Day 2 Post Surgery

Day 2

         Today has been fairly uneventful.  Charlotte slept through the night pretty well.  She gave us a tiny scare right before bed when she threw up a little bit.  Thankfully, the surgeon was there when it happened and he was able to look at it and say that he wasn't too concerned.  Charlotte has been in much better spirits today, giving us more smiles and playing patty cake.  She has started to eat some more bottles which is really exciting!! She has been able to nap better today with out sounding like she was uncomfortable.  Christopher and I were able to step out for a little bit to attend the NICU reunion to visit with some of our favorite nurses.  It was sad to tell them we were back in the hospital but they look forward to maybe a visit from us when we come back for chemo treatments.  Charlotte had some extremely sweet visitors the last couple of days that have brought her parents and her some goodies and meals.  We are so blessed to have such wonderful people looking out for us and for our little girl.  We talked with the pain management doctor today and he thinks her epidural will come out tomorrow, which means that her catheter should come out shortly after.  Her urine output has been great today so that is no longer a concern, however she needs to continue to have the catheter in until the epidural comes out because the epidural makes it difficult for her to feel the need to go to the bathroom.  She has also finally had a full feed (90 mls) and a bowel movement which is wonderful because that signals her intestines are waking up after having surgery.  Her oncologist doctor came by today as well and we were able to talk a little bit about chemo.  He said that we will sit down tomorrow and have an in-depth conversation about what everything is going to look like and what our preliminary schedule with look like.  Charlotte will likely start chemo tomorrow evening or Tuesday some time.  

     Having some more down time today has allowed the realization that my sweet baby girl has cancer to hit me.  When we found out that she had an omphalocele we felt like we were hit by a ton of bricks but we immediately went into planning mode because there was a lot of unknown and planning is all we could do.  Now with the cancer diagnosis it feels like a punch in the gut.  We are back again in the planning mindset, figuring out when chemo will begin, figuring out how many treatments Charlotte will get.  We are so blessed that this was caught early long before this could cause any damage to her eye.  If it wasn't for us looking to confirm that she had reflux, we would have never found the tumor. The doctors seem pretty positive about her prognosis.  As I walk the halls of the oncology/hematology wing here at the hospital and I feel sad and hopeful.  I feel sad that so many rooms are full and hopeful that we are in such a wonderful place that can provide her the best treatment. Charlotte will be followed by an oncologist for the rest of her life which is just one more doctor and complication that she will have.  However, they are very positive that this isn't putting her at risk for any future cancers.  We have struggled so much in the last couple of days but we are choosing to focus on the positives as best we can.  We know that if it wasn't for Charlotte's omphalocele or at least for the concerns about her low weight gain and spitting up, we probably wouldn't have found this cancer until it started to effect her vision, if it ever did.  I hate seeing my sweet girl going through this and I hate what is to come but I know my girl is a fighter, sadly we have already witnessed this, and she will come out on the other side of this stronger than ever.  A wonderful friend who came to visit today reminded me that it helps a little remembering that she won't remember any of this.  One quote that I saw here at the hospital that I love is "Sometimes real superheros live in the hearts of small children fighting big battles." 

Yesterday we danced to help make the pain seem like a little bit less painful 

Charlotte loves and misses her puppy

My favorite girl on some happier days :)