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
Tuesday, September 23, 2014
Wednesday, September 3, 2014
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
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
Tuesday, August 19, 2014
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
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
Tuesday, July 22, 2014
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
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
Monday, July 7, 2014
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
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
Thursday, June 26, 2014
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.
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
Thursday, June 5, 2014
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
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
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