Tuesday, January 29, 2013

A Diagnosis

Ding Ding! We have a winner. Two winners actually in regards to what the heck Callista has. RSV with secondary pneumonia. Oh joy... They have her on amoxicilin as precaution but the reality is there's no treatment for either of these. She just needs to get over it. Right now they've got her admitted as "comfort care", meaning she gets oxygen as needed, some saline breathing treatments and tylenol as needed.

We still have a day or two left in the hospital according to what the doctors have to say. She is okay being off oxygen while awake, but still dips into the 80's while she is in a deep sleep. Until she can behave herself while sleeping, she will remain admitted. We've had some excellent care this stay, although I still don't feel comfortable leaving her by herself. Daddy and I have been trading places as to who stays with her, just so we can get a shower in our own home and to sleep on a real bed. I've had to take off work for several days, but you do what you have to. Personally, I think there's a week minimum stay for Children's Hospital. It's probably in the fine print on that yellow consent form you sign in the ER! I will use the hospital time to finish the latest Stephanie Plum novel, Nineteen. (The Stephanie Plum Novels By Evanovich, Janet). It's junk food reading, good for those long, LONG days hanging out in the least fun place to be....

I've been doing a lot of soul searching (if that's what you want to call it) over the past week or so, and I am trying to find a better way to be there for my child more. Financially, we cannot afford me not working, but we've been working very hard to get out of debt. I think we are making some great progress, although we still have a long way to go. Thanks to everyone who donated to our give forward account over the past year. I wanted you all to know how appreciated it is, and to let you know it will go toward paying for outstanding bills we still have from our trip to Vanderbilt in 2011 (yeah, that long ago!). We never would have made it without the support of our friends, family, and amazing strangers.

Monday, January 28, 2013

Poor Baby

At 11:30pm on poor Callie's birthday we had to head to the ER. She wasn't keeping her oxygen above more than 90%. She is admitted now and on a low dose of O2 until she can recover from this congestion and coughing. They told us we can go home when she can make it through sleeping without any O2 help. As we go, she gets worse and worse. The doctors said the 4th and 5th days of viruses are the worst so hopefully after today we make a turn around.

There's not much more to share at the moment, but I will update if there's any news.

Friday, January 25, 2013

Something to Celebrate

See, baby burrito!
"What love has brought into this world...
What joy she has brought.
For this, our celebration, sings

Of far more than we ever thought." 

Happy 1st Birthday to my darling daughter.  It's so hard to believe my little 7lb 4oz little baby burrito is now almost 20lbs and a year old. We had her birthday party a little early since Daddy had to work the weekend of her birthday. We celebrated with some of our family and closest friends and it was such a wonderful event. And we have one spoiled rotten little girl! 
I invite you to take a look back on our very first post after Callista was born. The future was so unknown to us. We were so happy she arrived, but uncertain about the rest of our lives, the rest of her life. Not to say we are certain now, but there were moments in the beginning when we weren't sure how long we'd have her. And once you go through that as a parent and have to ask the question "Is my child going to make it?" you cherish every moment. 


Like the moment where you shove your baby's hands into a cake and she is surprised. Then she realizes it tastes good and licks her hands... The first time she has sincerely tried to eat anything for almost an entire year. THAT is one of those moments that we look forward to and never take for granted.  

In honor of Callista's surprise arrival, at exactly this time, exactly one year ago today. Happy birthday, beautiful butterfly. Mommy and Daddy love you so very much!
Pretty in Pink

Friday, January 4, 2013

Clinic Day

Clinic this morning went much better than expected. There was so much positive attitude I was in shock! Usually we are stuck listening to complete strangers tell us what our daughter can't and will not do. This time, it was praise after praise. I am always terrified of MRIs and ultrasounds. You just never know what is going to show up.

Today's MRI showed that her ventricles are even smaller than the last time they scanned. You could visibly see more brain matter in today's imaging than in the ones from July. We love our nurse practitioner from Neurology so much as she took the time to sit down with us and go through image by image and tell us what they meant.The renal scan (kidneys and bladder) showed no changes from the scan they did in September. So her vesicostomy is working and no more damage is being done to her kidneys. The urology doctor said her vesicostomy looked great as well.

The physical therapist was impressed with her new found head control, tummy time skills, and core strength. She told us that on her notes in September, she was very limp and had no head control, so this was a huge step forward. She gave us suggestions on how to work on sitting up, so we will be starting those ASAP! (And grandpa will be building her a therapy bench lol). We go back again in three months, and hopefully she will have enough upper body strength to qualify to get her first set of leg braces!

My proudest moment of all today was getting to share the fetal surgery experience and benefits with neuro (the awesome one). Callista performed well, wiggling her tiny toes and responding to touch on her feet. I hope that they start sharing the option with the soon-to-be SB moms they consult with. We were their first fetal surgery baby and we're FINALLY proving it is worth it.

On a side note: I bought some things for Callista's first birthday party today. WHAT?! Yes, that made it real for me. It's coming in just a few weeks and I have no idea how our very first year with our daughter has flown by so quickly. I am so excited to share the big day with family and friends.