Friday, November 16, 2012

when things change.

we have been living in the hospital for over 2 weeks now. on one hand, it seems like this has been our life for years. as if there was nothing before this. its like i dont remember anything before halloween.


but on the other hand, its gone by so quickly that i feel like my head is spinning. everything happens so fast. go to ER, ct scan, ambulance to children's, ICU, MRI, surgery, more MRIs, more ct scans, blood tests, urine tests, IV fluids and blood, and then we moved to the neuro floor a couple of days ago. 

i read a facebook status the other day and for the first time, i felt mad. someone had said that they had their kids in bed early and they were cuddling on the couch. 

that was my life. 

now its not. and it changed in the blink of an eye. 

i stayed with reese on monday. i got some smiles.

#gingerfight #smiles #reesey #prayersforreesey yayyyyy love seeing her smile with me!!

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EJ stayed on tues and wednesday and then yesterday, i brought A and S up to see reese. i can hardly contain my heart from exploding when i look at these photos. its just what the dr ordered, i bet.

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#gingerfight #prayersforreesey yayy!!! #aidkaid and #sawyergrace visiting #reesey in neuro today #sisterlylove

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but as for the medical things: she is bloated. that could be many different things. she has a low-grade fever. which we thought was from a UTI from the cath (they cultured that and found the right abx for it), but its still there. her HR is very high - like in the 160s while resting. she is slightly agitated - could be gas? her sodiums are high so they are giving her some IV fluid. she is gaining weight that she never had before, but then that could be from the steroids, but who knows. still looking into all of these things. and while i, of course, trust the dr's. and i know they are doing their best on this - i want answers now. right now. i want them to fix it. i want to take her home. 

we are just on our "one step back" right now. we have to answer these questions to move forward. i hate it. i hate hate hate having to do more cultures. i hate knowing that we have to hold her down and sing in her ear so she is distracted from them taking blood, or doing a new cath, or anything else. 

we still have to get a port put in. and that cant be done until she has no infection/fever. then we'll do a round of chemo, likely. then leave. i miss her so much at home. i miss her in the car. i cry when i leave her. my stomach flip flops when EJ calls me from the hospital because i think he is going to tell me bad news. but, like the good man he is, he is just keeping me updated on everything. even the things we don't know. 

i want to sit on the couch with my husband and watch tv after a fun dinner/bath/bed routine. i want to have a dance party in our bedroom to wear them out a bit more. i want aidan and sawyer to drag reese around on a blanket in the kitchen as reese squeals in excitement. i want it to be september again. before reese felt sick. before she was so tired. before she puked and laid around bc of things that were explained by something else. 

i told a friend the other night via chat:

i just... read about other kids
not my own
i figured "oh i bet thats hard"
but then i moved on. and figured "it wouldnt matter bc i wouldnt be able to live. id be so sad. id be so distraught. who knows what would happen!!"
i figured it was "meant" for them
but for sure not me.
and here i am.

God gave me this baby bc He knows we can do it. that we can live our lives giving her DDAVP shots everyday. and take her to weekly chemo. and kiss her big round bald head. 

so that is exactly what we will do. no matter how fast things change - we simply will have to change with them. 



18 comments:

  1. You will have that normal back. I wish I could make it better for you:( Love and hugs to you all<3

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  2. Amanda, this post broke my heart. Hugs to you, my friend. The dance parties and bed snuggles will be back and sweeter than ever before. Hug. Hug. Hug.

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  3. All in good time....I can see it. I can picture it. I think it's closer than it seems. I am praying for that. And maybe dance parties during PT for now? I think you guys should rock out to Call Me Maybe - maybe? ;) You are in my thoughts, Amanda.

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  4. This post ... I just wish you all didn't have to endure this...I hope and pray that your day to dance around with Reesey is soon...

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  5. It will be alright, as long as she has you there, no matter what it's okay. One of my favorite quotes for ya!
    A mother is the truest friend we have, when trials heavy and sudden, fall upon us; when adversity takes the place of prosperity; when friends who rejoice with us in our sunshine desert us; when trouble thickens around us, still will she cling to us, and endeavor by her kind precepts and counsels to dissipate the clouds of darkness, and cause peace to return to our hearts.” Washington Irving
    Stay strong~praying for you!
    Paula

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  6. I wish is was September for you....... I don't know the right words to say, but know that I (and THOUSANDS of others) are thinking, praying, PULLING for you and your family. Stay strong. <3

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  7. I can't put into words how much it hurts to see you going through this. But if there's one thing I know you're strong. Stronger than most. Y'all will get through this. As much as I wish this wasn't your new normal (for now) it makes my heart happy to see how much love and support y'all are receiving. Hugs, love and prayers.

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  8. I loved seeing the pictures of the girls. I loved see the big smiles. Sisters are one of life's greatest gifts. I know when I was in the hospital seeing two sisters always lighted my heart.
    I have been wanting to get this link to you for awhile, but in a way that was appropriate. I don't know how to do that, but I feel I should tell you about this (and maybe you already know). Please check out the website sepsis alliance.org. Sepsis is an infection that EVERYONE should be aware of a know the signs for. I only tell you about because I have been through it and am an advocate for hospitals being more aware of this infection. It is important when things like this happen for me to let others know about it because I didn't...and my life could be different. Please don't take this the wrong way...
    My husband and my daughter Liv and I pray for you daily. Have Faith....

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  9. I loved seeing the pictures of the girls. I loved see the big smiles. Sisters are one of life's greatest gifts. I know when I was in the hospital seeing two sisters always lighted my heart.
    I have been wanting to get this link to you for awhile, but in a way that was appropriate. I don't know how to do that, but I feel I should tell you about this (and maybe you already know). Please check out the website sepsis alliance.org. Sepsis is an infection that EVERYONE should be aware of a know the signs for. I only tell you about because I have been through it and am an advocate for hospitals being more aware of this infection. It is important when things like this happen for me to let others know about it because I didn't...and my life could be different. Please don't take this the wrong way...
    My husband and my daughter Liv and I pray for you daily. Have Faith....

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  10. I loved seeing the pictures of the girls. I loved see the big smiles. Sisters are one of life's greatest gifts. I know when I was in the hospital seeing two sisters always lighted my heart.
    I have been wanting to get this link to you for awhile, but in a way that was appropriate. I don't know how to do that, but I feel I should tell you about this (and maybe you already know). Please check out the website sepsis alliance.org. Sepsis is an infection that EVERYONE should be aware of a know the signs for. I only tell you about because I have been through it and am an advocate for hospitals being more aware of this infection. It is important when things like this happen for me to let others know about it because I didn't...and my life could be different. Please don't take this the wrong way...
    My husband and my daughter Liv and I pray for you daily. Have Faith....

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  11. so you dont know me from adam, but I came across your blogs because I share a love for photography.. so I have been reading these blogs to keep up with your daughters progress. I cry through most of your post but I keep reading so I know what to pray for, for your daughter, you, your family as you confront your adversity. I am a mother who just recently lost my baby at 15 weeks gestation, now while our stories are very different..a mothers pain over her children is a bond that we do share..I pray for you much in this situation...for your strength, your courage and alot of Jesus working over there. As you stated above he is not gonna give you more than you can handle and while sometimes you might wanna roll your eyes at that...he has a plan for your beautiful family and I am here praying that it is his will to see your daughter and your family through this.
    Thank you for sharing your story...oddly enough i think reading your story is helping me cope with the loss of my daughter. I can feel your pain in your writing but your strength is evident in your posts....I hope you can stay strong! (with the occasional mother melt down) God Bless you and your family.

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  12. You are right. You CAN do this. It's ok to be completely distraught, any parent would, but the good parents, parents like you & EJ, pick themselves up and put their kiddos first. They fight with every breath in their body for their babies. It's so unfair for any parent to have to go through this, but while this is an incredibly shitty situation I also think Reese is one of the lucky ones, because she has you guys as parents. You guys to fight for her. Not all kids are that fortunate.

    The pictures of the girls together just melt my heart. The smile on Reese's face just says it all. We've seen you and EJ post smiley Reesey pics on fb, but nothing like that. Her sisters complete her, and I think you are right that they are probably the very best medicine. I hope Reese is home with her entire family, where she begins, very soon! Much love hun.

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  13. You don't know me and I don't know you, but I came across your blog and have been reading about what is going on with your little girl. Just wanted you to know your family is in my thoughts and prayers!

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  14. We have been on the bump together for years. Your A and my H are close in age, Miller and my A are very close too. My heart goes out to you lady, I kiss my children every night and pray for Miss Reese. Her smile is inspirational & and you and EJ & the girls will have a story to be told. Keep your head high, Keep you Faith Strong & Love like Crazy.

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  15. I have been reading your blog for a while- your girls are beautiful and I always love looking at your pictures. It had been a while since I read, so I was knocked over when I saw your post about your little Reese. I actually used to work in pediatric oncology, so the story is familiar, but coming from the perspective of really seeing such a normal, happy family progress from crazy everyday life into the crazy life of a sick child, has been heart wrenching. I want you to know I will pray every day for your sweet Reese and your family.

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  16. I like the other gal here don't know you or you know me, I also take photographs,but I'm so sorry for all that your whole family is going thru,life is not fair sometimes and from a person who knows first hand it's one of the toughest roads you will travel.But god does perform everyday we see it all the time. Reese is strong and it sounds like the doctors there are very good.Trust them but ask any ? you want to understand what is going on.The sister pictures made me smile and she so loves them! It was good for them to see her so they know what is going on also.I sent you a message on email for a favor for me let me know if it's ok.And if I can send it to the postcard PO Box or to the home or hospital.Love from Iowa Patti

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  17. Amanda, I'm not sure if you remember me from your SK days. For one I'd like to apologize for the way things went about in those days. DEfinitely not one of my shining moments.
    A few yrs ago I was looking for a new place to hang out online and actually found you on the Bump and wanted to offer my apologies (and congrats because you were pregnant with your youngest), but never had the courage.
    But when Leilani posted about your Reese on FB my heart went out to you and your family. I've been following your blog and it never fails to bring tears to my eyes. I am so sorry this is all happening and I wanted to just say I am hoping for all the best for your little girl.
    Sending healing thoughts,
    MElissa (mab05, mom to Hadeon,BIDec'06)

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  18. Reese, big girl, you'll be fine, you'll get your health back. I'm thinking about you every day.

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