Tuesday, January 8, 2008

The girls are crying!

I had one of my "moments" tonight! It's been a frustrating day for me because it is SO HARD for me to watch Kate be hungry. They had stopped her feeds this morning at 8...and they didn't get them started again until after 4. (The ironic thing: she was sound asleep for the PICC line placement...so they didn't even have to sedate her!) Then when they started them again...they started back at 10cc an hour through her G-tube! Kate had been fussy all night...and the Pedialyte and washcloths are just not cutting it anymore. So...at 11 pm I asked when they were going to up her feeds...and they said the orders were 1cc every 8 hours! Well...that got my tears rolling in frustration and sadness...as I sat and watched Kate's tears roll due to her hunger! It is so hard for me to watch her be miserable...poor thing has so much going against her...she at least deserves some satisfaction from some food. I hate that they have to give her medicine to make her sleep because she is so hungry.

Well.....evidently the tears (on my part) were enough to get the nurses to question the orders and after a talk with the doctor...they can now advance 5 cc every 4-6 hours...plus she can have all the Pedialyte she wants! Well...I'm satisfied for the night....but guess I need to get up for rounds and see when she can actually have something with flavor and substance. Feedings are the hardest thing for me! Poke her...take her blood...wake her up from a sound sleep to take her temp....but DON'T make my baby suffer cause she is starving!!

I know they have Kate's best interest in mind and her eating/fluid balance is a major hurdle we have to conquer...but that doesn't make it any easier on mommy! So everyone who thinks I'm so strong....NOT so much tonight!

Other than that...Kate had a pretty good day. The PICC line placement went fine. The central line in her groin finally came out tonight. The area is so bruised and there are so many cuts/scratches and holes from needles and stitches...I was so grateful to get that out of there. It's got to feel better for her to not have those stitches and plastic pieces in her leg everytime she bends her leg. So now, she has the PICC line in her upper left arm and an IV in her left wrist. I gave her a really good bath tonight and got her dressed in her adorable green butterflies and flowers. They were able to come down on her high flow oxygen...and the RT (respiratory therapist) said that probably within a day or so we could be back to the normal oxygen cannula. She is tolerating being off the milrinone just fine.

I did treat myself to a 15 minute back massage by a massage therapist who sets up shop in the hallways of the hospital during Kate's procedure. It was wonderful...as I did something to my back over a week ago and sitting on my bed, hunched over the laptop doesn't help.

Things seem to be going fine at home...besides a call from Cathy today that Seth had locked the door from the garage to the house! Oops! Seth went back to school and loved it. I'm sure he is keeping Grandma very busy. I sure do miss my boys though.

Well...here is a glimpse of a little bit of happiness Kate got today! The only thing with any flavor she has eaten in 4 days! You are a trooper Kate!


Today marked day #50 in our latest hospital stay. It hard to believe we are on our 7th week. It's been 120 days in the hospital out of the last 168 days...that is only 48 days home since July 25th...overwhelming (and sad) when you think about it...but I found this today to keep me going: "Do not throw away your confidence; it will be richly rewarded. You need to persevere so that when you have done the will of God, you will receive what He has promised. " Heb. 10:35-36

9 comments:

Vanessa said...

I really don't understand why Kate isn't allowed to eat. Maybe you mentioned it before but I wasn't following as closesly. I'm sure that is so hard to see your baby be so hungry. I'm glad she can have pedialyte and it looks like she was having a good time eating the popsicle. Like always Kate is in my prayers. That is wonderful news about her tolerating being off the heart meds, one more huge step for Kate!!!

Anonymous said...

Tears can flow, but you are still strong! They aren't as in tune with Kate as her Mommy, so keep telling them what you want for your little girl. Great news about her being off the IV heart medicine. Go Kate, go!

Anonymous said...

You, Andy, Seth, and KATE are persevering! (Along with all of your wonderfully supportive family)

Being off the milrinone is a huge step for Kate and you too!

Keep your head up, and get the massage whenever they offer! :)

Susan

Anonymous said...

Krista - Looks like you found the perfect Bible verse for you yesterday. Nancy H. (SCS)

Samantha said...

I agree with the other poster who mentioned that you are still incredibly strong, even with tears...hang in there...I know it is so hard on you and your family. I am so proud of her for coming off of the Milirone...that is a huge step in the right direction. I cannot believe how many days you guys have been stuck in the hospital...I just hope that when Kate is well enough to go home, she can stay there for a nice loooooooooooooong time!

Big Hugs,
Samantha

Anonymous said...

KK--

Do you know how many times I have used tears to try and get what I wanted? It doesn't work often, but it *DOES* work!! Good for you!! You're just being real, which is all that matters.

XOXO,
Mira :)

Melissa said...

I love the pictures of Kate eating the popsicle. I can understand your frustration and you are so allowed to cry. Hoping today sees her eating some real food and a happier girl!

Kathy said...

I'm with you on the starving issue....1cc an hour...so ridiculous!! I'm glad they changed their tune and are increasing feeds at a faster rate. You know...all the times when they would tell me to stop feeds before a procedure (I would cheat and sneak him food)...Just Breastmilk...that digests fast enough...and I never had any problems. Now...not telling you to break the rules (you're doing so good)...just telling you that it would break my heart too. Isaac lost so much weight on our last hospital visit...makes me mad! I don't have a chub-a-lub anymore!
I'm glad that you were able to get a 15 minute relaxation break...just a drop in the bucket...but, a good drop. And I can't believe that you've counted all those days. My days would run together...never even knowing what day it was today...so, I could never count...my brain was fried a LONG time ago!
Take care,
Kathy

Anonymous said...

How frustrating...how long did you work to encourage her to eat someting and now you have to follow orders to limit. Whew! Tears can sometimes be very cleansing and healing. In this case it also worked to get some action! I'm sure after all these days you feel like your on auto-pilot but you're just a mom trying to do what's best for her little girl with LOTS of supporters reading and praying daily! Feel the hugs!!
Donna