December 15th, 2016 (Sara)

Yesterday, or any day between June 15 and yesterday, if you were to ask Maya how old is was she’d say “three and a half”. It would take mommy or daddy to chime in to correct “she’ll be four tomorrow”. Today though…she is a solid “FOUR”. The dragon was born four years ago this morning. After some minor complications, oxygen needs, chest xray, iv antibiotics…and approximately 12 hours she was finally on my chest and things looked like they were going to be okay and didn’t need a trip to the NICU.

I had a beautiful pregnancy…played everything by the book…took birthing classes, researched, mediated, ate the best foods (duh, Registered Dietitian here). Gained perfect amount of weight. Taught dance till 48 hours before I went into labor. Studied for school. Took a final exam (early) just 36 hours before she was born (Thank you Dr. Ashley). Prepared intensely with Scott for a natural child birth. Survived a 100% natural child birth. I wanted to be sure the baby didn’t have any medicine in her that might make her groggy so she could find the breast and start suckling right away. Everything was going to be smooth. Right. I mean I knew having a baby was going to hurt. I have a high physical pain threshold, pain control was not a fear of mine. Scott and I are a great team. We had confidence we could do this. And we did.

After laboring for 8 hours at home and questioning I was even in labor (thank you again Nikki Mitchell for helping me catch a clue), my water broke and we were off to Carson Tahoe Hospital. Arriving at a disappointing 3 cm dilated I had to stay since my water was broken.

After another 9 hours of more severe labor, Maya was born: 4:55am. She was the most beautiful baby one could lay eyes on. Wait. Is she supposed to be that purple? Shouldn’t she be screaming or something? She doesn’t seem to be moving. Uhhhh…..maybe if your rub her a little harder she’ll wake up. She sleeping? I don’t mind a lazy baby. Not sleeping. Probably not sleeping. Okay just rub her more. I’ve seen that in the 100 videos I watched. Suction? Suction more. Suction more please. Come on baby girl. BREATHE! I looked at Scott and I have never seen him so white. I hope I never have to again. While I’m 0-2 at having my OBGYN deliver my babies, I’m grateful for Dr. Koch. We don’t know each other but I appreciate how she was Strong and Calm well before we knew we’d need that motto. She quickly cut the cord and they whisked Maya to the side table. Dr. Koch tended to me. After some extensive suctioning I heard the first dragon cry. I want to say it was the most perfect cry but…reality is…it was the most bubbly cry I’ve ever heard. We knew it wasn’t good. It was muffled and unhealthy. The Dragon was in trouble.
Maya had aspirated some of my mucus plug. The aspiration led to some extreme heavy breathing which led to the “transitional something or something or other” diagnosis. After a lovely (well as lovely as child birth can be) marathon dance party we did that night, she took a deep breath too soon and choked. We were so happy to be able to have her treated by the amazing labor and delivery team at Carson Tahoe. They did a fantastic job and was able to help me initiate milk production even with all the stress and lack of baby that first day. Four years ago right now (approximatly 9:30pm) Scotty and Maya and I were all in our room at CTH getting to know one another. She had an IV in her arm with a baby sock over it for 3 days but we discharged to home happily and after those first hours of scare, I have nothing but amazing memories on the 3rd floor of Carson Tahoe.
Maya was actually quite planned. We knew it was a long shot, but we had hoped to have her during Christmas Break. Scott was still teaching back then and I was finishing up degree. Having a child close to Christmas is so special. This season is like no other time of year. Some years, the holiday season is incredible while other years it is filled with loss or pain. Either way – the holidays are intense. And what better time to find a reason to celebrate.
As stressful as December has been for Scott and I (dealing with this shift of Stanford to Renown, insurance crap, and work dynamic) we have had such amazing magic. Last Friday we got to open our door to the most magical part of the holidays…CAROLING! Stephanie Arrigotti of the Western Nevada Musical Theater Company….and a family friend for my entire life….set up caroling for our family. Last year we were able to go with the group to long term care facilities but since Maya can’t even go to a park – rehabs and facilities like that are not on the list of recommended. So. The kind souls bundled up and came to us. We had our Friendsgiving dinner that night with Auntie Megan, Uncle Adam, Auntie Genessa, and Liam so they were able to witness the magic too. Maria (one of my dearest friends) sang the sweetest carol and my nose still tingles when I think about that night. Thanks to all involved for bringing such a sweet experience to our home.
In addition to caroling, there are Christmas parties! Also not something our family can commonly partake in these days. BUT we were invited to the Northern Nevada Children’s Cancer Foundation’s Christmas party at the Eldorado on Tuesday. It was SUCH an awesome event filled with great food, dancing, amazing fellow cancer families, the best nurses, awesome fire fighters (with Yo-Yo’s…thanks to the one that gave Maya her green yo-yo…I know, you couldn’t say no). SANTA and ELSA! Oh and Olaf too. What a night we had! 
It is funny to think we were hesitant to go but I know we would have regretted it. It was amazing to make it through the night and realize I didn’t hear one cough, sneeze, or sniffle. I sort of imagine a person would be shamed if they showed up to an event like that sick. There were little bald heads bobbin around and others clearly in maintenance with hair growing back. Some kids had finished treatment early in the year and others finished years ago but still get followed closely. I was able to catch up with a few people that are becoming more and more close as this whole thing plays out.
Maya and Lincoln met Santa! Maya has been hesitant about Santa because…well she’s smart. But she got more confident as the night went on and she walked right up on the stage and sat on his lap. Lincoln….not so much. But daddy helped him cope. I have been asked what Maya asked Santa for Christmas. Truth is, she actually just wanted to know if he and Elsa ever hang out. My child. Ha. I don’t think she got an answer. 
The night ended with dancing with some wonderful nurses that we love. We practically had to drag Maya out because she was having such a great time but Lincoln turned into…well the only way I can explain his behavior is that of a drunken noodle. Really. He’d just grab my hand and his legs would go lifeless as he giggled. So weird. Maybe someone spiked his koolaid. Needless to say, with all the excitement and the late night, we were a nervous it would lead to the very typical crappy night of sleep but, we actually ALL slept until about 6:30 the next morning. I’m not sure who to thank. Maybe Santa heard my Christmas wish from 10 feet away. Thank you for whatever power it was that gave us that sleep. It was truly the best night of sleep I have had in months.
Today we celebrate Maya. To be honest. It seems a little like that first birthday. Almost as special. Thinking back to Friday February 12th, 2016….We didn’t know we’d get to see another one of Maya’s birthday’s. I hate to think that thought crossed my mind but – I’d be lying if I didn’t admit this birthday is more of a relief than anything. I am amazingly thankful for the help of our medical team and our kick ass pediatrician who got us to Oakland in plenty of time to beat this thing. Because of that, we are able to celebrate this wonderful child’s birthday again. When you ask her how old she is today – she will say Four. If you ask her when her birthday is, she’ll respond with “twelve-fifteen-twelve”. This might be strange to some. Why doesn’t she say December 15th? Because she is a cancer kid. When we verify her birthday for her meds and/or chemo, we say 12/15/12. She hears the nurses double check chemo with 12/15/12. To me, it is a reminder that we are survivors. We have made it this far as a family and I know we will continue to stay strong. My kid spends more days in the hospital than most and she might not know her birthday is in December….but she is stronger than most. She is so beautiful. Loving. Tough. Kind. Smart. Caring. Funny. And Alive.
Happy Birthday Maya the Dragon. May this year be your toughest. May the next year be the first of many many more. 
Love is Life.