Arrived

We made it!  6 am arrival and Caroline is watching a movie on the iPad.  I'm trying to keep my crap together because she totally caught me with tears in my eyes this morning and asked me why...ugh. 

Postponed

We found out we're being bumped to Tuesday on the surgical schedule.  

Pre-op was interesting with a very overtired preschooler. Everyone's least favorite part was the blood draw. Spending 8 hours at the hospital with 3 kids just sounds like something out of a horror story. My sister Cindy helped with Nolan and Everly while I tended to business. Just one step closer...

You can't make me

As the surgery date draws near for Carolines Fontan, I have chosen to hide under a big ol' Mama sized rock and deny everything. I'm in denial. If I ignore it HARD enough, maybe it'll go away. I closet prepare for her hospital stay...When no one is looking and very late at night. I feel like if I live constantly in the shadow of this upcoming surgery, I'm denying her the last few days of normal before hospital beds and medical jargon completely take over. We enjoyed a visit to the Cabbage Patch as a rainy day expedition this week. It was a welcome distraction. 

Come dance and twirl with the birthday girl!

Caroline had a fabulous time celebrating her 4th birthday with friends and family.  Icing Smiles provided her cake again this year and Room for Dessert in Monterey did a great job being our sugar angel!  

Also, my big girl got her ears pierced!  I let her pick out earrings (she chose blue opals) and she did such a good job at the piercing studio! She made everyone smile and convinced me she's the bravest person I know. 

Cath Lab Drama

Caroline had a pre-Fontan heart catheterization the first week of December that I was NOT prepared for.  Instead of having an outpatient procedure to measure her pressures, coil off any collateral veins, do any stinting...I got a call from a nurse in the cath lab about 15 minutes after I left her there. (As a side note, leaving a child on the table for ANY procedure is difficult.  Even after a healthy dose of Versed, she fought the mask on the cath table. Then, as her body was taken under by the anesthesia, she shook violently like she was having a seizure. I was prepared for this. It wasn't easy, but I had a very good idea of what to expect.)  My phone rang just as I sat down in the courtyard with a Coke.  The nurse asked, "Has Caroline ever had any issues with heart block?"   Ummmmm. What?! That just SOUNDS bad.  And the answer is NO!  Of course, I start researching on Google as soon as she hangs up.  I head back down to the overcrowded waiting room and wait in a rude impatient way, pacing in front of the receptionist, face glued to my phone.  They finally call me and request a meet up to discuss 'details' of the procedure. Apparently, as soon as she was under anesthetics her heart rate began to tank (low 30's, high 40's), and she went into a 2 to 1 heart block.  They brought her directly into the VERY full CICU at LPCH for observation. Our goals were to watch and see if her blocks were causing blood pressure anomalies or pushing her oxygen saturation to unsafe levels.  Despite the almost 36 hours we spent there being observed, her body never responded negatively in heart block. The doctors still recommended placing a pacemaker when we do the 3rd stage palliation (Fontan).  I don't agree.  We are seeking the opinions of other institutions.  

Just a Few Words on Friendship

As I've gotten older, I realize that my tolerance for being around people has shifted. Before, I had the need to be around people that were fun and made me feel good. While this is important, I feel the need now for bigger things. Like loyalty. Trust. Presence. I want to teach my school bus full of children how to be a GOOD friend to people. I want my kids to see that when Mama has tears in her eyes, only the true people are there to comfort and listen. Because, the truth is that I'd rather be alone than surrounded by selfish and rotten. I've lied about stupid and ridiculous things in the past. Made up stories to spare a "friend's" feelings. I was wrong. I'll carry that burden as I see fit. But in my defense...I must say that if I felt comfortable with you, "friend", I wouldn't have seen it as my only option. I wanted to trust you, because that's what friends do. You have a body you need to hide? Call me. I'll help you dig the hole. That's what I'm looking for. As someone's friend, in my opinion, you shouldn't judge. Offer advise, yes. Tell someone how crazy they are, absolutely. But to hold judgement and then offer any information collected as a "friend" to threaten or cause turmoil is not and will not be tolerated. EVER. I realize that this post comes across as random and maybe a bit jaded. I feel that it may speak to those using this blog as a last resort of keeping tabs on what's going on in my life. I know. Google tells me who you are.

The 'Unfairness' of it ALL

I recently had a run in with a man (two men, actually) that showed me a tiny preview of how people outside the 'club' see children. It hurts me to even think about it. I don't really want to. I wish I could forget. I had Everly with me. She's 22 months old. She is my firecracker, but is as sweet as sugar when she wants to be. I can see now my faults in the situation. I was on an airplane going to Atlanta, for very selfish reasons. Our seat was right in between the two men in black. Once in our seat, the one on the aisle proclaimed, "I hope that kid is quiet because I have a busy day tomorrow." He actually said that (or something like it), out loud. The guy against the window sat quietly eating his fruit snacks. Everly tried to engage both of the men on different occasions, neither of which would even look at her or smile an wave. Things started getting interesting when it started getting late. The lights were dim. We watched movies on the Kindle, colored, sang songs, read a book, I let her nurse ALL she wanted. The seats are narrow, and although I tried very hard to keep her busy body and feet from touching the men, it did happen. I'm grateful that she didn't know what was going on. Every time either of them got brushed or bumped, it was a scene. The man on the aisle would nearly come out of his skin. I could imagine him yelling in fright, as if a spider was staring him in the face or if someone had caused him physical harm. The window guy would mumble inappropriate things under his breath. But when E didn't go to sleep, those mumblings turned into a full force, man size, temper tantrums. He would throw things against the bulkhead. His hat. Trash. Whatever he had in his hands. He would curse me. He would curse Everly. At this point, some of you will say, "Why didn't you move?" It was a full flight. I did talk to a flight attendant. I tried. No one really knew there was a problem unless you were sitting within earshot. Or really paying attention. She never cried. The things that bother me the most are maybe a bit crazy. The general intolerance. The inhumanity. You never know what anyone is going through, and I was shocked at the lack of response from other passengers. The ones that KNEW and chose not to say anything. Believe me, I don't need anyone to take up for me. I do pretty good at fighting my own battles, but the looks of sympathy from others around us angers me as I look back. They knew that there was a problem, and made a conscious decision to do nothing. I said nothing throughout this whole ordeal. Beginning to end, I was silent. It was one of those times that I absolutely do not regret my inaction. I could have said "I'm Sorry" a thousand times, and it would have meant nothing to either of them. It more than likely would have started a larger scale 'adult' conversation that MAY have escalated into one of us being hauled off the airplane in handcuffs or a gurney. So, if you're reading this and thinking I'm the biggest asshole on the planet for bringing my kid on an airplane...yeah, I accept some responsibility. I regret putting myself and my child in a situation that had the potential to turn into such a mess. Why do I feel like compassion takes a back seat to comfort these days? Why is it so hard for people to look past their own garbage and smile at a child? I still TRY and rationalize the situation. Maybe the aisle guy never had contact with kids and didn't know how to respond to having a child in such close proximity. Maybe the window guy had a mental disorder. Maybe, just maybe they were both just assholes that need a good old fashioned ass whooping.