At 7 am we woke up Phoebe, got straight in the car and headed to the hospital. She didn't fully understand what was going to happen but she knew we were going because of her neck. We pulled up to Valet parking, got her out of her car seat, walked into the hospital and head towards the elevator. All I had to do was push that button because we needed to go down to the surgical floor. Every fiber in me wanted to grab Phoebe from my husband and run the other way. For as calm as I had seemed, inside I was panicking. I knew this day was coming but there was still that part of me that hoped this was all a dream.
We walked off the elevator and over to registration, an area I know all too well, and got the id bracelet for Phoebe. The woman was nice enough to let her get a band for her bunny as well. She was so happy they matched! A nurse called her name, I scooped her up in my arms, and we walked into our pre-op cube.
I'm not sure anyone realizes how difficult it is to appear calm, happy and like nothing is bothering you when you are standing with your 3 year old knowing that in only a matter of time they are going to be on the operating room table unless they have gone through it. We tried our best to keep Phoebe happy and playing so she didn't catch on to our nerves. A huge help was the child life specialist team who came to play with Phoebe to distract her from all the hustle and bustle of the pre-op area. She played with play-doh, little people farm animals, a rainbow snail and a treehouse. She was so happy and relaxed she didn't notice the various nurses and doctors or even the surgeon coming to talk us through what was going to happen. I have done this with her before, so I knew what to expect, but this was the first time my husband was with us. He was having a harder time hiding his nerves than I was.
Surgery started about an hour later than it was supposed, and I was ok with that. The later they started, the more time I got to spend with my baby girl. When the surgical nurse came to get us I was already dressed in the sterile outfit to walk her back into the OR. This time, they wheeled her into the OR on her bed from pre-op. I followed them down those long, cold hallways that I had walked a year earlier. I was screaming in my head "we can't be here again! She's only 3! This shouldn't be happening". Phoebe kept turning back to look for me and I would just smile and say "mommy's here baby, I'm not leaving you" and she would just smile at me. It took all my strength to not break down and cry.
We went into the operating room and they transferred her onto the table. She sat there looking around at everyone and did not relax until I took a seat next to her. While she sat there, they put the mask on her so she could receive the anesthesia. At first she was ok, but she began to fight it. She tried to rip it off her face, she tried to turn her head away, and she tried to keep her eyes open despite them getting heavier and heavier. The whole time she whined and reached for me. All I could do was sit there and calmly say "it's ok baby, mommy's right here. you can go to sleep baby, i'm here". She finally fell asleep, they laid her down, I kissed her cheek and walked back to the waiting room.
By far that was the worst feeling I have ever had. None of the other surgeries compared to what I just witnessed and felt. It shattered me to the core.
Surgery took 45 minutes, even though it felt like a lot longer. The surgeon came to talk to us and he explained that he was very shocked and concerned about the size of the lymph nodes he took out. (he went in wanting to take as much as he could of what was bothering her, he was thinking at least 3 nodes that were not bigger than the last one was which was about 2 centimeters)
What he removed was so large he took a picture to show us. 3 lymph nodes had fused and grown together. What the doctors had been seeing and feeling at the physical exams was just the surface of the nodes. They were protruding down into her neck making it hard to get a full idea of how big they were. And the ultrasounds were done prior to the fusing so they had no way of knowing that had happened.
In the picture the surgeon took, was this clump of 3 nodes below a ruler, and the length was 2 INCHES!!! It was equally as tall as well! And they were black! (I have her last biopsy report, so I know lymph nodes are supposed to be tan)
The nodes were immediately sent off to pathology, so all we can do is wait for the results.
Now all we wanted was to get to our baby, hold her and bring her home!
Photos: 1- Phoebe and Bunny just got their id bands
2- Just got to pre-op
3- Playing with the child life specialist
4- Playing with the child life specialist
5- Blood pressure check
6- Ready to go to the OR with mommy
7- Just woke up from surgery, all smiles!
8- Stage 2 recovery with mommy
9- My drawing of the picture the surgeon took of her nodes