Well we made it to almost 1 month with everything going fairly well. Ethan was started on lasix on Monday with cardiology where he weighed 8lbs 2.5oz. Today, at his 4 weeks f/u he weighed in at 7lbs 14.5oz, so down 4 oz since Monday. We will see children's home care on Tuesday for a weight check, if he continues to lose more weight we will have to see cardiology at Children's or even have to be admitted so they feed him down the NG tube (feeding tube through his nose to his stomach). The pediatrician said the weight loss is more than likely due to the fluid backing up in his heart and lungs since his heart isn't pumping as well. So when cardio added the lasix it helped drain this off. So the weight he put on was fluid weight not actual body weight. If he is maintains this weight and doesn't continue to lose then we will as higher calories supplement to the breast milk. I've been unable to breastfeed directly for about a day. He just cannot tolerate the increased workload on his heart. There is no problem with my milk supply, so I pump. And pump. And pump.... all day long! It's getting more and more difficult with feedings. I start a bottle at let's say 6pm, he doesn't finish until nearly 7pm (which is a task to keeping him stimulated to take at least 2oz!!) then he is hungry again by 730-800pm and the process starts all over again. My worst fear is an admission at Children's. That was all mentioned if his weight did not pick up... I certainly will do whatever it takes to get him where he needs to be for surgery.
I'm starting to feel the increased stress of everything going on. I'm getting to pulled to all these different directions and I can barely keep up. We have known about Ethan needing open heart surgery what seems like forever ago, but it's all starting to settle in. In one way I'm ready to move forward towards surgery and on the other hand I'm completely terrified.
So you can see why Eli would be acting out and striving for our undivided attention. there is only so many quiet activities a 4 year old can do!!! But the house will always be here, it will always need cleaned. And it will get done eventually. I know I have said this a million times but I'm so thankful for family and friends who have brought over meals or gift cards for dinners. It's impossible to make a dinner at this point. We have had neighbors inviting Eli over to play. I'm just so amazed how helpful very one is.
The one thing I have been able to focus on is the heart walk coming up in a week!!! I'm so excited we decided to do it this year. I'm overwhelmed with the amount of support we have gotten. I'm excited to meet other families and introduce our family and friends to this new life along with us. Since Ethan is at an extremely fragile state we will not be taking him with us this year. We will be there to honor him!
Please continue to pray for us!
I felt the same way about surgery. I just wanted it to happen, but I was so terrified to face it. In a way it was both the best and worst day of my life. But now I realize probably the best day, seeing how it gave her a chance at a new life, to really live. When the stress and fear overwhelm you, imagine a time in the not so distant future where Ethan can eat without getting tired, where you can have your life back, and you can just enjoy him as your son.
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