my phone. And I promise as soon as I get set up, you will get a blog full of pictures.
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