Tuesday, May 29, 2012

The Button!

We had an appointment with her GI surgeon today and I was successful in convincing him that we NEEDED to switch from the g-tube to the mic-key button. We've had it for less than a day and I love that thing! It's so much smaller than the g-tube and she can finally wear normal clothes again. In fact, she's wearing a onesie now! Of course we had kind of a long day so I've got a cranky baby girl right now. As soon as she is in a better mood, we're getting some TUMMY TIME! Yay!

Although we've been to the doctors at least once a week and even had a trip to the ER, everything is going smoothly. She's growing, 12 pounds 3 ounces today! I cannot wait for her to begin PT and OT, it's time to crack down on this and kick some SB butt. We always have scheduling conflicts (everyone thinks we don't need to work or something?) so it's hard to squeeze everything in, but we're trying hard!

I thought I had more than a second to write a post, but of course the princess decides she needs to be held now. LOL. More updates next week after SB clinic :)

Wednesday, May 23, 2012

Not really related

I just have to post this here because I know so many people have no clue this is out there. You earn SO much money back. It's especially great for things you already buy (diapers anyone?). Go sign up and use it! It's so easy. Instead of going directly to a website, you go through ebates and click there. Then you earn a percentage back from your purchase. It's nice to get a check back every three months :)

Sunday, May 20, 2012

Appointment. Appointment. Appointment.

Tomorrow begins our long line of appointments. It's been a good few weeks being able to be home every now and then, but now we get into the seriousness of what spina bifida is. We have an appointment tomorrow afternoon at Starlight to get her evaluation done there so she can get PT and OT at home. On the 29th, we go in for her g-tube, and hopefully they'll switch it to a button. On the 5th, she has her first PT evaluation at COOR and on the 7th she has her OT evaluation at COOR. On the 8th we have a LONG day at Children's. Myelo clinic, MRI, ENT check up, and neonatal clinic. On the 15th she has her next set of shots. On the 21st she goes in for a urodynamics test. I have no doubt that more appointments will be squeezed in there somewhere. I'm hoping whoever does the evaluations has a positive outlook. Too many times everyone wants to tell us what she can't do, what she won't do, etc. Instead, tell me how you're going to help her and what we can do at home. That's all I ask, a little bit of optimism.

On the home front, some tough decisions have to be made. I've been put into a position I don't want to be in, and I am not allowed to talk about details. But please pray that I am guided to making the right choices. Throughout everything our family has been through, things just keep stacking up, even now. I have to make the choice that's right for my family, but right now I don't know what that is... I can do what is financially right, or I can do what is emotionally right. 

Overall, our two weeks home have been wonderful. It's so nice to wake up and grab my little girl out of her crib and take care of her. I'm not saying I enjoy those 3am feedings, but I enjoy her ;) I'll update soon after our evals and let everyone know the results. <3

Sunday, May 13, 2012

Happy Mother's Day

Happy mother's day to all my mommy friends, and of course, my own mother and mother in law! This mother's day means so much to me not only because it's my very first, but because we worked so hard to get here and when I look at her, I know I was meant to be her mother. Someone posted this in a fetal surgery support group I am a part of, and I wanted to share. I don't necessarily believe God did this to my precious Callista, but this does bring a tear to your eye because of the truth that's in it.

Finally He passes a name to an angel and smiles. "Give her a disabled child".
The angel is curious. "Why this one God? She's so happy"
"Exactly," smiles God. "Could I give a disabled child to a mother who does not know laughter? That would be cruel!"
"But has she patience?" asks the angel.
"I don't want her to have too much patience or she will drown in a sea of sorrow and despair. Once the shock and resentment wears off, she'll handle it. I watched her today, she has that feeling of self and independence that is so necessary in a mother. You see, the child I'm going to give her has his own world. She has to make him live in her world and that's not going to be easy."
"But Lord, I don't think she even believes in you"
God smiles, "No matter, I can fix that. This one is perfect - she has just enough selfishness"
The angel gasps - "Selfishness? is that a virtue?"
God nods. "If she can't separate herself from the child occasionally she won't survive. Yes here is a woman whom I will bless with a child less than perfect. She doesn't realize it yet, but she is to be envied. She will never take for granted a 'spoken word'. She will never consider any 'step' ordinary. When her child says "Momma" for the first time she will be present at a miracle and will know it. I will permit her to see clearly the things I see...ignorance, cruelty and prejudice...and allow her to rise above them. She will never be alone. I will be at her side every minute of every day of her life because she is doing my work as surely as if she is here by my side"
"And what about her Patron saint?" asks the angel, his pen poised in mid air.
God smiles "A mirror will suffice" 
While our situation is not ideal, it has been ours,  and we will grow with it. 

Friday, May 11, 2012

Stupid feedings

I know babies have to eat. But feedings have been quite an obsession with Callie's doctors. She doesn't eat enough, doesn't gain enough, the calories get adjusted, the formula gets changed, etc. Now that she has the g tube, she's been putting on weight like crazy. They're still saying we need to go up on feeds. But with her reflux being as severe as it is, her poor little tummy just can't handle it. We tried going from 70ml to 75ml and all it did was make her throw up. And ever since then she hasn't been happy with feedings. We dropped her back down again, and she seemed better, but her stomach has been bothering her ever since. She had a GI doctor visit scheduled for Monday which I was anxious for, just to make sure everything was still in the right place and working okay, but they rescheduled it to the 29th. I think part of it is the prilosec not matching her new heavier weight, but we need to ask her pediatrician what we should be giving her. Poor little thing just doesn't feel as good as she should. She's gaining weight so leave her alone please...

I am counting down the days to summer break from work. I know I just got back, but I feel like I did not get that adjustment time that normal mommies get. They have six weeks or more home with their babies, and my weeks were spent driving to and from the hospital. So we had to jump right in to balancing work and baby, and it's been interesting. We love having her home though. I try not to be too paranoid at every little thing that happens, but it's hard. In the back of my mind, I always think about the fact that we could have to go back to the hospital. It's bad juju to think about it all the time, but sometimes it just creeps up on you. Lack of rest probably contributes to this too, I'd guess.

Not a very interesting post this week, but will have more updates as our appointments start bombarding us within the next few weeks. Ugh.

Monday, May 7, 2012

Home Again!

After two long months, we can finally say we are home again. We got to bring Miss Callie home on Wednesday afternoon. She has been keeping us pretty busy. Overall she's been a really pleasant child to have home. She is a happy baby and satisfied just to be cuddled and stare at your face. Every day we see a little bit of a new development for her. Yesterday she deliberately reached out to bat one of her toys which is huge progress for her. She has gotten so much better at tracking faces and objects. My favorite thing is in the middle of the night during her sleep, she will randomly burst out laughing. It's always a surprise and always makes us laugh (quietly of course). At her check up she weighed 11 pounds. Her newborn clothes are officially off limits now, the little chunker. I need to find the time to go through her clothes and find the things she actually can wear. The g-tube leaves us with very few options other than loose dresses or t-shirts and pants. We have a hundred onesies that I'm hoping she will still fit into when she gets her mic-key button. Her follow up appointment is next week so maybe they'll tell us when we can change during that visit.

The new Callie rule in the house is that Callie sleeps while you are awake but as soon as you are asleep, she is magically wide awake. The sleep deprivation is worth it just to have her home. And look at the bright side, I caught up on a lot of TV over the last few nights! Thank goodness I am still working part time, I'm basically a zombie. We were glad she got to come home earlier than expected but I do have to admit it would've been handy to have the nurse at night. We are still working on getting skilled nursing during the day through the waiver but I guess that can take a long time.

Other than that, we've been enjoying our time at home with Callista. This week starts the bombardment of everyone and their brother needing a piece of us. Wish us luck and sanity!