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!!!

Lyla's Gastroschisis Journey

the NICU days

Make a video - it's fun, easy and free!
www.onetruemedia.com

10 months old today and praying for negative blood cultures

Yesterday was a very eventful day! I woke up thinking it would be a normal Monday morning, the nurse comes, draws her labs, weighs her and leaves. but NO... She couldn't get any blood back from her central line, and that worried me. Its never happened before. ALSO she has been running low grade fever on and off since last Thursday, I just figured it was from teething. The nurse left and called GI. a few hour later the GI nurse called me concerned about her fever and said she was going to talk to the doctor about taking her to ER. instead of ER they had another nurse come out and flush her line with TPA(Tissue plasminogen activator) to breakdown any blood clots. we waited 30 minutes and tried to draw back blood, and still nothing, but fever. Did a second dose, waited another 30 minutes, and wah lah It worked. The nurse was able to draw labs. I asked her about the fever and she wasn't worried, said its probably because of her teething. I thought we were done with nursing visits for the day. But I was wrong. I got a call from the pharmacy asking how she was doing because some of her electrolytes are high. Then a call at 830pm from a different nurse saying she needed to come out to draw more labs and blood cultures to check for infection. It was a long day, but I still manged to do laundry, frame my certificate from the milk bank, and set up Lyla's crib.

so proud of my certificate for donating 970 ounces of breast milk.

This is what her hair looks like in the morning.

And this is what it looks like after her bath.

We went to the park the other day when it was like 80 degrees, and I took her pictures, here are some.

We are still waiting on the blood culture results.

& Lyla is still running a low fever on and off.

Please pray for negative cultures

LOOK AT ME NOW!!!

On New Years Lyla rolled over for her tummy to back and hasn't stopped doing new things since. 

about a week ago, I sat Lyla up to brush her hair, and she sat there all by herself for about a minute. and now she sits up all day, playing with her toys.

Hers a big girl now!

The physical therapist comes out 3 days a month, and the speech therapist comes out once a week now. She is still watching her Your Baby Can Read DVDs and is starting to recognize words. She tries so hard to clap. AND her bottom left tooth broke through yesterday : ) 

Her hair is getting so long, this is what it looks like when she wakes up.

We went to Cooks to visit our friend Thomas after his surgery to reverse his ileostomy.

Lyla and Thomas are old friends, they were NICU neighbors.

Lyla loves riding forward in her big girl stroller.

 She is up to 20ml/hr tube feeds. She would be farther, but there have been a few days thats she doesn't want to eat her bottles, so I'm not increasing as fast.  The first day that she didn't want her bottles really worried me, because she was also really pale. Her anemia had me worried so I called the on call GI and they had me take her to ER because it was the weekend. They did labs and they were actually better then the labs before. we were sent home and the next day she ate her bottles fine. She went to Dr. Yee Jan 10th for shots. Her upcoming appointments are hematology on Jan 27th & GI on Feb 6th.  

Its crazy how fast Lyla's first year has gone. I want to do her birthday party on Sunday, March 25th. I don't know where or what time, but I do know its going to be Minnie Mouse theme, and Icing Smiles is giving her a cake : )