Joeli's Voice!

This is Joeli. Today would have been her ninth birthday. One of the hardest realities is she is not here in the physical sense that her Mama can’t wrap her in her arms. But because of her loss, because of her voice that her mama continues to speak. She is still here. That Joeli’s voice is SO loud now by everybody else speaking. That the heavens can hear it! I wish everyone could know the strength and pain of her Mama telling her story. I honestly pray and am making it a demand of myself that one day soon people do hear her mama telling the story!

July 31. Joeli's Mama Brittany responded to a post in a Neutropenia support group for Moms. I was posting how we were struggling with Ady's diagnosis. Right away she offered her number! She said she new she could help! She gave me her number and told me to call her the next morning. So I did. Little did I know that conversation. That one phone call would change our life. The way I look at my babies. The way I hear and trust what is done medically with Adisyn. A friendship.

My heart broke. I heard the thing that is my worst night mare. As her reality.

Joeli was 3 years old. She had cyclic neutropenia. She was diagnosed when she was two months old. Her Doctor’s decided to deal with her being sick as it happened and see how she did. Her Mama has it as well and had been approaching her own Cyclic Neutropenia the same. When Joeli turned 3 Brittany wanted to have her 6 week cycle documented, to get her baby started on Neupogen. (G-CSF) which is an administrator of white blood cells growth factor. She would call to get results. But they'd make it hard for her to get results. They blew her off.

It broke my heart and instantly by the beginning of her story. I felt a connection that is indescribable. I new why she had told me she wanted to talk to me.

She called for results. No one called back. She begged for her baby to be put on Neupogen. She was starting school and Brittany was scared for her. He told her Joeli just wasn't sick enough. "With that, what could I do? I went back home." Two days later... Joeli got sick. She got a fever. They brought her into the ER where her CBC discovered NO neutrophils and a positive rapid strep test. However she had no signs of a sore throat. NOTHING. So The ER Dr. called the hematologist Dr. on call who blew it off on the infection causing the low ANC. They gave her a shot and a prescription oral antibiotics. She said "They sent us home." Joeli threw up right after her first dose of antibiotics. Brittany called her pediatrician who said she’d be fine. To just make sure she got plenty of fluids. But on Tuesday Brittany took her back to the Pediatrician because things were getting worse. She said “they didn’t do anything. No CBC nothing and I had been up for two days with her which is why I didn't think about asking for a repeat CBC.” She said that night Joeli felt so sick she couldn’t even walk to the bathroom. She carried her back and forth. AGAIN, Brittany called the Dr. who told her to stop the antibiotics. Again; Wednesday things got worse. She called AGAIN!!! With another response of “if she is drinking she will be just fine.” But Thursday came around and things got even worse. Brittany cried as she told me. “I took her pulse it was 200. I was up all night with her. I just new something was really wrong” Her Doctors office told her to meet them there when they opened. So she went. But when she got there she was told the Dr. was running late. She ran Joeli to the ER.
Again she started crying and I did too. She said “I new something was seriously wrong. They made us wait when we got there.” Joeli arrested and they could not get her back. She had pseudomonas aeruginosa. It ran then her lungs and heart. A week later Brittany called to cancel her follow up with the hematologist. She said when she called she asked if Joeli was sick enough. If she was sick enough now that she was gone.

She then described to me the heart ache of going back to a home full of reminders of her precious baby. Sappy cups. Dollies. A house missing her Joeli. How her arms continue to ache to hold her baby. She told me how she HATED that it had to be her Joeli. But that she wanted to make sure that it wasn’t my Adisyn. That she wanted to help me make sure that didn’t happen to us. I was speechless. This lady I didn’t know at all. Pouring her heart to me in hopes to help save my baby? Why? She didn’t owe us anything. She was so many prayers being answered all at once.

I don’t think there is any way I can give back to Brittany was she’s given to me. What her Joeli has provided for my girl. Because in the end it’s Joeli’s life that is helping to save my Ady. It’s her picture that fuels me in every Doctor appointment.


I am holding our friendship close to my heart. What Brittany has given me is something I don’t think any one else could have. What she continues to give me when I need a boost. The words my heart needs to hear. That we can fight this. We WILL get treatment and a plan for Ady J. SO. WE will! Believe me my voice has gotten much louder! AND… Yours can too. Will you help me raise Joeli’s voice?

Neutropenia is a very rare blood disorder that effects your bodies Neutrophils. (The cells responsible for fighting infections.) Many people have ever heard of it. Sadly many Doctors don’t even understand it. We NEED to raise awareness. What happened to Joeli didn’t have to. People NEED to understand! You are your child’s voice! Can Y’all do me a favor? Lets help lift up Joeli’s voice!! My heart is that her voice isn’t silenced. BUT that it’s LOUD! That her life. That her story can touch your life in some way! What ever that may mean to you. Again/// You are your Childs voice.

Happy Birthday to the girl who is helping to save my baby. Joeli Mothershead! You will for ever be in my heart.

JESS

We can do this.

2:45 AM. I am torn from sleep. My heart is pounding trying to determine if I am out of my nightmare and into reality. Adisyn is close to my chest. I let in a deep sigh of relief. I tell myself what I always do when I wake up from nightmares of the NICU turning blue in my arms. "Adisyn is fine. She is here in my arms safe. She already beat that. She's a tough girl. That battle is over." But it's just then where it knocks me breathless and pain becomes yet harder. She has another battle. The toughest one yet. I know my statistics. I know what she's up against. I feel tears threatening to burst. But I hold them hostage not willing to give in.
3:15AM. Adisyn moves restless. Her quiet cry stirs my heart. I look at her. She's beautiful in every way. Everything we've been through flashes through my mind. Which only causes more pain. She's just been through so much. I have a moment of jealousy. To babies and mothers. To families who never have to go through this. To parents who take their life's and that of their kids for granted. For them not knowing what it's like to have to fight for your babies life. To literally watch your baby fight for her life... Time and time again. I am suddenly mad. At myself. Because I REFUSE to do that! Adisyn grabs at me calling my name. I start to sing to her. When it hits me. We needJesus MORE. This week I've thought twice on everything I believe in. Everything I stand for.... But that seems so ridiculous now. I know if she...If I can make it through this. We need Him. There is no alternate route. No second plan. We NEED Jesus MORE.The baby moves which only makes me realize I've been singing worship songs. I take her in the living room. Wrap her in my arms. I cry out to God. Half singing at what all I have. Half prayer. Then going between the two. I didn't know I had this left in me. Bu I am determined to find more. Because its God who made Adisyn possible when Drs. Said no. It's been God! Time and time again. Broken voice. Broken heart. I give it to God. Adisyn is in His hands! I do the only thing I can. I sing out to God. I know that it's in these times if I can just find it. If I can just find that place. If I can just find that moment. If I can just find that secret place! I NEED to meet with Him. More then a prayer feeling alone. I demand. I won't leave this spot till He is here. Till I know he's got my girl. Till I know we can get through this. So I sing. It hits me hard. I am knocked down. My guard has fallen as I know. This is it!! There is no other explanation. I am there!! Relief is sweet! I cry out. With out hiding my heart in any way. I cry out "I am scared."I don't even hate to admit to Him. I can't do this with out Him... I need comfort. I NEED to know we can get through this. I NEED this pain to ease. I can't go on any more. I NEED him. I am exhausted. Everything I have, all that I am carrying. He takes. I have nothing else. I am empty. But then he fills me. You are brave. Your stronger then you think. You CAN do this with me. I'll give you all the comfort you need. You CAN keep going. Adisyn needs you. I chose you for a reason. I love you. Your not in this alone. I believe in you.
6:00 AM. I can do this! I take a deep breath. It's not painful any more. I know I'll have to do this over and over... But it's ok. I know we can. I am ready. Time to get everyone ready. It's going to be a long. Hard day. There's no turning back. We're ready for answers. She's ready to start healing. But we're not alone. We have the God who threw the stars across the sky leading our way. It's not that it will be easy. I know it won't. But I'll always have God, Ady is in safe hands.
Sorry for the rocky writing. This isn't really me to put my heart out there. Admitting this. But people should know. We're raising awareness. Even if its the most awkward thing for me to post. This is what families with Neutropenic and SDS kids go through. This is what the diagnosing process is like. This is what the pain is. Adisyn goes in this morning for her first bone marrow aspiration. I know it won't be her last. This is how it will be for me most mornings. People should know. My hope is that people won't have to go through any of this to know how precious and costly their child's life is. Hold your babies extra close today!!
Love,
Jess

To raising awareness! Because even Mama bears get caught off Gaurd!

I am caught off guard. Everything was happening so fast till I seen Adisyn and Alicia giggling in the garden. The sound takes me down and gives me a moment to catch my breath and stop. Reality hits in and it hits in hard. Suddenly a burst of pain enthrones my throat. My chest begins to tighten. The conversation with Adisyns Hematologist/Oncologist runs through quickly. I feel myself asking again are you sure? I am falling down so I repeat my thoughts as the Dr. Explained what's happening in Adisyns body. "I've been prepared for this. This is nothing new. I can do this. I can do this." The image of My sweet girl being prepped for her first surgery flashes. Then thoughts of the kids I know of that have what Ady has come into mind. Cancer. Bone marrow transplant. Even worse. I can't breath. Alicia is calling for Abraham and realize Ady has caught me staring in the window and comes flying to the window screaming at the top of her lungs "momma" "momma" arms wide open. With in minutes she's at my chest and finally my lungs fill with air. At first everything is fine. But the pain sets in much deeper. Suddenly a rush of heat fills in my lungs and nothing I can do stops it... But my eyes are now deep in fire too. Desperately calling for relief. Adisyn let's go so that I am staring directly at her face. She smiles and wrinkles her nose so that I laugh. Suddenly with out notice my body give in and my eyes are filled. I am so upset because I know for me this is not an option. I MUST stay strong for her. I try and remember that stupid mantra I was trying to play in my head that got me through the Dr. Apt and most the day. I am left empty. Nothing comes to mind. I feel my chest tighten more at the though of me losing it. I fight for a deep breath and manage to squeeze in just enough air to make the light headedness fade. Ady hops down and grabs my hand. Pulling me to her little car. Smiling saying "broom broom. Mamma." the sound of her voice melts me and I find a momentary relief. It sounds through my mind again. "you got this, you can do this, breath." So I breath and finally let a deep breath in. I don't know how long its been since I took a deep breath. Again I find myself in the conversation with Her dr. Severely low ANC. Elevated LDH. Platelets. White blood cell issues. Polymorphism. Liver function issues. Pancreas insufficiency. Shwachman-Diamond Syndrome. Severe Neutropenia... The ever more possibility of Cancer... Cancer? Some how hours pass, Abrahams tucked the girls into bed and Adisyn has found her way to my chest right above my heart and is sleeping soundly. It's been awhile for her. To sleep like this. With no waking up crying in pain. Then I am reminded. A conversation I had with a specialist. "Your daughter will also smile when she's experiencing a great deal of pain, pain that would probably cause you or I to drop to the floor. The thing that is important for you to realize. It's all she's known. It's her normal. Like a child born blind. They smile. They are happy kids. It's all they know. Could you or I do it now. No. If we had to, would we smile? No. We probably have a really hard time handling it." everything spins... The conversation ends in my mind because the thought of my baby in pain rips threw my veins and I am burning. The thought that she seems happy because it's all she's know sinks even further. Shes wrestling in her sleep. The time when her guard is down. She's starting to whimper. I stuff the ripping pain down as far as humanly possible and do the only thing I can think of to calm her down as she starts to nurse. (The thing thats kept her as well as shes been.) I don't hold back any more. I sing to her.

It's been a while...

For the first time, in a very LONG time... Were ALL (healthy) :THANKS:GOD:

(Alicia) continues to be our smarty pants and NEVER seises to amaze us. Everything that girl does! You would think that I would just be use to her comments and... "Views of life" ;) BUT still she leaves me laughing!
Can you believe that girl corrected one of her Sunday school teachers Spanish?!? One more brag moment on her... Her Auntie Jessie just tested her... She scored for a 5 year old!!!
<I think were in it with that one>

(Adisyn) continues to be the strongest person I have met! She healed up and has taken her entire tumor experience WELL! This girl just makes me one proud mama bear!! I am also amazed with my Ady J. She just knows how to kick some MAJOR butt w milestones ;) Her Dr. Had given me this long speech on how not to expect mile stones at her actual age rather her adjusted age (how old she should be) WELL as it turns out my Adisyn REFUSES to let ANY part of her remain preemie. She's been doing ALL her milestones early! Not to mention she just got her first two teeth! As an added bonus she is :WAY: ahead of her growth chart! But most importantly- She been remaining healthy!
Well there's my mini update! Sorry for the lag of them! (promise to write more) I have been insane busy just enjoying my family and learning how to live with everything being good ;)
Much Much LOVE
Jes

Sent from my iPhone

UPDATE: Dr. Got the ENTIRE tumor (had advanced more then he had thought) and he said the rhinoplasty went great as well! BAD news: she's having a hard time nursing :/ as soon as she latches on she screams and turns her face and trys to pull at her nose! (Any body who knows our girl KNOWS she doesn't miss a meal, shoot she doesn't even miss a snack.) So her not wanting to eat... My heart feels absolutely BROKEN! Seeing her little nose all bandaged up and then hearing her cry... I hate seeing her like this. I HATE that I can't just fix it all for her and take all this pain away! :( AND if all that weren't enough... Being in this hospital only reminds me of being ROBBED of her first 2 weeks of life. I thought I had gotten over the entire NICU journey... But as it turns out... I haven't. I am still upset! Maybe it wouldn't be so hard if we could just catch a break! If getting prego wasn't a hard enough journey on it's own... Our complication FILLED pregnancy THEN emergency c sec and prematurity! :( I HATE that she has had to go through so much!! On a different note (because YES I am well aware I just complained and whined this entire entry) I am more proud then EVER to be Adisyn's mama! This baby is HONESTLY the strongest person I've ever met!! YET STILL she continues to defy ALL odds... She is such a miracle! I can't wait to see what God will continue to do in her life. Please remember to keep our baby bear in your prayers!
-jes

-Sent from my iPhone

*It's Tuesday- AGAIN*

Tuesdays are "Dr.Witts" days. (Adisyn's plastic surgeon) Who we absolutely LOVE! He is such an amazing Dr. On the down side he is at the Children's hospital. Which makes me feel physically sick to be. The way it looks and feels brings me back to Adisyns NICU stay. (The most horrifying down right most awful time of my life.)
     Her tumor "experience" has been one of a kind. Day time: She does ok, a little trouble nursing but all in all "tolerable." Come night time, shes a different baby! Saying I don't sleep is an understatement. She can only breath through ONE side of her nose. Which may not sound too bad. Plug one side of your nose and see how it feels. AWFUL! I did it for less then 30 seconds and started breathing fast feeling :yuck: But the Dr. says every Tuesday he sees her is "another week we win." Only when Ady J attempts to nurse she looks as if shes drowning which doesn't feel like much of a win to me. I HATE not beeing able to do much for her. Seeing her like that breaks my heart. So... Till next Tuesday... This Mama Bear will just have to stand post.
Ending on a positive note... I am headed to Wally World, attempting to (get paid to shop) Oh how I LOVE to coupon! Pictures to follow ;)

To bring you up to speed!

We tried AND we tried for our baby bear! But boy did we not know what we were in for. We thought the hard part was getting prego? Guess again... After many heart breaking pregnancy complications and a emergency C-sec.

There was the two week NICU Stay:

Life in the NICU...

Wednesday, May 11, 2011 at 12:24pm 

Sorry for the lack of updates! It's been mighty insane over here lately! So they just took Adisyn off oxygen to see how she does. She's still under the "lights" for her jaundice. And is being such a strong girl!! Sounds like AMAZINGLY enough her kidney didn't suffer to much damage after being under all that pressure! And the craziest part yet is her heart seem fine!!! :) for all that has happened the dr says she is speechless to comment on how well ady is doing! She says she can't understand how the heart and kidneys aren't causing her major problems like the ultrasounds had said... But we will take it!! With all that being said... This is by far the roughest time in our little families life!! Saying I am emotional would be the biggest understatement I could make! Leaving ady every night is something I wish no one would even have to hear how horrible is!! The fact that she is not in my belly and not in my arms is awful!!! I have learned to live life on a 3 hour schedule.. Feed and change Adisyn for an hour, pump, sit with ady. Leaving me an hour to sleep eat or do anything else! 

Current-

Here she is! Adisyn Jessica Alvarez... (She got her middle name from her Auntie Jessie And Me)

She is doing so much better then what was expected! And continues to defy ALL odds ;) AND weighs a WHOPPING 14 pounds! So much for being a preemie. She was born at the 5% and is now somewhere in the 80's!  Though  STILL her battle continues... She has a tumor on the inside of her nose that is growing upward! We have been meeting a plastic surgeon every week to monitor growth. SO with ALL that being said please keep our baby bear in your prayers!