Tuesday, October 11, 2011

Wow! It's been 5 months...

...since I last managed to find time to write a post!

Needless to say, life has been crazy. Or it feels like it, at least.

So, to start where we left off...

Jillian had her second open heart surgery on May 12th and did extremely well! The day before, JR, my mom, Oliver, Athan, myself and of course Jillian all wore Superman shirts while JR and I took Jilly to her pre-op appointments. Really, it couldn't hurt to summon the strength of the man of steel, right? And, I'm pretty sure it worked! We were told when we first found out about her condition, to plan for 4-6 weeks for recovery (if my memory is correct, which really? Who knows?!?!) Her surgery was bright and early on a Thursday and she was released to go home on Tuesday. Yes, only FIVE DAYS of recovery! Thank God for that!! We were told to expect her to have horrible headaches, which would cause her to cry for days or even weeks straight. We were told it would be possible that she would need to be weaned off the pain meds post-op. We were told that pretty much everything we had worked on with her physically, with her physical therapist, would need to be done all over again. We were told she probably would not be able to put her hands above her head or even bring her hands in to the center of her body. There were so many things we were expecting to happen after surgery- all of which would cause some sort of delay, big or small.  Well, none of these things happened! The morning after her surgery, JR and I walked into the Cardiac ICU and heard a baby crying at the top of their lungs. We looked at each other, like, "Oh no! Is that her?" We rushed down the hall to her room to find her contently sitting in her bed, with her arms behind her head and a look on her face that was something like, "Aww... just relaxing...." Her nurse assured us that she was indeed having headaches, but the pain meds were making them tolerable for her and, "oh just wait until she's off the 'good stuff'. Get ready for crying..." I listened intently as the medical staff did their rounds that morning, as I had done with her first OHS, and was surprised when the head doc that morning kinda laughed after a pretty uneventful report from one of the fellows. "So... she's doing fine?" was pretty much his only response, followed by, "Ok then, let's move on," and off they went to the next kiddo. Less than 24 hours after surgery, she was discharged from the CICU and moved to the Cardiac Progressive Care Unit- the step-down unit at Children's, on nothing but Tylenol for pain. Surely, I thought, the headaches will be coming... But they never did. Thankfully, Jillian has nice, wide-open, almost normal Pulmonary Arteries, which allow the blood from the top part of her body to flow with much less pressure than other little one's with her condition. Because of this, we're told, she didn't seem to get the headache's that are common after this surgery. (I won't go into the details of what the surgery entailed as far as changing the structure of her heart, but suffice it to say, her circulatory system is nothing close to normal, thus the pressure issues.)
The days that followed were (thankfully!) pretty uneventful. We spent all of Friday, Saturday and Sunday with Jilly in her room, half waiting for her to start screaming at any second. But still, she seemed to be fine. She found ways to entertain herself- slapping at her nasal cannula until it was just right in her mouth so that she could use it to blow bubbles (hehe the positive of being on oxygen!), shaking a rattle while babbling or bringing her toes to her mouth (another thing we were told she would not be able to do...) Also on Sunday, we were surprised with a visit from my Aunt and Uncle from Minnesota who were in town for my brothers wedding! :):):)
Monday JR went back to work and at that time we were still unsure of when Jilly would be going home. Our nurses were guessing, "maybe by the end of the week... maybe Thursday?" so Monday afternoon when Jillian's surgeon walked in and said he thought she'd be leaving the next day, I was shocked. Her surgeon misinterpreted my shock for disappointment, thinking I thought we were going home that day. "No doc, I'm just shocked..." was my response, I'm pretty sure...
We left the next day by noon (Jilly wearing a Wonder Women t-shirt!), happy to have our baby girl back at home and ready for craziness to follow, in the form of my brothers wedding, moving, Athan's birthday, t-ball for Oliver, weekly PT and OT appointments for Jillian along with... more appointments than I care to think of, JR's and my anniversary, lots of laughs and tears, me taking a condensed CNA class to be Jillian's at home care provider, Oli starting pre-school and bringing with that a round of sickness for us all and Jilly hitting about a million milestones... sitting, crawling, three teeth, saying, "mama" and now pulling up and cruising along the furniture.
Needless to say, I am so proud of my sweet girl! We still have some hurdles- she still is not eating very well by herself so we are continuing her g-tube feeds through the night, she is still on oxygen at night and off and on during the day, depending on how her sats are, the winter is coming so we are trying to prepare the best we can, not entirely sure what that will bring with it and of course there is another surgery, which although it is still looming far off in the distance, seems to keep itself somewhere near the front of my mind. 
I think the easiest way to sum up the last five months is to say that our life continues to be a roller coaster, full of ups and downs, and sometimes it's a confusing place for me to be- on the one hand I almost desperately long for someone else to understand, but on the other hand my biggest wish is for no one else to ever have to understand. Some days I feel like life couldn't be any better- I have an amazing husband, two boys wise beyond their years and a sweet little girl who continues to inspire me everyday- and other days (though those factors still remain positives) I feel like this is all too much to handle, wonder when it will get easier, call up the best friend I could ever ask for to get out for some much needed Mommy time and priceless laughs (Thank you, Tammy!!), go home and kiss my sleeping babies and wake up to do it all again the next day.