Wednesday, January 16, 2013

Day 3: First Surgery

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The next few days were completely awful.  I still tear up when I see pictures of Rory and think about things that happened over the past few days.....So, for my sanity I’m going to do a condensed version....

We woke up bright and early on that day.  We brought Rory to the Doctors office in her pajamas.  We brought her phone and the ipad because we wanted to keep her as busy as possible so she didn’t have to ask for anything to eat or drink. 

Rory loved the "yes" on her leg
We laid in the hospital bed together, Rory put on her hospital gown, and we waited.  We waited for the nurses to ask all the questions, do all the vitals, then we had to get our PA to mark Rory’s leg (which she loved because he wrote “YES” on her leg), and then for anesthesia to come and give us a little “kiddie cocktail” to get her calm before she had to go back and get sedated.  
The waiting was awful....I was upset because I wanted to be with her when they took her back to be anesthetized, but because of the gas they were using (and my being pregnant) I had to take a back seat and have daddy go in. 

Waiting with Daddy to go back to anesthesia
There aren’t words to describe the feeling you get when they take your child back....Its a mixture of nausea, rage, and sadness all in one.  We said our “Love You’s” and then she was gone.  it was 9am.  I just stood there watching them wheel her away and then I lost it.  
Luckily there was another mom in the pre-op room that came over and put her arm around me until Jon came back.   When Jon came back we just looked at each other and both kind of lost it....then the waiting game began.  

We all had hospital bracelets- even Marilyn!  
We are lucky that Dr. Paley has a girl on her staff whose job is to text or tell families in the waiting room how their child is doing in surgery.  Every time I saw the door open I would jump a little in my seat hoping she would tell me my girl was doing great, the surgery was complete, and  she was waiting to see me. 
The waiting room had several other families in it, we were so fortunate to have them there to all talk about our stories and share our experiences with each other.  The other families you meet who have children with the same or similar condition become instant friends.  There is something that automatically bonds you together, and we were lucky to meet some great people in the waiting room that day.  
I had packed a lot of stuff for us to do while we waited, because we knew it was going to be a long procedure, I just didn’t think I wouldn’t see my girl for almost 11 hours.  I packed some Christmas things, my laptop, numerous forms to fill out and books to occupy my time.  I was so nervous; just sitting and waiting, which I normally never do, so I wasn’t very hungry and didn’t eat as much as I should.
We would get updates that Rory was doing well, but one by one the other families left.  They got to go back and see their kids and each time I found myself upset that it wasn’t me they were calling back.  Around 1pm, we got an update that they were finished with her hip procedure and were going to start on her knee.  
More waiting....
Around 5:30 Dr. Paley came out, he let us know that the surgery was completed and Rory was doing fine.  I immediately asked when I could see her, but they still had to close up her wound and get her in recovery.  It would still be a few more hours until we were able to see her.  
Around 6:30 we were moved from one waiting room to another.  The nurse told us that Rory was doing well and we should see her within the hour.  She they would have to bring her up from the operating room to the recovery room.  So, naturally, I waited in the halls in hopes of seeing them wheel her from one room to another.  
Around 7pm I got to see her as they wheeled her to recovery.  She was sleeping and I could hardly recognize her.  I couldn’t wait to see her, but at the same time I was pretty scared to see her up close.  They said I would have to wait to see her still for around 15-20 min until she starts to wake up.      
Finally they called me in to the recovery room.  Only one parent could go in at a time and Jon was nice enough to let me see her first.  I immediately heard her little voice say “Mama,” but it didn’t sound like Rory’s voice at all.  She had a breathing tube down her lungs for 9 and a half hours and it was a raspy voice that still haunts me in my sleep at night.  She had tubes all over her, everywhere there was a tube.  I wanted to hop on the bed with her, but was afraid of kinking a tube.  She was scared and confused and was crying.  The nurse gave her some more pain meds and she went back down into a sleep.
I couldn’t believe this was my girl.  Her whole body was completely swollen, her eyes could hardly open.  The sound of her voice and cries were devastating to me.  She couldn’t move much and did not look like my daughter.  She could hardly move too, she had her spica cast on and it went from below her  breast bones to her foot on her right side and her knee on her left side.  
As she was falling back into sleep, I felt myself getting extremely light headed.  I think it was a combination of being haunched over a hospital bed, not eating much that day (which I should have eaten anyway since Im pregnant), and just seeing my daughter in the state she was in, but I knew I was going to faint.  I ran back out to the waiting room to see Jon
Jon started waving papers at my face because I clearly looked like death.  I told him to go with Rory and bring his phone and I laid there on the floor.  It was completely surreal, I just laid there and cried.  When I felt better I went back in the recovery room; one person only is what they say, but I hadn’t seen my daughter in almost 11 hours and I was going to be with her no matter what.
She began waking up and we went to our room.  She wanted to drink juice so bad, but the nurses wouldn’t let her because after surgery kids have a tendency to vomit things back up, but she could eat popsicles.  When she got to her room, she ate almost four popsicles.  She couldn't eat them fast enough.  We finally gave her some juice to see if she could keep it down, but we could only give her little sips, which upset her; she wanted to chug as much juice as fast as she could.  
I managed to hop into the bed with her, I couldn't be close enough to my girl.  Jon and I ate, and then we tried to get any kind of sleep we could.  I slept in Rory’s hospital bed and Jon slept on the fold out chair.  
It was so hard to see Rory that night I didn’t take any pictures.  Im not sure if it was because I didn’t want to remember her like this or because I just didn’t want think to take any.  It was the longest day of my life.  I couldn’t believe that she was in surgery for 9 and a half hours.  I didn’t see her for almost 11 hours that day, and it was too much for this stay at home mom to handle!
We braced ourself for our first night in the hospital.  

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