Monday, November 5, 2012

the worst 5 days of my life.


when i put these photos onto my computer i didnt know what to make the folder as. i kept thinking "do i name it brain tumor? hospital?" and i decided on sick. she is just sick. at the hospital to get better.  friday was the first of getting better. but right now i need to write everything out so this will be long.

you can read a few posts ago that we had been to the ER twice for a UTI. on halloween morning, i didnt have anymore zofran so i didnt give reese her septra. good thing bc she seemed so much better off of it - not as queasy and lethargic so i said no more after that. 9 days was good enough.

we went to downtown mckinney's "scare on the square" that night to watch aidan dance. i changed reese's clothes, strapped her wonder woman tutu on her, tossed her into the stroller and off we went. she was tired. it was obvious. she eventually fell asleep in the stroller as we walked around.

i called EJ on the way home to see if dinner (pizza) was ready and told him to make sure that we got pics of reese in her costume. i said "i want to have pics to prove she was THERE!" with a laugh, thinking that i could snap a few of EJ flying her through the sky like a superhero, on the front yard.

when we got home, i toted A and S out front and took only a couple before EJ asked me to come in. he was worried about reese's eyes. when she was talking, it looked like she was looking "through" us. then her left eye started to float in. she seemed happy - talking to us more upbeat than she had in a while, but i called my mom and asked her if she agreed that we should take her to the ER. which she agreed needed to be done. 3rd ER trip in a little over a week - 5th since this summer.

we put her in a dress, got her her lay-lee (blanket) and bottle and EJ said "lets go to the dr!" and she said "bye bye!!!" so excited to get to ride, again, in EJ's jeep.

i went to edit. i called a friend to chat. i tried to pass the time away... praying that everything was alright. its always alright... a tiny fracture, a concussion, a UTI... things that can be fixed in an instant.

at about 9:15pm, EJ beeps in on my phone conversation. i can hear it in his voice that things are not okay. he tells me that my parents are coming over and that i will get into the car with my dad and go to dallas childrens. they did a CT scan on reese and there was a large mass in her brain. he would go with her by ambulance.

at this point, i cant breathe. i cant feel my fingers. i cant feel my face. i am walking in circles around my house. i dont even know where to start. its almost like i am watching myself do it. i called my friend back and couldnt even function. i spit out the words "reese has a brain tumor" and just watched them tumble out as if this wasnt even real life. i called my mom. steady as ever she said they were on the way. and to find the exact address for childrens if i could. i called brittney. who sent me turn by turn directions and gave me exact orders on things to pack into a target bag while i waited for my parents to come. i can barely remember anything that happened in those 20 mins.

i texted EJ on the way down to ride with her and he said that they were going to strap him on the bed with her. i called ashley to tell her. my face and hands getting number by the minute.

my dad and i rode down in almost silence. only to be broken up with whispers of prayer. over and over and over.

we get the ER and i tell them that my daughter was coming in from another hospital. "oh this is the mom from baylor frisco. what room are they in?" and i sit and wait.

they come in and i just... the entire next hours are a whirlwind. watching the strongest man i know, the man i love more than anyone in this world, my husband, cry. his baby. his best friend. little reesey is hurting. and we cant do anything.

my dad stays with us, although its hard. he is so broken as well. he prays with us as we hold reese tight while she just lays in my arms. we do an IV. we talk to a neurosurgeon - who tells us what we already know:  reese has a brain tumor. and its large.

578501_10100669750142233_1086757084_n

i cry. but i am more in shock. i had said to my mom on the phone before they got to my house that this stuff doesnt happen to your own family. never in a million years do you think it would. but there we were. i just stare into space. not understanding. saying over and over how i dont understand.

sometime between 2-3am we are taken to ICU. when nurses finally leave for a minute, i lose it. i cant contain the tears and i cry harder than i ever have in my life. EJ rubs my back and cries with me and we just are helpless. they tell us that she'll have an MRI in the morning, first thing. and we sleep for maybe 15 mins. likely accidentally, out of pure exhaustion.

the next morning, we hold her and sit with her. waiting to go down to the MRI.
photo-8

the walk to the MRI was full of tears. they tell us it will be long, it will be hours before she comes up. that she'll have a breathing tube. that it will be scary.
photo-5

i tell the nurse that she needs her blankie. wrapped around her. they tell EJ that she'll cry for about 20 seconds and then that she'll be asleep.

we walk out and hear her cry for us. i never thought id be the parents in the hallway, crying, gripping on to each other trying to stay afloat. but we were.

so then we wait. she comes back up. its scarier than i thought it would be - watching her cough with the breathing tube. totally out of it. not being able to take out the breathing tube until they looked to see how much fluid was being blocked and to decide if she needed a shunt. she didn't and they took it out and our names fell from her lips sweeter than they ever had.

but now we have to wait for answers. which come at about 3pm when the neurosurgeon's office calls and says to come down. she shows us the scans. and i just... i gasp. its big and right behind the optic nerves and around the pituitary gland. it then goes around to another side of her head.

there are 3 things dr. price says she wants to accomplish with surgery 1. get a space for the fluid to drain. the tumor had caused hydrocephalus bc fluid had no where to go. we could see the extra large pocket clear as day. 2. get some tumor out for pathology. 3. get a chunk of that tumor out indefinitely.

i sit there wishing i had a tape recorder. everything going through my mind was unnerving, but overall, everything she said was "okay". she said she thought it was, likely, an optic glioma. something she has likely had her entire life. my mind ran with that and "slow growing" skipped through my head. skeptical optimism raged through our veins knowing friday would be the hardest day of our lives.

we had my parents come up and bring the girls. andy, nik, and rylan came up, too. aidan's sweet concerned face....
546977_10100670237091383_1846700162_n

at some point, we get this smile.
photo-4


 that night she just... laid there. so tired and weak. heart rate so low.
2012-11-05_001 2012-11-05_002

Oh #reesey dear God protect this sweet baby tomorrow. #powerofprayer


we washed her hair in prep for surgery. she was none too pleased. we changed her clothes. we just tried to give her as much love as we could possibly exude. and friday morning came too quickly.

2012-11-05_003

we talked to doctors. they told us risks. we signed consent forms. our heads spun in circles around itself trying to actually grasp what was happening. we were told a few things. first of all, after we left her, it would be about 45 mins of getting HER ready... putting her to sleep, head cleaned and hair cut, putting in her central line. the general surgeon would come out and talk to us after the central line is put in to tell us how it went. then dr. price would come in and get herself ready. that can take an hour. organizing her surgical items, the lights, the set up, all prep... THEN they would begin.

it all went as they said. 7:45am we took her downstairs. they gave her a sedative and we kissed her sweet face and said we loved her until they had to go. again, we were in a cold hospital hallway clinging onto each other through tears.

we got a call saying the started. then another an hour later. then when the next hour passed, EJ started to panic -- even though we were told not to worry if an hour had passed without a call - he got up from the ICU waiting room and walked. it was about 1pm. he saw dr. price in the hallway coming to find us and he said all she said was "all done!" and they came to then talk to me.

things went as planned. she was happy and then all we could do was wait to see if things would get "working" on their own -- dr. price put a drain in reese's brain to get rid of the fluid. and that eventually, ideally, she'd be able to drain that on its own in the path the doctor had made. she got a good amount of the tumor out, as well. we were relieved and anxious to see our baby.

she looked better than i thought she would, actually. like a sweet angel sleeping. when she got to the room, she scanned every single person looking over her, prodding her, helping her... then cried out for "daddy".

2012-11-05_004 2012-11-05_005 2012-11-05_006 2012-11-05_008 2012-11-05_007 2012-11-05_009 2012-11-05_010 2012-11-05_011

they sweetly braided 2 parts of her hair back behind the cut.

we waited for the next wave to hit. which was/is diabetes insipidus (DI). since the tumor is so close to her pituitary gland, a lot of other problems arise. one is that she'll pee out. just pee and pee and pee bc her PG is telling her kidneys the wrong information. so we spent all night balancing that. and really, its a guessing game to balance until finally the right output is recorded. she had a bit of a rough night with a slight fever, the DI, she puked... but things settled on saturday.

EJ stayed with her friday night and i went home. a horrible night's sleep, but i wanted to see ASM, i needed to feed miller, i needed my brain to sleep for even just a few hours.

saturday morning, reese had an MRI. i wasnt at the hospital yet and EJ took her down.

523464_10100672817071083_758425152_n

he was told that no news was good news. that if nothing was too pressing of an issue, that we would talk to dr. price on sunday morning. so we continued to pray that we would not see her.

saturday was a good day. she was more alert. sassy. telling nurses exactly how she felt.

2012-11-05_012 2012-11-05_013

she wanted "cheese cheese". and she had one, perfect tiny bite.
2012-11-05_014 2012-11-05_015

a daddy and his sweet girl. the girl who comes down the stairs and says "i tell daddy hi." before she does anything else. who says goodbye at this office door whenever we leave. who almost always requires that he put her in the car only. his reesey.
2012-11-05_016

EJ went home on saturday night. i stayed and gave reesey kisses and love and tried to sleep. tried.
2012-11-05_017

sunday morning, dr. price came in and said the MRI was good. or rather, that it looked good for what it was, im guessing. and that, yes, it was an optic glioma. we still had/have no pathology report, but she did say oncology would be coming to talk to us within the next few days. malignant or benign, oncology will be a part of our lives.

2012-11-05_018 2012-11-05_019 2012-11-05_020

at some point yesterday they took out her IV on the left hand. and then we had to cover her head/drain, but couldnt quickly find a scrub cap. so we improvised.
2012-11-05_021

that didnt last long either ;) reese's attitude was apparent. and awesome. and joy warmed my heart to have my reese-a-roni back - even in the tiniest bit.

i have felt guilt for feeling good about each step. even though i know that its okay to be happy about the small things. i have burst into tears bc of a heart rate dip. i puked for 2 days straight, or rather dry heaved, thinking about what was coming. i barely ate. i felt purely and utterly broken having to leave the hospital to go home, even though i know we each need to be with the other 3 babies and to get sleep. i have been seething angry. i have been exhausted.

but i have been supported in ways that words can't simply even say.

when my friends started the Prayers For Reesey page, i was simply astounded at that. when they set up a donation link, it brought tears to my eyes. when i watched strangers rally around in prayer, i was beyond overwhelmed. there are thousands and THOUSANDS of people praying for reesey. praying for our family and lifting us up to God so that He takes care of us. there are churches in places that i have never heard of, that started their sunday sermon off with hands raised for reese's healing.

God is certainly alive in the people i have encountered in the past few days. i go to bed thinking about the people that say they check on reese before bed. i wake up to the warmest, most loving, God-fearing messages from people who prayed for my sweet girl. and for peace as we endure this trial with our baby.

words cannot describe how i feel. the food and gifts and donations and.... love. pure and simple. its love. i do not know how to adequately thank everyone except to say that i read every message, every post, every emoticon, every bible verse, every text. everything. i cry thinking that this must be reese's purpose right now. God will protect her.


2012-11-05_022

tonight I am home again. EJ and i made a schedule of school/hospital/sleep/etc and hope to be able to have a weight lifted with a little routine. but i miss her when i am not there. i miss EJ. i have only been torn into 2 different places for 5 days and its miserable. but we are lucky. our support system is beyond amazing and one day i will figure out a way to say thank you.

until then, please keep praying for my reesey. we did talk to the endocrinologist today about her pituitary gland and lasting effects. it seems as if we'll have to take it as it comes, but the endo world is filled with amazing medicine that can help with hormones, thyroid, urine output, etc etc... so im going to put that down in the "its okay" file. tonight reese's sodium levels went down, which caused her HR to go down... so they are fixing that. but to not be with her is simply heart breaking.

i am off to go get into my bed with aidan soon - while sawyer and miller sleep in theirs. i am going to post this without re-reading, really. i just needed to get it all off of my chest. i needed a timeline. i will want and need to remember as days fluctuate between better and worse.

hold your babies close tonight. say a small prayer for reesey. we are not out of the woods yet - and we will need your love and prayers. thank you all for every.single.one thus far.

167 comments:

  1. Beautifully written. I cried through the whole thing. I love you, friend.

    ReplyDelete
    Replies
    1. i wish i could just give you a hug. you will be carried through this. continued prayers. xoxo

      Delete
    2. Hugs, Kisses and prayers for your family and your sweet baby girl xoxo

      Delete
    3. I, too, cried. Thinking/praying for your sweet family. God will not burden you with more than you can handle. <3 He has a plan.

      Delete
    4. I love those gorgeous lil red curls, what an amazingly strong , brave sweet baby girl, prayers for you sweet Reesey....her smile is contagious! Get well soon baby girl.

      Delete
    5. A friend of mine linked your blog on her Facebook page. I have a 2 week old who I am just barely beginning to know and love. I can't even imagine what you are going through right now. Thoughts of love and wishes for strength and hope coming your way from Minneapolis.

      Delete
    6. I woke up to find your sweet little Reesey's story in my e-mail. We don't know each other, but my heart and prayers are with you and your precious family. It will be an honor and a priviledge to hold you all tight in prayer! In HIS love, Maureen

      Delete
    7. Sobbing from the beginning feeling your pain as a mom. My family and I will be praying for strength in your family and little reese-a-roni's healing. God will be watching over your baby.

      Delete
    8. Thank you for sharing this...your daughter is so precious. I have been praying for her and will continue to. God is with you all I can feel it. I will give all of my children extra hugs and be thankful that they are all home with me and pray that you will be all together at home soon as well.

      Delete
    9. Wow! So touching! You dont know me but I am a mother as well and my heart is breaking for you and your family, but also rejoicing that Reece is doing better. Praise God! Praying for you in Lexington, Ohio :)

      Delete
    10. i do not know you but am a mother myself. praying for all of you through this time..

      Delete
    11. Praying, crying, and praying some more. Hugs and love for you, the family, and especially little miss Reese.

      Delete
    12. What a beautiful tribute to your little sweetheart!!! Wonderfully written.....I too wish I could give you a hug. My prayers will be with sweet little Reesy and your family and the days ahead will bring her continued improvement. I cried reading your story! God bless your sweet family always. xoxoxox Love and prayers from the White family in Rancho Cucamonga, CA.

      Delete
    13. So touching. We can each imagine this. But we've never been there. Sending Reese all the love in the entire world.

      Delete
  2. This comment has been removed by the author.

    ReplyDelete
  3. Thinking of you from Atlanta, a family of strangers praying for you all.

    ReplyDelete
  4. This comment has been removed by the author.

    ReplyDelete
  5. Thinking of you guys. Thank you for sharing your story with all of us <3

    ReplyDelete
  6. I will hold Reese and your entire family in my prayers! May God continue to protect her and keep her safe.

    ReplyDelete
  7. This brought tears to my eyes, Amanda. I can not imagine what you have been through as a mother this past week. Know that we haven't stopped praying, that my girls ask about and pray for Reese every morning, that Hannah constantly tells me that Jesus is healing her and taking care of her. I can't hug you, but I can and will wrap you with prayer, praying that His peace that surpasses all understanding embraces you and EJ an sweet Reese. He has such a purpose for your little girl, and nothing can derail that. I speak to that tumor and tell it it has no place in Reese, that it has to go in Jesus' name. I speak to the surrounding tissue and say to LINE UP with the word of God and function as you were designed to function. I speak to her pituitary gland and call it healed and restored in the name of Jesus. There is POWER in that name and I believe that He is able and IS healing Reese.

    We are believing for a complete healing for Reese and for a mighty testimony to come of this!

    ReplyDelete
  8. Beautiful. Hugs to you and your family<3

    ReplyDelete
  9. Your writing is fabulous. Happy you got your words down. Still praying!

    ReplyDelete
  10. I am without words. You are amazing. Praying for you, sweet friend. We are all rooting for Reesey! <3

    ReplyDelete
  11. Thank you for your strength during all of this. This was absolutely heartbreaking to read...every word and every picture. Reesey is amazing and has touched so many lives by your willingness to share your story. One of the hardest things we endure as parents has got to be seeing our children wade through trials that we, and they, don't understand and feeling completely helpless- except for under the watchful power of God and His Son. Your family will make it through this and will be so much stronger for it on the other side. Thank you.

    ReplyDelete
  12. so beautifully written. raw and real, and full of love.....drying my tears now. prayers continue from Towson (baltimore) MD. xoxoxo.

    ReplyDelete
  13. bawling my eyes out over here in Michigan. you and EJ are amazing and so strong; that is exactly what Reese needs to see. she knows she is loved and she knows she is not alone in the hospital. I think about her every morning and night and say a prayer for Reese' healing and peace to be brought to your entire family. I won't stop praying. Remember that God is the great physician. I have faith that you will receive good news soon, and until then, hugs to all of you.
    Staceymp from SK BID06. <3

    ReplyDelete
  14. Amanda I can't imagine what this is like for you but you, EJ, your girls, your beautiful, courageous, amazing girls and of course Reese are all in my prayers tonight. And tomorrow. And tomorrow's tomorrow and every tomorrow thereafter. <3

    ReplyDelete
  15. Not sure where my comment went :) But I want you to know that you are on my mind and in my heart all the time.

    ReplyDelete
  16. In tears and holding you up in prayer friend. xoxo

    ReplyDelete
  17. Sobbing. Wow. You are the most incredibly strong woman, ever.

    ReplyDelete
  18. Praying so hard for sweet Reesey and for your family.

    ReplyDelete
  19. Beautiful. <3

    I've been thinking of you all since I heard.

    -Nichole (Punk*Mommy from The Nest)

    ReplyDelete
  20. A grandma you'll never know, in Barnhart, MO, is praying for your precious girl at this very moment. God hears. God heals.

    ReplyDelete
    Replies
    1. As is this Mom of 3 girls in Richland, WA. I was in ICU once with my 2nd daughter when she fought a deep, swiftly spreading skin infection on her face as an infant, something that resembled Chickenpox and eventually resolved after 3 trips to and from the hospital. I feel for you and you will get through this. I like to think of ICU as what you see in a text for "I See You"... where people can truly see God alive in loved ones all around them. I'd hug you if I could. It's rare that a stranger's story brings tears to my eyes as this one did. Hang in there my friend. You are loved, blessed, and healing is already happening- believe it, act on it; receive it and you'll see it.

      Delete
  21. As a mother that has received terrible news about one her children, I can relate so much to this post. The numbness, the anger, the feeling of being helpless to "save" your child. Reese is strong, a fighter, and so are you. Many prayers for healing and comfort coming your way.

    ReplyDelete
  22. Still praying for Reesey, along with the congregation of Pleasant Valley UMC. God WILL protect her.

    ReplyDelete
  23. In tears for you right now. Following your blog and watching your girls grow, we all feel like we know little Reese. Multiple times a day I stop and pray for Reese and then check the Facebook page for updates. Our family won't stop praying. God Bless

    ReplyDelete
  24. Beautifully written Amanda. I am praying hard for you and your little Ginger Reese....

    ReplyDelete
  25. i am broken, just broken. no words! big hugs and prayers! xoxo

    ReplyDelete
  26. Wow, you guys are so strong. It was utterly impossible to read without tears. I can't imagine how difficult the past five days have been for you. We will continue to pray for Reese <3

    ReplyDelete
  27. I'm sobbing right now.

    God bless Reese and the rest of your family.

    Nahum 1:7 “The LORD is good, a strong hold in the day of trouble; and he knoweth them that trust in him. ”

    ReplyDelete
  28. *tears* Beautiful written mama! All my love and prayers! xoxo

    ReplyDelete
  29. Praying for sweet Reese's fast recovery- be strong, but remember to take time for yourself and your emotions as well.

    ReplyDelete
  30. praying for you all. Pippa x

    ReplyDelete
  31. Stay strong, shes beautiful. As a mom of 4 young children myself, I cant imagine what your all going though. I pray everything goes ok

    ReplyDelete
  32. I am holding my babies close tonight while praying for yours and your family. Reese will be a part of my daily prayers. Stay strong mama!

    ReplyDelete
  33. Praying for you, your hubby, your children, the amazing doctors whose hands are guided by the Lord.
    Hugs and prayers
    From a California BU Alum (and friends of Brittany)
    Jennifer Kennedy

    ReplyDelete
  34. I don't know you, but I want to give you a hug. I simply cannot imagine what you are going through, but want you to know that I will be praying for your precious daughter, and for strength for you, your husband and your children.

    ReplyDelete
  35. Thinking and praying for your baby Reese xx - Australia

    ReplyDelete
  36. Praying for Reese and your whole family from Florida

    ReplyDelete
  37. Sending positive vibes, love, and light to Reesey. Stay strong.

    ReplyDelete
  38. Love and prayers from California. Stay strong and know that so many are praying for your beautiful family.

    ReplyDelete
  39. Sweet, sweet Amanda... I cried, I laughed, I sobbed uncontrollably throughout this post. My mind cannot fathom what you and EJ are going through, but, still, I feel your pain, your longing, your despair, your love. You have an incredible journey ahead of you. I do not know what that is at the moment - honestly, no one does - except for our loving, never failing God. He will provide for y'all in ways that only y'all will know and understand. Reese and y'all have a mission - set out from God - that y'all are now on. It will be an interesting one at that... But a fantastic one! I'm so glad you have taken the time to chronicle this, b/c when Reese is 18, 25, 35, 42 (etc), she will be thankful that you wrote this (and photographed this) journey upon which she's (and y'all) have embarked. What a testimony she (and y'all) will have and what a way to share it with words and pics! She and y'all be able to show the world what love abounds and how incredible our God is! We are continuing to say prayers for Reesey and y'all daily (just about every other second - when I drive, when I'm not talking to the kids, when I'm doing just about anything)! PLEASE, PLEASE, PLEASE let me know if you need anything and I will help! My love to y'all!

    Kellen

    ReplyDelete
  40. I am friends with Sarah Carroll and have been praying for you since she posted about your sweet girl's surgery. I am so sorry! I will continue to keep Reese, you, and your entire family in my prayers.

    "Ah, Sovereign Lord, You have made the heavens and the earth by Your great power and outstretched arm. Nothing is too hard for You." Jeremiah 32:17

    "And my God will meet all your needs according to the riches of His glory in Christ Jesus." Philippians 4:19

    ReplyDelete
  41. We are strangers but you are in my thoughts and prayers. Thank you for sharing your story, I cried and cried for your family. As a mother, I cannot even imagine what you are going through. You sound like an incredibly strong woman, stronger than I. Sending you love from South Carolina.

    ReplyDelete
  42. Much love & prayers...this was heartbreaking to read but it is amazing to see how strong you and your family are and will become through this. Stay strong! God has a plan.

    ReplyDelete
  43. Amanda theirs no doubt in my mind that Reese as strong as she is she will come out of this like a trooper. You are all in my prayers. Miss my babies at the gym. Lots of love Janet

    ReplyDelete
  44. I read this and cried. I don't know you, I don't know your daughter but I have an almost 3 year old boy. I can't imagine and my heart breaks for you. You and your family will be in our prayers.

    ReplyDelete
  45. Sending love and prayers to Reesey. Keep strong baby girl, and god will see you through this.

    ReplyDelete
  46. Goodnight, Amanda. My prayers for you tonight are for some beautiful rest! A heart wrenching post...thank you for sharing it with us. I hope that Reese, as she continues to thrive and grow, will always be a reminder for you (and all of us) that if we place our trust in HIM that he promises us that...

    Isaiah 43:2
    2 When you pass through the waters,
    I will be with you;
    and when you pass through the rivers,
    they will not sweep over you.
    When you walk through the fire,
    you will not be burned;
    the flames will not set you ablaze.

    ReplyDelete
  47. What a testimony of love, just think if all children had this love....that is what I was thinking of as I cried while reading Reesey's love story. I am a friend of a Michelle and Darrin, you all have my love, prayers and hugs. I will also help to get her love story out. May our Lord and Saviour hold you all closely, taking away your fears and filling it with promises of hope. His love surpasses all understanding, that is pretty amazing stuff! Love to all, Jodi Beine, Northwood ND.

    ReplyDelete
  48. What a testimony of love, just think if all children had this love....that is what I was thinking of as I cried while reading Reesey's love story. I am a friend of a Michelle and Darrin, you all have my love, prayers and hugs. I will also help to get her love story out. May our Lord and Saviour hold you all closely, taking away your fears and filling it with promises of hope. His love surpasses all understanding, that is pretty amazing stuff! Love to all, Jodi Beine, Northwood ND.

    ReplyDelete
  49. Thanks for keeping us posted. I have been thanking God in advance for Reese's healing and full restoration of health. By His stripes, she is healed!

    ReplyDelete
  50. I will pray for you all!!!! From Alabama

    ReplyDelete
  51. Praying for you and your family. Stay strong and believe that He will watch over your little one.

    ReplyDelete
  52. God be with you all.

    ReplyDelete
  53. This was beautifully written. when I saw the pictures of her toes that's when I lost it. Those precious baby toes. My heart breaks for you and your precious angel. strangers in colorado praying for your family tonight.

    ReplyDelete
  54. My prayers are with you guys. I pray God continues to heal Reese, for strength for you and EJ and for wisdom for the doctors that are treating her.

    ReplyDelete
  55. Amanda you do not know me but I feel I know you. I am Brittney's sister-in-law. Praying hard for your beautiful girl and for your family.

    ReplyDelete
  56. My heart breaks for you. I will be praying for y'all!!!!!

    ReplyDelete
  57. Sitting here crying, praying for Reese and thinking of you're family.

    ReplyDelete
  58. Prayers to you and your family now...God is there, he is there through all those that surround you with his light. Look at Reesey...he's there through her.
    Stay strong mommy, she.will.make.it.
    <3:)

    ReplyDelete
  59. Your sweet baby being held tight in God's healing hands. So much love surrounding her ... Prayers are being answered.

    ReplyDelete
  60. Sending prayers,hugs and positive thoughts for your family and your sweet Ressey. This is very emotional for me. I went through something very similar 7 years ago. Suddenly on Halloween my son, Andrew got sick. A week later he started having seizures and had fliud on his brain. We were sent to Children's Hospital and a few days later he passed away. He was 10 years old. I will PRAY everyday that your precious baby will improve daily and live a long healthy life.

    ReplyDelete
  61. I cried my eyes out while reading this. You are such a strong mother and wife. Reese must get her strength from you. She is lucky to have such great parents who love her so much!! My prayers are with you, Reese, and your family. -stranger in Alabama :)

    ReplyDelete
  62. You, your family and your little Reesey are in my prayers. I will hold my babies.

    ReplyDelete
  63. BB here. Thinking of Reese every single day. And I think positive positive positive. She is strong, you guys are strong, and she will make it through this. I know how hard it is to hand your baby over to an OR and wait. But you made it through that and if you get through that, you got this.

    ReplyDelete
  64. Sending prayers for your Baby girl reese! She reminds me of my little red haired Baby girl & reading your story and looking at your photos my heart breaks for you. Stay strong mommy & daddy I have faith the lord will be with you all!!

    ReplyDelete
  65. I read this out loud to my husband. We are both fighting tears and trying to breathe. Reese and your family are in our constant prayers and you will see just how good God is, I know it!!! Keep being optimistic and happy for the little things, you are truly an inspiration <3 Xoxo from a friend in CA!

    ReplyDelete
  66. Prayers for Reese and your entire family from Nashville, TN.

    ReplyDelete
  67. Praying for your sweet baby, and her impossibly strong family. <3

    ReplyDelete
  68. So many prayers being sent to sweet Reese from Texas. I can't imagine the fear you must be feeling. I am praying for healing over Reese, and peace over the rest of your family.

    ReplyDelete
  69. I know we've had our differences in the past, but I think about you all often. I am epathetic to you, I've gone through similar things with my youngest son is almost 2 years old. Please let me know if there's anything I can do...even from Florida. Maybe an ear to lend? The MRI's and surgeries are always the hardest on me. I'm praying for your family and thinking about you through this very difficult time. Get well little girl!

    ReplyDelete
  70. No parent should ever have to go through this horrific ordeal, but sadly they do. Praying for Reese and your family, may God's healing hand continue to touch this sweet child.

    ReplyDelete
  71. Tears. I know this post must have been hard to write. There are not many moments that go by without your family in them. I'm any constantly thinking about Reesey and sending good thoughts y'alls way. Sending love and prayers.

    ReplyDelete
  72. My heart is breaking for you and your family right now. This is more than any family should have to go through. I pray for your amazing little girl that she makes a full and speedy recovery. Tanya, Australia

    ReplyDelete
  73. Your blog post was shared on facebook and I don't even know where to begin. My heart goes out to you and Reese. I will pray for your family and your sweet baby girl. Stay strong.

    ReplyDelete
  74. This was so beautifully written. I sobbed and sobbed through it all. No one should ever have to go through any of this. I will continually lift Reese, you, and your whole family up in prayer. Keep strong.

    ReplyDelete
  75. I couldn't imagine what you and your family are going threw sending you love and prayers from Texas <3

    ReplyDelete
  76. Very beautifully put. My sister had twins in 2006 and they had so many health problems that seemed to come out of nowhere. The doctors told my sister and her husband to take Ellie off life support a few weeks after birth, and said Jack wouldn't make it a year. They both turned six at the end of this past August and are the absolute joys of our lives. God is good and will hold Reese close to Him in His healing hands. Know that even when you can't be with her, He is. I will be praying for your family and sweet little Reese.
    Kat Parker

    ReplyDelete
  77. I don't know you but my deepest sympathies and condolences to you. I am 9 months pregnant and can't imagine how challenging this time has been for you. Your strength is inspiring. I will pray for your Reesey.

    ReplyDelete
  78. Thank you for sharing this heart wrenching and touching journey. So much courage, hope, and love. You have a beautiful, sweet little girl with a strong spirit. I am praying for all of you and an extra special prayer for Reesey. God bless!

    ReplyDelete
  79. Praying for sweet Reesey! I am friends with Randi Showers who posted this link on facebook! My eyes are filled with tears! Praying for your beautiful family!

    ReplyDelete
  80. Praying for sweet Reesey! I am friends with Randi Showers who posted this link on facebook! My eyes are filled with tears! Praying for your beautiful family!

    ReplyDelete
  81. You will be in my thoughts and prayers sweet Reesey and family.

    ReplyDelete
  82. I'm a stranger to you, but also a mom so my heart broke reading this and I sobbed... but one thing I know is this: OUR GOD IS ABLE. Tonight, here in Sydney, when I hold my 3 yr old and 5 yr old and thank Jesus for them, I'll be praying for Reece to be healed and for peace to be filling your heart.

    ReplyDelete
  83. From one mom to another...sending Reese and your family love and prayers. May God's tender love and mercies encircle you all during every moment of your journey.

    ReplyDelete
  84. God bless your family... Your post had my heart in a lump and tears in my eyes. Hugging my babies tighter. I can't imagine the pain you are feeling. Praying in south texas.

    ReplyDelete
  85. I don't know you or Reesey, but my heart aches for you. Lots of prayers that you all walk away from this stronger than you ever were. Love and light.

    ReplyDelete
  86. Praying for Reese and your entire beautiful family from Toronto, Ontario.

    ReplyDelete
  87. I live in McKinney (we just moved here a couple of months ago) and although you obviously have MANY friends around, I wanted to share my own support and friendship. I was downtown on Halloween, too, and...you all have touched my heart. Please know that even strangers are praying and if there is ANY way I can help please let me know. sarah dot barros1@gmail

    ReplyDelete
  88. Sitting here reading this with tears rolling down my face.
    With being a mum myself my heart & prayers go out to you all..
    Sending many cyber huggs to Reese .. God Bless.

    ReplyDelete
  89. May you feel Gods hand on you and your baby girl. My prayers are with you all. God bless.

    ReplyDelete
  90. May you feel Gods hand on you and your beautiful baby girl. I am praying. God bless.

    ReplyDelete
  91. Our thoughts and prayers are with your family and Reesey..

    ReplyDelete
  92. Isaiah 41:13 For I am the Lord, your God, who takes hold of your right hand and says to you, Do not fear; I will help you.
    Praying for you.

    ReplyDelete
  93. Praying for you Amanda and your sweet Reesey. That was so beautifully written and I was in tears through reading it all. I am so sorry you've had to go through this and can't imagine how hard it has been. May God continue to watch over your family and heal her.

    ReplyDelete
  94. Little ginger Wonder Woman indeed. Sending all the Skeltes my love, and thoughts and prayers.

    ReplyDelete
  95. I've read your blog for about 4 years. You don't know me...but I feel as if I know you through your words and pictures over the years. I am praying for Reese every single day and think about her often. May God lift you up and heal little Reesey.

    ReplyDelete
  96. Tears. So many tears for your family and Reesey. I continue to think of you all and lift you up in prayer several times a day. I pray that you will be surrounded by people that will carry you through these dark days when you have no strength to do anything but survive. I pray that God will wrap his hands gently around Reese and heal her body. I pray that your family of six will be together again under one roof very, very soon. Much love to you all.

    ReplyDelete
  97. Much love, peace and prayers to you, your family and little miss Reese. This is heartbreaking to see these pictures and to hear your struggles and pain, but beautiful to know you are receiving all the love, support, and prayers needed. You, Reese and your family will be in my (as well as my family's) prayers as well.

    ReplyDelete
  98. Sending many prayers for Reesey, you, your hubby, siblings and family! I read about this in my mommy group for our babies born in Dec 2006. I have prayed for you all! The Lord is going to bring you all through this!

    ReplyDelete
  99. I find it's interesting that your pictures reflect your feelings very clearly.
    First few photos show you were so miserable, upset, panicked, and latest ones show you are getting your real self back.
    Anyway I'm glad you are way stronger than I thought. Way to go, mother of the Four!

    ReplyDelete
  100. Prayers coming from Nebraska.

    ReplyDelete
  101. All my thoughts are with you and Reesey. Sweet, precious love.

    ReplyDelete
  102. Our positive thoughts and prayers continue to be with you all. Please keep us informed on her progress, and know how loved you all are.

    ReplyDelete
  103. I have no words, Amanda. You are a wonderful mom ej a wonderful dad!!! I am so proud of all that you have done for your sweet and precious family!!
    My heart continues to ache with you. I am constantly "checking on you and Reese" and of course praying for miracles! You are right when you say that this is Gods plan for her! I pray that one day she will be able to share her mighty story with many and also bring others to believe in Jesus Christ! I am thankful to have you as a friend- thank you for showing all of us what true unconditional love is. Thank you for reminding us that our days are numbered and that life is precious. Thank you for reminding us to hold our babies a little closer. You are wonderfully strong through the pain and I admire you for your trust in the lord during this very difficult time.
    Continuing to lift up your family and especially miss Reese! We love y'all more than you know and pray the mighty healer (God) will completely heal and restore your sweet baby's life!!! Much love!!!

    ReplyDelete
  104. This brought tears to my eyes as a dad with two young children I could only imagine what you're going through. I don't know you or your daughter but my thoughts are with you all.

    ReplyDelete
  105. Sweet Reese and you all our in our prayers! Love, The Vallejos

    ReplyDelete
  106. So glad that God's hands are big enough for everything, including this. Love and prayers from Louisiana!

    ReplyDelete
  107. I do not kow your family but, I cried from beginning to end and all I can say is your a very strong person and you and your family will get through this. I say a prayer god gives you strength.

    ReplyDelete
  108. Thanks for sharing. I don't know you guys either,.but I cried through ur whole post. I pray for your family and.for all the other families that go through this.

    ReplyDelete
  109. praying for you all..i do not know you but am a mother myself and cant imagine what you are going through..my heart hurts for you all..

    ReplyDelete
  110. Many thoughts and prayers for you an your family.

    ReplyDelete
  111. Many thoughts and prayers for you and your family. She's such a strong and beautiful little girl.

    ReplyDelete
  112. Thinking and praying for all of you, Amanda. When I think of strong mamas, I think of you. Hang in there.

    ReplyDelete
  113. Continued prayers for beautiful little Reesey! and for you and your husband- for strength and hope in your hearts. (((HUGS)))

    ReplyDelete
  114. My thoughts and prayers are with Reese and your entire family.

    ReplyDelete
  115. My thoughts and prayers are with Reese and your entire family.

    ReplyDelete
  116. My babies and I lay down every night and pray for your sweet girl and your family. God will get all of you through this.

    ReplyDelete
  117. Found your blog through Casey Wiegand's blog. I'm raising little Reese up in prayer and praying for her absolute healing.

    ReplyDelete
  118. I'm so sorry to hear of your sweet girl going through this. We used to be on The Bump together. I was shakespearenluv and I think I was pregnant or near pregnant around the same time.

    Prayers go out to you from the bottom of my heart. I can't imagine what you're going through and my heart just aches to make it better.

    (((hugs)))

    ReplyDelete
  119. Prayers for all of you, and especially for healing for Reesey, from a former Bumpie. My heart aches for all of you.

    ReplyDelete
  120. Sending prayers with lots of love, hope & faith in our Lord Jesus' Christ.

    ReplyDelete
  121. Your story was shared on my FB page and it caught my eye because I too have my own little Reesey. I can't even begin to put myself in your shoes but please know that I will be praying hard for your Reesey God Bless you!!

    ReplyDelete
  122. Looking at Reese breaks my heart and seeing the love and concern EJ has for his daughter makes it swell. I am praying every day, multiple times a day that Reese gets through this soon. She is such a strong, brave little girl. Many prayers, thoughts, and love to you and your family.

    ReplyDelete
  123. Sending hugs, lots of love, and prayers to you all.

    ReplyDelete
  124. Your family will be in my prayers.love to the baby girl.God bless her.

    ReplyDelete
  125. Your family is in my prayers. Especially miss Reese, I too have a Reese and about three months ago we almost lost her due to a neighbor hitting her. She had to be airlifted to a children's hospital and had to be put on a ventilator. NOTHING in comparison to what your princess is going through. Many, many,many prayers going out to you.

    ReplyDelete
  126. I'm speechless as to what to comment, but I want to say something. Your post was deeply touching and had me tearing up through the entire thing. I'll be sending love and healing to Reese, you, and your whole family. Stay strong, stay positive, there are so many people praying for her and sending her love, she'll be home before you know it

    ReplyDelete
  127. I'm the mom of a 41 year old son who was taken ill when in high school. There were several days that were "touch and go". The illness was never diagnosed, but eventually, the trial and error drugs did their work and he healed. God is good. Friends are wonderful. Prayers are answered. God's to your family.

    ReplyDelete
  128. Amanda, I have followed you since you first started your blog and reading this post made my heart break and of course cry and cry and cry. I feel in a way I know your family and have watched them grow. From what you have wrote about her, Reese is a spunky little girl and has a strong spirit. You have a beautiful family and are in my prayers. You have let the world in to know your family and you have touched SOOOO many people. Know that you are not alone! Jessica from WI

    ReplyDelete
  129. I just read this tonight while rocking my precious baby girl to sleep. Praying for healing and peace for Reese and your family. I don't know of anything to say at a time like this that would be of any comfort, but know that God is our "very present help" in trouble, and that His strength is made perfect in our weakness. And know that a fellow momma is praying for you in New York tonight.

    ReplyDelete
  130. Prayers from Kansas City.

    ReplyDelete
  131. Praying for your daughter and your whole family right now here in San Antonio. Thank you for sharing so we can seek God with you during this time! -- Colleen Crabtree

    ReplyDelete
  132. Prayers for sweet Reese and your beautiful family. Reese obviously gets her spunk and strong fighter spirit from her Mom :)

    ReplyDelete
  133. Amanda,

    I don't know you at all, and just randomly saw a post about saying prayers for your Sweet Reesey and found your blog. I am praying right now for your family. We were just in Children's ICU with my daughter (we got out on Tuesday, Oct. 30th)-- in fact, we may have been in the exact same room where you are right now. We had wonderful care there and wonderful ICU doctors and nurses. I know how scared you are; I know how hard it is to see your baby hooked up to machines and breathing tubes and watch every dip of the blood pressure and heartrate machine, and I am just so sorry. My heart hurts, hurts, HURTS for you right now. Please know that you are prayed over, and know that you are in good hands, both your wonderful team of doctors and a good God. And know that there are other moms out there who feel your pain, who understand what it is like to know the ins and outs of ICU, and not wanting to even eat a meal because it means having to leave your baby girl. I know you are surrounded by family and friends right now, but just know that you are being prayed for by a whole slew of people who don't know you, and if you are in Room 252, it is a well-prayed over room :).

    ReplyDelete
  134. I've checked in on your blog for the past 3 years after seeing you on the bump. I love the way you capture your girls. I will definitely keep your family and especially Reese in my thoughts and prayers!

    ReplyDelete
  135. Prayers to you and your family. I follow your blog, you have amazing family! Our son was born 11 weeks premature...there are so many entries I made without reading them. Your entry is just the beginning...you will see how far your Reese will come.

    ReplyDelete
  136. Sending prayers for Reese and your family. I can't imagine what you guys are going though. You have a lot of people out there praying for you. Stay strong.

    ReplyDelete
  137. I've been checking in on your blog since Casey Wiegand posted about Reese.

    I cried as I read your words and felt a glimpse of the pain you are in. I cannot begin to imagine what this would do to a mama's heart (or a papa's, or a sister's).

    Please know that you are in my prayers - we serve a mighty God, a God of peace, Who can be your source of strength throughout this ordeal. Only He knows the end from the beginning, and He will see you through.

    Many prayers and much love to your sweet family.

    ReplyDelete
  138. I'm just in tears for you. Praying hard. Thank you for sharing.

    ReplyDelete
  139. been following your blog for a long time - you remind me of me. have already said a few prayers for your family since i read this, and there will be many more. wishing you and those beautiful ginger babies good news from here on out. be strong for your girls and easy on yourself when you need to have a moment....

    ReplyDelete
  140. The Fluitt family in Richardson Tx is holding your family up in prayer.

    ReplyDelete
  141. My heart aches for you. Prayers from Massachusetts. <3

    ReplyDelete
  142. I will pray for you beautiful little angel and your family, please stay strong and stay positive. My heart is bleeding from one mother to another. Please God, be good to this family!

    ReplyDelete
  143. your family has touched my heart, I am sending Reesey and your family prayers. You are loving & strong, your strength will bring Reesey strength, your love will give her peace and I pray this little girl gets well quickly.

    ReplyDelete
  144. Praying in Arkansas. Prayers are shooting up from the earth to the Heavenly Father. I pray that God will make you feel His loving presence, that He will heal Reesey, and that he will bless and direct each person caring for her in the hospital. That He will calm you & families hearts.

    ReplyDelete
  145. Keeping you and your family in my thoughts.

    ReplyDelete
  146. I cannot imagine what your family is going through. My heart breaks reading this and I will do what you asked. I will hug my son tonight and pray for Reese and your family. May God give you the strength to continue on. May Reese overcome this and may you all be at peace soon. Good bless!

    ReplyDelete
  147. I just read your post from an acquaintance on facebook. Please know you, Reese and your entire family are in my heart and in my prayers!!!!!!!

    ReplyDelete
  148. Reese,unfortunately I dont know you because you look like the sweetest little girl, full of personality and smiles to give. Know that my family and I are praying for you far away in sao paulo brazil. Keep strong little girl :-) you are going to plow through this with that azing resiliance you kids have. May your guarding angel be with you al the time, especially those moments when mommy and daddy cant!

    ReplyDelete
  149. No family or a little angel should go through this. Remember the Lord is in control. Your family and precious Reese will be in our prayers!!

    ReplyDelete
  150. Your baby and family are in my prayers. Hugs and hope to you all <3 :-)

    ReplyDelete
  151. ow my God, I cried very much and I am praying for you all. My heart aches when I saw this photos.I hope you have strength and faith and everything will be fine!!!!

    ReplyDelete