49 Days Old

I thought that things would be easier to deal with when we got our little CDH cherub home. In a way they are but in some ways its harder. There's the obvious things that I miss that made things easier like the stat monitors and the 24 hour care from a staff of doctors and nurses. Now that we're home I'm becoming overwhelmed with the fact that he could still make a turn for the worse and I only have a few ways of knowing if that's happening. Liam is having some feeding issues. He won't eat a full bottle feeding so we had to switch his formula to Neosure so his take in volume is less but his callories are more. We can't risk him loosing weight because once that happens it'll start a downward spiral. Everything was going great until yesterday when he got constipated and really gassy. The in home nurse happened to call when I was going to call the doctor and she came out to see him. Between her and the doctor we have a plan and I'm not so paranoid that it could be something worse than it is. Thank God for the resources he has given me to help take care of Liam because without the great doctors, nurses and programs I would be completly lost. Liam is 49 days old and he's still wearing newborn diapers and clothes and the swollow him whole. He weights barely over 7lbs. He truely is a miracle baby. Lanie has been doing great transitioning from being the only child. She's just afraid that when she waked up in the mornings I'm not going to be here anymore that I'll be back up at the hospital in San Francisco. I think our ordeal has cause her night terrors and I feel horrible about it. All I can do is be here for her to reinforce my telling her that I'm not going anywhere. My Post Tramatic Stress from this situation is pretty bad. I know I need to just break down and cry to let it all out because I have yet to have a break down since we found out Liam was sick. It never seems to be the right time to just let it all out. I know it's comming. I'm so thankful to have my two kids together at home. Life may not be perfect but it doesn't get much better than this. Cudled on the couch watching movies. All the doctors, nurses, friends and family keep telling that I'm doing everything right. It's hard to believe when you have a sick kid. Even though I didn't cause his condition it's still hard to believe. I think thats what aggrivates me. I did everything I was supposed to during my pregnancy. I listened to the doctors, took my vitamins. The only thing I did was drink some caffine and it was a preapproved amount. Then you have people out there who do everthing your not supposed to while pregnant like drink, smoke, do drugs and their kids are born healthy. A childs life isn't one to gamble with and I have no respect for those who do gamble with childrens lives. The naighbor around the corner came over the other day and asked for vicodin because she hurt her back. We've never met them before mind you. Come to find out she's a few weeks pregnant. I was mad when I found out. I just pray that soon we'll have answers as to why CDH happens and if it can be prevented.