Wednesday, February 23, 2005

Checking In...



Hello everyone! I apologize for not keeping this page updated as much as I'd like too! Life has been busy busy busy!

Anyway, we went back to Vanderbilt for a weight check on Monday. Kennedy weighed in at 9 lbs 4 oz... only one ounce more than she was 10 days before :o(. Very discouraging! Her surgeon said that he is going to give her a little more time to start gaining before taking other measures. He said worst case scenario is that her blockage was not the ONLY reason for her failure to thrive and there could be more going on with her. If she doesn't start gaining soon, we'll start the lovely process of running more tests again.

Please keep Kennedy in your prayers that she gains enough weight to keep her doctors happy!! She's already been through so much, and she needs some down time! We go back to Vanderbilt again on March 4th to the GI clinic and then again on the 7th to the General Surgery Clinic for another weight check.

In the meantime she is eating eating eating! Last night she ate almost a whole jar of stage 2 baby food! I was shocked! We are finally getting the miralax down her too, we haven't seen any amazing results yet, but hopefully soon!

OK I guess that's it for now!
Enjoy Kenn's new picture up there, I got that hat for her at The Children's Place for 49 cents! I love a good deal! :o)

Tuesday, February 15, 2005

Success!

Well after 3 suppositories Kennedy finally pooped! Hallelujah! Now if we can just get her on a regular schedule we'll be in good shape :o).

In other news, Kassidy and Kameron had their first dentist appointments ever today. Kassidy did GREAT! I was so proud! Kameron screamed and cried and they had to hold him down, but his teeth are clean :o). I am very happy to report neither one of them have any cavaties and the dentist said their teeth look awesome! He said he can tell they don't get much juice or candy (big mean mommy). :o) They have to go back in 6 months for another check up and the dentist is going to make an appointment for Kennedy then too, even if she doesn't have teeth yet. We really will need to stay on top of her dental care.

My grandparents are coming tonight from CA to stay for a couple weeks, we are looking forward to it! We'll show them around the wonderful state of Tennessee ;o).

Kennedy goes back in on Monday for a weight check... hopefully we'll have another good report then!

Sunday, February 13, 2005

No news... and sitting up!


Look at my big girl sitting up! This is a trick she learned while she was in the hospital! We were doing our daily sit ups on the hospital bed and she got brave and let go of my hands and grabbed the bars of the bed and there she sat! Now I have proof for her therapists! HAHA! :o)

No news today... still no poopy... I never thought I would actually WANT to change a poopy diaper, but it would be GREAT right about now.

My mom left this morning, she said something about having to return to work? What's that about??? We sure are going to miss her here! Kameron has asked for her a few times already. She took one of our kittens home though so that's a good thing. If anyone in the TN area wants a kitten I have two cute ones free for the taking!

OK that's all, I really just wanted to share the picture :o).

Friday, February 11, 2005

Weight loss

This is a phrase I rarely get to use for myself, though I would love to! Unfortunately, it's a phrase I have to use for Kennedy today. We went in a few days early to get her weight check done since Kam had an appointment right up the street.

When we left the hospital last Sunday she weighed in at 10lbs 5oz, today she weighed in at 9lbs 3oz. :o( Very sad. The only good thing is, they are saying that it COULD be all water weight that she lost after being pumped full of nutrients and then the IV fluids during surgery. Also, she's still above the weight she was when she entered the hospital, so there is not immediate cause for concern. Still, it's frustrating.

Also, she still hasn't pooped! The nurse today gave her another suppository, which worked great last Sunday, but here we are 8 hours later, and nothing. Maybe tomorrow.

On a good note, while we were there we went up to visit Kennedy's nurses and her little boyfriend Kaleb (who we hope will be going home VERY soon). It was nice to see everyone and then be able to leave again! :o) I took pictures, of course, which I will flood your in-boxes with once I get hooked back up to my own computer.

OK there's today's update along with a picture of my grumpy baby... it's a rare occasion that she looks like that! I think it's adorable, of course! :o)
Till next time,
Renee

Thursday, February 10, 2005

Packing away baby clothes...

Kennedy is doing well, we still can't get the miralax down her, but we're trying to get creative! She has her first weight check in Nashville on Monday so we will see how things look then. I just hope that her doctor is not too upset about the fact that she hasn't been taking her laxative regularly and she hasn't pooped :o(. My mom and I are doing the best we can, but she's one stubborn kid!

Wednesday she had her first day back to therapy. Not much has changed there, she loves it at first, and then she hates it... especially tummy time! Big mean therapists making her work :o). Of course tonight at home she was playing on her tummy and holding her head up and looking around and smiling like she LOVES it! I need to video tape this so her therapists don't think I'm a liar!

My mom and I finally got a full night of sleep last night. I don't know if Kennedy is feeling better or if she finally got her nights and days figured out again or maybe she was having mercy on our weary souls... I guess we will see tonight. :o)

Also, while cleaning today I got to do something awesome! I got to pack away clothes that Kennedy has outgrown! How cool is that? Of course it was just preemie clothes, but still! I thought she would never outgrow them. Now we're breaking out all the 0-3 months stuff... some is still HUGE on her, but we'll get there. I'm hoping by her first birthday she'll be in 3-6 months size... that's 3 months from now... it could happen!

OK it's late so I'm off. We have to get up early tomorrow. I apologize to all of you who have emailed me and have not gotten a response yet, I'm not ignoring you, I swear. I just haven't had time to sit and answer mail. I haven't had time to catch up on my boards either, but I will! Life will get back to normal one of these days! :o)
Love you all,
Renee

Tuesday, February 8, 2005

Update from home

OK I'm not sure if anyone is still checking this page since we're home now, but here's the latest.

Kennedy has had a rough couple nights. The first night she wanted to stay up and party and then she got a tummy ache... we think. My mom and I took shifts staying up with her.

Last night again she kept crying like she was in pain. I'm not sure what's going on exactly. We'll see what happens tonight!

The Miralax has proven to be quite the adventure. She won't take a bottle, won't take a sippy cup, we tried a syringe and she spit it all over! I mixed it with juice which she's never had before so I thought she would love it! Wrong! She's one determined baby, I'll give her that! :o)

On another note, it's good to be home! Kass and Kam are doing great, and my mom is still here to help me get back into the swing of things, thank goodness! We have a few appointments to go to this week, so the extra help is much appreciated!

Anyway, I'll update again when things change :o).
Renee

Sunday, February 6, 2005

Hello from HOME!!

Kennedy did really well yesterday. She went from noon on with no pain meds at all! She ate like a pro and only spit up once, and it was only a little. It takes a little longer to burp her now, so I have to remember to do it well!

Her surgeon came in and said she looks great and although she is still fragile, he doesn't see a reason why we couldn't go home today. He said he was pretty surprised with how well she is doing. Good thing we all know the Reason for her thriving! :o) He's going to be following her closely this week, so we will be going back and forth, but he doesn't foresee any problems.

She still hadn't had a dirty diaper when he came in so he ordered a suppository for her and then wrote her a prescription for Miralax which I know many of my friends' kids are on, so I feel pretty comfortable with it. Then right before we left the suppository kicked in and she pooped :o). That's a great sign that everything is working well!

Anyway, on that note I'm off to shower and wash away the hospital smell and then we're going to eat real food! YAY! Thank you all once again for all the prayers for Kennedy. I know she would not be doing as great as she is without them!

We love you all,
Renee

Saturday, February 5, 2005

Soon??

Well today as been a good day. Kennedy is more playful today and she has been going longer and longer without Morphine. They haven't pulled her completely off of it yet thank goodness.

This morning her surgeon came and yanked her tube out (literally) it was not fun! She got to eat a few hours later and she did really well! She kept all her food down. She still hasn't had a dirty diaper, but her nurse said her bowel sounds are great and she's been really gassy, so that's a good sign (and not at all gross!) :o)

SO her surgeon said if she has a good night and continues to eat well, she should be able to go home SOON! (Like he even mentioned tomorrow if we can get her off the morphine!) So let's pray my baby is not a drug addict yet and we can get out of here!

I'll update again as soon as we know!
Renee

Friday, February 4, 2005

Small update

Hello everyone!

Not too much to report today. Kennedy has been sleeping almost continuously for the last 24 hours. It seems to be an endless cycle, she wakes up in pain, we give her Morphine, she goes to sleep for about 2 1/2 hours and half an hour after she wakes up it's time for more morphine again. I think they are going to try to start weaning her off tomorrow... her surgeon said they could give her tylenol. I certainly hope he meant tylenol with codiene! As much as I love Johnson and Johnson, something tells me straight tylenol just won't cut it!

We're still waiting on the results from the last two blood cultures they've done. The results still are not in, which is weird! Hopefully no news is good news.

Her surgeon mentioned they MAY take out her tube tomorrow, we'll see. She still hasn't had a dirty diaper. Hopefully soon!! :o)

Well, like I said, not much to report, but that's ok! The quiet days are good!! :o)
Till tomorrow,
Renee

Thursday, February 3, 2005

Kennedy's night

Well, as expected we had a pretty rough night last night. Kennedy is in quite a bit of pain. They are giving her Morphine every 3-4 hours which works great for the first hour or so and then it kind of tapers off.

Around 1am her IV decided to stop working, so they had to pull it and start meds through her other IV that had a saline lock. Thank goodness she already had another one in or it would have been double torture! Around 5 they had to come back to do more blood cultures to see how her blood infection is doing, and then later they had to take more blood to test the level of antibiotics in her system. Apparently if she gets too much it could be toxic. Yikes!

She has two student nurses with her right now, and she's just laying in bed staring at them. She hasn't had any smiles for us yet, but I think once the drugs wear off she will.

We've had a number of surgeons come in to check on her today and they all said it looks like she is doing well. One of them said that I may not be able to feed her until Monday! I need to get a second opinion on that, Monday is a long way off from now!

Kennedy has received four packages today! :o) The toys on her bed are piling up and her door is almost completely covered in cards. She's so loved! :o)

Anyway, I guess that's it! I'm going to get back to her room but I wanted to let you all know how she was doing. Thank you again for signing our guest book! I will print it out when we get home and save it for her to read later. I know she will cherish it as much as I do!

Love you all,
Renee

Wednesday, February 2, 2005

Out of surgery!

It's been a long day!
Kennedy is out of surgery and doing well. Her surgeon said everything went just as he'd hoped it would. I mentioned before that they would use an epidural for pain management, but because of her blood infection they were not able to do that... infected blood in her spinal fluid would be a very bad thing. Instead, they have her on morphine for pain. Even with the tiny amount she received, she is knocked out. She did wake up on the elevator ride back to her room, but she just stared at me for a few seconds and drifted back off to sleep.

They are monitoring her closely and have oxygen ready in case she needs it, but so far she has been breathing fine on her own. Her pulse ox is staying between 96-98, which is good.

The incision site is a little bigger than I thought it would be, it kind of shocked me when I saw it. She has stitches which will dissolve over time and dermabond on top of the stitches. She'll have quite the scar I'm afraid. Guess it will make for good conversation when she gets older :o).

She has an NG tube through her nose, but it's just to drain her intestines until they get working on their own again. Once she has a dirty diaper, the tube will come out and she will be able to try to start nursing! Her doctor said this could take a few days. We'll see! In the meantime, I'm pumping and storing my milk. Fun! :p

OK I think that's it. I'll try to update again tomorrow if anything changes. It depends on how she is feeling. I don't want to leave her if she's in pain.

Thank you all so much for praying for Kennedy! Please continue as she recovers! We know there is nothing more powerful that can be done!

We love you all,
Renee

Tuesday, February 1, 2005

Surgery TOMORROW!

Well, Kennedy's 3rd round of blood cultures came back this morning and it is STILL showing infection. :o( So they are going to pull her PICC line out this afternoon and replace it with a regular IV. They are going to cut out her nutrients and just continue with her antibiotics.

Since she does not have a fever and her lungs are now clear, her surgeon decided that he's going to do her surgery tomorrow! Nothing like a little notice huh? Ohhh my nerves are on edge!

She can nurse until 4am and then I can't feed her after that, and her surgery will be mid-morning tomorrow... between 9-10 he said. The surgery will take about 3 hours and as long as everything goes well she will be put back into the same room she is in now. If things don't go as planned she'll be put into the Pediatric Critical Care Unit (PCCU).

So, now more than ever, pray pray pray!!!! This is what we've been waiting for since we got here, but it's still scary! I'll update after her surgery as soon as she is out of recovery and asleep. The surgeon said she will be in quite a bit of pain, so I won't leave her if she's awake. I'll find a way to get an update out one way or another!
Until tomorrow,
Renee