OCH feeding program

Lyla's been admitted for a Week now at Baylor's Our Children's House in Dallas, 4 more weeks to go in the intense feeding program. Lyla is doing pretty good, taking bites and drinks of nectar thick pedialyte. She gets mashed potatoes & avocado for lunch and dinner, gagging a lot while eating, but tonight she took 7g of avocado. So she's doing pretty good. She has 4 feeding sessions a day, along with OT & Speech sessions during the week. So far we've found out her tongue frenulum, cheeks, & lips are really tight. We've started doing face & mouth stretches/exercises to help. She had a swallow study yesterday, that showed she is at risk of aspirating, and will possibly need vital stim therapy (external electrical stimulation of her throat muscles), while she eats. We have a care conference tomorrow afternoon to talk about what will be best for her.

A lot has happened!

Ok so it's been a really really long time since I blogged. A lot had happened in these past 7 1/2 months.  Quick summery of the past months, the whole eating by month thing didn't go well at all, had another central line infection begining of March, Then vacation to California, then admitted the day of her birthday party for RSV, Started to refuse bottles, learned to crawl, walk, talk... All that good stuff. had a endoscopy & colonoscopy for blood in stool, turned out to be just stomach irritation. She has turned into quite the little model & Stayed out of the hospital for 4 whole months, minus the million of ER visits.  Now that I fast forwarded to the present here is our resent update :)

Lyla is doing good. 18 months old now, but advanced for her age. She had her OT re-eval and she scored higher than her age in every category, highest score being 34 months in grasping. She is running, talking like crazy, her vocab is over 50 word, including Gastroschisis, 3 word sentences, 6 hand signs, and she will attempt to repeat anything you say. She is potty trained, well there wasn't any training involved, she just knew what to do, she went 8 times the first day she sat on her potty, and hasn't stopped since. She is doing awesome physical and mental wise. Health wise is ok, spent all of August and the first half of Sept in the hospital for dehydration, vomiting,  central line infection and new line surgery. She was only a week away from getting off tpn, but had a huge set back in her tube feeds and tpn during her admissions. She has done well with drinking from her cup, but still having problems eating by mouth, so on Monday she will be admitted into Our Children's House at Baylor, Dallas for a 5 week intense inpatient feeding program. Hopefully this will help use get closer to weaning TPN. Then the plan is reverse her ileostomy within the next couple of months. It's been a busy past 2 months and will be busy the next couple of months as well, but we will get through it, just as we always do.

We hope you all are doing well

<3 Courtney & Lyla

Green Beans

Lyla was suppose to be discharged yesterday, however, she decided to run a fever, so they are keeping. They did more cultures, so far negative.

While here, some good things have happened.  They decreased Lipids to 3 days a week, increased TPN so she is gaining weight again, and we started baby food.

Short Bowel Syndrome babies have difficulty breaking down/absorbing starches (cereals, peas, potatoes, corn, etc) and sweets (fruits). We are starting with green beans, squash, carrots, and even meats. 

 So we started with green beans

Then carrots, she does ok. She swallows some of it,
 but she figured out how fun it is to spit while eating :p  we have speech theraphy at home, so im not worried.

Valentines Day

So they didn't pull the line. Cultures are negative, she got a echo of her heart and central line, and everything looked good. She is getting another week of the antibiotic Ampicillin. They want to keep her at least until another week, because she will start getting Ethanol locks after her antibiotics are complete on Monday, and they want to monitor her because of the changes they have to make in her TPN and because her stool output still isn't back down to normal.  Its not as much as the day she got admitted, but its still more than normal.  They just increased her feeds to full strength formula yesterday and are keeping it at 19mls/hr for now because of her output. She is getting labs drawn in the morning, then we are just hanging out tomorrow.

Lyla is well known at Cooks. We go to build a bear (Yes Build-a-Bear in the hospital) and she watches the stuffing go around and around in the machine. The ladies there just love her... well everyone does.  We always go up to the 4th floor and visit all hers nurse friends...they are just a little jealous that Lyla isn't on their floor anymore. & we get stopped in the hall & cafe all the time by NICU nurses & other staff, they all want to say hi to Ly. Today we saw Lyla's doctor from the NICU, Dr. Hamilton Spence, you know the one that was on the news with us, the doctor we just love, yes her...She and everyone else cant believe how big she has gotten... and neither can I.  I met & held a little 1 month old gastroschisis baby today in the NICU, hims a cutie. I met his mommy the other day, and turns out he is going trough what Lyla did at 1 month. So baby Aiden needs us to pray for poop!
I hope everyone had a happy valentines day... we did!

BIG GIRL

We are still just waiting til monday, nothing new, they drew some more labs and cultures this morning.

Doctor said he wasn't going to mess with the stitch by her stoma, just leave it be and it will come out. thats all of our update.  heres a video and some pics

  SO SMART!!!

Her are some photos I took a few days before she got admitted.

all hers can eat by mouth

I love my tubie baby

Positive Line Infecton

One of Lyla's blood cultures grew on the 4th day. Turns out it is the same infection she had in December, it never went completely away. The positive cultures that were drawn on Jan. 23rd, were not contaminated, its just a sneaky little bacteria that grows very slowly. Its called Leuconostoc, its not a life threatening infection, just a nuisance that needs to be gone.  She is getting antibiotics now, and is scheduled to get a PICC line on Monday, so they can pull the infected line out. She will use her PICC line for 3 days, then go to surgery for a new central line. Now they do think the cause of the diarrhea, was from the line infection, along with the fevers, and trouble drawing from the line back in January.

While she's under for surgery, they are going to give her a new g-button, because the one she has now is leaking bad. & they might remove a sucher from ostomy stoma, it was suppose to dissolve under her skin, but its made its way up through the skin, it would be better to to theses things while she cannot feel it. But we still haven't talked with the doctor about these 2 things, just the ostomy nurse, & GI nurse practitioner.  Dr. Iglesias still needs to look at her ostomy to make sure its not a bigger problem, because she has stooled out a couple of suchers last month, a long with positive blood in her stool, I don't know if that's normal.

There is still a slight chance that she DOES NOT have to get her line removed, but I'm pretty positive it will happen. Just to make sure the infection is gone. We can start fresh with a new line, & do ethanol locks to help prevent infection.

I will know more when her Doctor makes his rounds, I have a list of questions today :)

Lyla, Titan, & Marley

Lyla & Aunt Paigey

BIG GIRL

Happy to be out of her room

Hers gonna be a doctor

SUPER TUBIE

      HAPPY FEEDING TUBE AWARENESS WEEK!!!

Playing

Giving her own meds

Happy Dreams

Diarrhea & Dehydration

omg I had a super super long update, then i tried to put this link in & it disappeared, It wont undo, UGH!! I have the worst luck with updating my blog

  http://www.youtube.com/watch?v=3p_N65Bgk-c&feature=youtube_gdata_player

So now my super long post is super short, because i'm not writing it again.

Lyla got admitted, because of diarrhea & being dehydrated.
All blood work normal, cultures normal. they stopped her food until tomorrow to let her bowel rest.
Don't know whats wrong, maybe she has a bug.

THE END! i
f you have any questions just ask.
HAPPY FEEDING TUBE AWARENESS WEEK!!!