All In Due Time...

We got to bring our girl home yesterday. She was having a few issues still, but nothing they felt like  couldn't be handled from the comfort of our own house just as well as from the hospital. For instance, she had started throwing up, really for no apparent reason. Before, it had been after we had forced yet another medication down into her tiny four year old tummy. She has pain meds, her heart meds, her "trying to get her to poop" meds, and her diuretics. That's a lot to force down a kid who feels bad, has yet to poop so everything's getting backed up, and who is tiny to begin with. So Lia was getting tired of the meds. And the hospital. And us. Who can blame her?

I told the cardiology team that I thought she would do better at home, and they agreed. I really have to give the docs and nurse practitioners that at Children's...they listen to the parents. They said they trusted us to take good care of her, make sure she stayed hydrated, and get her meds down her. They told us again how awesome she was doing, and they sent us home. Oh, how happy we were.  

There's really nothing better than coming home after a stay in the hospital. Home is home. We are all together, we are comfortable, and we can watch the Rangers from our pick of several different TVs.  Lia's not a big Rangers fan, and much prefers Disney Jr. She's the sick one, so she got pick in the hospital. Disney Jr was and still is getting old. There's some weird cartoon she likes where the rabbits talk, but don't have mouths...but I guess that's really off subject here. 

Home is best...especially coming home to a house that mom's been cleaning and doing laundry to get ready for us. Corey's mom brought over one of her famous, 10 course, brisket meals that we had for dinner.  Yummo...that's what I call comfort food. The boys were so glad to see us home when they got home from school.  Home is definitely best. 

Even though home is best, it hasn't been what I would call an easy transition. I know it seems like we've rocked through this whole thing flawlessly (and again, by all Fontan standards, we probably have)...it has been hard. Lia isn't comfortable. She had pretty much gone on complete strike as far as taking any pain meds, even Motrin and Tylenol. She is so incredibly stoic. She tells us she isn't hurting, so she doesn't have to take those meds. So for a while, we chose our battles and opted out of forcing those down her in an attempt to decrease everything she was having to take. She would get so worked up and anxious about taking any of her meds, she would end up throwing anything up we got down her. It just didn't seem worth it. I think in the past 24 hours, Corey and I have learned a few things. One thing is that even though she has the most determined, stoic look on her face, she IS still hurting. She still DOES need the pain meds, and she doesn't do well without them.  The look on her face, in her eyes...no child should ever have to look so grown up. Really, that look is more grown up than many real grownups I know.  It breaks a parent's heart to see it. She's just a little girl, a brave, courageous, determined, tough as nails little girl, and I won't have it. I won't. She's now getting her pain meds regularly. She doesn't like it, and it may take us 30 minutes to get the entire thing down her without her puking it right back up...but she's taking them. I think she feels better for it.  She hasn't thrown up once today...that throwing up during the night was about her hurting. If we can control anything...it will be that. We won't let her get uncomfortable again.  

She pretty much just lays around. I know that's normal...she should feel terrible. And she does. It's so hard to see. I know this wont last that long, at least that's what I hope... I'm ready for my baby girl's personality and spunk to return. This is really hard. Really hard. I just keep praying that she will return to us a little more every day. I keep thanking God for how well she's done. I keep asking Him for more patience for myself. I keep asking Him for guidance and strength to continue pushing through each hour. I know he's right here with us...most of those small prayers are being answered daily. By the way...she has pooped by now, several times. That was just one of those little prayers. ;-)

It's hard to tell how Lia really feels by looking at any of these pics I snap of her. She's fooling you with her posing talents...but here's one I took today. 

Here's what she's doing now...after Tylenol. :-)

We also got away for a few hours today for the boys' Awards Ceremonies at school. Here are some pics of them, their teachers, and their friends. They both won lots of awards and were recognized for accomplishments, but Jace won the Principals Award which is a pretty big deal. We are proud of both of them. They are pumped about being off for the summer. Here are the pics...

Colby and his teacher.  She was awesome this year. She sent home not one, but two bags of snack foods for the boys on the days of Lia's heart cath and surgery. 

Jace and his funny, adorable, very sweet teacher. She has her entire family praying for Jace's little sis. 

Colby and his friend Cade. We love this kid and his family. We are so blessed they are in our lives. 

Jace and his buddies from his second grade class...all great kiddos that make Jace smile. 

So there ya go...that's what's happening in our world these last few days. Thanks for the continued prayers. Keep em coming... :-)