Sunday, November 21, 2010

Movin On Up!!! - Updates from November 20 and November 21

Great news has been traveling fast!  Lillian is progressively getting BETTER and was moved up and out of the PICU today!!

Please see below the events that led up to Lillian's move on up :)

November 20
"I have been fighting with the nurses 24/7.  We have to be too close to the next patient"

"So, that's the only area for me to sit.  And where that nurse is, that's the other patient's bed.  They have the little girl's mom, dad, grandma and two brothers in the room visiting."

"Lilli is in the polka dot bed.  And you can see that there is only a foot and a half between beds..."

"You can only have one visitor (according to the rules) and no one under 14.  But they are having 4 visitors and the brothers are both under 14!"

When Lauren asks the nurses about it they say "I can't move bed spaces because more patients may come in.  And to be patient because she'll be moved to another floor soon."

"Left is Lillian's bed.  Right is Esmerelda's bed.  And because the oxygen cord is so short, I can only sit right where I am (where I'm taking the pic).  Esmerelda is 2 years old and has surfactant deficiency (lung disorder) and some of the things that she's going through are right next to Lillian and her bed.  Not sanitary, at all."

"I would try to fight more for our "rights" and have us moved somewhere else, but we are already going thru this ICU trauma."

November 21 
"I just have one of those feelings that today is going to be fabulous... Let's GO Lillian! Cheering for her, screw all the games on today ;-)~"
"We get a private room with Lilli on the 7th floor, progressive care unit!!!! Whew! Almost out hopefully! Now I get to sleep w her!!! And have my own shower bathroom!!!!!!  I knew today was gonna have somethin good ;-)"

"Lillian is getting better.  She is being weened off high flow oxygen.  Her ativan is weened to every 6 hours and methadone is down to every 8.  She is done with Antibiotics!  She weighs 10.3 pounds now!! When she arrived in the hospital on November 11 she weighed 9.3 pounds!!  Tomorrow will know more because her pulmonary team will come visit!!"

All of this is great news and we are so excited that Lillian is getting better.  Please pray for continued progress and health for Lillian.
Thank you!

Here are some more pics of Lillian taken over the last few days:

Thanksgiving with meaning!

I dont think I have ever been as thankful in my life as I am this year.
 I am so thankful for everyone reading this that sends their prayers and thoughts and kind words to us!
I am obviously SOO thankful for my daughter :)
For Amanda Hoyt for making me this blog to spread the word on CDH and TS.
For Doctors and nurses
For my amazing family
For the having the best friends I could ever ask for
For kind people who volunteer :)
For encouraging words from strangers
For the internet because its been the best support group yet- Gina,Janine,Donna,Sarah...
For God, for giving me Lillian for strength, as my backbone, and to let me know that Im THAT special that I get a special kiddo :)
Hmmm.. thats my short, of the top of my head list!
Amanda has been updating, so Thank you, but while I had a second I wanted to say thanks:0)

Saturday, November 20, 2010

Sorry for the delay - Updates from Nov. 18 thru Nov. 20

Lauren, I'm so glad you were able to update the blog last night.  I wish we all could do more than pray.  I'm sure all of your followers feel the same way.  Please let us know if there is anything specific you need while you and Lillian are in the PICU.

Because I was unable to update the blog on Thursday and Friday, I collected Lauren's facebook posts in  order to update you on Lillian's progress.

Please forgive me, Lauren, if I go over anything you put in your blog post earlier.


Thursday (November 18)

“I can't wait until tomorrow. Everyone say a short prayer that I get to hold Lillian after 7 days of watching her lie there!!!! Been there done that, got a tshirt! Ready to move on!!!!”


“Extubation was miserable. Just one more experience to add to the list. Poooooor Lilli. She is doing OK now, just working on getting her heart rate down. It was at 220. She is on a nasal canula and they r giving her some meds to calm her down. She can never do things the simple way...!!!”


“I am officially admitting that I'm either the worlds strongest mom, or I'm heartless. That experience was Sooo damn stressful and psychotic.. And I'm still living and dry eyed... I'm sure it'll come out the second someone pushes one of my buttons!!! :-)”

 Friday (November 19)


"Another long. Hard. Unpleasant phase of life has begun. If only everyone lived near me that could understand :-( Not able to calm my own baby. Having to give her more meds. All because she doesn't like these tubes up her nose and tape touching her.... My poor baby. I wish my TS support moms lived closer"


"They began steroids to reduce swelling in her throat.  Gave her Ativan at midnight and we will give Methadone at 1."


"Alright so. They r only giving breathing treatments as needed, don't seem to be worried about the crud. The steroid could make them a little crazy- agitated, Ect... So not worried about that. Watching her today, may be moving upstairs in te next couple days. Which is the progressive care until where mre ppl can visit.... They are not going to go down on the flow of her oxygen just yet, maybe tonight."


"I'm so grateful for this beautiful child I have."


 "Took a break today to get my hair done and relax. I regret it. Shoulda stayed."


"She had a rough day while I was gone.  She's ok now.  Heart rate is 130 and she is sleeping now."


 "The only way I could get her to sleep was by UNswaddling and giving her silky.  This is what she did with it."


"Sleeping. She just wants to leave! So she decided to hide til it's time."

Saturday (November 20)

 "Catching up on ZZzz's"

"I'm going to f*ing punch these stupid ass uncaring nurses in their lazy ass faces. GET US OUT OF HEERREE!!! - none of this is directed Towards my Nicu nurses, I wish you could all rotate down here for me. I'd pay you out of pocket!"


"She's doing better. They just need to start weening Her oxygen now"


Friday, November 19, 2010

It's me! Updating from my phone this Friday evening!

Lillian was EXtubated yesterday(they took tubes out)
It was just another experience to add to the list, she sure hates cooperating!
Her heart rate was around 220 for an hour!! We jut could NOT calm her!!! Yesterday really broke me down. Trying to work my magic and staying strong for her wore me out emotionally. I haven't even held her today really... I attempted to go rejuvenate myself by getting my hair cut and relaxing, but I'm mad at myself for leaving because there was drama with her. Luckily my sister was here with her. With methadone and atavan her heart rate has gone down and she is getting formula in her belly again now... Hopefully only a few more days here... Thank you from the bottom of my heart for the support and prayers. God deals some pretty wild cards for us!!!!

Wednesday, November 17, 2010

Update on Lillian's Progress (11/16 thru 11/17)

Praise the Lord! Lillian is getting better!

I have the following updates from Lauren:

November 16:

"Begining weening. But nothing official. Slowly lowering vet settings. Hopefully late tonight will be off. BUT now, abnormal signs on her left lung, which was the originally undeveloped lung. They are looking into it. I have called her pediatric surgeon and her pulmonary dr to discuss and get an idea of what may be wrong. That's the days update for now!"

"I'm so glad I learned how to be my own best friend before all this...
It's the best advice I can give anyone. Because sitting up here alone is just loads of miserableness but I know how to comfort and entertain myself!!"

"She got ahold of some fingers!! And smiled at me today! I believe she's ready... She told me so..."

November 17:

"Plan is to cut feeds in middle of night, and try no vent tomorrow!"

Tuesday, November 16, 2010

Update on Lillian (11-15-10)

Lillian is getting a bit better & Momma Lauren is just hoping and praying that she gets to get extubated and gets to go home soon.

In her own words, please see below - her heart is hurting now. Please pray for her and for Lillian's health.

Thank you,

"Laying in room at Ronald McDonald house. I hate this journey I'm on right now. Dying to bring my buggy home and hold her and see a smile!!!! ... I literrally think I'm dying. Ouch"

"Okay! Enough whining for the day- gotta get out of this squeeky ass Rondald Mcdonald house bed that has now ruined my back (had to get one more complaint in) AND OFF to go see my bundle of sweetness. Hopefully doctors rounds will fill my Monday with great news!"

"Update is: no real talk about weening ventilator. They will lower settings, but, not ween off anytime soon. Giving her 7-10 days worth of meds they use for pneumonia. Lowering pain meds (which to me is good sign bc they do that in order to test her off ventilator)."

"Uugghh I want to hold her and snuggle!! This time is so much harder than before.. :-(
I need a representing doctor just for Lilli... I hate the way this Picu is run!! (said I was done whining. I lied.)"

"I just looked thru allllll my friends on Facebook with kids Lillis age or younger, and.... Lilli is not like them. And that's hard. I hope you all know that that is hard for me. Bla"

Sunday, November 14, 2010

Update on Lillian (11-14-10)

So far, from what I know today, Lillian might be extubated on Tuesday.
Here are a few pictures from today.

Thank you for your prayers.

Be on the lookout for the latest issue of Cy-Fair Magazine. An article features Lillian's story.

Saturday, November 13, 2010

Lillian is in the PICU at Texas Children's

Friends & Family,

Lauren wanted me to ask you all to pray for Lillian.  She has been in the PICU at TCH since Thursday night.  I will try to update as we know more.

On Wednesday, Lauren took Lilli to her pediatrician. She put her on breathing treatments, antibiotics and had her blood drawn because she's been wheezy. She got worse overnight and very lethargic so on Thursday, Lauren decided it was too much.  She took her to a free standing ER and they called the pediatrician and she had her admitted to Texas Children's. Lillian was taken by ambulance to TCH.

At 3:10 on Friday morning, Lillian was sedated and intubated because they couldn't calm her breathing.  She also had a higher than normal temperature, high blood pressure, low 02 levels and high white blood count.

On Friday at 6:15 pm, Lillian’s blood tests had been run, X-rays complete and an EKG done.  All came back more or less "good". The doctors assume she caught a virus and just couldn't handle it with her tiny body. She is fighting hard. She is still completely sedated and intubated.

At 9:00 am today, Lauren was told that Lillian is running a higher temperature.  She feels awful because she slept all night.  Doctors are trying to say that her temperature is up because she is under her blankey, but Lauren knows what her normal temps are and they are not 100-101.

At 10:00 am today, we found out from Lauren that she is looking at another 10 days in the PICU. Lillian’s temps are higher; she has lots of phlegm, and dry diapers. They can't decrease the ventilation settings at all today because she isn't tolerating it well.

Please continue to pray for this precious baby and her mom. 



Lillian Wednesday (11/10)

Lillian Yesterday (11/12)

Lillian Today (11/13)