As I sit here working on a video for Liam’s first birthday, I’m flooded with emotions. I can’t believe what’s happened this past year. Liam being born with CDH was so surreal. The heartfelt, emotional welcoming we had planned for our precious son was forever denied us. Instead our son was whisked away from us before we ever got a glimpse at him. When we finally got to see him, he was 7 hours old and hooked to so many tubes you could barely see there was a baby. His body was swollen and he was given a paralytic to keep from moving causing more harm to his fragile little body. They only gave us ten minutes with him before they had to ready him for transport.
I didn’t see my little boy again until 50 hours, and a long painful 3 hour car trip later. Theres a span of time from stepping out of the elevator on the 15th floor at UCSF and when we walked into the room where Liam was hooked to what seemed like a gigantic ECMO machine. The doctor had cornered us off to the side to explain what was going on. I remember nodding my head a lot but only seeing my son laying in his bed. All I wanted more than anything was to run over to him and scoop him up in my arms. The only thing that held me back was the pain soaring through my body and the need to be completely centered and in control of my own emotions.
I spent the next four weeks in an utter haze. Between physical pain from recovering from the c-section and the emotional pain my mind couldn’t comprehend what was going on. It wasn’t until 4 weeks later when we got into the Ronald McDonald house and Justin and Lanie came up to stay for the duration that the haze finally began to lift.
When the haze finally lifted the pain was like a open wound to my heart. It was almost impossible to keep the hurt from showing. By then Liam was smiling. When I was at his side, holding him, watching him smile, the pain would dull and I could feel truly happy. When I was away from him, Id fake a smile that was unbelievable and inside the pain was tearing me apart. I started getting up early and being at the buss stop as soon as that first buss ran just to get next to my little man who could ease my pain. Id stay as late as Justin and Lanie would let me, then return to the house a miserable mess inside. I slept little, ate little.
When they came to us and told us it was time to go home, we didn’t believe them. They asked if we were ok with that. We asked if they were sure he was ok to go home. When they assured us he was ready to go home they told us they hadn’t expected him to recover so quickly so it was a surprise to them too. We went through all the “what if’s” and “what to do’s”. Watched all the instruction videos and I did my sleep over. I still couldn’t believe my baby boy was coming home.
It had only been 8 weeks but in the NICU it felt like years. Making arrangements to come home and dressing my little one in his outfit was surreal. I still remember setting him in the car seat for the first time and watching the nurse cut off his hospital ID band and the tears that filled my eyes. Walking out of our room in the NICU all the way to the elevator there were people lining the walls to say their goodbyes and good wishes. And I remember thinking “this is how it should have been in the beginning”.
From there it’s been a long 11 months of ups and downs, healing and scaring. I left UCSF with Post Tramatic Stress Disorder and depression deaper than I’ve ever had. Healing from PTSD is taking a lot longer than it took Liam to leave NICU. After 10 months, I’m finally seeing a few bright days but most days my mind is riddled with flash back of Liam laying there
hooked to all those machines and being told they weren’t sure if he’d make it. I don’t know if I’ll ever completely heal from this experience but I know that I will be a better person because of it. And if healing makes me forget what we’ve been through, then I don’t want to heal because to forget would mean to forget why so many new people have come into our lives and become part of our family. To forget would mean to forget why I want to give back and help other families affected by CDH.
Liam’s had 9 hospital stays so far in his short life and I know it’s not the end. But we have each other. Being together as a family makes it bearable. Its when we’re apart that’s hard. Even after 11 months, we’re just at the beginning of our CDH journey. I know that just because he turns 1 doesn’t mean he’s going to magically turn into a normal child. Even though he depends on feeding tubes, oxygen, breathing treatments and more, and even though that makes him imperfect, I love him even more. People say everything happens for a reason, I believe it does, but weather its devine or not I can’t tell you. What I can tell you is that I thank God everyday that I have Liam to hold and love.
Thank you AGAIN and AGAIN and AGAIN to the staff of UCSF NICU for all your hard work in taking care of our precious baby boy.
I didn’t see my little boy again until 50 hours, and a long painful 3 hour car trip later. Theres a span of time from stepping out of the elevator on the 15th floor at UCSF and when we walked into the room where Liam was hooked to what seemed like a gigantic ECMO machine. The doctor had cornered us off to the side to explain what was going on. I remember nodding my head a lot but only seeing my son laying in his bed. All I wanted more than anything was to run over to him and scoop him up in my arms. The only thing that held me back was the pain soaring through my body and the need to be completely centered and in control of my own emotions.
I spent the next four weeks in an utter haze. Between physical pain from recovering from the c-section and the emotional pain my mind couldn’t comprehend what was going on. It wasn’t until 4 weeks later when we got into the Ronald McDonald house and Justin and Lanie came up to stay for the duration that the haze finally began to lift.
When the haze finally lifted the pain was like a open wound to my heart. It was almost impossible to keep the hurt from showing. By then Liam was smiling. When I was at his side, holding him, watching him smile, the pain would dull and I could feel truly happy. When I was away from him, Id fake a smile that was unbelievable and inside the pain was tearing me apart. I started getting up early and being at the buss stop as soon as that first buss ran just to get next to my little man who could ease my pain. Id stay as late as Justin and Lanie would let me, then return to the house a miserable mess inside. I slept little, ate little.
When they came to us and told us it was time to go home, we didn’t believe them. They asked if we were ok with that. We asked if they were sure he was ok to go home. When they assured us he was ready to go home they told us they hadn’t expected him to recover so quickly so it was a surprise to them too. We went through all the “what if’s” and “what to do’s”. Watched all the instruction videos and I did my sleep over. I still couldn’t believe my baby boy was coming home.
It had only been 8 weeks but in the NICU it felt like years. Making arrangements to come home and dressing my little one in his outfit was surreal. I still remember setting him in the car seat for the first time and watching the nurse cut off his hospital ID band and the tears that filled my eyes. Walking out of our room in the NICU all the way to the elevator there were people lining the walls to say their goodbyes and good wishes. And I remember thinking “this is how it should have been in the beginning”.
From there it’s been a long 11 months of ups and downs, healing and scaring. I left UCSF with Post Tramatic Stress Disorder and depression deaper than I’ve ever had. Healing from PTSD is taking a lot longer than it took Liam to leave NICU. After 10 months, I’m finally seeing a few bright days but most days my mind is riddled with flash back of Liam laying there
hooked to all those machines and being told they weren’t sure if he’d make it. I don’t know if I’ll ever completely heal from this experience but I know that I will be a better person because of it. And if healing makes me forget what we’ve been through, then I don’t want to heal because to forget would mean to forget why so many new people have come into our lives and become part of our family. To forget would mean to forget why I want to give back and help other families affected by CDH.
Liam’s had 9 hospital stays so far in his short life and I know it’s not the end. But we have each other. Being together as a family makes it bearable. Its when we’re apart that’s hard. Even after 11 months, we’re just at the beginning of our CDH journey. I know that just because he turns 1 doesn’t mean he’s going to magically turn into a normal child. Even though he depends on feeding tubes, oxygen, breathing treatments and more, and even though that makes him imperfect, I love him even more. People say everything happens for a reason, I believe it does, but weather its devine or not I can’t tell you. What I can tell you is that I thank God everyday that I have Liam to hold and love.
Thank you AGAIN and AGAIN and AGAIN to the staff of UCSF NICU for all your hard work in taking care of our precious baby boy.
Thank You Cindy Silva! Thank You Sue Dahaun (AKA Dr Sue) You will forever be part of our family! We can never thank you enough.
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