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.
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.
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.
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 stint. 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....
at some point, we get this smile.
that night she just... laid there. so tired and weak. heart rate so low.
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.
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".
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.
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.
she wanted "cheese cheese". and she had one, perfect tiny bite.
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.
EJ went home on saturday night. i stayed and gave reesey kisses and love and tried to sleep. tried.
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.
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.
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.
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.