Apparently ice cream covered with gravy makes you gain weight. Imagine that! ;o)
Actually, we doubled Kennedy's food intake (or at least as much as she would let us, you just can't MAKE a baby eat!) and it worked! She weighed in yesterday morning at 10 lbs 15 1/2 ounces! That's a 9 1/2 ounce gain from the week before! FINALLY she is doing what they want her to do! I would like to take her chart and enlarge it 1000 times and post it in all the clinics at Vanderbilt that Kennedy is seen at. It would say "SEE!!!! I told you she doesn't need a feeding tube!" :o)
After so many weeks (months really) of discouraging news, this is just what we needed. It's like a sigh of relief. We are not out of the woods yet... she has to continue to gain weight this way to make the feeding tube a thought of the past, but at least she's on the right track. Praise God!
Her nutritionist does want to put her on a high calorie powder which I can mix with her baby food. Two tablespoons a day will give her an extra 84 calories. I'll be keeping that stuff FAR away from my food! HA!
Thank you so much for continued prayers for our sweet girl! We feel them constantly! We are counting down to her first birthday! 24 days to go!
I will update again next week :o).
Friday, April 22, 2005
Monday, April 4, 2005
From the looks of it, the cookie won! hehe
She sure did enjoy it though, and she enjoyed her bath afterwards too!
Anyway, onto our day at Vanderbilt.
You know, I'm beginning to think of that place like our second home. Kassidy knows it because of the sibling play area. She also thinks the parking garage looks like the one at Disneyland. It does kind of, just more depressing. Kameron knows it because of the HUGE train set they have. It really is awesome. I'll have to take a picture sometime.
I was thinking about it today, I go to Vanderbilt more often than I go to the mall. I go there almost as often as I go to church. I go there more often than I go to our own hospital here on Post, although Kass and Kam are trying to change that with their constant ear infections!
I'm thinking they really need to give me my own assigned parking spot or something. We drove around that dumb parking garage for 20 minutes today before I finally had to have Frank drop me and Kennedy off so we wouldn't be late. Then for her next appointment we had to go to a different building, thus a different parking garage. Really, they need to work with me a little!
I think about Kennedy's friend Kaleb though, who has to go three times a week for three hours each time to get dialysis because he has no kidneys. They are there MUCH more often than we are. I will forfeit my parking spot to them.
Oh yeah, the appointments. Our first appointment was with Kennedy's surgeon. I was a little nervous, I prayed hard that Dr. Lovvorn would be on MY side. There shouldn't BE sides in my baby's healthcare. We should be a team, working together for the good of Kennedy... this is proving to be a pipe dream though. Still, I just felt like if God would grant me ONE ally I would have enough strength in me to fight for what I know is right. He obliged.
Her surgeon was thrilled with the way Kennedy looked! He said that besides her weight gain, which was really encouraging, he could tell she was getting stronger, which she IS! He said he sees NO need for a feeding tube and that we should just keep doing what we are doing. In fact, he was so confident, we don't have to go back for TWO months, where we were going every couple weeks. Of course if anything happens we can always go back before then.
He brought a medical student in with him and was showing him how Kennedy can twist herself into all sorts of interesting positions. He also was telling him how far she has come in the last two months. It was a good thing for my heart to hear!
This afternoon we had our appointment with the nutritionist. Oh man I was so nervous. I just had this sinking feeling she would be talking about a feeding tube again. Still, I had my ally and I went in ready to fight! We went over Kennedy's daily intake, which seems like SO much for such a little girl, but of course, it's not enough. There's that negativity again. So she wants me to double her food every day. Double it! She wants me to start dipping her table foods in gravy and butter before I give it to her. Lots of yogurt and ice cream, cookies and jello, pancakes with extra syrup, anything high in calories, anything to fatten her up.
I have a seriously bad premonition that 6 months or a year from now they are going to make me tear this fattening food away from my carb addicted toddler and put her on a diet. Our nightmare could go from one end of the spectrum to the other so easily. The nutritionist assures me that with close monitoring, (ie: Weekly weight checks and reports to her) this won't happen. We'll see. Negativity.
So, for those of you praying for my baby, please pray that she will gain enough weight to make them happy, but that she won't gain SO much weight that she starts becoming overweight. That seems so funny to say, but when she was born, all the books and all the doctors warned me about obesity with Down syndrome. "Don't let them eat junk!" They all said. My brain focused on that, I was determined to keep her diet healthy and now they are changing the rules. I just pray they don't change them again later!
I told Frank this afternoon that if Kennedy were our first baby, I don't think I would want anymore kids. These doctors are totally sucking the fun out of being parents. How sad is that?
Well, now that I've rambled and probably bored you all to tears, I am off to feed my baby ice cream covered with gravy. OK not really, maybe that will be breakfast.
Friday, April 1, 2005
You know how somedays you just feel like no matter what you do you can't win? Kind of like the song, "Sometimes you're the windshield, sometimes you're the bug." That's how I feel today.
I was so ready to come and post the AWESOME news that Kennedy has FINALLY broken 10 pounds!!! She weighed in on Tuesday at 10 pounds, 1 ounce. We were all thrilled and we were sure her doctors would be too.
However, she had her appointment with her GI at Vanderbilt today and he is just so darn negative! "Oh that's great she's gaining, but it's not enough." Give the poor baby a chance already! She is gaining more and more each week. This last week alone she gained 5 ounces. *sigh*
He is still pushing for a feeding tube. I'm still fighting it. I feel it's not necessary. She's gaining! She's doing what they said she would do. He said he wanted her to gain like she did when she was on the TPN. She DID gain then... too much! She swelled up like a sausage and it was all water weight, it was kind of scary. I don't want her gaining weight like that.
I want her to gain the weight she has been gaining... weight from my milk, and her baby food and the table food she's been exploring, including the half of a pancake she ate for breakfast on Wednesday morning! *sigh*
At any rate, we have an appointment on Monday with her surgeon. I also found out today just by chance that we have an appointment with the nutritionist the same day. Of course no one bothered to call and tell me this. Nice. I'm tempted not to go. If they don't have the time to call me, maybe I don't have the time to show up. I'm sure I will however, because if I don't, I'll just have to make another trip there later. *sigh*
On that note I'm going to go kiss my baby and congratulate her on her weight gain. I'm excited for her, even if her dumb doctor can't see past the dumb feeding tube to celebrate with us.
I'll update again on Monday or Tuesday. If I get the other doctors on my side, it will be a good update. If not, well...
PS. Doesn't my sweet Kennedy look so cute with a ponytail? She did that all by herself, I swear! I mean, she IS holding the comb and all! :o)