Monday, April 23, 2012

Day one: Stay at home mom

 Jeremy is back at work and today starts my new career...stay at home mommy. Although I feel like my brain is going to mush from not having been academically challenged in a while, I'm staying busy with little man. (I seriously miss being in college though!) The day started out great, Jensen woke up and was being especially cute. Then he had a poopy diaper so bad I had to give him a bath (sounds familiar right?). Since he was fussing about the bath already, I decided to replace his tegaderm. This is the tape that keeps his NG tube on his face. That was another ordeal and I ended up having to cut it off. That means sharp scissors.... near my child's eyeballs. I'm pretty sure that method of tape removal is frowned upon, but I was working with a screaming baby so I had to get it done quickly! 

We realized that Jensen's weight loss over the weekend was caused by using frozen milk from a few days after he was born. The fat content is much lower since its full of all those fantastic proteins. So instead of wasting that milk because he's not really gaining weight on it, we are mixing it in with his regular milk. It seems to be working much better and he's gaining again. Here's a sample of our milk-mixing routine that we do every day:

We measure out 9 ounces of breast milk and add 6 tsp of formula, which fortifies the milk to 27 cal/oz. We then measure 4 ounces of that fortified breast milk into a separate bottle and add a 30 g gel packet of simply thick (consistency of honey). We then measure out 25 mls of thickened, fortified breast milk and this is what he takes by mouth. Next, we make a separate 9 ounce bottle of fortified breast milk using the milk that contains colostrum. We add 20 mls of fortified colostrum breast milk to 60 mls of fortified regular breast milk and this is what he gets through the NG tube. 

Now I'm sure you didn't want to know every detail of our feeding routine, but I want people to know about it. Heart kiddos have such a hard time eating. The combination of the heart defect, not allowing feeding before surgeries, multiple runs on bypass, and multiple intubations makes for a tough road. They can have oral aversions, vocal cord paralysis, severe reflux, loss of suck-swallow reflexes and a million other feeding related issues.  Many of these kids need different types of feeding tubes and although it is the easiest way for them to gain weight, it makes life more difficult for the parents. I must admit, I get a little jealous when I see a mom out nursing her baby or simply pulling out a bottle and feeding them in 20 minutes with problem. But, I know once Jensen is given the green light to bottle feed, things will be much easier. He has such a big appetite I know he will do great! I'm looking forward to the day the Jensen pulls his tube out and we don't have to put it back in =)
Daph and Jensen...they love each other!
His scars are looking great!

He turned 2 months old on the day I turned 23!

This bouncy chair is the best investment we have made ;)

My sweet baby <3


  1. You're feeding schedule/recipe is much more then ours! I used to think ours was I think it's normal, lol. Jensen is absolutely gorgeous and he will grow into a wonderful little boy <3
    And while I don't know what YOUR journey has been like, and I admit it appears like it's been a lot tougher then ours, I still know some of the feelings you feel. Our little boy, Lucas, will be a year old on May 10...6 days after he has his 2nd open heart surgery and 4th surgery overall. I do agree, our heart kiddo's are extremely resilliant and much stronger then we could ever imagine to be <3
    Much love and positive thoughts to your family