Lyla was born at 31 weeks with Gastroschisis, her intestines outside of her body. She now suffering with short bowel syndrome, with only 20% bowel. She also has dysmotility, gastroparesis, anemia, liver disease & Anemia. Lylas had 18 blood transfusions, & under anesthesia a total of 13 times, 7 were intestinal surgeries. Lyla has multiple doctors, & is often in the hospital.
Lyla is a week post-op and feeling tons better, she is up and walking like a champ.
She was vomiting a lot at first, but it as slowed down. Her body has been producing a lot of fluid in her stomach, which is making her stomach up set.
She started pooping on Wednesday, and now almost every diaper changed has poop. Life with a short gut!!!
We attempted to feed her on Friday. Very slowly 3ml/hr, and it only lasted 3 1/2 hours before we had to stop feeds and drain her stomach again. Over the weekend we drained her stomach off and on, not eating or anything, just a closed g-button for a few hours, then drain for a hour. Her body can produce a lot of fluid within just a few hours. I have no idea where its coming from!!?!?! Surgeon says"Its just a thing short gut kids do" I've never heard of such a thing. For example Lyla's stomach was empty. Then got 3ml/hr of pedialyte for 3 1/2 hours, 3ml/hr X 3.5hrs= 10.5mls, so there shouldn't be more than 10.5ml in her stomach. I checked her residuals (what was in her stomach, which I can suck everything out of her stomach with a big syringe through her g-button) There was 60mls in her stomach. Although she's been having so much mystery fluid her surgeon wanted to try feeds again today. He really wants to push her this week, because its been long enough he isn't worried about the hookup, in term of it healing. If we make no progress this week then she will get another barium enema to check for dilation, narrowing, blockage, & movement. We started feeds, 2ml/hr, this time of half formula & half pedialyte. She vomited shortly after starting it, but the doctor really wants to push her, so we kept it going, it ran for 2 1/2 hours, and we are giving her a hour break off, because she is so uncomfortable, screaming crying. We started feeds again a hour later and she vomited about a hour after that, then again a hour after that. So we stopped feeds once again & will see what happens!!
We got results back from her liver biopsy. There is the expected liver fibrosis and inflammation due to TPN & Lipids, but also from another source. Could be from a viral infection, autoimmune disease, or less likely drug metabolism. Lyla had a large blood panel drawn, testing for HIV/AIDS, Hep B & Hep C. because she has had 14 blood transfusions. Doing multiple labs to check for autoimmune diseases, like autoimmune hepatitis, where the immune system attacks the liver. All labs are still pending, and I am anxious for results. Her liver damage is at stage 2, meaning enlarged, inflamed and bridging fibrosis, but not yet cirrhosis.
Our Monday morning started early. We woke up, Lyla was happy. Dancing around, holding her picture of her Yaya and herself when she was in the NICU, saying " Hi Yaya, I love you" We loaded up the truck with all our stuff ready for our stay at Cooks, we got there at 6am. Lyla was a big nurses helper. Helping put on the bracelets on herself, me, Trevor, and even her Elmo. Talk with anasethgiologist, Dr. Iglesias, went through all the questions, and signed consents. Dr. Iglesias loves Lyla's Socks For Surgery socks that said "Alright Dr. Iglesias, but this is the last time" and her shirt that says "Dr. Iglesias is fixin my guts". Lyla got some giggle juice to help with separation and after is kicked in, she was talking silly. She said "I love you", and they took her back. Surgery lasted 2 hours. Dr. Iglesias came out and told us everything went good, he measured 90cm of small bowel, and her colon looked good. They did the liver biopsy, and gave her a fresh new g-button. The great news was she didn't need a blood transfusion. She was in recovery for about a hour before we could go see her, and it wasn't long after that, she went up stairs to her room. it was rough keeping her pain under control. Around 8pm she still hadn't peed since surgery, so they decided to do a quick in and out catheter to drain her bladder. Lyla had gotten a caudal epidural, so she was numb abs couldn't go on her own at first. They drained out a whopping 7+oz of urine, poor baby was full, after that and getting a dose of pain med, she slept for about 4 hours straight. She had labs this morning, her blood count was a little low, not bad, and is normal after surgery. Today was much better, pain was under control for the most part, just one time we were waiting a while for pharmacy to send up the med. We were able to remove the tube that was in her nose, sucking her stomach. She still has it draining out of her g-button, and will for a couple of days, before they start feeds. We got her up out of bed to stretch, it hurt, but we had to, she walked a few just a little bit. It was a good 2nd day!
Hey everyone! First off, I want to say thanks everyone that follows Lyla's journey! Thanks for all your support & prayers. Since we've been home from the feeding program, Lyla has been doing well with eating and drinking. Trevor, Lyla and I all caught the flu a few days before Christmas, but it really didn't phase Lyla that much and we were feeling much better by Christmas day. The day Lyla's daddy proposed to mommy 😍 6 1/2 years and a Lyla later 😉 I hope every one had just as great of a Christmas as we did. We were very fortunate to have Avery's Angels Gastroschisis Foundation sponsor Lyla's Christmas, and wonderful families donated gifts to her! We are very Thankful and Blessed!!! December and January have been very busy for us... heck we've been busy since September. Lyla had an Appointment with her surgeon, Dr. Iglesias, on Dec 10th and decided it was time to reconnect her bowels and get rid of her ileostomy bag. We scheduled a barium enema, to check for a narrowing or blockage in her colon before they hooked it back up. On Dec. 26th we saw Lyla's GI, Dr. Keng. She believes if the surgery is successful and Lyla continues to tolerate food as much she has been, then Lyla could be TPN free by her 2nd birthday. That would be a miracle. Seems how Lyla hasn't gained any weight since July, when they bumped her TPN down to 8 hrs. Since she hasn't been gaining Dr. Keng changed Lyla's oral liquid intake to Pediasure Peptide, a high calorie/protein drink, in place of Elecare Jr. & Pedialyte. At first Lyla didn't tolerate and it was making her vomit up her meals as well. So I started mixing it with pedialyte to half strength, along with nectar to thicken it. She can tolerate half strength, so that's what she's been getting. She is continuing to get speech therapy 3 times a week, and occupational therapy, once a week. She had a follow up swallow function study done in Jan. 15, and she swallowing has improved but not great yet. In observation of 10sips of half nector thick (half less thickner than she's use too), she only had a small penetration once. And it was her very first sip. In observation of 10 sips of thin liquid (without any thickner) she had 5 deep penetrations, and no control over the liquid. So in results we have gone down to half nectar thick, will continuing oral motor skills, & have a follow up swallow study in 4 months. She did very good drinking the nasty chalky barium dye for the X-ray... She actually loves it 😝 and didn't want me to take her cup away! I was glad she wasn't traumatized from that radiology room, because just a week before that she had her barium enema. She was not happy at all while getting the BE. The results were good though, everything went through smoothly. Which means there's a chance the colon could still work. The radiologist estimated Lyla to have about 10cm of colon, just by looking at her BE video and the amount of dye that was used. An average child the same age would have triple that amount. She had another appointment with her surgeon after the barium enema, to talk about the results. He decided to go with Plan A, to reconnect her bowels, without removing the large bowel, only removing minimum off both ends for a clean connection. He said he will accurately measure both small an large bowel while he was in. I have been doing distal refeeds to Lyla (putting stool through her colon with a catheter) to keep her colon "happy" & so far the results of that haven't looked great to me. Its suppose to come out of her bottom, but rarely does, and when it does, it's bloody. The surgeon says the blood is just from no being used enough, it's not "happy". Another concern is the rash around Lylas stomas, it's been there since I can remember. Imagine horrible raw diaper rash, but on her tummy where her surgeon is suppose to make an incision, and a nice clean, straight/small as can be scar. The rash isn't huge, but he will have to remove that skin if it isn't healed by surgery day. It may sound easy, but if it were, the rash wouldnt be there for as I can remember. There isnt much you can put on a stoma rash without the bag falling off, just powder and spray, then no matter how almost healed it is, as soon as the bag leaks, the rash gets worse. She also will get a liver biopsy during surgery. For the biopsy, they will cut & remove a tiny piece liver, then insert a long needle to collect a sample from the inside. She needs this done to be able to really see how bad her lover damage is, her numbers have been elevated for a while now, so her doctors want to check it out. We had to reschedule surgery to 6 weeks after Lyla was diagnosed with the flu, because anesthesiologist will not put her under until then. So Jan 28th is the date, we just have to go one more week without getting sick. Got a call from Lyla's GI with her weekly lab results. White blood cell count is low, so she's more prone to get sick... And of course she started to get a sinus infection, but I took her into the pedi's office the day she started to cough, they gave her antibiotics, and she has been fine eer since. Also got the lab result that her bleeding time was elevated to the 3rd week in a row. Bleeding time meaning, if Lyla's central line were to get ripped out, or if se were to get cut badly, then she would bleed out faster than someone else. With surgery right around the corner, we started vitamin k orally to try and get her levels back down, she already gets vitamin k in her tpn, because we have had bleeding time issues before. Dr. Keng contacted Dr. Iglesias to let him know about the bleeding time. I'm sure they will have Plenty of blood transfusions on standby, seems how Lyla always needs a transfusion or two during/after surgery anyways. We have one more lab draw today to check levels before surgery. After being on oral vitamin K, I hope her levels have gone down. Just 7 more days and we will be living at Cooks once again. Theres no telling how long we will be there this time. Come visit us!!! We do not know yet what time surgery is, we will get a call in a few days with times and instructions. It's been a long wait, and we are so ready. Lyla has gotten quite a few goodies for this stay. Two custom hospital gowns, one turtle that was donated by Gracie's Gowns and one Elmo from Tubie Whoobies, also a Emo tubie whoobie g-button pad, She's gotten a sesame street pillow case, mommy made her sesame street bed bumpers, & blanket. & she's got her "Dr. Iglesias is fixin my guts" onesie & "Alright Dr. Iglesias, but this is the last time" socks for surgery. She is set!!! Now to just sit and listen to the clock tick!
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
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 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.
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 toldIV 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!!!
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". 
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. 
