Lyla's Home

Lyla was discharged yesterday :)) It was hard saying good bye to our new friends and Lyla's Speech and Occupatinal therapist.  our first day home was a little hectic. We arrived to our horrible goats that  I do not like. They are always causing trouble... Anyways we get home an the billy goat won't even let us get in the front door, he was chasing us off, standing on his hin legs trying to ram us. After he chased Amber and I back into the truck, he stepped far enough away for amber to grab the broom and  me grab a fishing pole to protect ourselves as we unload the car and Lyla. We had to chase him off several times and he chased us several times. But  we successfully got everything in the house without getting rammed. I was sitting on our couch for a spit second, just enjoying being home, when I happened to look out the window an notice one of my brand new Toms that I had ordered (but yet to see) silting in the middle of the yard. I ran out there to fit both shoes and the toms bag scattered across the yard, I had looked like they had been out there for days, Rained on, muddy, an faded. Guess how it happened... THE GOATS!!!! And I knew right away, because Trevor had called me a couple of weeks ago and said he had came home to the goats eating one of our other delivery boxes. I was livid! When Trevor got home the first thing he did was put the goats on the back side of the propery, which is fine with me, that had done their job... The yard was mowed!

Before we left we were able to wean 2 more hours off of Lyla's TPN, so now she gets it for only 8 hours (beat shes ever done) We were sent home with Lyla's first couple of meals, so I didn't have to rush making her something, I just feed her as soon as we got home, and she did excellent. Then after her nap we went grocery shopping. We got everything we need for her meals, including her favorite Elmo DVD: The Beat Of Elmo 2. It's a great reinforcement. I've had to divide Lyla's toys and will rotate them every month or so her feeding toys are not avalible all day long, and so she doesn't get bored. We are sticking with the protocol and so far so good, a couple of meals she was testing me, but not for long, an dinner was almost a perfect meal with only one refusal after I told her to take her bite, but the refusal was only for a minute or so. I am so proud of her :D

I had a lot of phone calls to make today, had to make 4 doctor appointments for Lyla, resume MDCP & CDS... Ugh I just remembered I forgot to call someone... Anyways, and had to call Cook Childrens Home Health, & Uromed Home Health called me. Lyla is getting her vaccines and flu shot tomorrow.
She doesn't see her surgeon until mid Dec. and her GI after Christmas, so I guess they aren't I. A big hurry to reconnect, which is a good thing, I would hate to of gone through this feeding program only for lyla to have surgery and be NPO ( not eating) a couple of weeks later, plus the holidays. I thinking surgery will be January. Which is still scary having lyla be NPO, 24 hour TPN after her getting this far. But it's what has to happen. And if for some reason Lyla needs feeding therapy after her recovery, I know who to call!

Here's a look into our typical day, so blessed to have Amber 5 hours a day!

300a- untangle lyla. add formula to pump. Empty Ostomy.

600a- Unhook TPN & Lipids, Ethanol lock.

730a-  Turn off tube feeds.Empty ostomy.  get ready for the day. 

800a- nursing visit/weight, Labs, cap change 

830a- lylas structured breakfast

900a- Meds:Prevacid 7.5mg, Iron 1.0ml, Erythromycin 1.5ml

915a- add formula to pump, turn tube feeds on, rate 20ml, volume 23ml. 

1000a- empty Ostomy

1030a- turn tube feeds off. Occupational Therapy

( Ot comes on Thursdays, other days I will work with her)

1100a-Speech Therapy (SP come every Tues & Tursday) on other days I work on speech with her.

1130a- structured lunch 

1200p- empty Ostomy. nap

1215p- add formula to pump, turn tube feeds on, rate 20ml volume 23ml

1230p- mix & prime TPN & Lipids

100p- meds:Iron 1.0ml, erythromycin 1.5ml

130p- turn tube feed off

200p- wake up from nap, empty Ostomy

230p- structured snack

315p- add formula to pump, turn tube feed on,  rate 20ml volume 23ml. 

430p- turn tube feed off

500p-med: erythromycin 1.5ml.  empty Ostomy bag.

530p- structured dinner

600p- withdraw ethanol lock, flush heprin lock, play with daddy

615p- add formula, turn tube feeds on, rate 20ml volume 269ml. 

730p- empty ostomy. lylas bedtime

800p- Prepare next day meals & formula

900p- meds:Prevacid 7.5mg, Iron 1.0ml, erythromycin 1.5ml

1000p- start TPN & Lipids. Empty Ostomy. Add formula. I go to bed.

Along with weekly Nursing visits for Lab draws & Weight, weekly/or as needed central line dressing change, Ostomy bag changes as needed, baths, doctor appointments, Supply deliveries... Throw in all the laundry,  cleaning, finding time for myself to eat, shower, make phone calls, and all the other mommy stuff!  not sure when I will have time for Lyla-Byes Boutique!!!

"Lyla take your bite"

Lyla is doing great in the feeding program. 4 weeks in & She now eats (all blended) potatoes, carrots, avocado, green bean, ravioli, chicken & dumplings, chicken & rice, chicken & noodle, turkey, beef, beef stew, oatmeal, pancakes & she drinks Elecare vanilla formula. Butter is added to everything for extra calories. She is taking in over 200 calories by mouth a day. We have been able to decrease her tube feeds to 17 hours, she gets 1 hour & 45 mins off her feeds for each meal, so she has more room in her stomach for her meals. And we were able to cut her tpn back down to 10 hours. 

I started out just observing from a one way mirror, watching and learning the protocol. "Lyla take your bite, and you can play the toy" Lyla takes her bite, then the toy is given to her for reinforcement, then after a few seconds of playing, the toy is taken away and Lyla is asked to take her bite. Its all about the cues, voice tone, praise, patience, consistence, ignoring behaviors, & time. Each feeding session is 20 minutes long & no matter how well Lyla does through  out her meal, if she is asked to take her bite or drink, refuses then the timer goes off, shes told for example "Lyla your meal is over, you did not take your bite, you may not play, you can try again next time"  If she had just took a bite, then the timer goes off, shes told for example " Lyla, Your meal is over, Good eating and drinking, you may play while I clean up".

On Oct 24th I was re-introduced into the room, while the tech fed Lyla. I had to ignore her refusals and praise her eating & drinking. Then after just 2 days of watching from inside the room, I started feeding Lyla while a tech sat in the room.  Lyla does great and understands if she takes her bite she can play with the toy. There has been meals of refusals, our longest stand off was 18 minutes, but I was patient & consistent,  she broke and took her drink just before the timer went off. I continue to feed her all 4 meals everyday, and its going great. Today I sat in with Miss Kayla during speech therapy, and learned to introduce a new food. During speech, she gets facial stretches, nuk brushes on her cheeks and tongue, and is introduced new foods, everything is introduced in speech, before added to her menu. If she doesn't do well with it in speech, then they wont add it to a menu.

She also gets to play with Miss Aubrie, her OT, almost every day. Lyla loves Aubrie, she says it herself, and Aubrie just loves Lyla. They start out in the gym, working Lyla's core, its really fun for her. Then she sits the the high chair for facial stretches, food play, and chewing practice. Miss Aubrie makes it all fun. And Lyla is learning so much new stuff. and with all the facial stretches, I do them with Lyla too, she is getting more loose, especially her upper lip and left cheek.

Playing in the gym with Miss Aubrie

Lyla and I have made so many friends, its sad when someone goes home, but we are happy for them. Out of the feeding kids, Lyla has been here the longest, we have even seen so come and go. Since Lyla is so medically dependent she is staying longer than the normal 30 day feeding kid.  So far in our 4 weeks we have had a lot of fun.


Child Life has daily crafts and all the kids play together in the play room or out in the court yard. They have therapy dogs come visit. One night hey had a Halloween party in the therapy gym , then Halloween morning all the kids at Our Children's House walked over to big Baylor for trick or treating.  Jacie came into town from Georgia and stayed with us for a few days. & we used Lyla's 6 hour therapeutic day pass to leave on Halloween. We went to Paige's and hung out, played with mister Lyrik.  Amber came over and we took Tutu Turtle (Lyla), Yoda (Titan), Darth (Marley), & Mario (Ben) trick or treating. Then out for some dinner at Chilis before we had to be back at OCH. 

I customized her Halloween costume...It was a butterfly, I cut off the wings and antennas, added a bow and a shell...inside the shell is her feeding pump ;)

 free from her back pack for a while

Everyone here loves Lyla and cant believe she can say big words like Gastroschisis :)  She is getting so big, so fast. She is a little copy cat and repeats everything. She says sentences, sings song...she is so smart, I will hum just the first few words of a song, just a hum, and she starts singing it. she knows sooo much.

NIGHTMARE

Lyla in the ambulance on our way to Children's Medical Center

     We had a crazy 12 hour ER visit at Children's Medical Center.  On Oct 18th Lyla's central line broke and after 4 hours of trying to get a repair kit here at OCH, Lyla was transferred by ambulance to CMC.  I thought it would be a quick in and out thing, seems how she was getting transferred and the procedure should only take about 20 minutes. Boy was I wrong... 

   It started off well, they were quick to see Lyla, they asked the size of her line and I told them 6.7fr. But then they questioned me about it being the right size because the IV team told the ED team that it only comes in a 6.6fr... About 1.5 hours in & It was already taking longer than I imagined, and wished we had transferred to Cook Children's instead. They called Cooks to get her medical records, so they would know the exact size & what do you know, I was right. They called the IV team again and let them know we were ready for the procedure. They came down and we got started, everything sterile, and ready to go, they cut Lyla's line and attempted to attach the new line. I didnt work because it was the wrong size & brand. So there we were, sitting with a cut line with hemoclaps attached and no new line to repair it with. 

    By now I was asking to transfer to Cook Children's because I knew they had what we needed and it would get fixed fast. However, the doctor there at the CMC told me they could get the right line in a short amount of time, but no one could tell me how long that would be. The doctor tried to convince me that it would be faster to get the line there and fixed, then the transferring process to cooks. I told them several times i wanted to transfer, but no one listened, it was very frustrating. With Lyla being admitted at OCH and already transferred once, it wasn't as easy as if I had just taken here into CMC myself. I couldn't just leave, because Lyla was admitted at OCH. Trust me, we wanted to just leave, go to Cooks, get the line fixed, then go back to OCH. After waiting about 30mins after I had talked to the doctor I asked the nurse if they had gotten anything. I was told IV team had found one and were on their way.  Turns out they did find the right brand, but not the right size, so it was useless to us.  By this time the whole IV team & ED supervisor were searching for a line. Calling their suppliers & even the hospital across the street. I continued telling them I want to transfer, and even had Trevor go to OCH to try to convince the doctor at Our Children's House to get us transferred to Cooks. It didnt work though, instead the doctors at OCH & CMC communicated about what to do. In the mean time, about 7 hours into our stay, the ED supervisor contacted Cooks and set up a pickup... not a pickup for Lyla... I wsih, but a for someone to go Cooks, pick up the right line and bring it back. I took 2 hours for them to drive there and back. In those 2 hours the nurse blew 2 veins before she placed a PIV so Lyla could get some much needed fluids. 

     Then FINALLY the line arrived after being there for 9 hours!!! and it took no time for the IV team to fix it. We were ready to go "home" to OCH, so I thought... For some reason no one there knew how we were getting back to OCH, It was obvious to me that a ambulance had to take us back, because Lyla was inpatient and going back with a PIV & fluids running, but once again no one listened to me. They seriously mentioned a taxi, and how it would be fine that Lyla didn't have a carseat, because its legal for a baby to ride without a carseat in a taxi. They were clueless!!! Once again I called our doctor at OCH and had her tell the ED that we needed a supervised transport by ambulance. We signed discharge papers, & I thought that everything was taking care of and that we were just waiting on the ambulance to pick us up. BUT NOOO, our clueless nurse didnt realize she was the one that had to call and set up the transfer. after a 45 minutes of waiting, I yelled to the nurses station... DID ANYONE CALL THE TRANSFER TEAM??? OMG her face said it all, but she lied to my face and said she did as she scurried of to the phone. I think she was scared to say anything to me after that, she had a male tech come give us updates after that. & it wasnt until we were strapping Lyla to the stretcher, that I realize the nurse screwed up once again, she had set Lyla's fluids to run at 5ml/hr instead of 50ml/hr.  She's lucky she wasn't around, I was so mad.  This caused Lyla to be dehydrated and had to be hooked up to fluids for almost 24 hours at a increased rate or 65ml/hr.

  We got back to Our Children's House at 4am, 12 hours after we left. What a NIGHTMARE it was!!!

 

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!!!

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