Saturday, March 19, 2011
1 Year Ago
I woke up this morning feeling sick to my stomach. I laid there for awhile thinking it would pass. We were supposed to take the boys to the circus, I was going out for coffee later with a friend, church tonight. It was supposed to be a busy day. Instead I am laying on the couch feeling crummy. It made me think about a year ago. Gavyn was still in the hospital at this time. I remember this week too because all the nurses wore green on St.Patty's Day, John and Nancy took the boys to the same circus and we all came down with the same stomach bug. Weird huh? I mostly remember the day I had to come home sick from the PICU. That whole day and night the worst fear of mine was that something awful would happen to Gavyn and he would die without me there. That was one of the hardest days.
Tuesday, March 8, 2011
1 Year Ago Today III
I did not have time to write a post yesterday because it was a crazy day! Such contrast from a year ago.
Skyler went off to school in the morning. That has been such a great thing for him but I am also glad we waited for 4 year old preschool. Not only because it gave me more time with him at home but because of the crazy year we had and how much more crazy it would have been.
Gavyn had his 6 month visit with his nurse practitioner Neurologist, Tracy Moore. Thankfully Ryan was able to go with us and Nevin too! Everyone loves to see Nevin now at CG because of his thyroid. Any who... It was a very productive visit. Thinking of sitting in that PICU room a year ago, machines hooked up all around my baby, wondering what was going to happen and now...
She went on and on about his sitting, how well he interacted, clapping his hands ect. We talked about his gross motor delay and if he has mild CP, he could, probably does but there is no test, no for sure answer. We also talked about if you say he is at a 6 month level he is doing awesome. You have to cut off all the time he lost being sick and how long it took him to recover from it all. In most areas that is where he is at and we just have to go with it. We talked about when we he would get an MRI, what therapies to continue and possibly start, coming up doctor visits ect. Of course we even chatted about Mr.Nevin.
Before we left Ryan asked how he was doing, compared to other babies with hydro and shunts that she sees. She looked at Gav, looked at us, took a deep breath,
"To be honest... He is doing remarkable. Most babies I see who have what he has are not sitting up, they do not interact, they don't know what is going on around them. Obviously he has all of those things and for the rest we need to meet him on his terms."
Of course I cried. It makes my heart hurt so bad for those families. To have a taste of what they go through every day and know how hard it is. And also to feel a ting of guilt for the things we worry about because in the grand scheme of things he will probably be totally fine.
Skyler went off to school in the morning. That has been such a great thing for him but I am also glad we waited for 4 year old preschool. Not only because it gave me more time with him at home but because of the crazy year we had and how much more crazy it would have been.
Gavyn had his 6 month visit with his nurse practitioner Neurologist, Tracy Moore. Thankfully Ryan was able to go with us and Nevin too! Everyone loves to see Nevin now at CG because of his thyroid. Any who... It was a very productive visit. Thinking of sitting in that PICU room a year ago, machines hooked up all around my baby, wondering what was going to happen and now...
She went on and on about his sitting, how well he interacted, clapping his hands ect. We talked about his gross motor delay and if he has mild CP, he could, probably does but there is no test, no for sure answer. We also talked about if you say he is at a 6 month level he is doing awesome. You have to cut off all the time he lost being sick and how long it took him to recover from it all. In most areas that is where he is at and we just have to go with it. We talked about when we he would get an MRI, what therapies to continue and possibly start, coming up doctor visits ect. Of course we even chatted about Mr.Nevin.
Before we left Ryan asked how he was doing, compared to other babies with hydro and shunts that she sees. She looked at Gav, looked at us, took a deep breath,
"To be honest... He is doing remarkable. Most babies I see who have what he has are not sitting up, they do not interact, they don't know what is going on around them. Obviously he has all of those things and for the rest we need to meet him on his terms."
Of course I cried. It makes my heart hurt so bad for those families. To have a taste of what they go through every day and know how hard it is. And also to feel a ting of guilt for the things we worry about because in the grand scheme of things he will probably be totally fine.
Sunday, March 6, 2011
1 Year Ago Today II
Last year today we woke up in the hospital in Gavyn's room in the PICU. It had been a restless night. Lots of phone calls to family to tell them of Gavyn's latest condition. Posting on facebook to keep friends updated and texting back and forth. I had a sick feeling in the pit of my stomach all night long. It was hard to sleep. Not only all the beeping from the machines, the in and out of nurses and doctors all night long but the worry and darkness that had suddenly covered my mind. I was still in slight denial about everything going on though. We waited for a few early morning hours for the rounds to start. Thankfully we were the first of the morning and we listened in shock as the head doctor talked.
"I realizing that this is the worst day of your life. Your worst nightmare has come true. Do I think your baby is going to make it? Yes, I do. I think you got him here soon enough to save his life. Do I think he will have permanent damage? I don't know. But I do think he will make it."
I remembered my mind racing, it had not occurred to me that he might die. That was a prevailing thought for the rest of his stay in the hospital though. She was so very cold and blunt in her speech and lecture that she gave us. I was so completely grateful that that day was her last day shift round for his whole stay in the hospital. I am sure she is a great doctor but I still feel ill when I see her at Glennon.
It was mid morning before the neurologists made their rounds that day. We were anxious to speak with them about his hydro and their thoughts. Dr. Arun was much more encouraging about the situation. She knew there was a lot of pressure and swelling from the meningitis that would go down with the antibiotics. We needed to wait and see before jumping to major conclusions about his brain and the rest of his life.
In contrasts we spent about an hour last night with just Gavyn on the couch. For some reason he wasn't into sleeping and wanted to stay up late. I honestly did not mind. To sit on the couch and cuddle with him, remembering how a year ago I would go 2 weeks without holding him. To watch him covering his baby eyes with his chubby hands to play peek-a-boo with us. And to watch him drift off to sweet sleep. This morning we took the boys to the Science Center and played for a couple hours. This afternoon I spent in the kitchen making healthy food for my boys, glad to just be home, everyone healthy, in good care, growing and learning.
"I realizing that this is the worst day of your life. Your worst nightmare has come true. Do I think your baby is going to make it? Yes, I do. I think you got him here soon enough to save his life. Do I think he will have permanent damage? I don't know. But I do think he will make it."
I remembered my mind racing, it had not occurred to me that he might die. That was a prevailing thought for the rest of his stay in the hospital though. She was so very cold and blunt in her speech and lecture that she gave us. I was so completely grateful that that day was her last day shift round for his whole stay in the hospital. I am sure she is a great doctor but I still feel ill when I see her at Glennon.
It was mid morning before the neurologists made their rounds that day. We were anxious to speak with them about his hydro and their thoughts. Dr. Arun was much more encouraging about the situation. She knew there was a lot of pressure and swelling from the meningitis that would go down with the antibiotics. We needed to wait and see before jumping to major conclusions about his brain and the rest of his life.
In contrasts we spent about an hour last night with just Gavyn on the couch. For some reason he wasn't into sleeping and wanted to stay up late. I honestly did not mind. To sit on the couch and cuddle with him, remembering how a year ago I would go 2 weeks without holding him. To watch him covering his baby eyes with his chubby hands to play peek-a-boo with us. And to watch him drift off to sweet sleep. This morning we took the boys to the Science Center and played for a couple hours. This afternoon I spent in the kitchen making healthy food for my boys, glad to just be home, everyone healthy, in good care, growing and learning.
Saturday, March 5, 2011
1 Year Ago Today
Tonight the drive home from church reminded me of last year at the same time driving the same path. When we got home we sat down for dinner and I watched my baby dancing to music, signing 'all done' and 'more'. Interacting with his big brothers, laughing, smiling, being the Gavyn E we love. I glanced at the clock and thought back to a year ago at the same hour and the news we were receiving.
It has now been one complete year to the dreadful morning of Gavyn's seizure, rush to the hospital, admittance to the PICU, Ryan and I driving home to take a quick shower to go back up to the hospital and be met by Gav's doc who told us about his hydro. We were left with so many unanswered questions that night. So many fears. So many tears. So much guilt and worry. Slowly we have all made it through this very difficult year. There were a million things we never thought we would see Gavyn do. And now he can...
Sit up like a pro
Has a '6 foot reach'
Can pivot in a complete circle on his belly
Eat solid food
Say, 'Momma', 'Dadda', 'Baba'
Play peek a boo
Learning sign language, all done, more, eat, milk....
There are things we are still working on but those 7 things are some of the most important. They show he is cognitively moving along. His gross motor are delayed but he is moving! Fine motor skills are coming in to place. These are things I was never sure I would see from him. At our worst I thought he would be on life support his whole life. Once he came home my worst was thinking he would have CP and never interact with us. And now at our best I can see him learning to crawl and walk, talk and tell jokes, go to preschool and not special school district...
Just imagine what I will be saying a year from today.
It has now been one complete year to the dreadful morning of Gavyn's seizure, rush to the hospital, admittance to the PICU, Ryan and I driving home to take a quick shower to go back up to the hospital and be met by Gav's doc who told us about his hydro. We were left with so many unanswered questions that night. So many fears. So many tears. So much guilt and worry. Slowly we have all made it through this very difficult year. There were a million things we never thought we would see Gavyn do. And now he can...
Sit up like a pro
Has a '6 foot reach'
Can pivot in a complete circle on his belly
Eat solid food
Say, 'Momma', 'Dadda', 'Baba'
Play peek a boo
Learning sign language, all done, more, eat, milk....
There are things we are still working on but those 7 things are some of the most important. They show he is cognitively moving along. His gross motor are delayed but he is moving! Fine motor skills are coming in to place. These are things I was never sure I would see from him. At our worst I thought he would be on life support his whole life. Once he came home my worst was thinking he would have CP and never interact with us. And now at our best I can see him learning to crawl and walk, talk and tell jokes, go to preschool and not special school district...
Just imagine what I will be saying a year from today.
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