Whew!

It's been a crazy few days. We have been so busy that we haven't had time to write an update. We're still adjusting and trying to settle into a routine. Matthew is taking four medications, three of them twice a day and one is an injection (I try to convince Daddy to give it because I can't get comfortable with sticking my baby with a needle but I'm getting there). We also have to chart his oxygen saturation, heart rate and weight daily along with every diaper change and the exact amount of each feeding. Due to stomach issues that heart babies have, we have to mix Mom's milk with Nestle Good Start, for extra calories and Honey Thick to thicken the milk so that he won't throw it up (it's almost pancake batter thick).

He absolutely hates the taste of his stomach medicine. His Doctors warned us that it tastes something like rotten milk and judging by Matthew's reaction it probably does. We're still trying to figure out the best way and time to give it to him. First, we tried to give it to him after he ate and took all of his other medicines. He, of course, quickly threw up his stomach medicine and all the other medicines we just gave him along with most of his food. Next time we decided to give it to him first so if he threw it up he would only be losing the one medicine and not everything. He hated it so much he refused his other medicines and wouldn't eat for us. We finally moved his schedule so that he receives it between feedings. This way he only seems to throw it up every third try. So far so good.

We had scares two nights in a row where he cried for 2 hours (stomach pains) and it caused his oxygen saturation to go down and his heart rate to go up. We were told not to let him cry due to the stress it causes on his heart (especially between the first 2 surgeries) and how it lowers his oxygen saturation. It's so scary because we know it's bad for his heart and we have know idea what to do for him we he gets like this. We put our coats and shoes on to leave for the hospital and then he calmed down. I called the hospital today and found out that we can give him another medicine over the counter that we hopefully help with his stomach pain. Thankfully we're slowly learning which cry means I want Mommy to hold me and which means he's in pain. It's a learning experience and we feel like we're constantly on pins and needles but we think we're starting to catch on.

We have two doctor's appointments this week and we're worried about his weight. He has been losing weight since we brought him home and he is now below his birth weight (he got to over 8 lbs in the hospital). If this continues he will have to be admitted back into the hospital so please pray that his weight picks up. He is doing well with his eating, we are trying to increase his intake every day. We wake him every 3 hours for his feedings and his is averaging 60 ML (about 2 ounces) per feeding.

We're glad to have him home and I'm enjoying the cuddle time. He knows how to work me already so I've had to say goodbye to housework for awhile (which is a hard thing for me to do). Daddy is a big help and Taylor is starting to adjust. As far as sleep goes - who needs it! Ha! Ha!

We will update after we see the doctors on Tuesday and Wednesday. Keep us in your prayers.

Love,
Craig, Amy, Taylor and Matthew