Coping and Adjusting :)

Aiden at home

We've been home for 5 days and I must say.... I'm not sure I knew what tired was before I became a mom ;). Aiden's special nutritional needs are keeping Jeff and I on our feet. He needs to eat every 3 hours (60 mls or 2 ounces) and I have to pump breastmilk at that same interval. So first I pump... then we offer the milk in a bottle to Aiden. He has 20 minutes to get the bottle down before we give it through his feeding tube. He has been taking anywhere from 30 to 50 mls so we're pretty happy with his progress. He is sleepy alot and we have to struggle with him to stay awake to eat. After a diaper change about 1 hour and 15 minutes have gone by and by the time we settle down to sleep there's only 2 and a half hours before we have to do it all over again! Add changing extra diapers, feeding and walking the dog, feeding ourselves, showering, doing chores around the house and answering phone calls and our day is full!

Aiden is getting stronger every day. We went to our first pediatrician appointment and the doctor heard an irregular heartbeat and insisted that we go immediately to Children's.... yes... there was some irregularity to it but nothing to be concerned about. The doctor decided to do a quick echo to check out his heart function and it turns out that his heart almost looks NORMAL! We were so excited. The aortic valve is very minimally dysfunctioning so over time we're hoping that all the medications will be stopped. We started to wean the lasix already. Tomorrow we are adding some extra volume to his feedings to try to get him to gain some weight. We are at 8 pounds. We've lost 3 ounces.

Today I pulled out Aidens feeding tube by accident and had to have the visiting nurse put it back in. I was trained to do it at children's but I just couldn't stand putting Aiden through another procedure. Aiden loves to be held and cuddled but anything out of the ordinary (diaper change, bath, changing clothes) yeilds screams that the neighbors can hear. If nothing else we're happy that his lungs are good. He has a funky diaper rash going on but other than that - normality is setting in. I'm finding myself now stressing over the normal baby stuff and the visiting nurse keeps suggesting that I drink some wine :) I may take her up on it tonight!

Again - thanks to everyone who has supported us through this whole ordeal. Jeff and I felt sick yesterday entering Children's again... but thank God that the hospital exists.... and thanks to all the special people who work there. We will be big advocates for the congenital heart foundation from this point on. If you are interested in supporting this foundation... more information may be found at childrensheartfoundation.com. Jeff and I are planning on sending gifts to the CICU each year for the patients. We received many gifts from other families during our stay there and it was really helpful to keep our spirits up.

We'll update our progress as we go. We want to wish all of you a Happy Thanksgiving. This year we are saying an extra prayer of thanks for all of our family and friends who have helped us to pull through this ordeal. Most of all, we are thankful for our little star.... Aiden Michael.

God Bless and Happy Holidays!

Kimberly, Jeff and Aiden