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.