Giggles and Tantrums

 Yesterday, this happened. Big smiles for daddy. He was tickling her and she gave us some great smiles. Look at that second one, she's even making eye contact. Simply amazing!!!

Then today happened. I gave her a little too much liquid, which she promptly brought back up, all over her clothes. Then she was wet and cold and couldn't have her fingers. I detached her from Grover and let her run for a minute while I cleaned the machine. She took this to mean, it was time for her first tantrum. Screaming at me. Actually yelling. A few years. Then she laid down and actually kicked her feet on the ground, while looking at me! To be honest, I was freaked at first. I thought something was wrong with her. I whipped off her clothes and cleaned her tubie and her tube, warmed her in up in some jammies. I changed her socks (on her hands) and the second the sock was off her hand, she sucked her fingers and stopped crying. Just like that. Little stinker, threw an honest to goodness fit. This is a good thing, annoying, yes, but good. She wanted something she couldn't have, and let me know about it. Now, hopefully next time, will be giggles :)

And There She Goes

Carlee is officially mobile. One day shy of two weeks post-op and she's mobile! We have ordered a much cuter (and smaller) back pack for her. When she falls over, she resembles a turtle on its back. She's too heavy in the back. The bag is half as long as she is. The new one is pink and a rabbit. And cuter. But she's off. We have post-op visit tomorrow and we'll have the all clear for everything else. Her site is healed up nicely. Her little button covers are so cute! (Thanks Mrs. Tiffany). She's doing well. She's getting feisty too. Tired of sitting so much and really angry she can't have her cup. She can only have a little bit at a time, so we give her her juice in a newborn size bottle so at least it looks full. All in all, she's handling it really well. Her cheeks are rosier and her thighs a teeny bit thicker. We've heard more sounds coming out of her mouth. She's amazing.

Our New "Temporary" Normal.

Things will get back to normal, as normal as our lives ever can be. But for right now, we are living in a temporary normal. We get up. I change Carlee and her bandages, haul her and her swing downstairs. Replace her bag and hook her back up to her feed. Then I try to clean up what the goblins have destroyed in the middle of the night. I'm not sure what happens, the kids are asleep, but somehow the house gets destroyed at night. Shane is off to camp this week, so there goes my real helper. Catch up on laundry. Life seems a bit easier, which is weird, Carlee can't move around a lot right now, she's mostly in her swing or being held. I don't have to feed her, so that's a bit more free time. But it's weird, it's like things are easier, but more hectic. There are more things to keep track of. She can't have much by mouth, everything has to be by syringe, and measured carefully. People have brought us dinners, so that's been really helpful, no cooking! At nap we haul everything back upstairs and after nap back down, and back up for bed. If nothing else, I should be a little stronger after this. She goes back to the doctor's on Monday, hopefully they'll clear her for walking around. The site is really sensitive right now, if something were to happen it's a whole other surgery. After it's all healed, it's not as serious. So we're just being really careful right now.

She's actually doing a lot better than I thought. Not being allowed to have her cup, I thought would be horrible for her. She's quite happy to get her juice by syringe, but she's not angry about not having her cup. I'll be happy when she's back in her crib, but until that site heals, there's no way. She is actually sleeping better in the swing than in her crib, of course that may be the pain meds talking.

Tomorrow will be our first test, leaving the house. I have a sitter, so it'll just be me and Carlee, but that's for the best. We'll get to try out her backpack hook up. Also, her machine beeps. Loudly. I wanted to name it so I could yell at it. It's name is Grover. :)

A New Course.

We have emerged from our hospital stay. Whew, what a crazy few days. It all started at 3am when we had to get up to get to the hospital by 5:30am. We hit every single green light. We were in the hospital at 4:30. The check in guy said "You know you can't go up there until 5:30, right?" Um. No, I didn't. So I found an uncomfortable bench and did a Bible Study, while Ladybug slept. Finally we were allowed upstairs and the process of waiting began. Wait to check in, wait to be weighed, wait to see the nurse, wait to see the anesthesiologist, wait to see the doctor. Then the hard part of waiting came in, waiting for her to come out of surgery. There was a small delay, her awesome GI doctor had to assist the surgeon. He really didn't want to do the surgery the GI doctor had recommended. He said we could come back in eight weeks and add the Jejunostomy part later. I didn't want her to have to go through another surgery, so he said he'd "try" to do it at one time. He couldn't, but our GI doctor saved the day and got it done. I paced and tapped. I couldn't get my computer logged into to the connection so I read, and paced some more.

Finally they called me to recovery. Poor girl was out cold. Her little eyes kept fluttering and then closing. Her belly looked okay, not what I had imagined, but not too scary.

 We were taken upstairs and settled into our room. All the tubes and attachments had me a bit freaked out. Our roommates were blasting Spanish music and very annoying toys. Thankfully they were discharged after a few hours. I settled in for the afternoon, waiting for Johnny to get there. Doctors came in and out and no one was really answering my question. "I have NO idea what I'm doing." We had two really fantastic nurses. They got as many answers as possible. Home health people came and went. We were told we were staying two nights.

  I prepared for that. Johnny stayed the first night with her, so I could relieve the babysitters. My brother stayed the first night, which was an amazing help. Ladybug was doing well, but we still didn't know how to feed her or anything. The tv channels weren't so great, and I don't watch much t.v. anymore anyway, so I read a bunch of junk tabloids. I did watch the Zimmerman trial because it was rather entertaining. Mostly, I watched my girl.

There's a funny story I have with the diapers they use in hospitals. I always thought newborn babies had a certain scent. That scent always went away when we left the hospital. Well, Sam was hospitalized at 5 weeks old for RSV and I smelled the same scent, that newborn scent. Only then, after 3 children did I realize the newborn scent was really the diapers they used! Maybe you had to be there, but it was so funny. This time at least I realized what the scent was, and it wasn't a newborn. It's such a pleasant scent to me, that I almost teared up.

Finally finally the nutrition people came and showed me how to run the machine and we got charted some more with how much to feed her, and then we were told to go home. Just hours before we thought we were spending the night again (I even had sitters lined back up). We said goodbye to our nurses, and I was able to leave a nice note for them, because of the awesome binder that was made for us came with note cards. So we went to leave and it's POURING. We used valet and got girly comfy and left. It, literally, took 35 minutes just to get out of the hospital complex because of the rain and time (5pm) and traffic.

And then we were home. We had to figure out how to get all this stuff in the house and get her set up. I felt like I was coming home with a newborn. I was tired (though not in pain), meals were delivered, new things to learn, even laying everything out for a diaper change. But, we figured it out. The night went really well. Carlee is sleeping in her swing for now because the tubes stay on all the time, and I'm terrified of her pulling it out. After it heals it will be okay, but right now it would mean another surgery. So we're keeping her confined. She slept really well. The machine woke me up with a terrifying beep at 4am, but that was the only exciting thing that happened.

So we're settling in to our nearly charted path. I'm sure we'll get it all figured out soon. I'll be happy when post op visits are done and we can get on with our lives. Thanks everyone for your help and your prayers!

A Ton of Bricks.

I stumbled onto a special needs blog, Love that Max.
She had a list of 20 reasons moms of special needs children "rock". I listed a few of my favorites.

6. Because we gracefully handle the stares, the comments, the rude remarks. Well, mostly gracefully.

9. Because we aren’t just moms, wives, cooks, cleaners, chauffeurs, women who work. We are moms, wives, cooks, cleaners, chauffeurs, women who work, physical therapists, speech therapists, occupational therapists, teachers, researchers, nurses, coaches, and cheerleaders. Whew.

11. Because we also worry overtime, but we work it through. Or we eat chocolate or Pirate's Booty or gourmet cheese, which aren't reimbursable by insurance as mental-health necessities but should be

18. Because just when it seems like things are going OK, they're suddenly not OK, but we deal. Somehow, we always deal, even when it seems like our heads or hearts might explode.

source

As I realized that I related to about 90% of her list, the realization smacked me in the head like the cliched "ton of bricks." I am a special needs mom. My daughter has special needs. After this week, my daughter will be considered "medically fragile." If this had all happened a year ago, they wouldn't have called me for Carlee. We aren't "medically fragile" or "therapeutic" trained or approved. Our home wouldn't have been chosen for her. We wouldn't have been the best match. And yet, here we are. Three days away from a surgery that will flip our lives. Our daughter has officially been ours for just over a month. God's timing was rather perfect. She's ours and no surgeries or new titles or labels can take her away. I really have no idea what I'm doing. I read, and read, and read all I can about her issues, but they are so unique. I research therapies and surgeries and toys until my eyes and head hurt. We go to appointment after appointment. I've gotten really good at knowing which doctors have the least wait time, and how to get in when we need to be seen. And it dawns on me, it's just starting. She's three years old. She's dealt with more in the those three years than most people deal with in a lifetime. Her trauma and her medical issues, I've had my gall bladder out, that's it. Her needs outweigh everything I've known. And anything I ever thought I'd be dealing with.

I'm about to get down to business. Two boys go off to camp this week. I'll have a day and half to whip this house into order, throw some freezer meals in the deep freeze, and get the laundry done. When we come home from the hospital, it's all going to be different. It's a surgery I've wanted her to have for a long time. Something she desperately needs. But I'm nervous. It's all new terrain for us. We will still be heading to Baltimore for yet more ways to help her. Maybe the tube will get to come out. Maybe it won't. Maybe she'll talk someday. Maybe she won't. I'll never stop hoping for her, pushing her, or praying for her. So this becomes our new normal. Heh, who said normal was fun anyway!