What we learned this time....

Isn't she gorgeous! I love seeing her tubeless. It only lasted a few moments, but she looked so cute.
Lila won this in the ICU raffle. I'm not really sure what it is. But Quinn took full advantage of it while in the hospital.
The dreaded C pap machine.
My poor baby. Every time we go to the hospital she is poked and prodded. Here she is with bandages on each hand and each foot. What a trooper.

Well, this hospital stay was some what informative and thankfully shorter than the rest. Lila had a kidney infection which made her throw up (the saddest thing ever! Thanks Nikki for being so wonderful!) and get a fever. Actually something that I was excited about because she really has not had a fever with previous illness and the doctors were wondering if her internal thermostat wasn't working due to her "neurological whatever". We checked in on Tuesday and went straight to the ICU. I must say we are starting to get to know the staff in both the ICU and the infant unit.
On Friday we had a huge day of tests. She had a repeat echocardiogram, a swallow study, and an ultrasound of her renals. The Echocardiogram showed that her heart function is looking better but they don't know if that is from the virus getting better or the new heart meds that she is on, so a repeat is needed in a month.
She failed the swallow study. I knew that she was going to but it surprised me how much I was disappointed. That seals the deal that she will need some form of feeding tube. We have to do a PH probe (another night in the hospital) on Tuesday to see if she can have a normal G tube or if she will need to have part of her tummy wrapped around the top of her esophagus to reduce reflux. UGH!!!
The renal ultrasound showed that her kidneys are fine, but we will have to go back for more testing.
The discharge note that we get at the end of our stays are getting longer and longer. The diagnoses that are shown keep getting new additions. So far these are her diagnoses: Encephalopathy, genetic syndrome (which is funny because they have never found anything genetic or abnormal with genetic tests), Abnormal EEG but no clinical szs, developmental delay, agenesis of the corpus callosum with congenital brain malformation (also funny because I don't know what else is malformed besides the ACC ), hypotonia, larynogomalacia, silent aspiration, cardiomyopathy, Bilateral cataracts and latrogenic adrenal insufficiency
I'm feeling pretty defeated. I think we are coming to the end of testing. We will just love Lila no matter what her capabilities or how long we have her.

ICU regulars

On the C pap machine. Definitely not a fan. She is such a brave soul. She was gagging and gulping for air, yet intermittently still giving me smiles.

Who you calling chubby??!!

My beautiful baby! What can I say? We are back in the ICU. Last night we were told that she has either a kidney infection or maybe heart failure.... um.... those are big differences.
Turns out she does have a kidney infection, but they are still concerned with her heart. She had an echo today and the heart looks good. The left ventricle is working harder than the right, not horrible news though and the valve to the outside of her body is a bit tight. They gave her meds to help that and hopefully it will resolve itself. They said that she has mild decreased heart function. We may have to take heart medication to regulate heartbeats and rates for an unspecified time. A follow up with cardio is needed in a few months. Just throw them into the mix, we really don't have enough specialists or doctors : )
My gorgeous nine month old (today) is such a trooper. She stayed up till two in the morning last night on high flow oxygen giving me smiles and sly looks from under her ridiculously long eyelashes.
I have been starting to get the feeling that this little angel may not be with us for very long. -Quinn does not feel the same.- I am trying to take advantage of the time we have with her. For every little smile and laugh and for periods of easy breathing and comfort. My heart sings every time it seems like she is looking at me and just melts when it is followed by a smile. I love how she will put her hand out to touch your face if you lay it by her. I don't know if it intentional but I would like to think so. I Love how she grabs her daddy's nose and pulls as hard as she can, and how she now thinks her sneezes are hilarious. I am absolutely smitten (as if you couldn't tell from this blog) and feel blessed for every moment, even if it is in the ICU.

Happy Easter

Saturday morning we had breakfast with my family.
Lila in her Easter clothes from Grandma Kimball

Lila has been keeping her Binki in all by herself lately. I am so thrilled. I was starting to think that was something she may never master. It's so cute! I love binki babies.




I think Lila will be known as "Baby Lila" till she is grown. I think the little cousins actually think that is her name.

Happy Easter everyone!

sick of the tube!

You can see how she pulled back the tape by her nose. She sticks her little fingers in there and goes to work. I like to think that this face is her telling me what she thinks about her tube. not a fan. Thats ok, I'm not either.
My little girl has started to figure out how to pull the tube off her face. All we do all day is pull her fingers out of the tape. Smart lady.

sock monster

Quinn and I were joking the other day that the one constant at our house is that Cubbie is a little punk. No matter what kind of day we have had, she never knows. She always acts the same. It's kinda nice.....

music.

A cute friend of mine was talking about Lila to the owners of the imagination place in brickyard. They were touched by our story and offered Lila a full scholarship for a music class. We went yesterday, I'm not sure if Lila liked it or not but at least she was getting the stimulation from the music and all the other little kiddos. That was so nice of the owners and it really meant a lot to me to do some "normal" activities with her.
I must admit it was a bit tough. All the moms were talking about when their kids sat up, rolled over or started to scoot. I felt a bit left out. I was wearing my courage bracelet from Nikki and felt a lot of comfort knowing that a courageous mom I know does everything she can to make her daughter feel as normal as possible, even if it's not the most comfortable situation for her. Plus my little love bug is the most courageous girl ever. She takes everything in stride.

We met with the GI doc yesterday as well. Good and bad news there. Bad news, No G tube. Good news, he seems to think that the best thing to do is see if she grows out of it. Which means this may not be a chronic problem. He was encouraged by her cough and gag reflexes, something that the docs said she didn't have when we were inpatient. It is so funny how so many doc have such different observations and opinions and they can vary so widely. So good news in that she may grow out of it, bad news that we are stuck with our NJ feeding tube for a bit.

The worst day with the best baby

You know those days where you wish you had just slept in and skipped it? That was today. We were discharged last night. We were told she is still sounding awful and has a high heart rate but that may just be due to her "neurological whatever" (are you sick of that term yet too?) So you might as well go home. After loading up the car I noticed that someone had hit the side of my car and not left a note. Nice. The whole side is scraped and dented. Both panels.
Then this morning I tried to put Lila's meds through her tube. It was completely clogged. (Never mind that it had clogged in the hospital and we just got a new one) So off to Primarys we went calling all the necessary doctors on the way to get the paperwork to get a new NJ. We got the new tube and decided to go see Grandma since we were out that way. Little Miss told grandma all about her day. It was really cute Lila was "talking" to my mom with a very serious look on her face for quite a while. We were joking that she was telling her all about her funny mom who was so happy until she frantically ran out the door to Primary's.
We headed home and while getting out of the car the tube caught and got yanked out again. So once again we headed back to Primary's. Calling all the doctors on the way to get all the paperwork in order to get another NJ placed. It was rotten.
While sitting in the waiting room feeling rather bad for myself I leaned down and told Little Miss how sorry I was that I yanked her tube out and that she would have to get a new tube shoved down her throat again. Lila looked up at me and just beamed. She gave me the sweetest smile. Every once and a while Lila looks at you like she is really is recognizing you, staring you right in the eyes. It doesn't happen a lot but it seems to be getting more frequent. She just melted my heart. I feel like Lila is my little partner in all of this medical menagerie. Except she is the strong one. I felt very blessed for her comfort on such a rotten day.

What we learned this time....

Pediatric Intensive care unit

The only good thing about Primary's. The slushies

Getting a breathing treatment

The cute nurse gave Lila a bow. It was more like a hat! I was scared it wouldn't work, I thought she didn't have enough hair for a big clip. Turns out she does. So cute.

Lila went home with home suction. She is not a fan. She sticks her little tongue out so you can't stick it in her mouth.

Lila's new friends. We named them Alfons, Enrico and Scooter

So, here is what we learned. Lila's went into adrenal crisis because of her going off the steroids cold turkey. Natural steroid production is considered pretty low under 7 Lila was at a 1. Her body couldn't fight off a simple cold. All of her virus swabs came back negative, so probably not RSV.
We also found out that Lila has a floppy airway. It has a very serious sounding name but basically thats what it is. They are hopeful that it will resolve itself with time. But that pretty much means that Lila will need some sort of feeding tube for a while. We are hoping that the doctors decide to put in a G tube. That is a tube that is surgically inserted straight into her tummy with a port to the outside. She hates a tube in her nose (pretty obvious) and I think it makes all of her congestion even worse, she is starting to fit her nickname Lila bear, with all the grumbling sounds she is making these days.
We also found out that the nutritionist that we were working with grossly miscalculated what Lila should be getting with fortifying her milk. She was given way too much so she has been gaining 67 grams a day instead of the 10 she should. I am beyond mad. We won't be seeing her again.
Another odd thing. Lila only has gag reflects once and a while. She gags at tongue depressors and suction but when the ENT docs came and scoped her she hardly seemed to notice. The were touching the sides of her vocal cords and she just patiently waited till they were done. Something they have never seen before. They said that could be due to her "neurological whatever" a term I am fast coming to hate.
While she is here they tested her pituitary gland, liver, thyroid and some other things and once again all have come back normal to our delight.

Thanks

Hospital stays always show you how great of friends you have. Thanks Grant and Crystal for these cute cookies, and thanks for dinner the last hospital stay.
Thanks to Michelle and Bart for bringing dinner and having "date night" by Lila's bed side. We gave the nurses lots to chat about I'm sure.
Thanks to grandparents who watched Lila so we could go grab a bite to eat.
Thanks for cousins, an Uncle and Aunts who visited. Especially the ones who came everyday. I don't know how I could survive with out you.
Thanks for the phone calls everybody. It means a lot to know others care about the most important thing in our life.

We are still here, but we heard a rumor she might be going home.......

Intensive Care Unit

Well, Lila has decided to see every specialist and go into every room in Primary's. Monday morning Lila was checked into Primary's and sent to the ICU. She is on high flow oxygen to help her breathe better. They also wanted to monitor her high heart rate. She is still being a little trooper. Even giving me big smiles yesterday. She has seen new doctors and new specialists and getting tons of new tests drawn. It's kind of getting old hearing, "Wow, that doesn't make sense"
I am happy to report that today she is stable enough to move to a normal room, however we will be at Primary's for a while.

Grace

Our niece Grace got baptized on Saturday. Little Grace has a special place in my heart. Kelli wanted a little girl so much and we were all thrilled when she came along. It was so fun to have a niece. She was the most gorgeous baby and she continues to be beautiful inside and out. She is such a sweetheart. She is always willing to help and is so caring. I love her to pieces. We are so proud of you Gracie!

Since I don't cook this was my contribution to the day. I thought it turned out rather pretty. Of course Gracie looked gorgeous in her special outfit!
I also tried to lead the music, and got totally lost. Sorry about that! When we were reading up on kids with ACC it said they aren't very musical, I don't think the little lady had much hope anyway. We didn't get the talent in that area.

ok, I know this a post for Gracie but I just had to put a picture of this dress on. Isn't it to die for? It was a splurge of mine and it didn't fit for forever, now after steroids it's getting a bit tight and she has only worn it once, so I had to at least put it on here to remember it. oh well, it's so beautiful.

Nick

Here is my sweet nephew Nicky. Oh how we love him. He was baptized in January. Sadly we couldn't make the trip up to Eugene to see him. Even though we couldn't be there I wanted him to know how much we love him. He is such a great kid. He is a sweetheart and never fails to make us laugh. I hate that we don't get to see him on a regular basis but he is such a big part of our lives. We love you Nickels and we are so so proud of you! I can't wait till we get to see you again!

St George (AKA She's back!!)

LOOK!! Look who is smiling again! I have been crying so much this week. Actually happy tears this time. My baby is smiling again. After about two months of no expressions I feared that I had lost her for forever but Friday, the day after we had stopped the steroids we were driving down to St George and my sister laughed loudly and Little Miss got a little smile on her face! I couldn't believe it. Ever since she has been so cute, Smiling and even Laughing!
After being cooped up and trying to avoid every social situation, since the steroids cut down on her immunity, I was feeling a bit stir crazy. Since my sisters kids had spring break this week I decided to tag along (thanks!) and head down to sunny St. George. After a rough start (I pulled out Lila's NJ tube while getting into the car and had to run up to Primary to get an X ray and fix it before we left) it turned into one of the best trips. I felt like I had my baby back. I don't know if I conveyed it in the blog but a week ago Lila was not moving, having any expression and she was looking pretty grim, but miraculously she is smiling again.
I pray that it doesn't go away! Of course, we came home with some sort of virus and she is having trouble breathing and sleeping. We have already been to the doctors with more appointments later today, but so far she is still smiling. Something that I have learned about my baby, when she hurts or is uncomfy she doesn't cry she just checks out.
Other things I learned about my baby this week. She is patient, she LOVES to play, She never wanted to sleep because she was so excited to play (or that could have been a side effect from the steroid withdrawal) She has the sweetest little giggle, she loves noise (her laughing, screaming cousins always invoked a smile) She loves to be talked to, She likes to giggle at her light box, She loves to be surprised, when you would startle her she just got a huge smile. When she feels good she is just truly happy. The happiest, sweetest little angel.
The pool was closed so the kiddos improvised, but still had a blast!
Looking at her light box

Thats one way to watch conference....

Doesn't that smile just melt your heart? Especially since I haven't seen it in months, and really thought I would never see it again.
Her Hawaiian hair-do provided by Benny.



Love these crazies! They were so cute this week and very hilarious. They are so cute about Lila. They were so into every smile and laugh. It has been so touching that they love her to death even though she isn't the typical baby. They have never said anything bad about her or made me feel like she wasn't going to be included. Love you guys!
We went to Vegas one day and enjoyed the great weather, yummy food and walking around the amazing hotels. The Billagio (sp?) gardens. So breathtaking!

ok, a bit of a cheesy post: While I was thrilled about Lila's smiles it's always hard to see kids her age. She should be sitting on my hip, grabbing at my necklace, all those little things. So seeing little ones in Vegas was a bit rough, especially since Lila's tube attracted some stares. (I'm not offended, I understand) But while going through the gardens there was this big patch of pink tulips, which happen to be my favorite flower, with one bright yellow tulip. I just started to cry. The story that my mom gave me, and a few other mothers of special needs kids passed along to me, of Holland came to mind. That having a special needs kid is like planning your whole life to go to Italy and then to end up in Holland, and while you mourn the loss of Italy you start to realize that Holland is pretty great. Holland has windmills, Holland has Rembrandts, Holland has Tulips.
Lila may not be like other kids. Ever. But she is beautiful!!! She is special, and I am so Lucky she is mine.

These ladies are so great. Everyone should be so lucky to have a mom and sister as their best friends. Especially these two. It was so great to travel with your own caring personal pediatric nurse and smitten grandmother. It was a pretty heartfelt weekend with all of us getting teary constantly. It really is touching to see that others care for your daughter almost as much as you do, and are just as thrilled by every laugh and smile.
Thank you so much ladies! I really appreciate all you do. You have been so great through all of this. Thank you for rolling with my crazy life. From running up to Primary to replace a tube, to coming home early for eye appointments I am so incredibly touched and grateful.




It was so fun to have a daughter that is interactive. I felt like a normal mom for a moment, and may I just say it's Awesome!!! I was addicted. It's better than anything I have ever experienced. Seeing my little lady smile puts anything that I have seen on this Earth to shame. Kenya, the Amazon, Europe, nothing compares. That smile is by far the most amazing thing yet.