Tuesday Update

This is going to be an update on what we've been up to and how things are going. I will update once we are home about conversations with the doctors and our teams and what findings are looking like. I want to do it this way for a couple reasons: 1) my baby girl needs cuddles and my attention 24/7 while we're here 2) when I share what the doctors are saying, I want to explain the information clearly for everyone to understand. 3) we don't want to speak too soon and get our hopes up. Right now, Annabelle is looking really good based on the surgery - we are praying with all our might the biopsy results reflect the same. 

Monday's surgery was a roller coaster of emotions. I told Annabelle about an hour before we were scheduled to go to the ER that she was going to see the doctors and they would give her medicine to make her sleepy so they can look at her tummy. She immediately got upset and this began an hour of pleading to go home. She was terribly nervous but fear quickly escalated into surrendering. 

She rode in the wheelchair silently with a head dropped. I tried talking to her and she wouldn't even look our way. She was heartbroken and knew we wouldn't help her. Once in pre-op, she climbed out the wheelchair and onto my lap and cried to leave and go home. She said Cincinnati isn't fun anymore and wants to go home. 

We met the Anesthesia team and after reviewing the game plan again, they were ready. 

They gave her two doses of Versed and within a minute, she was loopy and drunk. Her tears and fears turned into giggling. We walked down the hall and I asked to be with her in the OR until she was down but they wouldn't let me. We had to say goodbye in the hallway and I gave her a kiss on her forehead. AK did the same, although she was entirely too disoriented to know what was going on. 

Annabelle and Lambie rode to the OR together. We checked into the surgical waiting area.

Half way thru surgery, we were called into a consultation room to speak with the doctors nurse. She informed us what the doctor saw while in the OR and we spoke briefly about game plans. We walked out of that small room in a daze. I didn't walk back to our chairs as before, they were too far away. I fell into the first chairs available and stared out the window in utter disbelief. For several minutes we didn't speak. AK mumbled "how is this happening?" .... "I don't know.. I ..... Don't understand.."

A little while later I heard another nurse mumble Annabrlles name and we jumped out our chairs to meet her. The nurse said we could see our daughter and we followed her back to post-op. I could hear her cries from the moment we entered the room. 

Annabelle did NOT come out of this surgery nearly as comfortable as she did the last time. She was disoriented and in visible pain, as expected. Her cries were raspy and her hands and body were trembling. Annabelle usually comes out of anesthesia and can recognize is within 15m from the time she's awake, however 10m later she still was not close to waking up. 

I climbed in the bed and laid her limp body across my chest and sang her song slowly to calm her down. She still wasn't coming back to us.. My heart wouldn't stop racing as it shattered "my baby is scared and in pain and she doesn't have a clue who I am.. I have absolutely no way to console her :("

After 40m we decided it would probably be best that we take Annabelle back to her room upstairs where she would be more comfortable and I could cut on Frozen. 

They transported us together on the bed until we got to her room and I tucked Annabelle in her own bed with fresh sheets and a warm blanket. She still didn't wake up or hardly open her eyes. While AK took care of logistics, I cuddled my baby girl and ran my fingers thru her hair until she stopped crying. We both slept for almost two hours together. When she woke later, she was happy. Sore and raspy but happy to see us.

We discharged late yesterday evening and checked into the hotel around the block. Annabelle was hungry but unable to eat much at all for dinner. I laid in the bed with her early and before we knew it, we were both asleep and it was 830am Tuesday. 

Today has been good. She asked for donuts this morning, and although she shouldn't have them, I have in and we found a Dunkin Donuts where they had a billion donut holes to choose from. She ate 1 and couldn't eat any more because of her tummy and throat being so sore. 

Her lower GI is still unsettled. She's been passing blood in her stool and in her diaper, as expected from surgery but otherwise I think she's recovering well. Her throat hurts but she doesn't seem to be developing a cough as she does often times after intubation. She is very weak and hasn't walked much at all since Saturday.. We aren't pushing it though and just letting her lay in the stroller or we carry her when we're doing something. Her little body needs the rest. 

We saw the Geneticist today.

 I will update later on our conversation but at the end of the visit, he ordered fresh labs outside of the numerous  blood they took during surgery. The moment I told Annabelle we needed to do labwork and pokes, she broke down. The largest crocodile tears you've ever seen and again pleading for us not to take her. She was scared of everything, she panicked every time a nurse came in the room, she jumped any time we moved her stroller. She covered her arms as tightly as she could. She begged to go home as many times as she could repeat the words. 

We headed towards the lab where all hell broke loose the moment we were escorted to our own room. I have held this baby down for more tests, procedures, needles and pricks than I care to admit - but I have to say, I have never ever ever seen her act the way she did today. She hit a major fight or flight moment and lost all control and faith in mommy and daddy. She screamed to the top of her lungs and thrashed her body around to get away. I apologized multiple times to the nurse as I tried holding Annabelle down. It was nearly impossible. We ended up moving to another room where I could lay her on a bed vs holding her in my lap. It was easier to retrain her there. After a few minutes looking for a good vein, they made the stick. She dug for nearly 20 seconds until blood began to move. As soon as the blood began filling, the nurse let the needle go and turned away to read the tubes.. The nurse then got frustrated with Annabelle for yelling Bc she was apparently pushing the needle from her arm. I'm not a nurse but why she didn't just hold it there is beyond me. Soon, the blood began to stop and the nurse and her assistant argued over what to do next. AK and I stared at each other in disbelief as they dug in her arm and we held our baby down. 

They pulled the needle and I room Annnabelle out of the room. We also needed a urine sample as well, so I took her potty as I tried calming her down. She could hardly catch her breath and wouldn't look at me at all. She just kept repeating that she wanted to leave right now and that we are mean to her. We don't love her and she wants to go home. My heart was broken. I walked her back into the room of hell where the nurse and her assistant were waiting for us to return. It was time for another shot at getting the rest of the labs. 

I stood on the verge of tears and told AK I needed to walk away. I am so tired of being the bad guy that consistently disappoints my child. I am supposed to protect her from harm, be her advocate and voice. But far more often, in her eyes, I am the one that holds her down or subjects her to pain myself. It's taken me nearly a year to build the trust back up with Annabelle, for her to believe that I do love her and protect her. That all washed away like a flood today as she looked at me past the nurses holding her down while she screamed to the top of her lungs. 

I couldn't stay on the other side of the room long, they needed the extra set of hands to hold her legs and hips down, so I stepped back in. 

6 IVs and blood draws in two days, Annabelle was DONE! I picked her up and tried placing her head on my shoulder and she wiggled down, "NO mommy!". She climbed in the stroller on her own and we walked away as she sniffled.

We asked repeatedly, do you want me to hold you hunny? "No!"

I love you Annabelle. ..... Nothing........ I want to go home, now. 

AK is the only one warmed up to her right now. She's visibly heartbroken and exhausted. We are also exhausted, emotionally and physically, over what this week has done to us. Together, as parents of both out kids. It's hard. This crap is HARD!

Annabelle is asleep now and we promised to take her to the zoo when she wakes in the morning. Maybe tomorrow she will forgive us :'(