Hour by Hour

I first want to apologize for not updating you all on how things are going. Honestly, we are having a tough time adjusting back into our routine at home since Cincinnati and it's taking just about all the energy we have. Our families first priority is one another, I know you understand - but I did want to apologize. 

Keeping you updated is very important to us, you are our prayer warriors, you are alive in our home just as much as we are, you love this little girl as much as we do and you deserve to know how things are going. Thank you for being patient with me as we navigate the waters since returning home.

A lot of my hesitation for updating is driven from the simple fact that I want to share good news with you! It BREAKS MY HEART when people talk to me about the blog that the first thing they said was "I cried the whole time reading" - I wish our stories and updates didn't bring you to tears. I wish you could read an update and smile and laugh.. I want you to laugh with us.. heck, I want to be able to smile and laugh at every update on how things are going with Annabelle too. The sad truth is that we don't have a ton of exciting and happy updates.. the painful facts are that Annabelle is in unfair pain, living thru hell, still without answers and heartbroken because she doesn't trust any of us. We try to find the silver lining in each day, we force the laughs and smiles but deep down - we are crying too. We are crying with you. I cry when I update.
I want to wait for only the happy updates on the blog, but they're just not coming our way right now..... so here goes it.


She. Is. Pissed.

Annabelle is still mad as a hornet. A year and a half ago we hired a nurse to care for Annabelle in our home. This provided us (me as mommy, mostly) the ability to step aside as the 'mean person' that subjects her to pain, procedures etc.. once our nurse was hired, it became her responsibility to change her feeding tubes thru tears, she is the one who administers most medications that taste nasty, she gives enemas and I am able to step in afterwards to comfort the tears. It has taken a year and a half for Annabelle to love and trust us again. We ruined all that work within minutes of stepping into Cincinnati Children's Hospital. Annabelle has directly associated me as the one responsible for all the pain she endured while we were there. Daddy was with us, and equally if not more, hands on during the painful processes - but Annabelle blames me.

I can process the blame because I know we were doing what is best for Annabelle. Two weeks later however, she reminds me daily that she is mad at me.. she doesn't like me very much.. she fights anything I ask her to do.. she gives me evil looks from down the hallway. It's heart SHATTERING to see yourself thru your daughters eyes as evil, a disappointment, a trader, not the comforting mommy but the liar that said she would protect her.

I don't know how to overcome this on my own. In our home, we try our hardest to stick to our guns on the rules and expectations for behavior. We have high standards for our kids, their manners, respect and minding. That being said.. we also weigh "pick your battles" on a daily basis. Annabelle has delivered us a flood of battles and they're getting harder to pick.

Case and Point
Annabelle demands with an angry tone. "IM HUNGRY! MAKE ME APPLESAUCE!"
I stare at her. Zero emotion. I didn't get mad at her or put her in timeout for the attitude.. I just stare at her and walk away.. trying to ignore all the anger she is demanding I hear in her voice.

Annabelle: Applesauce, PLEASE!

Me: Thank you for using your manners, but please don't yell at mommy - goodness it hurts my ears! Do you want a pink or purple bowl AnnaBanana?

Annabelle: .....pink.....

I made her applesauce and kept cleaning and moving about the house. Her attitude subsided when she began to eat. I had music playing and was singing like a goofball in hopes she would remember how silly I am and try to enjoy our time together. . . didn't work, she told me to stop singing because it didn't sound very pretty. (In her defense, she's right. Im an awful singer! lol)

10min have passed and I come back downstairs

Me: How's that applesauce? You just about done?

Annabelle looks right up at me. Looks back down at her bowl. Looks back at me and picks her bowl up. We have a stare off... I wasn't sure what she wanted or was doing, she didn't say anything.
She then lifts her bowl off the counter, while locking eyes with me and drops the bowl of applesauce on the floor. Splatter. Applesauce on the walls, cabinets, chair, floors, everywhere.
. . . . she marches away.

Exhale.
This is our life. She is so ticked it isn't funny. This isn't a 3yr old tantrum. This is a heartbroken, mad to the core child that was just tortured and feels like no one is in her corner anymore. This is a little girl that is filled with anger and doesn't know how to channel it.

She's putting us in these situations constantly. Her behavior is NOT allowed in our house. However, we are allowing her the space she needs to finish her bitterness. I hope we can figure out how to help her channel this anger. I hope she's able to overcome what Cincinnati has done to us and remember how much mommy and daddy genuinely love her. I hope she doesn't remember that the week before we go back to Cincinnati and repeat this hell all over again. :(


Since she isn't communicating well with us anymore, it's hard to gauge how she's feeling. She often tells us she is hurting but the conversation is short and is quickly dismissed by the time I ask her to be specific "what hurts baby?" The other night I watched her gasp in pain and scream to get the bubbles out of her stomach.. I hooked up her tubing and her stomach expelled 40cc of blood. She watched the syringe fill as fast as I did - she suddenly wanted to be done and get away. She knew that when I saw so much blood, that I would worry.. mommy's worry often leads to a doctors visit. Annabelle is happier to be in pain and home than a doctors to 'help' the boo-boo's. Fortunately, the bleeding stopped after 10minutes and I unhooked her and promised not to tell the doctors. We laid in bed together and watched TV. We didn't cuddle... but we laid in bed together (small victories).

We started her medication Monday night before bed.  We finally got the thumbs up from Cincinnati that her EKG was Normal and we may begin her new pain medications.

Beyond just hooking Annabelle to feeds, this medication administration was the first time I've had to do something with Annabelle's medical care since being home. It truly wasn't a big deal at all - I just needed to cut and mix the meds, hook up her extension to the gtube in her stomach, allow her stomach to expel any air then administer the medication, watch it, flush it and unhook the tubing. This is a very fast, quick process that we've done a thousand times. Unfortunately - when Annabelle saw that I was cutting a pill and pulled out tubes and syringes - she decided in that moment "This will be a battle I am going to fight". Within seconds of her seeing what I was doing at the kitchen counter, she lost her mind and ran upstairs to hide behind her locked bedroom door.

I headed upstairs after I finished assembling everything I needed: Feeding tube extension, 5ml syringe, 60cc open top syringe to vent, 5ml syringe with medication and two 10ml syringes with water to flush... paper towel and a lollipop.

Annabelle was hysterical in her room begging me to go away. This process was painless and routine, but her anxiety decided she wasn't having it. She didn't trust anything I told her and yelled louder than I could speak. It was a 5 minute battle of trying not to escalate the situation but convincing her that I wouldn't hurt her. I pleaded that she allow me to TALK her thru the process and I would let her do 100% of everything herself - I promised I wouldn't touch. After calming down, we sat in her bedroom floor together, as Mady encouraged her "Good job sissy! You do that just like a real nurse! You are Nurse Annabelle -hehe-"

I didn't touch her at all. She did most everything perfect. She probably only got about 75% of her medication bc it was messy, but the value of no tears, building trust and her doing it herself was more valuable than her getting 100% of the medication.

The girls played doctor upstairs as I cleaned everything up. When I walked downstairs, AK had poured me a glass of wine and waited with a hug because he overheard the battle from upstairs.

We are taking it day by day. Sometimes hour by hour. I look back and don't know how we've made it this far but somehow we have. I look forward and can't breathe because I'm not strong enough but I know I have to be. It's overwhelming. The past, the present and the future. Every minute is hard sometimes and it will break you if you allow it. Right now, the road is quite rough in our home.. pray that it gets easier soon so that we can remember how to laugh and smile.



I have to say before I finish this post. Allan and I must give most credit during the past couple weeks to Madelynne. Annabelle is furious with AK and I, but she isn't mad at Madelynne at all. Her sister is safe and Mady has taken her under her wing without judgements. Madelynne knows her sissy had a really hard time in Cincinnati, she knows why Annabelle is mad at mommy and daddy but she doesn't blame us like Belle does. Mady has been SO patient with her sister.. 10x more patient that she typically is. She is our method of communication some days.

Annabelle is happy with her sissy and Mady is content to play upstairs alone with Belle to keep her happy.
When we needed to give pain meds, Mady was right there beside Belle and making her laugh as I stayed several feet away just telling them what to do.
When I told Belle not to ride her bike in the driveway and Belle had a screaming fit - Mady turned their time into a game of tag in the yard and played bubbles.

Madelynne takes on a lot of responsibility as the big sister to a chronically ill sibling. We have never asked or expected her to take on that responsibility, it's simply part of her nature and spirit. I love that most about Mady. I love that she finds ways to help anyone in need, I love that she shares my heart to see when others are hurting and figures out how to help and make them smile. I love learning from my strong 6yo.. I love that she gives us so many reasons to smile during the day when it's easier to just fall into a ball and cry. Mady brings out the sunshine and spirit in Belle and our entire family, even on our darkest days. What a blessing... despite the despair, we are blessed beyond measure.