Thursday, March 5, 2009

A little discouraged...

It ended up being a long day with Alex. Something was bothering her all day and it was tough trying to figure out what it was. Are they weaning her too fast, is she having withdrawal, is she hungry, does she have reflux or gas, or is she just feeling icky? At times she was inconsolable which was hard because I just wanted to make it better. Feeling helpless is the worst. Tylenol and pain meds only seemed to help for short periods of time. Most likely she was hungry and it took the entire day for the docs to consult the dietician, change her feeding schedule, make sure she tolerated the new schedule, and put in an order for an increase. She finally got the extra ounce during her 11pm feeding.

An OT (occupational therapist) visited Alex today and worked with her to see how she would do drinking from a bottle. She had a hard time latching on due to her suck being really weak and they said it often takes little ones some practice to coordinate sucking, swallowing, and breathing again. They will continue to work with her each day to transition her to bottle feeds. PT (physical therapy) also stopped by but didn't get much further than asking questions since Alex was not in the mood. Soon after these visits we learned that Alex may have another UTI. They are not 100% sure so they took another urine sample tonight. I try not to get discouraged when I feel like we are taking two steps back but it's easier said than done.

Alex was happy to see her daddy arrive this evening and was smiling at his barking noises and other tricks. He has an amazing calming effect on her at times. It made it easy for her to finally fall fast asleep in mommy's arms. I cherish those moments and know we won't be able to hold our baby girl like that forever.

It's midnight now and Alex is awake and rooting. Guess she wasn't ready to go down for the night...although we are.


Anonymous said...

Good morning Diffee's don't lose heart often times we experience set backs but you all will overcome. Still praying for the little pumpkin, and her Mommy and Daddy. :o) Cyn GW

Anonymous said...

Morning to you all. I hope the sun shines bright and gives you a good day today. I'm proud of you for being the great parents you are. Chin up, things are looking better, even with the small setbacks. God loves you along with tons of others. Keeping the prayers up for you.
Nana Carol

Lacy said...

It's so hard trying to figure out what is making them uncomfortable. Autumn was the same was after her decompression surgery. She did go through the withdraws as well and that is always hard on them. It WILL get better and she will be back to normal soon. Suck/swallow was hard on Autumn so that is why we gave her the g-button when she got her trach but within no time she got it down and surprised everyone. Hang in there Alex is a fighter!!!

Anonymous said...

Everything is gonna be alright :) Overall, she looks wonderful and has taken several steps forward recently so if she needs to go back a couple, that's perfectly fine. Take it easy...
~Auntie Natalie

Kathryn said...

Hey guys,
Don't get discouraged. Weigh out the magnitude of the set backs. She has been through so much and has overcome so much that the things she is going through now are minimal. No ventilator, right? Not in ICU, right? I know it is hard because as parents we just want to fix them and make everything better and right now you can't. But you are in the best place for her to get what she needs and she is getting it. Try to focus on the positive and not get discouraged when the steps back come. She is getting better, and as she has shown in each step will get better on her own terms. I love you and am thinking of you constantly.
HUGE hugs.
Kat (Bob and RJ too!)

Anonymous said...

Hi Nicole and Jimmy,

Don't be discouraged friends, Alex is such a fighter (and so are both of you). Alex has made incredible progress! Praying for a better day today.