Saturday, October 17, 2015

Natalie's Eye Surgery

Poor Natalie is definitely the third child. I mean, I didn't even get to a one year home post about her. I wanted to, believe me, I wanted to, but between her eyes, and Z's feet, and the whole crappy adoption process for Micah, I just haven't had a spare minute. I have been working at 2am instead of 4am (so I am adding work hours and reducing sleep even more) and I draw shoes and do paintings to sell every 'spare' second: breaks at work, brief minutes between helping the kids with schoolwork at gymnastics, etc. I literally run around the clock and use every. single. minute. Also, the fight for Micah this summer has literally drained me. I am SO. TIRED. 
So here we are. 
So Natalie has always had a lazy eye, and we were patching her when she came home, and she had regular check-ups with her doctor, who is also a surgeon. Then in the middle of the summer (July?) her eye started acting up again. Only this time, instead of it looking a little off, it would drift super far, and when she would try to focus it, it would jump back and forth repeatedly. She complained that her eyes hurt, and she started walking into things. When we would sign at her, she would appear to be looking at us, but would be blank-faced. All these symptoms happened within a couple of days, and I immediately made her an appointment. We went in and got her checked and they told me that she needed surgery on her left eye immediately. 
I'm not gonna lie; eye surgery on my deaf child scared me. I mean, she NEEDS her eyes. It was so hard to say yes, even when I knew it was what we needed to do. It flat-out scared me.
She got a surgery date very quickly. I was nervous because of the horrible experience she had had with me at a hospital only a year before in Ethiopia. She was so traumatized then, and she believed I was the cause of her pain (she had no language and she didn't know me; of course she couldn't trust me). And now here we were again, at a hospital, with me about to let strangers cut into her eyes, and I was nervous that she would not understand and be furious with me. And what if the surgery went bad and she went blind and it was my fault?
During the pre-op appointment the surgery team and told me that she would most likely be blind for three days or so. At first I wasn't too concerned, because she would still have her right eye. But the day of surgery, as I was signing the consent forms, I noticed the paperwork said, "I hereby give permission for ____________ to operate on one or both eyes..."
I was like, "Wait, BOTH eyes???" and the surgeon explained. He was going to cut the eye muscles on either side of her eyes, shorten them, rotate her eyeball, and reattach them. He wanted to do them both to avoid another surgery later, and to make sure both eyes were perfectly aligned. Which made perfect sense, except, it's her EYES. And she's DEAF. And they had told me she might be blind for three days. How do I explain that to this child??? How do I tell her to trust me and let them take her into a scary room and give her shots, cut her eyes open, and then have her wake up blind? How do I prepare her for that????
I didn't know what to do. I prayed and I thought about the reasoning the doctor had given me. I signed the forms. And I told him, "I need to be Nat's interpreter. I have to be in there with her." "Oh no, we can't allow parents in the O.R.," he replied. "We will get a translator for her." "You don't understand, " I said, as respectfully as I could, but with my fighting voice. It doesn't allow for argument. "Natalie won't understand an American interpreter and she doesn't have the cultural background or experiences to be left alone in a hospital. I need to be there to make sure that she understands what is happening. She uses a mix of ASL, home signs, Amharic sign, and relies heavily on classifiers and pictures." "Well we can find an Amharic translator," he said, "You can't be in there." "She doesn't know Amharic sign," I explained, "She grew up with zero language. She won't understand anyone but me, and I have to be in there, or we won't do the surgery. I can also have you talk to my lawyer, if you would like." He frowned at me. "I would have to call and get special permission." "Absolutely," I said. "I would be happy to speak to anyone necessary, so that I can explain the situation." 
Long story short, I received permission to be with Natalie and interpret. The day of the surgery, she and I sat down and we tried to make up some tactile hand signals for her, in case she went blind for a few days after the procedure. She was nervous. I was nervous. Luckily, the nurse who greeted us was really kind, and she brought Natalie to a toy cupboard and let her choose a reward for being brave. Nat chose a doll. Then we went and got ready. I can't imagine how confusing and scary it was for her; a sterile environment where she had to wear a flimsy gown and strange, scratchy hat, and people in white clothes and masks running around pushing needles into her arm; cables and wires dangling from her body, EEG wires taped to her. 

(Getting ready)

I tried to keep her calm. I told her funny stories from my childhood; how my sister and I tried to fly by jumping off the barn roof with a homemade parachute. How we built a raft that sank. How we had baby robins that we raised. A nurse brought me a bag and told me to get dressed. I don't know how to explain it, and we didn't get a picture as my phone had to be off and left at a nurse's desk at that point, but basically it was a giant space suit. It was like a giant pair of baby footie pajamas that zipped up the front, along with booties and gloves and a cap. I looked like balloon. Or Baymax from Big Hero 6. Nat. was. dying. That seriously cheered her up. 
She was so brave, and although she wanted to cry, she held it together all the way into the O.R. Then it was too much; all of the people running around attaching wires to her, the machines, the bright lights. She started crying. I grabbed her hand (we had already talked through what the surgery would be like, and the anesthesia, etc.) and told her it was okay, that I loved her, and that it would be okay. They put the mask on her and she was out within seconds. 
Immediately all of the doctors and nurses started telling me what a good job I did. Apparently parents don't do good seeing their children put under anesthesia. They clearly have no idea what I have been through for my kids. That's nothing for the Ruper clan. 
I went to the waiting room. I had gotten permission to also be with Natalie when she came out of anesthesia, which is also typically forbidden, so I got rid of my Baymax suit and gathered my stuff from the nurses' desk. (In case you are wondering where Abe was; he and Z were getting one of Z's casts on during all of this!) When they came and got me, Nat was asleep. The nurses warned me again that when she started to come out of anesthesia, she would probably be wild and out of control (she'd still mentally be asleep and her body would be acting out). Plus, if she WAS temporarily blind, it could cause panic when she actually woke up. 
I knelt next to her, stroking her arm and using the tactile signs we had come up with. I love you. Mommy's here. You are safe. Stay calm. Her eyes were closed, but pink liquid dripped out of them and traced trails down her little cheeks. All of a sudden, she reared up in the gurney, eyes wide open but unseeing. Her eyes were bleeding and bulging out of her head and she started tearing at them and the cords attached to her. The nurses lunged in and tried to pin her arms, but Nat started swiping her face against the bedrails. The drugs and adrenaline made her so powerful. She was punching and hitting and thrashing like a wounded animal. I didn't even hesitate. I slammed through the nurses and grabbed Nat, pinning her down. She fought and she was SO strong. I took one hand and signed, "It's okay, it's Mommy." She passed out. I released my hold but about a minute or so later, she started flipping out again. I pinned her again and tried to soothe her. The nurses said, "Wow, you are REALLY good at this!" (Thank you sheriff's department defense tactical training!) 
All in all it was about 30 minutes of pinning and fighting. Finally she calmed down and when I signed, "It's Mommy," she signed back "ILY." And then I knew she was awake. She reached out with her little hand and touch my face, signed, "Mom," gave a little smile, and passed out again. When she finally woke up again and opened her eyes, she blinked and tried to focus. I signed into the air, "Can you see?" "YES," she signed back and I grabbed her up in a hug. She wasn't blind!!!! Not temporarily, not permanently. SHE COULD SEE!!!!!!!!!!!!!!!!!!
Her recovery ever since has been good. She was in pain for a while and her eyes looked SOOOOO bad, but she had a couple post-ops and they said she was healing beautifully. She had to be quarantined, and if you were a friend who showed up at our house and I ran outside like a manic and made you park at the bottom of the driveway and refused to let you cross a line drawn on the pavement, well, just know that I love you so much. Thanks for helping keep Nat safe and illness/infection free during recovery. She literally had holes in her eyes from the lasers. It was crazy. 
We had one small scare where her eyes got all red again about four weeks out from surgery and she was rubbing at them and saying they hurt. I immediately took her back to her surgeon to have them checked out. He told me it was the super deep inner stitches dissolving, and that her eyes were healing perfectly. I was so relieved.  
She just started back at gymnastics two days ago, and she is feeling great. She is so happy to not be seeing double and to have the blurriness be gone. Because she was so good throughout the pre-ops, post-ops, and the surgury, I rewarded her with "Rapunzel" extensions. Now we have to watch her walk with an exaggerated sway around the house, while her hair swishes back and forth across her lower back. When you call her, she flips it over her shoulder with one toss of her head before looking at you. # sassypants #canthelpbutloveher 
So there is the latest on Natalie for you. She's doing great, her sassiness has hit a new high, and her eyes are looking perfect! Thank you to anyone who helped pray us through this!

1 comment:

  1. I have tears in my eyes reading this.
    You are a strong woman.... physically, mentally, spiritually....

    Thank you for posting more updates, I was starting to miss your family!

    Sending you a lot of love and strength from South Africa