The Month I'd Like to Forget..

The end of January and most of February were extremely hard on our family, and I cannot thank you all enough for the wonderful care we've recieved, the hundreds of well wishes, and the emotional support given to us by our families.

On January 24, I took Mila to the ER for a deep chest cough and fever. We waited seven and a half hours to be seen. All I wanted was a xray to rule out pnumonia.... The xray showed that she didn't have pnumonia but that her heart was severely enlarged. (What? An enlarged heart? WTF is THAT about?!?!)

And then they discharged us. Thursday night, friday, and all day saturday she did not pee. Not even a little. I took her back to the ER and her 02 level ( oxygen in the blood ) was only 91% and her heartrate was 200. She was clammy sweaty and inconsolable. She was in heart failure.

Mila was later diagnosed with a heart defect called ALCAPA - anomolous left coronary artery from the pulmonary artery. Her heart was not recieving enough oxygenated blood and therefore she was having angina and heart attacks that led to major heart damage. On February 8th, after battling Influenza B ( which is what brought us to the hospital in the first place ), Mila had open heart surgery to repair the ALCAPA defect. She spent 27 hours on a ventilator, 3 days in PICU, and another 5 days on the Cardiology Kids unit at the Stollery Children's Hospital. She was discharged, but returned for two days for unexplained fever.

Mila now has an NG feeding tube. All of the feeding difficulties, the sleep refusal... almost all of it was directly related to her heart defect. Without the constant care that I gave her, and the incessant bugging of the doctor, Mila might not be here today. I thank my lucky stars that the ER doctor took me seriously and admitted her. He also ( willingly ) let us bully him into the echocardiogram a friend of ours suggested.

Thank you, thank you to the following people for the support we so desperately needed : My inlaws & BIL - for the care of Robby, the nightly meals, and other support they gave us while we were in hospital. Dr. Michael Nikolakis - for suggesting the echocardiogram and being willing to fly home from the states in an emergency if we needed him. Dr. Wincott - for admitting her and running the echocardiogram. To my parents - for flying in the night of her surgery and staying with us while Mila recooperated, helping me with Robby, and other great tasks. To my friends, Sarah, Raelynn, and Kristen, for lots and lots of coffee and hugs.

Mila is expected to make a slow but complete recovery.

For My Dad

Here you go.

Who is This Child?

Who is this child and WHAT HAS SHE DONE WITH MY MILA?!?!?

Yesterday, Mila ate a few bits of fig newton, a few bites of turkey, a bottle, and took a 3 hour nap. Then she got up, ate a few bites of peas & carrots, half a slice of cheese, and played happily. Then she slept almost ALL NIGHT.

Is this because I finally got the doctor to listen to me? Probably. I can assure you, though, that she stil is refusing purees, and anything off a spoon or fork. I truly believe she does need the food therapy. She certainly won't be ready to come off of the formula at a year - most of her nutrition still depends on it.

The sleep thing is amazing. It does lead me, however, to the thought that maybe she really does have a sensory processing disorder - sleeping & eating ony at home do support that theory. Its been a welcome change though. Today will be the test though, of how she does while we are at work. If she goes back to not eating, not sleeping, I will have to re-evaluate my desire to work and her ability to cope with it. If the only thing that will help her is being home, then by God, I will quit on the spot and stay home with her.

Alex and I both have nasty colds, and Robby is just recovering from his. It was a rough couple of days with him - the advil kept the fever down but right at the 7 hour mark, it would shoot from 100 to 103 within half an hour. I'm thankful that it turned out to be just a cold though. Even if he did share it with us.

Its snowing - nothing new there. Big Yellow Gym is experiencing staffing problems and I've hired a new person who may or may not be my replacement. As *I* interviewed her, and *I* hired her, *I* would expect to be getting a pay raise. Especially as *I* hired her at a higher pay rate than my own....

The invitations are addressed and on their way out. The list of things we still have to do is slightly overwhelming...

Yogurt

Here is Mila trying to eat some yogurt. Notice how she turns her head and gags before I even get it into her.

http://www.youtube.com/watch?v=CdZ2gJVlA1o

http://www.youtube.com/watch?v=363eNHIXCwM

Typical feeding session.

This is the face of a Feeding Disorder

Mila continues to struggle with eating. She's developed chronic diarrhea. She refuses to sleep. We are all extremely disheartened. She's keeping hydrated and may very well be gaining. But right now, all I can say is that no one is sleeping, no one is happy.

I oscillate between wanting to believe that she is just a normal, skinny little girl. But normal little girls at this age sleep at night, and nap during the day. Mila does neither. Normal little girls finger feed themselves. Mila has stopped doing this and most often just throws the food to the side. If she does get a bit in her mouth, she scrapes it out like its burning her. Normal little girls will eat purees. Especially fruity sweet purees like apple and pear puree. Mila wouldn't touch it with a 10 foot pole.

Normal little girls don't gag when their hands touch something cold and slimy. Normal little girls don't choke on unthickened formula. Normal little girls have normal growth curves.

Here is a small series of pictures as I try to feed Mila a bite of bread. Look at how distressed she gets. THe last photo, she is pushing my hands away and shielding her face from me..I am trying to capture a small video soon to show this as well.