Saturday, May 12, 2012

Our Own Way

Now that we've been home for two whole weeks, our routine is starting to feel more routine. However, I still feel like I haven't found much more time to accomplish anything! Of course, the favorite part of our day is snuggling and loving on Blaise- he is the best baby we could ask for! He is soo sweet, has the best expressions and just loves to be loved on! Of course, I never want to put him down, so we spend many hours just rocking in the chair.

Today is Blaise's one month birthday! He already had Happy Birthday sung to him this morning! :) These milestones have such a greater meaning to us! We will update with a second post on that later on.

Beyond all of the "typical" newborn care at home, Blaise also has quite a few unique things that we have to do. I'll highlight some below for those that are interested in the special care he recieves.

1) Feeding: Blaise wasn't allowed to breast feed, due to the excessive energy it takes to do so. His heart functions twice as hard as a normal humans, so for him it feels like he is continually running a marathon. Originally we were only to allow him to suck the bottle for twenty minutes, otherwise he would be burning more calories than he was taking in. In addition, that is why we were adding formula to the breast milk, to increase his calorie intake. Since he has taken off on bottle feeding, and has a very sensitive stomach, we've actually taken the formula out of his bottles now.

He is required to eat every three hours, even in the middle of the night and regardless if he is awake or not. We set alarms to make sure we get up. We measure out the mL he gets before each bottle, then when he is finished, we re-measure out what is left and track each amount in a book. We know the total intake amount for each day.

2) Positioning: Blaise cannot be elevated beyond thirty degrees. This is why he got a flat carseat from the hospital, a car bed. It remains installed in mom's car, so we have to carry him in and out to the car. he cannot use bouncy chairs or swings. No propping on boppy. This makes it difficult for mom to get anything done, since I can't leave him in one for entertainment. He also has to have a stroller that lays flat. He cannot have tummy time.

3) Exposure to People: He cannot be exposed to individuals, since we do not want him to get sick.

4) And the others I've already talked about including, daily weight recording, daily SAT recording, two Lovonox shots daily, two doses of Lasix daily, and a dose of Vitamin D. The reminder alarms go off quite frequently in our house :)

5) Crying: Because of his heart condition, we aren't allowed to let him cry for very long, and usually pick him up right away. YES- he will be spoiled :)

Last night, we had our first family outing besides going to doctors appointments. We loaded Blaise into the carseat and drove around Oakland. It was soooo nice to get out of the house! Then, we headed to West Point to the only drive through within 15 miles and got supper at McDonalds, that we ate in the car on the way back. I think this might become a familiar routine, since we can't take Blaise out anywhere. I joked that the outing was my Mother's Day dinner from the boys!  The trickier part was having to look online at McDonals nutritional information before leaving to see what I could order that didn't have milk or soy in it!

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