Wednesday, February 27, 2013
Tuesday, February 26, 2013
Monday, February 25, 2013
Sunday, February 24, 2013
Saturday, February 23, 2013
So to start this school year, I got to bring one of my best friends to work with me everyday. We've had the best conversations in our long car rides. Noah has met some great friends and is learning so much. What a good plan God had. I just renewed my license a week before Ellie started getting sick, and filled out my FMLA paperwork for baby #3 the day before Ellie was admitted to the hospital. A few days after being admitted, I was informed that people were donating sick days to be, which means we aren't going to go completely broke in the next 12 weeks. Now when I think back to that day in the car, where God said wait, I'm so thankful I listened. I don't know how things would be different if I hadn't listened, but I feel like our situation is a true testimony to listening to God and waiting for His plan to unfold.
So here I sit waiting again, waiting for the hospital to call us, waiting to find out how our lives will change. But I keep reminding myself...just do today.
While we wait, we are being blessed daily. Food has shown up at my house every day for us. Cards come daily for us and both the kids (thank you all for thinking of Noah too). Offers to help us out, come multiple times a day. Emails, texts, and facebook messages are constant...there are a ton, so please don't be offended if we don't respond right away...I'm trying to set aside time to answer these each day. Two separate donation accounts have been set up for us, and I am overwhelmed with the amount of people who are giving to my family. For someone who has a very hard time asking for help, this is a huge blessing.
We cannot thank you all enough. I cannot praise God enough for all of you.
And we know that in all things God works for the good of those who love him, who have been called according to his purpose. Romans 8:28
Thursday, February 21, 2013
So do not fear, for I am with you; do not be dismayed, for I am your God. I will strengthen you and help you; I will uphold you in my righteous right hand. Isaiah 41:10
Tuesday, February 19, 2013
Sunday, February 17, 2013
Saturday, February 16, 2013
Good Morning!! And its so good because Mommy got a full night of sleep!!! First one since Monday! Richard was so sweet to not bother me when me and baby no name took over the whole bed. Speaking of baby no name, our wonderful friends here in PICU are working on naming her. The fantastic nurse practitioner for our lovely neurosurgeon friend has named her Sarah...with an H. Then our favorite God loving, dancing, Dr McStuffins watching nurse has added in - Rose...has to have the hyphen. And we can't leave out Dr. Jane, he is after all working inside my child's head! So for now her name is "Sarah with an H hyphen Rose Jane Blaine" ...she shouldn't have a problem writing that in school, right?? I mean if Noah can can handle his big old name...
Oh and speaking of sweet Noah, we got to see him!!! Oh how I've missed him. But I take such comfort in knowing I have the most amazing friends and family. My mother has pretty much began living out of a suitcase, switching between taking care of Noah and taking care of my sister....who didn't want Ellie to feel alone, so she took her own trip to the ER. Say a prayer for het too! My sweet friend Lynda, has gone above and beyond watching my boy, bringing him to school (good thing she works there), helping him make his Valentine's, feeding him, and even letting him sleep in her bed when he couldn't sleep. With all that we have going on right now, I'm so thankful I don't have to worry about Noah.
So I finally left the hospital yesterday, I needed a bath, no one told me I stunk...but who would tell a 33 week prego woman that?? Another fabulous piece of this crazy puzzle is my sister lives 5 mins away, so the shower was welcomed!! After my cleansing my mom took me to pick up Noah. Of course he was really excited to see....my mom, I know where I rank. We made a Target pit stop (haven't been there in over a week, I was having withdraws) plus I needed some pink gear, and about 10 other things, that I never got. Noah found his gift for Ellie...an annoyingly huge Hello Kitty, but it was 50% off so its all good! Funny how something I love as much as Target shopping has lost all appeal, I just wanted to get back to the hospital. I even passed up Starbucks to hurry things along!
When I had left yesterday morning Ellie wasn't really talking or moving, just laying there. I was trying not to worry, the kid after all just had her second brain surgery in two days. No sooner then I got to my sister's house did I get a phone call from Richard with Ellie giggling in the back ground and playing. Ellie also got to walk some with her OT and PT friends, then she got a pretty cool chair to sit up in. Speech came too and helped her eat some and taught Richard what to do.
When we finally got to the hospital Noah was bouncing off the walls, luckily the lady downstairs told him he could stay with her if he wasn't good! He straightened up a little! I had tried to prep him with the idea that Ellie had lots of tubes and wires, but wasn't quite sure how he'd react. He hugged his sister and she didn't yell! Then the fabulous nurse Ms Jen (hyphen Rose) helped us show Noah a picture of Ellie's tumor and explained how super hero Dr. Jane and superhero God squished it to make it small. He asked a few questions, then went in the hall to dance with Ms Jen.
After her meds and a quick rest, Noah got to sit in bed with her and play. He showed her all the get well cards his class made and read her a book, she listened intently. It was so nice to have my family all back in the same room, even if its a hospital room. Makes you think back to those moments where they are fighting and hitting one another and driving you crazy, what I would give for another day like that. Another day of yelling "walk in the house" or "Ellie don't hit your brother". Another day of dancing in the kitchen. I know its not my plan and I truely believe it will happen again, I'm just getting anxious.
Ellie had a lot of fluid/pressure in her head. She is having trouble with her right side, although last night I happily watched her get het "boogers" with het right arm. She has a hard time sitting up by herself, but we're getting there. The best moment everyday is hearing "Mommy, it be okay". And I truely believe she knows that!
Thank you all again for your continued love and prayers. Once I get my hands on a real computer I can't wait to share all the pink pictures we've gotten, including an entire wrestling team with pink bows.
We have another busy day of therapists and rumor of getting off the PICU today (a little nervous about that, I love these people in here, plus Richard still has to get Ms. Jen back...they have a little battle going on).
I pray that all of you know just how much you are touching our lives. Richard and I praise God for you every day and you are all in our prayers!
Friday, February 15, 2013
I'm happily watching cartoons even.though no one else is up...but that is a beautiful thing! Ellie had a great night sleep after she finally got settled in from her surgery. She is still pretty groggy but resting. She made it through beautifuly, everything went as planned and the Dr was able to remove some of the tumor. Now we wait...getting pretty good at that. Biopsy results could take up to 5 days.
Richard and I were again humbled and thankful yesterday as the pictures rolled in of our hairbowed friends! The balloons and gifts poured in as well. At one point I just stopped and cried at the amount of love that was shown to us and our princess. By the end of the day, our nurses all had pink hairbows too! The first doctor who came in had on all pink scrubs, even Richard has his hairbow in for his girl.
God is all over this place. We finally got to meet the man who would take care of my girl's head. The man who flew home early from his Florida vacation to take care of my girl. The man who would be operating within millimeters of some nerve that if got damaged, it would be no good. The man who stayed and prayed with us and reminded us, he wasn't the one who would be fixing my daughter. We love Dr. Jane!
We were also blessed with an amazing nurse who immediately recognized our faith in God. She prayed with us, made sure that we got to see Ellie inbetween her MRI and surgery yesterday, so we could pray over her again.
There have been 100 other things that have happened and Richard and I can only praise Him for it. We are a true testimony of not understanding the path...but now that we are on this side of it, it all makes sense.
Hoping to get Noah here today. Trying to figure out the right things to say to him. Definitely not a conversation I ever imagined happening!
If you have a picture of your pink bows or clothes and you didn't post to Facebook I'd love to have it, I'd like to make Ellie a picture album of all her pink friends. You can email it to me at firstname.lastname@example.org
Again, thank you all for your love and support, most of all your prayers....they are working
UPDATE....Dr Jane just came back, he said it looks like he was able to.remove about 85% of her mass....not the official number, but we'll take it! Thank you Lord!
A friend shared this with me this morning. Had to pass along.
I pray that out of his glorious riches he may strengthen you with power through his Spirit in your inner being, so that Christ may dwell in your hearts through faith. And I pray that you, being rooted and established in love, may have power, together with all the Lord’s holy people, to grasp how wide and long and high and deep is the love of Christ, and to know this love that surpasses knowledge—that you may be filled to the measure of all the fullness of God. Ephesians 3:17-19 NIV
Thursday, February 14, 2013
What do you do when you can't fix your baby? When just a kiss and a hug can't make it all better. We started this journey on Ellie's second birthday with what we thought was a stomach bug, from there it has been a whirl wind of Dr appointments, ER visits, and diagnosis. Almost every diagnosis along the way made sense and they treated what they saw.
So here we sit tonight...or technically this morning...(I'm losing track) in the PICU at UVA waiting on her second MRI. We told Monday evening that my sweet girl has a mass in her brain that is blocking the fluid in her brain from draining. She was taken to surgery very quickly to have a drain placed to relieve the pressure and her first MRI done. As a girl and a mom, my mind went straight to her hair. The wonderful people here, tried their best to not shave her hair and even saved me some of her hair, her first haircut...what a way right! We got her back a few hours later, with her new hat....definitely not mommy crochet grade...I'm still trying to convince them to let me add a flower! They gave her monkey a hat too (which also needs a flower).
We got to see the MRI pics of this perfect little head with, with that ball right in the middle. A very surreal moment...so that little thing is what has taken my baby from crazy two year old to a cranky lump. Something so little is changing our entire lives.
More wonderful people have swept in to love my child, bathe her, steal applesauce for her, read her books, bring her presents and take care of us.
I'm more overwhelmed at the amount of love we have received from our friends and family. There are so many people praying for my daughter. I know my God is awesome, but he continues to amaze me. He has given me such peace during this insane time. I am so grateful for that. He's given me my girl back. Over the past
24 hours she has laughed, played, cried but best of all smiled. Oh how I have missed that smile. She is having a horrible time sleeping, but she continues to be as sweet as she can be....considering!
So today, Valentine's Day, a day filled with love, my love will have surgery again. They will biopsy the mass, make a hole to help her fluid drain (there is some big fancy word for the procedure...but I'm too tired to find where I wrote it down...or lazy). The doctor will also attempt to reduce the size of her mass. Once they are done, we wait for results. I can't say I'm excited about living in the hospital for a week, but I am praising God for this hospital and all those on it! (I'd really be excited for a room with a bathroom...this waddling down the hall is getting old!)
I know lots of friends and family have only gotten bits and pieces, so I hope this helps...I know its helping me.
Lots have asked what they can do for us, please just pray for my family. My I haven't seen my son since Monday and I miss him so much. I have an amazing support system helping me with him bit I miss him. My husband is heartbroken because he can't fix his princess. And me... My prayer has always been that in time of a crisis I would still be faithful and still praise my God. I'm doing good, just gotta keep it up.
One last request. If you know Ellie or me, you know she always has a hairbow in for every holiday...well today she can't wear hers. Wear one for Ellie today if you can...she loves pink and there's no better day for pink then today! Hug your babies and thank God for them.
I will not proof read this...so forgive me...plus I gotta go waddle down the hall!
Thank you all,
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