Close to my Heart

Yesterday and today I've indulged myself in cuddle time with Liam. I enjoyed laying in bed with my son in my arms just watching his eyes slowing drift close as he falls asleep. I drifted off to sleep watching him sleep. It was thereaputic and something I haven't had the chance to do since we first brought him home from UCSF. The only thing missing was having Lanie there with us. Yesterday I was able to take time to lay with her and cuddle while she drifted off into dreamland for a nap. I enjoyed the fact that she needed me to be there with her and just being able to spend some peaceful quiet time with her. I enjoy the time I get with my kids and just wish I had more time to enjoy the little things. I seem to always be tired lately and I don't sleep well at night so I go through my days in a hazy daze. Most times I cant even remember what happened the day before. It's a good thing I have list's for everything. I layed there today, watching Liam sleep in my arms and just couldn't believe that it was all real. That him being here at hime with us was real. I keep expecting to wake up and find myself in the nightmare of NICU at UCSF. There was a day at UCSF when I was up there by myself after I was able to start hold Liam were Sue, one of Liam's primarys, brought in a big chair that the feet popped up and reclined. She had she sit back with Liam in my arms. She brought pillows to put under my arms and behind my head. I think after five minutes of sitting there watching Liam sleep that I fell asleep. I keep thinking thats what Im going to wake up too. I figure if one day that really happens then atleast ive seen the future. That I was able to see my son at home, and even go thorugh a few holidays. It would be something that would carry through the nightmare of NICU. Although I know that will not be the case and all this is real. I am blessed. Ive been able to experience alot with my son that alot of other CDH parents never got. That makes us very blessed. And even though everyday is a struggle in its own, I still choose this life over the alternative.

Standing Tall

We've been working with Liam for awhile now on exersizing his legs. As of 2 days ago he was able to support all his weight on his own by only holding onto our fingers. Today he was laying on the floor and I grabbed his hands thinking he would just pull himself up into a sitting position like he usually does. He skipped sitting and went straight into standing. I was so shicked. He thought it was cool and that he was the hot dog lol. His smile as he looked as me was huge and then he laughed at me. Yes a laugh. My baby has started to laugh and every day he laughs more and more. The sound is the best thing my ears have ever heard, next to his first cry. Then I decided I wanted to see what he could do with his new strength for standing. I stood him in front of the chair and had him grab ahold of it. Then I let go and sat to his side so I could catch him when he fell. He lasted a while 30 seconds. It was awesome. He barely rolls over, can't sit up on his own, can't crawl but he can stand for short periods of time. I am learning to take joy in what he can do instead of what he can't do. God has been so amazing in healing Liam and giving him such a will to fight.

Saying Goodbye to the old

We brought in the New Year by kissing our little miracle baby. 2011 brought alot of suprises, trial, dissapointments, helplessness, and frantic praying. Liam's birth was by far from normal. No one was expecting anything to be wrong with him. I had stayed calm through the surgery, reasurring my husband that Liam was fine even though he couldn't breathe and they whisked him away before I could catch a glimpse of him. I was in recouvery when the doctors and nurses started questioning me then told me that Liam's xrays showed CDH. I had an emotional break down. It was by far the worst thing to happen in 2011. Giving birth to my son, not getting to meet him until 8 hours later and having only five minutes with him before they life flighted him to UCSF. I spent the next day and a half half crazied and half under medical sedation until my early release. The second worst thing was getting up to UCSF and actually seeing my son hooked up to the ECMO machine and everything else. I lost a week of memories because I was so dazed and confussed about everything. The third worst thing to happen in 2012 was going 3 weeks without my baby girl and husband and being without any family. One of the best things to happen in 2011 was our UCSF family that we met up there: The Spences, Nordquist's, Montanos, Our primaries Cindy Silva and Sue Dahaun. We met many other people up there we consider family. The best thing to happen in 2011 was being discharged from UCSF moving Liam from the "fighting" list to the "survivor" list. We had 3 hospital stays in the last 5 months of 2011 and each time helped make Liam stronger. We may have had to spend my birthday and Halloween in the hospital but we were able to enjoy Thanksgiving, Christmas and New Years at home we're we all belong. I am glad that 2011 is over and a new year is apon us. We are praying that this year there will be no hospital stays for Liam, that he continues to grow and catch up, and that we can spend his first birthday celebrating in a big way. I would also like to continue to work on honoring Liam's battle against CDH as well as Maddie's, Shane Jr's and all the other babies out there starting with Feathers of Hope. We pray that the new year brings answers to our questions about CDH, a way to prevent it and a cure so no other baby has to be born fighting and no other parent has to feel the heartbreak and despair. God may only choose the strongest as their parents but hopefully we can stop the heartwrenching cycle so no other parent has to feel the pain that CDH causes.