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.