This Day Will Never Be The Same

I don't think today or tomorrow will ever get any easier on me.

3 years ago today, we were preparing for the greatest gift of our lives.  Something  Someone that was going to change us forever.  Both, individually and as a couple.  I wont lie...we had our moments of wanting to do it individually, but in the end, something someone always drew us back together.  In all of our tough moments, fights, trying times, me being a needy pregnant brat times, he not giving in to my bratty times, whatever you want to call them, we decided were doing this together.  We were going to put us first so that we can raise a healthy human.  BUT, on this day 3 years ago, we didn't know just HOW much this was going to change us.  

I will NEVER forget this night.  We had all of our parents, and of course, my sister, in town.  We had a special dinner planned at The Salt Lick, and just wanted to enjoy the family as ONE...getting ready for a new little ONE.  I was in heaven.  I got to eat WHATEVER I wanted. (if you know Gabe, this was a daily battle for all 39 weeks!).  We took our parents and sister out for some "congrats drinks/Dallas cowboys game watching," and just lived in the moment of our last day of being pregnant. We made 'bets" of boy or girl... would he/she look like me or you... who's "BIG" nose would he/she have.. my moms blue eyes or our brown eyes?... so many questions, so many thoughts..... SO MUCH LOVE....in one night... THE NIGHT BEFORE.... 

I will never forget the one person who offered to be there to "take the shots."  We had to be at the hospital at 6am to prep, and she showed up at 5am to get all the shots she could.  She is one of my "bestest"....she wanted to make sure EVERY moment was captured.  The hospital staff raved about her, because she wanted a picture of everything we and baby would touch.  We went over all of the perfect shots she would take, and made sure with the nurses that she wouldn't miss a heart beat.... 

I never fully shared the photo album with anyone, because at 7:39 am, time stood still.  She was left with nothing to capture for the next couple of hours...... time stood still... for everyone...

I don't think I will ever get through September 9 with out shedding a tear.  Every parent changes on the day their child is born.... but I really changed.  I saw my baby boy for the first time, I kissed him goodbye on what they told me might be the last, I saw a look in Gabe's eye's I had never seen before, I cried and prayed like I had never done before.... it was the first for a LOT of things and it changed me as a person, a person I never knew I could be.  I can remember them showing him to me and telling me to say goodbye and Gabe running out with him.  They had my mom come in to finish the surgery and we cried together (mostly because she was concerned about the blood), but it was the first time she would hear the words..."you have a grandson"... I was wheeled up to my room, still in shock, still numb, still balling my eyes out.... yelling, "WHERE IS MY SON",... i cried...over and over and over.... Gabe would come check in on me and say " he's ok...there are issues..but he is ok" and yet, that was all he could say....I wasn't allowed to see him for what seemed like forever, but was really 12 hours....I sat and cried for 12 hours straight.... 12 hours... 

You all know the rest.... the results, the test, the beginning of "Our PFIGHTING Story"... 

I sit here today... 3 years later... and I CAN NOT believe what we have been told, been through, survived, and LOVED through.  Here we are.... 3 years past what they said we would live through. The words " he wont survive past infancy" still ringing in my head.  

Ya'll ... he is starting school NEXT WEEK!!!   He is smarter that I cold ever imagine... He has an attitude like something straight from BOTH of his aunties... and he loves like no one ever could.  He is the BEST thing that could have ever happened to us.  He made Gabe and I a "real thing".... he made us parents...he made us A PFAMILY.  He has a sense of humor that no kid does (he sat in the dark and scared the crap out of me on purpose today), and he is everything Gabe and I hoped he would be.  Yea, we may need a little work on somethings, but he is perfect in every way.  He makes me the person I want to be.  He makes me want to PFIGHT everyday... He makes us, US....

So, if you read this tonight, or tomorrow - September 9, say a " thank you" prayer.... eat a piece of cake, or a donut, or drink a glass of wine/champagne... and JUST CELEBRATE!!! Celebrate God's love...and perfection... and Brody's life...

I sincerely thank each and everyone one of you who have followed us...prayed for us....asked about us... loved us... and just simply thought of us.... we would not be a PFAMILY without you!! 

HAPPY 3 YEAR PFIGHTING BIRTHDAY!

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We love you.... BRODY LOVES YOU... 

Life isnt a test.

When you take any sort of test, there is usually ONE correct answer.  There may be good answers listed, but there is only ONE definite, right answer.  Life is not a test.  There is not just ONE answer to Life.  Last week, we were given that lesson.

If you have kept up with our journey, you will remember that back in January, we traveled to Cincinnati to visit their airway specialist and we were told that since his mid face is pushed back and that is ultimately what is causing his air way obstruction, their crainofacial team wanted to do surgery when he was 2, so that we can work on getting his trach out. (You can read that update here: http://pfightingpfamily.blogspot.com/2015/03/it-raining-but-we-are-shining.html)

When we came back home and visited our craniofacial dr, Dr. H, and told him what Cincinnati's plan was, he quickly stepped in and said he would do the same surgery when B was 2 and there was no need to go back to Cincinnati....  but first he wanted us to meet with a new ENT, Dr. C, who studied at Cincinnati Children's.  He felt that she would be the best for us and as proactive as we wanted. So we did. After meeting with her, she wanted to take a look at B's airway herself and consult with Dr. H on her findings, so that they can come up with a plan and time line of surgeries.  So we scheduled and in May B had his procedure so she could see what the deal was.  While he was in recovery, she sat down with us and quickly went over her findings.  We were shocked to hear that it was more complex then we had ever been told.  She said that the office would call us and set up a conference with his team of doctors to discuss their plan and what they think would be best for B.

That conference was last Wednesday.

Gabe and I went in expecting to hear what WE wanted to hear, not what THEY wanted us to hear. We were told that his case was a little more complex then we or they had thought and that he would need a little more surgery. But because his air way is protected with a tracheotomy,  Dr. H felt that it would be in B's best interest to wait until he is 6 years old (as originally planned) to even start doing the surgeries.  He thinks that the long term result will be better if we wait until his bones are thicker and more settled.  They said that because B is growing, happy, and healthy for his syndrome, why take surgical measures. Just let him grow and let him be.

Cincinnati wants the trach out.  They want to do his surgery when he is 2.  They feel that the morbidity rate (YES, death rate) with kids with trachs is high, and why take the risk of having one if we can take surgical measures and work on getting it out.  The sooner the better, right?

In short, they left us with the words "you have to make a decision on who you want to go with, what you feel is best for Brody"

So here is when you realize that life is NOT a test.  What decision is right? Why do WE have to make this decision?  Shouldn't there be ONE right answer? ONE way to do this?  Who do we go with?Who's opinion do we trust? WHY... it seems that since he was born, I've been asking WHY!

I've been in a funk for a week now.  This is weighing heavy on my mind.  Do we live for 6+ more years with a trach or do we take measures to get it out.   Being a trach pfamily is hard.  Its work. Its scary.

How do we make the right decision?

I know we have to pray about it, and that God will send us a decision.  But this isn't a test.  We could get it wrong.  I couldn't deal with the fact if we did get it wrong.  

Im lost and at a stand still.

www.gofund.me/pfightingpfamily

-S

If you can take it, you can make it.

B has a procedure tomorrow. Another one. A short one, but another one under anesthesia.  I hate this. I think the night before a procedure is the worst.  You know its coming and all you can do is think about it.  "Will he be able to handle the anesthesia AGAIN? Will they give us good news? What if they find something that will put a damper on all our plans for him." The day before a procedure is .....well....it is what it is.... I dont even have the words to explain it.  Your whole day is consumed by the thought of that single moment at the big white doors, when you have to hand over your son to a stranger.  A nurse, and Im sure a really loving one, but still a stranger.  I can tell you every detail of that moment.  Ive  We've been there too many times. We have walked down that hallway too many times.  First, it started with him in an incubator, then I carried him, tomorrow Im sure he will be walking him self and not knowing where he is going. Then, we will come up to the big red STOP sign.  Like one you see on a street.  There will be 2 big white metal doors behind it.  The nurse will say " ok, time for hugs and kisses... don't worry MOM, we will take good care of him"  She says "mom" because I am the one who turns into a baby.  I hold him, I cry, I kiss him a thousand times.  And I say "i'll see you in a bit....be good....be brave.....i'll see you when you wake up" I've said that 8 times and counting.  8 times to many.

That is what the day before a procedure is like.  You play that moment over and over and over in your head.  You have a different train of thought.  Nothing in the world matters or makes sense. You mentally try to prepare for another long day at the hospital. Get some rest, they tell you.  But you cant. Too many thoughts going through your head.  And that one moment just plays and plays, and it wont stop until you relive it the next day.

The day before a procedure flat out SUCKS!

Tonight after we put B to bed, we sat and watched the movie "Unbroken".  Its about a WWII POW.  A true story.  An amazing story.  There is a line that he repeats to himself when the times get tough. "IF YOU CAN TAKE IT, YOU CAN MAKE IT"    I feel like B is a POW in his own life war.  We are pfighting to get out of this and over come it.  And this statement holds true to him US.  If we can take it, we can make it.  One day, after the times have been tough, after we have been beaten down with obstacles, we will make it.  We HAVE made it.   We have made it this far.  We have beaten the "live past infancy" obstacle, amongst many others. We are going strong.  HE is going strong.  He will make it. And with that little 9 word statement, our pfight continues.

I pray tonight that the doctors get good rest.  That B handles the anesthesia, yet again.  I pray that they give us ANOTHER good and positive report.  That these findings set us up for success for the big surgery in September. I pray for mental stability for Gabe and I.  I pray for our pfamily.  I pray for a fast and easy recovery for B. I pray for his pfight.  I pray for him.

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good night,
-S

its raining but we are SHINING!

WOAH... where has the time gone.... its been like almost 3 months since I have written!  I wanna say nothing has been going on, but life has been so busy, busy with a  VERY active 17 (almost 18) month old.  Lets catch up! Ready, set, go....

January.  Wow, what a beginning to the year.  We started off a little rocky, with B and I both being sick.  He got over it in one day, but I on the other hand took 1 week to get through it. Then we had a MAJOR incident with a new nurse.  It was scary, landed us in the hospital and ended with a nasty trachea infection.  My poor little B, he was miserable, and I'm sad that we had to go through that.  But after a strong round of antibiotics and lots of TLC, he was back to his old happy self.  Then the biggest part of our new beginnings was our big trip to The Cincinnati Children's Hospital for evaluation. It was a GREAT trip with lots of information.  Here is the break down.  We had a total of 7 appointments in 3 days. We saw their entire airway team, and on Wednesday, the biggest of the appointments happened.  His broncoscopy.  They put him under anesthesia and off he went into a cold little operating room.  They stuck a camera up his nose, and one down his trachea.  After 2 hours of waiting, we finally met with the doctors and got the news.  His trachea is FINE...its growing like a normal trachea should grow.  It is a rare looking trachea, since its all cartilage, but its something that they do see and they do follow.  HOWEVER, since his mid face is pushed back due to his syndrome, here is where the issue is.  While they were able to get a camera in his nose, it was a very small one, and it stopped once it got past the nose.  Meaning, his face is closing off his upper air way.  While we knew this from our team of doctors here in Austin, the Cincinnati team has a different way of approaching it.  The ultimate goal is to get his trach out.  To do this, he will need to have his mid face reconstructed. Our doctors here in Austin, want to do it when he is 6.  Cincinnati wants to do it when he is 2..yes 2..TWO... in 6 months. WHOAH... wait .... what? Here's the deal, its an ugly ugly UGLY surgery.  They will go in through his bottom eye lids with a "chisel" and break his face in half... I'M.NOT.EVEN.LYING. Then they will move his mid face as far forward as they can, put a retraction (halo) device on his face and head, and let his bones heal for 4 weeks.  During that 4 weeks, Gabe and I will turn the device 3 times a day so that it pushes his face back in to place slowly.  Kinda like the skull distraction device he had back in April, except instead of pushing out, it will pull his face back in.  They told us to think of it like silly puddy....they stretch it as faaaarrrrrr forward as possible, and then slowly move it back into the right place.  It will move his jaw out, open his airway, and HOPEFULLY if all sets well and goes well, we can work on getting his trach out...BY THE AGE OF 3!!!  This is when I started crying.... this could be the start of a NEW and DIFFERENT LIFE.  To hear that he can possibly be trach free by the age of 3 was just amazing. While I hate to put the little guy through this, I just know it needs to be done.  After leaving the hospital, we cried.  We celebrated.  We grew more as a family.  

This surgery is a HUGE decision.  Not only mentally, but physically and financially.  Its a HUGE commitment.  Lots of decisions to be made.  Will we stay there in Cincinnati for a month? Fly back after a week long hospital stay, then fly back for the device removal? Is 2 a good age? Will insurance help us with this? So many questions.  We will sit with our team here in Austin and discuss.  They don't do this surgery here. I cant even BEGIN to imagine seeing his face look any other way.  This is by far MORE than just a cosmetic thing.  Its a life changing surgery!  But if we could get his trach out by 3 years of age....that is HUGE!!! We could get him ready for a "normal" life.  School, sports, talking, eating....so many things could be different.  I pray daily for peace of mind with this decision.  We have AT LEAST 4 more trips to Cincinnati in the next year!  Pray for us all!!

February.  Whew... what a fast month!  B has become SUCH a different child.  He is OFFICIALLY walking/running all over the place.  He loves to play hide and seek in the pantry.  He climbs the stairs. He learned to blow and give kisses. and get this... he has a little "squeak" that sounds like MOMMA!!! yes... his squeaks are starting to sound like words!!  We went in for our 6 month check up here at the trach clinic and his speech therapist there gave him his passimere valve. Its a cover that you put on his trach that helps him make actual vocal sounds.  Its hard to learn to use, but he is slowly getting the hag of it.  He has been super healthy this month (THANK GOD) and is truly thriving! 

As I finish writing this, one of my favorite songs just came on... "you are the best thing" by Ray LaMontagne.  He truly is the BEST thing that has happened...well him and Gabe.  They have both changed my life and have made me a better person. I cant thank God enough for all the amazing life changes and blessings.  I cant wait to see what the future hold for us. I see bright skies ahead.  I mean it.  Our rough sea is starting to calm.  I cant thank each one of you for all the love, support and prayers.  

http://www.gofundme.com/58c7p4

A happy and calm momma,

-S

The sound of Silence but the Actions of LOVE.

We all know that one person, maybe more, who just seem to talk and talk and talk.  They are the person that can make friends with a tree.  Most often than not, some one will get annoyed with just how much they can talk.  But to that "Chatty Cathy", talking is just their way of life.  Its just what they do.  Some even make a living out of it.  Some spend their drive to work talking to them selves, or making phone calls just to talk to someone.  Its just who they are and what they do.  They talk.

Every day when I get off of work, the first thing I do is call Gabe to see how his day is.  Its a routine.  12pm phone call.  Some days, our chats are longer than others, and some are just real quick and to the point.  I love to hear his voice, and its just a calming sort of peace for me.  We usually share a laugh or 2 and always hang up with an "i love you, gina" (gina is my nickname.. long story).  Today was one of those "hey someone is in my office, ill call you back in a sec"  "ok, bye", and I continued my drive home.  As I stopped at a red light, I grabbed a set of papers that I have to fill out for Brody's dr apt tomorrow.  Another Dr. apt.  These things are never ending.  Its his 16th month developmental apt.  Every 6 months we have to go so they can track his development.  And I cringe at the thought. I cringe, because if we were not medically dependant, this wouldst be an issue. I cringe because we are "followed by doctors".  Every time I have to fill out these papers, I.CRINGE

Today's cringe of the paper work was just a bit harder than usual.  It was like someone just came out of the paper and punched me in the face.  The very first section was "COMMUNICATION".  Does your child say four or more words IN ADDITION to "momma and dada"? My first and only thought at that moment was "WELL NO YOU JERKS, MY CHILD DOESN'T SPEAK!"  And then the tears poured down like rain.  It hit me.  I just want to hear my child say "i love you, momma"  I want to hear him call out for me and gabe.  I long for that sweet voice that I know is inside of him to just say "hi, bye, momma, daddy, i love you" any thing.  I just want his sound.

His sweet little sound.

When will I hear his voice.  I have waited for that moment since I found out I was pregnant.  I was soon going to be a momma with a little nugget running around screaming.  Telling me he/she loves me.  Telling me random things that would make me laugh, cry, cringe.  I was always gonna have that little voice that I would call "mine".

I sat at the light and cried.  Thinking of the fact that I may never get to hear the voice or the 3 sweet words every parent loves to hear "I.LOVE.YOU"

At that moment, as I threw down the papers, my phone rang.  It was Gabe calling me back to finish our convo.  In a short 5 min, I went from my "peppy" self, to a "somber pissed off with a heavy heart" kinda person.  The tears were rolling down and I just had to let Gabe know how my heart was hurting.  I ranted for a while, talking in between my sobs.  "Why us?"  Why can I not hear him say "i love you".... Why do they have to send us THESE papers.  They know my child doesn't speak.  Cant they send us some with out this section? Every time I read the questions, it was like I was getting hit!

It was then that Gabe said the most truest words I have ever heard.  "He may not say it with words, but he ALWAYS shows us in his own way that he love us"  It may be with his excited little squeaks, his random open mouth kisses, or even the pull on my nose.... but he will always have his own little ways.

And just as quickly as the rain stopped, my tears were gone.  He was right.  Bear will always know just the right way and time to not tell me but SHOW me that he loves me... because like the old saying goes "Actions speak louder than words"

So with this CHRISTMAS season upon us, I ask one thing of all of you... go SHOW some one you love them.  Sit and listen to some one speak.  Enjoy the sweet sound of your child's voice.  And above all else, NEVER be afraid to use your voice in a way that you want to.  Sing, laugh, cry, shout, do what you can with your voice, and never take for granted what you have, because some of us don't get that.

http://www.gofundme.com/58c7p4

With a loving and hopeful voice,
S

P.S.  There is a device that we can HOPEFULLY one day put on his trach to help him make sound, but at this moment he is not ready for it.  We have tried and he failed the test run.  Hopefully soon or when we go to Cincinnati, we can try again.  But for now, its just not for us.

All is calm, all is bright!

The holidays have ALWAYS been such a big and important part of my life.  Its always filled with good fun, lots of family time, and too many friend gatherings to handle.  This year is no different. Well, it sort of is, because we have a 15 month old.  Last year, our holiday season was a bit gloomy, because we were still reeling from bringing home baby, and getting ready for his first brain surgery (5 days before Christmas).  It was like we could never just catch a break. If things even calmed down for a bit, something was thrown our way.  But we over came every obstacle and had EVEN more to be thankful for.  A year has come and gone, and all I can say is that - ALL IS CALM, ALL IS BRIGHT.  

Bear has really been movin' and a'shakin lately.  The little miracle boy that has brought so MUCH joy to all of us, is just AMAZING Gabe and I every day.  He keeps us on our toes and is a TRUE boy. (he toots and laughs about it...how much more "boy" can you get) We have been working on a lot of milestones with his all 3 of his therapist and they are so amazed at his progress.  He is a little behind on some stuff, but continues to improve every day. We are getting ready for that moment when he just takes off and starts walking, but for now, walking along all the furniture and windows will work for us.  He LOVES to get into anything and every thing that he isn't supposed to have.  If you have it, he wants it, and when he doesn't get it, you get his little temper tantrum.  Typical baby, I suppose.  He make us laugh with all his squeeks and squeals, and when you don't pay attention to him, he YELLS at you (just ask gramma Mary).  He is learning a little bit of sign language here and there, but our favorite is when he ask for "more".  More of anything, but especially food!

His eating by mouth was always a little delayed, and I think it was because he had been throwing up formula/breast milk EVERY day.  That nasty taste it left in his mouth just set him off from food.  Im happy to say that he hasn't thrown up since SEPTEMBER and has really made a turn on eating.  He woke up one day and just decided that food was an awesome thing.  He loves eggs with ketchup, chocolate cake (thanks Gramma Mary and Auntie A), cookies, and well basically anything but "mushy baby food".  Gabe is still convinced that he is getting more on the floor than in his stomach, but hey, baby steps..... we are still learning! Its amazing to see him stuff his face, and if I wasn't too busy stuffing my face on Thanksgiving, I would've taken pictures of him stuffing his face.  It was SUCH a blessing and we are so THANKFUL that he is taking huge strides on eating.  Hopefully one day soon (*crosses fingers*) we can get him off the feeding tube.  

As most of you know, we have been taking trips back and forth to San Antonio to get his helmet adjusted.  After his last skull surgery in August, his dr wanted to get him in a helmet (doc band) to get just the right amount of shaping.  He hated it at first and it was something to get used to, but now its just another thing in our life.  All I can say about it is WOW.... the change is AMAZING.  Not only have both of his skull reconstructions been SUCCESSFUL, but this helmet has really been the topping on the cake (chocolate, if you must ask )  It is so amazing to see how far medical technology goes.  I never would have thought that my child would have to be a part of "medical numbers" or "medical scans and followings" but we are, and to see the change each month is just truly a blessing.

He has to wear is for 23 hours a day, for 6 months.  We are going on month 2, so just a bit longer to go.  I have yet to paint it, and EVERYONE is telling me that I need to, but I just cant pick a design that will match ALL of his outfits... I know... such a decision to make 

 

 A couple of weeks before his 1st skull surgery

His first skull surgery included distraction hard wear (screws) that we had to turn 3 times a day that pushed the back of his skull out and gave room for his brain to grow. 

His third surgery was to fix the top "bump" and move his forehead forward

 He's just as happy as can be, even with his helmet

He sure does enjoy that HOUR a day he doesn't have to wear it though

Just playin' while waiting to get his helmet adjusted

ALL is CALM , ALL is BRIGHT

Next month is going to be HUGE for us.  We finally got the go ahead to go see the trachea specialist in Cincinnati and the appointments have been scheduled!  We are in the process of booking flights and hotel.  We got our itinerary in the mail a couple of weeks ago, and it looks like its 4 days of procedures, test,scopes and anesthesia.  It will be a long scary week, but I am looking forward to hopefully finding an answer.  I am faithful that they will be able to do something for him. And any thoughts of getting bad news is being thrown out the window.  I cant wait to take him on his first airplane ride, and all thought its not for a "fun" trip, Im sure the traveling experience is going to be one to remember!  

I hope that ALL is calm for you and your family, and I hope that ya'll are shining BRIGHT this holiday season.  I pray for a happy and healthy up coming year for each and every one of you and your family.  

http://www.gofundme.com/58c7p4

Much love and lots of warm hugs,

-S

"A house is where you live, but a home is where your heart is"

When Gabe and I found out we were expecting our lil nugget, we decided that living in a 695sf apt was not going to work....so we quickly found the most perfect little subdivision to build a little home.  When we started building, the guy said that the house would be ready in late August - Early September.  I fired back with a little "worried mom" look and said, LOOK... we NEED to be in the house by SEPTEMBER....i am due Sept 16.  He said he would do everything in his power to do what he could.  But just by our luck, it seemed to rain that whole summer and progress just wasnt looking like a Sept due date on the house.  We even had some thieves come and steal all the copper wiring which put building behind about another 3 weeks.  UGGGHHHH seriously??? At this point, I was a worried mess.  By August, I had to accept the fact that we were not going to be in our home and settled by the time the little nugget arrived.  C-Section was scheduled for Sept 9 at 7am.

After my second baby shower in August, I cleared out most of the open area of the 695sq apt and set up shop for baby.  I cleared out the coat closet and put all his clothes and diapers and stuff in there....we were ready... as ready as we could be.  It was the coziest little apt ever, and only one thing person, was missing.

The weekend of our scheduled delivery, our familes all came up for the "last super".  We had a fun filled Sunday of football watching, a nice dinner at Stubbs BBQ, and we even took our parents and the "dad to be" out for some drinks.  It was so fun to prepare to welcome our nuggt home.  A weekend I will never forget.

Monday, Septemeber 9 came and I was up bright and early (430am) getting dressed, doing my hair, and just excited as ever.....we were bringing home baby!!! ........

Fast forward.... you all know the story.... if not you can catch up here:  http://pfightingpfamily.blogspot.com/2013/11/the-end-of-week-but-beginning-of-future.html

We left the hospital on Thursday, after saying good bye to our sweet boy, only to meet him at his temporary home - DELL CHILDRENS HOSPITAL  NICU a couple of hours later.... I couldnt belive it... we came home to our small apartment empty handed. Everything that was soooo meticulously cleaned and prepared sat empty and waiting.... It was the worst day a new mom and dad could have.  We sat and cried and wondered where we went wrong.

2 months and 3 days went by... day in and day out, our new home was the NICU... our heart was there... Every day was a routine.  Wake up, clean up the apt, get dressed and go sit in his room at the NICU.  Some days were better than others.  Surgeries here and there...and oh yea, we were still in the process of building a home.

God knew what he was doing.  He set us up for this.  He was gonna pull us through.

On Nov 4, we got the green light to start preparing for a discharge....everything had to get put in to place before we could leave.  Nursing had to be scheduled for when he came home, medical supplies had to be delived and equipment had to be set up.  It was a race against the clock to get everything in order.

On Friday, November 8, we finally closed on the house and got the keys.  It still wasnt 100% ready, but we needed a house.  Saturday, Sunday and Monday we moved everything in.  Set up, cleaned and unpacked.  We were "ready" .  Things were in place.

On Tuesday, Novemeber 12, 2014 our house was finally made a home.  We got to bring the most precious addition home.  Finally.  We did it.  We were a family. Our house was a home.

Its been 365 days.  52 weeks.  1 whole year of having our sweet boy home with us.  He makes us laugh, makes us cry, makes us thankful for what we have.  His sweet tenacious soul is everything you could ever want.  He is the light that brightens our day. Every morning we walk down the stairs and he is sitting there waiting with his nurse, to shine his smile.  It the best thing to start our day.

It hasnt been the easiest year.  We have had to do things that no parent should have to do.  We both became nurses when we became parents.  Our families had to learn the ins and outs of "trach" care.  But we all came together and have done a great job.

We have a home, not just a house.  Our heart is there.  He made it complete.

http://www.gofundme.com/58c7p4

Its been such a special year.  A year of learning, and loving, and just BEING.... I cant thank you all enough for all the continued love and support. The prayers, and the gifts and just the hand to hold while on this journey.  Thank you all so much.  Cheers to a year and cheers to MANY more.

Sleepin in his cozy little bssinet for the first time...

Meeting his puppy brother for the first time.  (that machine is his feeding machine)

Saying good bye to our WONDERFUL primary nurses ... (they wouldnt let us bring them home with us :( )

All bundled up for the cold night and his first ride home

Trying to get all the supplies organized.  

THE DAY HE GAVE ME LIFE

September 23 will always hold a special place in my heart.  It will be a day that I will NEVER forget, for 2 reasons....

Sunday, September 23, living in all the glory of single girl - sunday funday on west 6th in Austin, my life was soon about to change.  While quickly playing a game of skee ball at a local spot, by myself, waiting for my friend to pay the tab, he walked up to me and challenged me to a game.  I laughed and quickly accepted.  I won.  He challenged me again, this time for lunch.  I won...again.  At that moment, my girlfriend - Amanda, ran up to me and shouted that "we needed to leave NOW", we were going to be late for our skee ball league game, at a different bar. (don't judge me for being in a skee ball league, it was fun, and yes, there really is a skee ball league)  I almost ran out of there with out speaking another word to him, but was stopped, and he asked for my number to take me to the lunch I had won.   "Here's my number, call me, maybe".  After 2 weeks of texting/talking while he was away on a work trip, we finally met up for another sunday funday and lunch.  The rest is history.   On that day, September 23, God knew that placing us both in the same spot, our lives would never be the same.  He gave me a life that I could never dream of.  He knew that one day, we would be the parents to this special angel that he was creating.  Only he knew what he was doing on that Sunday - by the way, I thought God rested on Sundays.... however, that mans work is NEVER done.
(weird that as I write this, one of Gabes favorite songs comes on my pandora...YES God, I am listening)

Fast forward....

Monday, September 23, my child lays in the NICU at Dell Childrens, waiting for the MOST important surgery of his short little 2 weeks of life.  He lays there peacefully sleeping, intubated to help him breath.  I have never seen his whole face.  He has been tubbed and taped and wired since the first minutes of life.  Today would be the day that I tried to talk the doctors out of. It wasn't the normal - go to the hospital and hold him all day, kind of day.  I got there 3 hours earlier than usual to get my cuddle time in, knowing I wouldn't be able to for 7 days.  "I know there is a different way to get him to breath, he doesn't need a trach" I said.  For 2 weeks, I selfishly fought with the doctors about a trach.  I couldn't wrap my head around the fact that our lives would not be "normal"  "NO, I don't want to see what a trach looks like on a DOLL"  this is my child...he is not a doll!! "NO, I don't want to talk to other parents who have been through this"  this is us, not them.  Finally, the doctors said I was making it worse by not doing this.  The tubes could potentially harm him.  He needs this.  Our families all came in.  We all prayed.  We all cried.  I was sobbing... like the ugly "Kim Kardashian"crying.  I couldn't contain my emotions.  I couldn't understand why this was happening. My child. My 2 weeks old baby was being wheeled away in a tiny little incubator.  Wrapped up so innocently. His big peaceful eyes staring at me through the window.  Not knowing what was happening.

We waited for about 2 hours for his cranial facial dr to come out of surgery and tell us that our option of carving out his nose holes (his little nose holes are closed) was not going to happen, and he in fact was getting a trach today.  The ENT was about to start.  My world was closing in.  I cried for another 2 hours.  I was so hopeful that there was another option. But this was it.  Our fate was a trach baby.  God knew what he was doing.  He was giving us life.

After about 5 hours of surgery, we were finally able to see B.  They warned us about what we would see.  He was going to be COMPLETELY sedated and paralyzed for 7 days.  There was to be NO movement from him so the trach could stay in place.  I walked in to see his face.  No tape, no tubes, no wires.  His cute little chin, his perfect lips.  His cute little face.  He was free.  I walked in to a life less child.  He lay there still as can be.  He was pale.  It was the most horrific sight.  I just wanted to hold him and cuddle him, but all I could do was stare at his amazing beautiful face.  It was at that moment, between the tears, that I realized "God gave me life".  He gave me a life that I could never imagine I would have as a parent.  It was at that moment, staring at him, that I knew this was what I was meant for.  My life started that day. Knowing that my child was going to soon breath on his own, my life started. I was all in.

After 7 days of being on meds, they started weaning him off.  He was breathing over the oxygen machine, and they were slowly weaning him off of that.  He was breathing from his trach.  His life was starting.  Soon after that, we were able to hold him.  We were a trach pfamily.  We all had to learn the ins and outs of caring for a trach baby.  Trach care, trach change, trach cpr, trach supplies, trach machines... everything you thought you would NEVER need to know, well, we know it all now.

It was on this day, September 23, God gave ME life.  

Its been a year of living with a trach.  Its been one hell of a ride, and its not stopping us.  We are a normal trach pfamily.

Happy 1 year of trach life my little bear.  You have been such a joy!  We love watching your every move.  You keep us all smiling and laughing.  Your little "squeaks" that you make light up our lives.  I can't imagine life any other way.  This is it, and this is us.

http://www.gofundme.com/58c7p4


- S

Every course has an obstacle

Its been such a long, almost year of a journey...speaking of Journey, who doesn't love the song "Don't Stop Believing"...its such a great song.  It also happens to be the song of our life for the past 2 days.

It's no surprise that when you have a medically dependent child, that you will run into problems. Problems with everything.  But when you do run into a problem, it seems to hit you straight in the heart, when you least expect it.

Our newest problem came from a phone call that I received yesterday, and then another one today.

Cincinnati Children's Clinic - Airway Specialist has been on our radar for quite some time. Back in June, we were finally able to get in contact with them and Brody's case was presented to the board there.  They presented 120 cases that day.  This is the trachea mecca of the world.  If you have an airway issue, this is who you want to go see.  I was so excited when we got the phone call letting us know that the "board" accepted us.  It was such a blessing, and at that moment I felt a rush come over me.  Like, I knew it was all going to be ok, and we were going to find a way to get Brody through this.

Yesterday I got a phone call from the Cincinnati clinic letting us know that Medicaid has denied the visit because it isn't medically necessary by their standards to go see them.  WHAT?? You have got to be kidding me.  I was told to hold tight, because we still had Tri Care to approve it.  Today, I got the phone call that Tri Care also denied it for medical necessity.  D.E.N.I.E.D.... I have never felt so heart broken.  What do you mean NOT MEDICALLY NECESSARY.  He is number 13 in the WORLD  with this.  He is currently only the 3rd person still alive with this issue.  I have the research.  This is necessary!  His life is my life.  I'm heart broken.  I'm back at square one.  Back at the beginning of our Pfight.  I'm sad... period.  It is not NECESSARY?? I'm sorry, but if it was their kid, it would be necessary!!! That's all I have to say about that.  I WILL get B to Cincinnati if its the last thing I do.  How? I'm not sure yet.  But I WILL!!   I have gotten in contact with Dr's for letters so that I can start the appeal process, but if you know anything about insurance, you know its going to be a battle.

But if there is anything that I have learned from Bear in this last year, its to pfight, and not to stop pfighting and having faith!

Hoping that the appeals work.

Right now I'm sad, lost, and confused, but every course has an obstacle.... I will beat this one.

http://www.gofundme.com/58c7p4

Keeping the faith,
-S

Just for a moment, LET'S BE STILL

Every morning, I walk down the stairs to go to work, and my bright little shinning light is sitting on the floor, with the biggest smile, the happiest heart, and clapping hands.  Its the best start to my morning!  He gets SOOOO excited to see me, and it melts my heart, EVERY.SINGLE.MORNING.  So, today as I walked out of the house with my melting heart, and big smile, it slowly started to fade into tears.  I couldn't help but lose it on my way to work.  Knowing that tomorrow he will go in for his 6th surgery in 11 1/2 months, breaks my heart.  It breaks because he has NO IDEA what is coming.  For all he knows, he's gonna wake up to his nurse and have the same smile waiting for his momma and daddy when they comes down the stairs, and he will have another normal fun day at home.  But the truth is, that's not what is gonna happen.  He's gonna wake up to yet ANOTHER early trip to his "hotel"aka - Dell Childrens hospital, get some lovin from momma, daddy, grandparents, and aunties, and then go down for a "nap".  He will wake up after 8 hours of sleep, and not know what hit him. My heart breaks, because he doesn't understand why.  He doesn't understand that I DONT WANT THIS ANYMORE.  He doesn't understand that I AM NOT DOING THIS BY CHOICE....it has to be done baby boy!  I know he won't remember any of it, and THANK GOD FOR THAT.... I don't want him holding grudges against me....my heart hurts enough.

I lose sleep in the days leading up to surgery.  I lose smiles.  I gain strength (but don't know it at the time) but the worst thing, is that I lose patience.  I of all people - the most patient one of my family. I lose it.  I get anxiety.  My baby, my heart.  The one I carried inside of me for 10 months.  He is taken from my hands by the surgery team, and returned to me with tubes and wires, and doped up on meds.  I HATE this.  He will lay still for hours, for DAYS.  The doctor says after day 2 when the swelling sets in, his eyes will be SWOLLEN SHUT.  His words hurt my heart even more, but I know he wants me to be prepared.  His words sting when he says that, "He will look different after this surgery.  We will not freak out when we see the swelling, because we know its coming"  Its like some one is preparing you for that knife to stab you in your heart.  You just need to know that its gonna be bad... its gonna be hard.  He's going to be cranky for a couple of days because he won't be able to open his eyes.  My bright little light.  He won't be shinning for momma.  Momma has to shine for him, and I feel helpless.  I feel dull.  How can I possibly get through this again.  I will.  I have to.  For him.

This surgery is big like the last one. Aprox. 8 hours. They will reshave the hair on his head.  Reopen his zig zag scar from ear to ear. Take the distractors from the last surgery out.  They will cut the top part of his skull and reshape it and fix the top of his head.  They will fix the little bulge on the sides.  And they will move his forehead forward.  Whew... I hurt just thinking about it.    The "hotel" stay (Im tired of saying HOSPITAL) will be another 5-7 days.  Gabe and I will sleep on the pull out bed.  I will sit by B's side and wait for his light to be bright.  To be Happy. To be him.  However long it takes.  I will wait.  I need his bright light to calm my heart.

I write this, and my favorite song comes on.  "Lets be still" by The Head and the Heart.  Which I find funny, because here I am talking about his head and my heart.  And as I listen and write, I take away this.  Lets be still.  Just for a moment.  Live in the day.  Don't be anxious.  Be still.  I will enjoy today with him.  I will hold him. I will love on him, extra! I will be still.  Be still my heart.  Let the world stop turning just for a moment.

Tomorrow when I wake up to the moon still out, I will turn on my light, so that I shine for him.  But today, I will savor every minute of his happy, bright shinning, little soul.  It will warm my heart, and I will carry it with me and hold on to it.  And I know he will be back in my arms soon.

I pray for the doctors and the nurses. I pray for steady, knowledgeable hands.  I pray for Brody to fall asleep with his Angels by his side and to wake up with their gentle touch.  I pray for his anesthesiologist.  To help him breath.  To keep him from feeling any pain. I pray for Gabe and I to be strong for each other.  I pray for my heart to be strong for everyone.  I know that Gabe needs me too.  I pray that I can comfort him in his hurt.  I pray for his Angels to carry him through.  I pray.  I cry.  I pray some more.  


http://www.gofundme.com/58c7p4


With a hurting heart,
-S

Make the decision to just BE...

I have this shirt that I wear to work, it say " Be Happy
                                                                     Be Bright
                                                                     Be YOU....   and I some how manage to always put it on, on the days where I am just NOT feeling it.  I usually wake up in a sleepy slumber, grab something to put on, and get going.  Its not until the drive to work that I realize what I am wearing.  ( I work at a spin, yoga and pilates studio, so I get the comfort of yoga pants and tank tops every day)  My drive to work is 25 minutes of hill country views.  Trees and hills and clouds as far as the eye can see.  Its a beautiful drive.  Its also my time to think and reflect. I cry ALOT on my drive.  I think a lot.  I pray even more. I then decide to be HAPPY, BRIGHT, and ME.

I have seem to be wearing this shirt a lot lately, and I think its Gods way of telling me to snap out of it. I've been a mess lately.  Everything just seems to be getting to me.  I especially find it hard and annoying and sad when people stare.  It makes me uncomfortable.  So I stare back at them.  Why are you staring at us?  We aren't different.  We are just living with what we know! We are a normal family. We are normal. We work, we eat, we cry, we pfight, we love, we laugh, just like any other family. Why is it so hard for you to look away.  Give us our space.   Yes, I understand my chid has the biggest, most loving, and happiest eyes you ever seen.  Is this a problem for you?  Yes, I understand that my child has to eat through a feeding tube.  ( I over heard some drunk idiot making fun of us when we went out for Gabe's bday)  I about got up and punched him in the face.  Instead, I just stared at him and smiled.  No lady in the dressing room at the store, I don't need to go to another room to suction my sons trach.  Sorry that the sound of the machine is bothering you.  DEAL WITH IT...

I have also been flustered about his feedings.  The doctors want him to take more food in, so we upped his feeding from 200mls to 260mls.  My body has decided that 200mls plus, is just too much to make, so we have to supplement with formula.  His body HATES formula, so he throws up at least 1x a feeding.  Im sad for him.  He knows when he is about to throw up and gives me this look.  His happy little eyes just get so sad and scared.  I hold a towel, blanket, shirt, or anything I can find, up to his mouth to catch what ever comes out.  When he's done, he smiles, and grabs his paci, and his eyes become happy again.  Its hard for me.  If I was making enough to feed him, we wouldn't be going through this.  His body loves my milk... I love giving him my milk.... I feel like Im failing him by not making enough. Its sad for me.  I do realize that I was blessed with the ability to make milk, so many mothers can't.  I bet they are just as sad as I am.  Its hard to see your childs eyes turn from happy to scared and sad.  This too shall pass, and I pray that he starts to handle the food.  We saw our dietitian yesterday and she decided to reduce the amount to 215mls.  We will see how this works.  Hopefully it works.  We need a break through with his feedings.

Gabe has been gone for a couple of days for his annual training.  This means 2 things. 1. I am on my own after the nurse leaves. and 2. That I am not forced to put B to bed every night.  Usually, B falls asleep on my lap about 8-830 and Gabe has to force me to put him in the crib.  I usually talk him out of it until about 930, and then he wins the battle and up we go to put him in bed and say our prayers.  But the past couple of nights, I haven't been able to force myself to put him down until about 11.  I have just been enjoying the sweet sweet cuddles.  His hand on my chest, his head on my arm, and the feeling of protection.  He relies on me for protection.  Its in this moment when i think back to the shirt Im wearing.  Be happy, be bright, be you.  Yes Bear, for you I will be happy, I will be bright, I will be ME and you will be you.  We will be all this together.  I give my fears to God at this moment, because I lean on him for protection.  I know he will protect us and calm my fears.  We are who we are, and thats the way its gonna be.

Thursday is our appointment with the Cranialfacial team to discuss his next skull surgery.  It will be in late August-Early September.  This surgery will be to take the distractors out, shape the top of his skull and I believe move his forehead forward.  All that will be confirmed on thursday.  So I will update you then.  I pray for peace and for my heart to calm.

I pray for all of you, our friends. Our prayer warriors.  I pray for all of you that have donated to us.  For all of you that have sent me a message of love, a gift of sunshine, or just a smile and a hug.  Every kind gesture from each one of you has gotten us through the last 10 months. Thank you for coming along on this journey and for helping us pfight.

Remember... when you are feeling down, only you can make the decision to BE HAPPY, BE BRIGHT, and BE YOU!!!!  

http://www.gofundme.com/58c7p4


Love always,
-S

Relax your heart and mind, for you will need it in due time

Happy Monday to everyone.  Hope all of you were able to spend our Independence day the way you wanted.  We did a LOT of sleeping in our house.  We had a nurse Friday for half a day, so this momma was able to sleep in till 10am!!! I did wake up to pump at 4am and had to go into B's room to suction his trach at 6am, but was able to fall right back asleep.  THANK YOU JESUS!!!  Gabe and I went out to celebrate his service for our freedom and had a nice little lunch, then went back home and the 3 of us took a great 2 hour nap.  Once we woke up, we ate some more food, went for a little walk, and you guessed it, went right back to sleep!  The rest of the long weekend was spent playing and relaxing as much as possible.  It was quite nice.  

This week (on Gabes birthday) our little Bear turns 10 months!! Its been such a ride, and is about to start taking off.  Brody has been quite the character these days.  He makes us laugh every day.  I am so thankful for the opportunity to be his mommy and watch him grow.  Im not gonna lie it is hard some times, but I wouldn't want it any different.  Like I said before, I think he is teaching us more than we are teaching him.

I am excited to say that we got the phone call back from the childrens clinic in CINCINNATI!!!  We were happy to hear that, depending on insurance, they will take his case.  Hopefully our insurance will help us out with this.  We talked for a while with the nurse, and she just wanted us to know that this is a HUGE commitment.  Financially and emotionally.  There will be multiple trips to Cincinnati, and we have to be committed to this, no matter what! Once our insurance is processed, we will be scheduled for the first visit.  Because this is the Trachea place to be at, there is a 3 month waiting period before we can get in.  Like everything else, its all about waiting.  Once we are there, it will be a  busy 3 day visit of different studies and procedures.  You would think they can just look at his Trachea and say ok, this is what we got.... but nope.  They will do different procedures to look at his lungs, stomach, esophagus and trachea. On the 4th day of our trip, we will sit and meet with the whole team and see what they find and what their plan of action is. Hopefully they can give us some answers and a plan to prolong his life.  Im not leaving there till they give us SOME SORT OF ANSWER!!! Thankfully he won't need to stay in the hospital over night, and can stay with us in a hotel.  They did say that the Ronald McDonald house is more than likely full, so that is option is out, unless a miracle happens.  I am so thankful that they have accepted to see us.  He was 1 of the 120 cases presented to the team last Wednesday, and he was a "chosen" one... YES... answered prayer right there!

The next couple of months are sure to be busy.

In August, we will go back in for his second reconstructive skull surgery and maybe another scope of his trachea.  That will be another 3 day stay here at the awesome Dell Children's!  Ill write more about this when we have a better plan on whats going to be done.  I know right now, there are a couple of different options being talked about, but nothing has been set.  We will discuss with the doctors in 2 weeks, and schedule then.

September, he turns 1... holy moly in 2 months he will be 1!!!  His life celebration is being planned and is sure to be one for the books. Everything in his first chapter of life will be celebrated, in the most cost effective way possible!  ;)

October is when we should go to Cincinnati.  I can not wait!  We need to start saving $, working extra, and planning for the first of many trips.  Maybe I should start looking for a second and third job!  I will give every single penny for this kid.

With that being said, this week, we have a family wedding to attend in South Padre.  We decided to make a long weekend of it, because lets face it, no one wants to drive 6 1/2 hours for just 1 day.  Im so excited just to get away and marvel in the beauty of the ocean.  Its by far my favorite thing to look at and just stare at.  To see how big and beautiful Gods creation is, is just amazing!!! I hope Brody enjoys it just a little bit.  My parents and Gabes parents are going with us for some help and sanity, so hopefully 4 day of relaxation is in my future.

Thank you all soooo much for the kind words of inspiration, and all of your love and prayers.  We would be no where with out faith and the continued prayers and thoughts!!


http://www.gofundme.com/58c7p4


We love yall!!
-S

A busy life is a normal life....right?

A couple of weeks ago, our pediatrician recommended that we go to a clinic called Austin First Steps.  Its a place where they follow and track your child's development.  They mostly do premie babies, but because Brody is such an AWESOME case, they wanted to follow him as well.  It was a 2 hour apt, and Brody showed them who was boss.  It was so funny to watch him.  One thing that the Dr. did was, pick up a bell and ring it and then she set it down in front of him to see what he would do.  With out hesitation, B grabbed that bell and gave it a nice couple of rings...and looked at the Dr and with his eyes, he silently told her "now what, lady"  and then started banging the bell on the table.  I wish everyone could've been a fly on the wall, because I really am not bragging.  I was just so surprised he was doing all these little tricks and milestones.  So after discussion and play time with the Dr.  his test results came back as NORMAL.  That means, he is doing everything a 9 month old should be doing.  The only thing that was below average, was his speech and gross motor skills.  We knew speech would be, well, because he has a trach and doesn't make noise or eat.  And his gross motor was because after his skull surgery, they put him on "rolling over and tummy time restriction" so he lost most of his arm strength.  Our physical therapist has been working with him, since we got the go-ahead a couple of weeks ago, and he has been slowly regaining his strength.  With all that being said, my heart smiled and a sigh of relief was released.  It takes a huge part out of you knowing that your baby is different, but knowing that he is on track, just fills me with a sort of feeling that is hard to describe.

Another topic of discussion was his feeding and calorie intake.  Bottom line is, this milk factory is slowly but surely drying up, and Im so sad about this. I still pump 5x a day and am trying my hardest to keep it going, but its just not happenin.  They want him to be getting about 260 mls of breast milk 4x a day but I'm only making about 150mls every pump.  So the conclusion was to supplement the missing milk with formula.  While that wasn't my first choice, I am ok with it.  I don't feel the pressure and stress of trying to make enough milk, and I know he is still getting the majority of breast milk.  He has been doing very well with our speech therapist and eating baby food much much better.  All I can ask for is progress and he is doing just that.  He is pushing through and pfighting on.

With all this excitement and progress, we thought it might be time to start introducing him to more kids and more play time.  Besides from the occasional visits from Gabe's niece and nephew, he has had a couple of play dates with his "cousin" Southern and his cousin Gabriel (who are both about a year or so older), while us adults were visiting, but other than that, he has never been around other kids his age.  I thought that maybe taking him to Gymboree play groups would really get him on a whole new level of learning.  I looked into classes and they had a "first class free" pass, so I signed us up and took him yesterday.

My mom drove in from SA to go with us and capture his big moment.  I am not really sure how to explain how he did.  I don't know if he was just extremely tired from therapy and not napping, or if he was just in shock from the different atmosphere.  There were 3 other kids ranging from 7-9 months.  And Brody just had this blank stare on his face like "WHAT IN THE WORLD IS THIS PLACE".  We sang and clapped, and stomped our feet.  Worked on crawling and moving, and playing soccer.  Bubbles were blown and the parachute was flown.  But still the same ole blank stare came from him.  It wasn't until we were finished putting our shoes back on and walking out the door, when his smile came back and he was clapping his hands.  So I guess he was excited to leave.  Little stinker!  The kind teacher offered another free class next week, to try it out again.  Hopefully with a nap before, he will be a little more excited and involved!  We shall see.

Here are a few videos of what we did.

Using the walking cylinder

We got our own bubble to pop

Trying to get him to crawl up the ramp....not happen' mom

(sorry for the quality of the videos, I am trying to work on them)

Also on our exciting agenda of trying to be "normal", is our first family trip to the beach, in July.  We attempted to go to the beach a couple of weeks ago while visiting my aunt and uncle in Galveston, but matter of the fact is, we were total house bums and just enjoyed being on their deck on the bay.  But this time, Gabe's parents and my parents are taking him to the actual beach at South Padre.  We are going for Gabe's cousins wedding, but making it a long weekend of family time before Gabe's busy work travel season ensues.  While I am FREAKING out about the mixture of sun, sand and a trach, I am trying everything to remain positive.  Im sure it will be better than I am imagining, and while I am excited about family time and putting his feet in the sand for the first time,  other things are going through my head.  So I guess its time to start making our supply packing list, and getting things together.  

One of his beach outfits from Grandma

Wish us luck.  

Much love to you all, and hope everyone is having a busy normal summer!!!

Love, 

-S

http://www.gofundme.com/58c7p4

The fear of the "unknown"

There is a lot that goes into being a trach baby Pfamily.  There is equipment, monthly supplies/organizing, daily cleanings, weekly trach changing, nursing care, emergency supplies EVERYWHERE, travel equipment that goes everywhere you go and of course, suctioning secretions as often as needed.  Brody is not one that needs a lot of suctioning.  Think of it as blowing your nose.  Some people do it all day every day. Some, in the morning when they wake up.  Some, only when they are sick.  Well same goes for a trach baby, and suctioning is like "blowing his nose" and Brody falls into the "when you wake up" category.  He usually has really icky secretions in the morning when he wakes up, and thats it.  During the day, we maybe suction him once or twice, and usually NEVER in the middle of the night.



Tuesday during the day, he just wasn't himself.  He was fussy.  My mom was here for her weekly visit, and that usually involves lots of cuddle time.  When I called to check in from work, she said that he had been asleep in her arms for over an hour!! He never takes that long of a nap.  When I got home, about 2 hours later, he was ready for another nap and just cranky.  We chalked it up to teething, because he was also drooling like there was no tomorrow.  Then, later that night, he started spitting up his food.  I knew from there it was going to be a LLLLOOONNGGGGG night.  And sure enough, I got up about 3 or 4 times because I heard him having difficulty breathing through the monitor, and his secretions were horrible, every time.

Needless to say, it has not been a good 2 days.  His secretions are so think and green, his cough is horrible, and for the first time since being born, he is needing the oxygen machine at home to help him breathe.

Then it got me thinking...  What if this is the "trachea sleeve" issue.  Is this what happened to the other 12 kids that had this issue?  Is his trachea going to collapse?  Is it closing?   Is this the "unknown"?  The fear has me so worked up.  Being 1 of 13 in the world with the "trachea sleeve"  means that there is not much literature on what happens.  We have no signs to look for, other than difficulty breathing.

 Im scared.

We took him in to the doctor yesterday and his diagnosis was 1. Ear infection 2. Respiratory infection 3. Tracheitis (inflamation of the trachea).  He is on a pedialite diet, because he cant keep food down, (which means I can build my milk stash up some more...bonus for me) and like I said earlier, he is using the oxygen machine at home to help him breath. He is also getting albuterol treatments every 4 hours. His oxygen stats are ALWAYS 99-100, but they have been in the low to mid 90's, which means he is working extra hard to breathe, aka difficulty breathing!  My heart has been racing for 2 days, and Im trying to keep calm.   But the fear of the unknown is taking over, and now I am getting sick.  I went to bed at 8pm yesterday. And just feel mentally and physically run down.  All I want to do is hold my baby.  Im so sad for him.   And wish I could take his place.

I pray that this will pass quickly and that Im over thinking the situation.  But with out knowing what actually happens, the only thing left for my mind to do is wonder.

I think it may actually be time to go to Cincinnati or Chicago and see the trachea experts and get a second opinion or try to find some kind of answer!   Or, do I want to know what happens?

But for now, all I can do is pray, and give him extra love.  Lots and lots of hugs and kisses.

http://www.gofundme.com/58c7p4

Till next time,
-S

A HAPPY blog for Moms, Bear, and updates.

I have been writing trying to write a post for 2 weeks now.  This is the 3rd one I have started, and I WILL complete it!  There are so many things to write about, so hopefully I don't ramble on and on.

First things first.

HAPPY MOTHERS DAY!  I realize that it is in 2 days, but I just wanted to give a shout out to all the mothers, grandmothers, GODmothers, aunts, dad-mothers, and so on.  I give props to all of you out there.  I have learned so much these past 17 months ( 9 preggo months and 8 months with a child).  Being a mom means so much more than just birthing a child.  I have learned how to love WHOLE heartedly, given more to him than I have ever given any one, and cried for him more than I have ever cried for anything.  I have learned what it is to truly fight for someone, to really pray and believe in the power of prayer.  My son has changed my life in so many ways.  And not only do I get to sit back and celebrate my first official Mothers day for me, I celebrate it for my mom, a first time GRANDMA, some one who has given every possible free minute to be here for us.  She has driven thousands of miles in the past 8 months to be by our side. She has cried, cheered, prayed and laughed with me EVERY day since September 9!  She is the person who has taught me HOW to be a mom.  I could never repay her for what she has done for us, and the countless amounts of powered doughnuts she has brought to me to make me happy and feel better!  My sister, B's GODmother, and #1 aunt.  She too has given every ounce of love to our little Bear.  She has taken on the role of #1 spoiler, and I don't see it coming to an end any time soon.  She has hidden her tears from me, so she could be strong for me, in the time when I was at my lowest, and she has cheered us on every second of the way.
I could go on and on about ALL the amazing women in my life, who have been there for us every second of the way, but I have other things to write about.  So, today, I leave all you loving women in our life with this quote and thank you from the bottom of my heart:

Being a Mother doesn't mean being related to someone by blood.  It means loving someone UNCONDITIONALLY  and with your whole heart!

Next thing on the agenda...  

HAPPY 8 months to this little pfighter we call Bear, aka Brody.  Wow, where has the time gone?  He has grown so much and is doing exceptionally well!  We are still a little behind on some goals, but I am not as stressed about it as I was.  I know he has been through so much these past couple of months, and while he is still making huge progress, I know he still needs time to recover and get back on track.  He has started with a couple of new things, like clapping, saying NO (uugghh has this really started?) and rolling over on both sides.  He has 4 teeth now and is a slobberin sammy!  We are still trying SOOOO hard to get him to eat by mouth, but for now he still has this milk factory running 5 times a day! (BUT Im totally ok with the extra burnt calories from it)  We got him a big boy high chair and some little food toys, so hopefully he gets the hang of it soon.  He is 18lbs now!  Big Boy!  And super long (not sure of the inches).  He is the happiest little piece of sunshine despite all he has been through. 

And last but not least, his 2 week post op from skull surgery. 

The past 2 weeks have been such a roller coaster of emotions! And lot of lost sleep for all of us!  Brody has truly shown what a pfighter he is!  He has bounced back from surgery like a little champ and is doing so well.   Its been a long 2 weeks of medicine weening, fighting sleep, breaking out of arm restraints, trying to tell him he cant grab his head and no more rolling over! Its been a hell of a pfight, but well worth it.  He has these two little metal arms coming out the side of his head that Gabe and I have to turn 2x a day with a little special screw driver.  It doesn't seem to bother him to much, and for the most part, he only pfights it when we go in for his weekly check ups.  I think he is starting to associate that a "white coat" = lots of pain.  Gabe and I will have to turn the screws 1mm a day for 30 days which will be a total of 30mm. After the 30 days, we will see how much his skull has shaped and wait for 2 months for the bone to totally heal.  After those 2 months, which will be the end of July, the doctors will go back in and remove the distraction device.  At that point, they will probably do yet ANOTHER surgery, on the top of his skull, and we will be back to square 1.  OYE VEY.  Another surgery, another hospital stay, another ride on the emotional roller coaster.  But for now, we have our weekly check ups with the craniofacial team, and our daily prayers that he heals like a champ.  So far everything is looking good and we couldn't be happier with his progress. We have all noticed that his skull is starting to have a round shape, his eyes are not as bulgy, and the top of his head has gone down.  That means his brain has room to grow and is now able to grow like it should. It's a day at a time, but we are still learning to pfight as we go!  For now, he just keeps us laughing and on our toes.  

I learned a new trick, so here is our story in pictures.  

This is the back of his skull right after surgery.  All those holes, are missing bone!  Because there was so much pressure building up in his head from his brain growing, the bone was eroding away.  Now that his brain will have room to grow, all that bone will regrow on its own.  Its truly amazing how the body works!  

My little Bear the morning of his surgery. We had to put his bear outfit on, its like his super man costume.  SUPER BEAR!! Poor little buddy had no idea what was about to happen

Daddy and Bear.  The purple gown is his pre-op heating gown.  They attach a little blower to it and it heats up and keeps him warm.  Oh technology these days!  Ironic that its a bear gown?? I think NOT!! 

I hope NO parent ever has to see their child like this.  

He had his first hair cut in a way I never imagined it would be.  

OH happy baby to be at home.  You can see his new little "metal arms" on the sides of his head.  

So happy Mothers day, happy 8 months, happy almost summer time... and just happy happy happy EVERYTHING!! If he can be happy... you have NO reason NOT to be!!! 

http://www.gofundme.com/58c7p4

Much love,

-S