Mila.... Sarah's Update.

Sarah sent this update about Mila:

Mila's having a rough go of it!!! She vomits at least 1 feeding a day, especially if she is upset. She gets 6 feeds a day of 140 mls ( but we put waaaaay more than that in the bag because we have to prime the line with formula, kwim? ). She's getting 840 calories a day, because her weight for height ratio was somewhere around -50 %. That was very scary to hear, and I've been working super hard to get every single calorie possible into her. She's gained an entire KILO ( 2.2 lbs! ) since getting the ng tube! Can you believe it? I run her feeds over an hour, at 8am, 11am, 2pm, 5pm, 8pm and 11pm. Six hours of being strapped down. She hates it. I don't blame her!
Mila takes Captopril for her heart, Lasix to make her pee, and Priolosec ( Losec ) and Zantac for the reflux caused by the NG tube holding the LES open. She gets 3 meds in the morning, one in the afternoon, and four at night. Her blood pressure is often 115 / 55 instead of 85 / 45 which is what they'd REALLY like to see. Unfortunetly, the Captopril for her heart is soooo thick and nasty she won't drink it ( 8mls ) and it won't go easily through the tube! I can't tell you how many times I've pushed a little too hard and SQUIRT! The NG and the syringe pop off and captopril stickiness is everywhere!!!! UGH!
Thank GOD, Canadian Health Coverage pays for her formula, cause there is NO WAY we could afford it at $289 a case for five cases a month! NO WAY at ALL. They also pay for the duoderm, tegaderm, tendergrips, the ng tubes, and the syringes! And a loaner pump, and an IV pole... and all the bags!

My house is a wreck, I have quite literally Mount Washmore waiting for me, my parents are here everyday, my inlaws are here everyday, and Mila can't leave the house for fear of germs! Bacteria and viruses can lodge in the scar tissue in her heart and cause her heart to fail again. Aghhh its so hard to believe that all of these problems were heart failure. HEART FAILURE. In a ONE YEAR OLD. And she was HAVING HEART ATTACKS!!

Obviously Mila and her family need our prayers daily! Thanks.