Lyla Learning!!!

We have been practicing all the time with her rolling, sitting, & working out her legs. She can now roll from her stomach to back, and almost from her back to stomach... she gets about half away and her arm gets stuck. :)  She can sit unassisted for a spit second, She just needs some balance, her upper body is getting strong. Her legs not so much. She just started baring weight on them, but only when I make it a 1, 2, 3 Stand Game and I lift her up. lol She puts her legs down for few seconds then she sits right back down, and wait for me to say 1, 2, 3 again.  She has the wave down, and when we clap she uses one hand to clap on her knee. She also clocks her mouth.

We had a great Christmas, Lyla got a tons of clothes, books, and toys.

us with our new iphones

 She hung out with some of her cousins

Lyla & Kenzi

Lyla & Archer

Lyla & Addison

And of course she loved on Mommy & Daddy all day long

Lyla had a appointment with the GI nurse practioner yesterday.

We are now increasing her feeds by 1ml every few days, as long as she doesn't start dumping. 

I also had to take her to get some extra blood drawn, because her hematocrit & hemoglobin are low.

We did a stool sample to check for intestinal bleeding, and there was no blood.

They didn't start her on iron, just gonna check her labs again monday and see what Dr. Keng wants to do.

She has been Anemic her whole life, not quite sure why. 15 blood transfusions so far. Its just another thing we deal with.

Well thats about it for now

Hope everyone has a safe and Happy New Year!

SEEING SANTA

Lyla was discharged Wed. the 21st, but before we left we went to the Cook Children's Christmas Party. Lyla saw Santa, and didn't mind him at all.  They had a photo both with funny props, and Lyla hung out with her friend Blaze.

I have been doing her antibiotics at home, it really easy.  

She had a eye specialist appointment today, because she was preemie with a low apgar score. She is a lil far sighted, but the inside of her eyes look perfect. following up in a year.

Memaw came over so Lyla could open her presents, I haven't uploaded pictures yet, but she had the biggest eyes, and she didn't know what to think.

we have a lot going on these next 2 days and lots of pictures to come...

MERRY CHRISTMAS!!!

HOME IN TIME FOR CHRISTMAS

We will be on our way tomorrow.  fever free for 2 days now, and only had growth in the first blood culture they drew. Antibioctics are working good, I will have to finish giving the abx through her central line while we are at home. She had a stomach ultrasound today and everything looked normal, minus the thinker intesine wall but thats from all the surgeries. Before I could never really think of a new yew resolution, but this year I can think of plenty.


Please everyone go to this link and LIKE lyla's photo the SHARE!  Lyla is in 3rd place about 80 votes behind 1st. Which personly I think is balogna because this contestant apeared out of nowhere. We were suppose to have our photos posted on Cooks wall by noon the 19th. I realize there were 2 photos that meet the deadline but Cooks were late putting them in the album, BUT this is not one of those photos. this photo is'nt posted on the wall anywhere...JUST SAYIN!!!
http://www.facebook.com/courtney.watkins3#!/photo.php?fbid=10150459512609576&set=a.10150459512124576.365329.64714594575&type=3&theater

CENTRAL LINE INFECTION :(

Lyla ran fever all through the night. Her blood pressure was lower and lower every time they did vitals. Around noon her heart rate was fast, Motrin and Tylenol werent helping the fever. She was looking pale and sicker. The GI came in and told us the blood cultures were positive, something is growing, She does have an blood stream infection. Now they just have to figure out what kind of infection, and what antibiotic to treat it with. 

They did a bolus normal saline over a hour to hydrate her, and started running TPN for 24 hours again.  Infectious Disease  doctor came to check her out, and decided a different antibiobic to try. 


At 7pm vitals Lyla's temp was normal. She is doing so much better already. She was playing and smiling. She is sleeping good now, still fever free.


Lots of blood work in the morning, and more cultures. Seems to me this antibiotic is working :)


If for some reason it isn't then they will try something else, until they know exactly what kind of infection it is. It can take a few days to figure out what works. If nothing is working then they will have to go in and her remove her central line.  She would get a picc line in her arm until she is better then they would go in and place a new one.   But I think its working!!!

Home for Christmas or NOT?!!?!

Lyla was moaning all through the night, at 3am she had a 101.7 fever. I gave her Tylenol and then again at 730am, and she was breathing fast. I took her to Cooks ER, praying she doesn't have a line infection, and maybe just a typical baby thing this time. When we got there her temp was 103.7, they gave her Motrin and it went down... for a while.


Did labs, blood cultures, urine cultures, and chest xray.
Labs were decent. which I forgot to tell yall, last Monday her labs showed her bleeding time elevated. so it would take longer for her to clot. and we started Vitamin K to help with that.

Anyways... her urine culture had some blood, but everything else looked fine. her urine is very dark and the last diaper I changed had blood in it. It could just be from the catheter. We are still waiting for blood culture.

Her xray showed early signs of pnemonia. They started antibiotics, and she is going to get more xrays later to see if there is more, or less.

She got admitted. We are on the 4th floor, her floor :) its funny because I heard her nurse in the hall say she has the most famous patient.

GI Dr. Olgunmola came in and checked her out. He and I both think she has a infection from her central line, and that is what caused the lung infection. but we have to wait til the blood culture comes back to know forsure. If it is negitive and her fever stops then we can go when she is done with the antibiotics. If positive then we have to find the right antibiotic and all that stuff. & wont be home for Christmas.

Poor baby girl doesn't feel good at all. I will keep yall posted!!!


 Congrats to DJ Kofford!!! He graduated UNT tonight!
Sorry we couldn't be there :( Love ya!

And gonna miss the Christmas party tomorrow with my sister Paige, Jeremy, Titan and Marley. we were doing it early because they are going to Colorado again this year to have Christmas with Jeremy's family. & Congrats to Paige & Jeremy on the new baby to come :) Love yall!

One Happy Baby!

 We went to the hospital to pick up all Lyla's Christmas presents, She was very happy!
Thank You Cook Children's Pharmacy! 

This is Beth, Lyla's pharmacist at the hospital,  Ly liked her necklaces.

Lyla also had a doctor appointment this morning with Dr. Iglesias and everything went good, we started doing distal refeeds again. ugh!! I hate doing it, but have too. 

and After 2 osotmy bag changes within 1 hour, she is pooped out!!! lol

Whats going on since my last caringbridge post

 Lyla has been doing awesome!!! She went home on the 28th and its been great.  Just one concern, she has swollen lymph nodes. The GI, Surgeon, Pedi think they are just from all her surgeries. We are watching them and the Pedi will check them out again Jan. 10th when Lyla gets her 9 month old shots. She has a couple behind both ears, under her armpits, on her side and a couple on her chest.

Other than that everything is awesome.  While in the hospital she got up to 22ml/hr which was the max amount of food to get off TPN. We tried to go TPN and Lipid free for 24 hours, but Lyla's body wasn't ready. She got dehydrated and started dumping.  Now she gets TPN and Lipids for only 12 hours a day., that is better than 18 hours like before, so we will take it. We went back down to 15ml/hr and are going to stay there for a while. She also gets 15ml bottle twice a day. And we started the Imodium again, she gets 1 1/2 teaspoon every 6 hours. and instead of pectin in her formula she is getting benefiber mixed in her formula to help thicken her stool and help her absorb. & She can wave now :)

 

We had a great Thanksgiving, lots of visitors and food. & We were told Cook Children's is sponsoring our family for Christmas. We go Wednesday  to pick up all our gifts. We sat up our Christmas tree yesterday  and Lyla helped put the bow on top. She thought it tasted good!

I believe she will get a tooth soon, lots of drooling, chewing on everything, and sometimes just wants to chew on her bottle instead of eat it. She is getting bigger too, weighs 12lbs 7oz now.

No more posting space in Caring Bridge

I made this blog because Lyla's other page caringbridge.org/visit/lylabaisden only allows so many pictures and words in post. I will be posting her updates here on Loving Lyla Inside Out and also just blogging about our life. I hope you enjoy. Feel free to share with friends and family.