April 22, 2009
Tuesday, 4/21/2009 1:41 AM
So we have a new room... Caylee & I.... it's bigger, with a window, a big window. We have the most beautiful view of the roof & parallel staircase, BUT, with a window! I'm excited for the toilet too, but most for the natural daylight.
We are still on for placement of the G tube on Thursday. I still don't know what time though... Her reflux is actually getting stronger, which they said would happen. Her muscles are gaining strength each time she uses them to reflux, now we are consistently losing volume with feeds. The tube will be very useful there.. it's not feasible that she could fully nipple feed yet, let alone re-feed what she does take.
She weighed in at 9 lbs, 12 oz tonight. She is continuing to gain weight, in spite of the volume she's losing, so they are not overly concerned with that part yet.
I took the first 2 classes in the infant massage courses offered by a licensed therapist of the hospital. She also does parent massages 2 days per week so i am signed up for that tomorrow!
The infant massage classes are just incredible. It's the total body language of the infant, learning their cues and sounds, & using touch and massage to comfort & bond with baby. The field is showing great success with improving health & happiness of small children. The classes practice on dolls, then there are follow ups where physical therapy comes to the room and documents any changes/improvements in baby.
Last week... & we will be HOME, and stay there this time :)
Tiffany Turbin :)
Posted by Amber Kimberly. Posted In : Caylee
April 21, 2009
Sunday, April 19, 2009 8:26 AM
So progress is slow, but Caylee is definitely making it! She is consistently tolerating far more than she was when we got here, just not nearly enough to fully feed orally. She is having generally one really good feed per day, a couple of ok feeds, and a couple of poor feeds. That is pretty inconsistent, but she is not flat out refusing at every feeding anymore, which is a huge step in the right direction. This is going to be a long road, but i know she will ... Continue reading...
Posted by Amber Kimberly. Posted In : Caylee
April 17, 2009
So the G tube process is rolling. She has just not made enough improvement to show that she will be there in a reasonable amount of time for us to stay in the hospital and keep working on it. Dr J feels if she had gotten to him even 4 weeks ago, she would be fully nipple feeding. We lost a precious 3 weeks of nipple feeding by going with the NJ tube. It's not something this hospital would have done. BUT... shoulda, woulda, coulda! That doesn't do us any good now.
She is scheduled for ... Continue reading...
Posted by Amber Kimberly. Posted In : Caylee
April 15, 2009
Wednesday, April 15, 2009 2:26 AM
We Hadz a bad day!
Today went terrible... I'll be frank.
Over the course of the day she took a total of 42ml (almost 1 1/2 oz). She actually napped for a total of 90 min, which was in my arms in the chair with me napping too.... Only sleep I got too.
Dr J came in during the 9 am feed and asked if he could try. He sat her upright just like during the study. The nipple barely touched her lips and she's gagging. He says she's not choking, that's a learne... Continue reading...
Posted by Amber Kimberly. Posted In : Caylee
April 14, 2009
Monday, April 13, 2009 2:48 AM
Caylee w/the Easter Bunny!
So would you believe the "easter bunny" went from room to room to visit every child in this hospital... how sweet. I saw it on the hospital TV channel that he would here.... Caylee and i took a snooze in the recliner this morning & when we woke up there was a gift bag on the couch.... the nurse said it was from the Easter Bunny.... We missed the Easter Bunny!!! The nurse made a couple of calls for me and they were able to stop back... Continue reading...
Posted by Amber Kimberly. Posted In : Caylee
April 12, 2009
Sunday, April 12, 2009 1:05am
Wow... as they day has gone on today i have become more & more angry!
This started first thing this morning. a nurse came in and pulled out her NG tube for the day at 9am. She had received a pump feed of 100ml from 6-7 am. Needless to say she wasn't hungry yet at 9am, & still sound asleep. They bring in a full bottle of my himdmilk, and mix her multi vitamin, iron, and BP meds & expect her to want to nipple it. She's gagging and not having it OBVIOUSLY. S... Continue reading...
Posted by Amber Kimberly. Posted In : Caylee
April 11, 2009
Thursday, April 9, 2009 10:23pm
Baby had a big day today....
Her upper GI was pretty much the same as the last 2... normal with reflux. She got a total of one ounce of barium this time for the small bowel follow through. She was refluxing by 5ml. It took about 2 hours from mouth to bowel- they took pictures every 30 min for 2 hrs. She had a hard time with the fasting.... 3 hrs before and until they completed the follow through.
MRI at 8 pm this evening. Needed to fast 4 hrs befo... Continue reading...
Posted by Amber Kimberly. Posted In : Caylee
April 10, 2009
Well, in case anyone hasn't been in the loop... here is a quick summary of the past week....
Though uncomfortable with the NJ tube, Caylee continued to gain weight. She weighed in at 9.0 lbs last Monday, 3/30. She seemed to be constantly gagging and vomiting anything she did take by mouth. Sunday morning 4/5, she pulled out her NJ tube during a battle between baby & mama to suction the reflux out of her nose; baby won... We went to the ER... Although Caylee's new pediatrician said he ... Continue reading...
Posted by Amber Kimberly. Posted In : Caylee
April 6, 2009
First of all, let me apologize for the lack of posts on here lately. With Caylee being home, Tiffany has her hands full and doesn’t get out the updates like she used to. Which I guess is a good thing – when I don’t hear anything, that means everything must be OK!
Sunday, April 5, 2009:
I find out that while Tiffany was trying to clean out Caylee’s nose, she [Caylee] pulled the feeding tube out. Our mom was headed up for a visit and they were waiting it out to see if Tiffany could... Continue reading...
Posted by Amber Kimberly. Posted In : Caylee
March 28, 2009
Thursday, March 26, 2009 11:24 PM
Subject: We're Home!!
So we finally busted Caylee out... late monday afternoon going into evening. We got home monday night, and brian went right back to work at 5 am tuesday morning. It's been challanging, but possible. She's home on an NJ feeding tube. We have a pump hooked up to her for 20 hours per day. There is a medical supply company that leases us the pump, ships the needed supplies, and her formula containing small bits of gold ( I figure it ha... Continue reading...
Posted by Amber Kimberly. Posted In : Caylee
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