Fears and Tears

Every day Liam is growing and doing more. Every day I sit back and I watch him. I watch him smile. I watch him sleep. I watch him breathe. Liam means the world to me. Every day I fight so hard to not "favor" him over my daughter. Every day I fear that something will happen. I feel like I'm waiting, just sitting in purgatory. I find myself suddenly sad or scared for absolutly no reason. I feel like something is about to happen but have no clue as to what that could possibly be. I'm afraid we'll end up stuck in a hospital because he cought a cold or that his g-tube will get pulled out. I'm even scared he will stop breathing on me or that his heart will just stop. I go to bed every night praying to God that when I wake up Liam will still be there in the bassinet breathing and sleeping or smiling back at me. The greatest thing is to wake up and see him smile at me first thing in the morning. That happiness never last long before the fear of what the day will bring sets in. I'm always scared that I'll be at home alone with the kids and have an emergency with Liam and the car won't start and my phone stops working. I don't know if it's just me. I don't read much about how the parent's feel in raising a cherub and feel that it's important to share my feelings in hopes that it will help someone else out there. It's a scary situation. I get asked all the time how I deal with it all, how I'm ok with it all. My response is always the same "because I have to be". I don't have a choice. I have to be strong. I have to be able to deal with my son's health issues. I have to be ok with feeding him through tubes and administering meds. I have to be ok with the fact that my bed room alot like a hospital room. And I have to be ok with answering questions. When I go out with Liam, I sometimes pretend he is normal. If he's not feeding then his gtube is hidden by clothing. People comment on how cute he is and ask's how old. I don't tell them his story unless they specifically ask something. I find that even after 4 months that it's still hard for me to explain what happened with Liam and all we've been through. Sometimes I just give the short answer, he has alot of health issues. I'm not ashamed by him. I love my son and can't really imagine him being any different. I feel that he wouldn't be the same if he hadn't gone through all this. I think that him having CDH just maked me love him more. It feels like my heart could expload from the love I have for my son. That doesn't change my fears. I swear half the time I'm walking around with my heart in my stomach. There's nothing I can do to change his health and I think that's a huge problem for me. When Liam was conceived we weren't trying to have another baby. I was actually on the pill. I did everything right. Took the pill at the same time every day. Used other protection while on anti-biotics for a month after I stopped them everytime. I guess God just decided it was time. I couldn't control conception, then I couldn't control the pain I was in the last few months of my pregnancy. I had no control over labor and delivery. When it came to Liam I had no control what so ever. Not even when it to changing his diapers while at the hospital. Liam was always a suprise, every step of the way. Because of that I keep waiting for more suprises to pop up. He went from being so far behind and all the doctors saying he was going to have lot of health problems to being right on time with his age. In fact he's even ahead on some things. My fear steams from all that and the fact that I have absolutly no idea what the future holds for Liam or for us. He has impacted our lives in so many ways. I'm working hard to overcome my fears, to work through the pain and anger I feel for his condition. I developed PTSD from all this and it's been a roller coaster of emotions. It's harder than I ever thought it would be to get through this. I was on anti-depressants before Liam and now that too has escaladed. Just when I think I have a handle on everything I find out I don't. I'm still waiting for that big breakdown even though I've been fighting against it. I know it should help me to just let it all out and stop bottleing it up but I haven't been able to let myself loose control. I feel like I'll be a failure or weak if I do. All I can do is be a nurse for Liam as well as him mom and do my best. I pray every night for him to continue to improve. I pray one day soon they will not only have answers to CDH but a way to prevent it. I want this to end. I read alot of blogs and updates about CDH babies and everytime I read about one that earned their wings I can't help but cry alittle and hold Liam close. I know I don't know them or their families but I still feel connected to them. Please send a prayer up that we get some answers soon.

11/08/2011

We’ve officially been home 4 days from the hospital. Liam has been doing great. He sleeps all night long, doesn’t even wake up for diaper changes. He sleeps so hard he doesn’t even wake up when I’m moving him around. He’s an early bird and all smiles when he wakes up. He’s content with lying in his bassinet talking and staring at his toys. I love waking up to his sweet voice and super cute smile. He really lightens up my mornings. It’s hard to be grumpy when you see such a bright smile every morning. Liam hasn’t had any problems with his feeds. In fact when I took him to the doctor’s yesterday he weighed in at 10 lbs 4 oz. We celebrated with a cake. Finally my little man is out of newborn clothes. He is just 1 week shy of being 4 months old and finally wearing 0-3’s. It was an exciting day for us. I actually took in all Liam’s newborn clothes to Smarty Pants kids used clothing in Visalia and traded them all in for 0-3’s. They had such cute stuff. Even picked up a few things for my daughter. Not only were the things priced very well, but the trade in credit was awesome too. And now with Flu and RSV season upon us, Liam can’t go out into public. DH actually drove me to all the places I had to go today and stayed in the car with the kids. It was very sweet of him. What’s really amazing was the fact that he didn’t complain too much either. I’m loving being home. I love that tomarow I have absolutely no where I have to go and get to stay at home and cuddle with my two kids. I love it. I am struggling with the fact that I am back to being a stay at home mom when I had only gotten back to work last year. I worked really hard to get through tax school and then even harder at work while pregnant. I thought I had it all figured out. I’d give birth to Liam and he would be 3 months old before I had to do a few meetings then 6 months old before I had to go back. Now I don’t even have the opportunity to go back to work. I have no choice but to be a stay at home mom with my kids because of Liam’s condition. I’m not mad about it, just trying to re-adjust my way of thinking again. Besides this is the fun age for me…..as long as we don’t have anymore hospital stays anyway. Thank you all for your prayers and your support. I am continuing to ask that you keep Liam in your prayers. One little cold started our last adventure at the hospital. If he gets RSV with his Chronic Lung Disease it’ll be a very hard haul for him. One his little body isn’t strong enough for yet.

GREAT NEWS!

I'm excited to announce that yesterday Liam was released from Childrens Hospital and is now home. Home where he belong. We left with the truck full of luggage, medicine and toys. When we went in Liam was on 4 different perscription's. We tweaked some, got rid of some and added new ones. Now he has 8 meds to take daily. I am a nurse, atleast to my son. I have learned so much more about Liam on this last hospital stay than on any others. Probably because we were at Childrens. They looked at the whole picture, not just part of the picture. Once they realized that we wanted to be involved in every step of the way they kept us informed. We all made decisions together and choose the best options for Liam. This last stay diagnosed Liam with reflux and chronic lung disease. He had a Gtube placed and a Nessen Fundoplication for his reflux. If you hadn't noticed the funny little tadbit there, I'll point it out. Liam had a Nessen........you know Liam Nessen LMAO. How funny is that?! Anyway. We are all very happy to be home. We got to sleep in out own comfy beds. Now we have to get a new routine going. Liam's med sched means meds every 3 hours as well as feedings. Liam is currently not taking anything by mouth. It's something that we're working on and will also need therapy for. Lanie is happy to see all her toys and her bed. The cats missed us like crazy and have been following us around and curling up next to us. It's awesome to be home! We have alot of work ahead of us, dusting, vacuming, mopping. Its amazing how dirty a house can get when no one is even in it. Stupid water cooler! Ill keep posting as often as I can but for now please visit Liam's website and pass it one. We have so many appointments ahead of us its not even funny. All within a months time.