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.
Sunday, March 6, 2011
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.
Monday, January 31, 2011
My Baby Doll
It is but a few short weeks from my baby doll's 1st Birthday! I can not believe how fast the time has gone. And although it has been a wondrous and miraculous year my mind keeps going back to one thing. The night we found out about Gavyn's hydro and something Dr.Warner said. He made a comment that people would ask us what things Gav would be able to do and he said,
"People will ask you if he will ever walk, tell them to ask you a year from now."
I am not sure why of all things he had to say that but he did. It was etched in my memory and the closer it gets to Gav being a year the more I think about it. You don't want to compare your children but when you have a baby with specials needs you do watch that bar closely and see where they will fall. Skyler was a mover and shaker, he crawled at 8-9 months and quickly started cruising and by 9-10 months he was walking. Nevin (who knows what he would have done now if he would have been on meds for his hypo thyroid) crawled at 10 months after months of teasing me but did not walk until 18 months. Mr.Gavyn is still not crawling and by no stretch of the imagination does he show interest or intent in trying. His leg movement as always been a concern and although he has made great strides it is still far behind. They say when you shunt a baby it is like restarting the clock to zero no matter their age which would make Gav at a 9 month level. Yet, his gross motor skills are behind even for that. I know that even if he never walks and has to use a wheel chair he can still have a wonderful life full of adventurers. I do not have a clue what God has planned for him, we all know that all of my plans for my life got thrown in the garbage. It is just a wait and see game and that is the hardest part. Maybe a month from now I will post a video of his first steps. Or maybe in a year I will post pictures of him with his first set of wheels. Time will tell.
"People will ask you if he will ever walk, tell them to ask you a year from now."
I am not sure why of all things he had to say that but he did. It was etched in my memory and the closer it gets to Gav being a year the more I think about it. You don't want to compare your children but when you have a baby with specials needs you do watch that bar closely and see where they will fall. Skyler was a mover and shaker, he crawled at 8-9 months and quickly started cruising and by 9-10 months he was walking. Nevin (who knows what he would have done now if he would have been on meds for his hypo thyroid) crawled at 10 months after months of teasing me but did not walk until 18 months. Mr.Gavyn is still not crawling and by no stretch of the imagination does he show interest or intent in trying. His leg movement as always been a concern and although he has made great strides it is still far behind. They say when you shunt a baby it is like restarting the clock to zero no matter their age which would make Gav at a 9 month level. Yet, his gross motor skills are behind even for that. I know that even if he never walks and has to use a wheel chair he can still have a wonderful life full of adventurers. I do not have a clue what God has planned for him, we all know that all of my plans for my life got thrown in the garbage. It is just a wait and see game and that is the hardest part. Maybe a month from now I will post a video of his first steps. Or maybe in a year I will post pictures of him with his first set of wheels. Time will tell.
Thursday, December 30, 2010
Holidays
We have successfully made it through the holiday season with 3 little men! It was so wonderful to have Mr. Gavyn part of our family this year.
Thanksgiving was a wonderful week of celebration. Gavyn was dedicated at our church the weekend before the holiday and it was truly a special day. We were surrounded by family and friends who love us and our little man. People who supported us, encouraged us and cried with us this past year. My favorite part of the day was when we all prayed over him, although he was napping in the other room. :) To hear the love and care that he is surrounded with was truly special.
Christmas was super fun with three little boys. Gavyn was totally in to getting paper off of boxes and pulling paper out of bags. He was having more fun with it than I remember either of the other two boys at his age! Of course the paper is always more fun at his age than anything else. We did get him little baby drums that play music and he loves it, super fun for "baby bang, bang."
It was a magical time of year for our family with many blessings and surprises. We are looking forward to this new year with great hope for our little man. He is doing new things every day and slowly making progress. We are confident that he will get there in time with support and love.
Thanksgiving was a wonderful week of celebration. Gavyn was dedicated at our church the weekend before the holiday and it was truly a special day. We were surrounded by family and friends who love us and our little man. People who supported us, encouraged us and cried with us this past year. My favorite part of the day was when we all prayed over him, although he was napping in the other room. :) To hear the love and care that he is surrounded with was truly special.
Christmas was super fun with three little boys. Gavyn was totally in to getting paper off of boxes and pulling paper out of bags. He was having more fun with it than I remember either of the other two boys at his age! Of course the paper is always more fun at his age than anything else. We did get him little baby drums that play music and he loves it, super fun for "baby bang, bang."
It was a magical time of year for our family with many blessings and surprises. We are looking forward to this new year with great hope for our little man. He is doing new things every day and slowly making progress. We are confident that he will get there in time with support and love.
Monday, December 13, 2010
Sleep Overs
Tonight is Gavyn's second, yes SECOND! sleep over at Grandma's house. On the third of this month my wonderful husband surprised me with Symphony tickets at Powell Hall for my birthday. Instead of staying out our house until we got home my parents were brave enough to take all three kiddos to their house for the night. I was also brave enough to let them take my baby and keep him out of my sight for more than a few hours. The symphony was wonderful, the best date night we have ever had, I thought. But I was quick to give my parents a call when we were leaving to see how Gav was doing, he was sound asleep and being a perfect angel. When I got to their house, bright and early in the morning to pick him up I was expecting to find a pouting face little boy ready for his momma. Instead I walked into a pouting faced 4-year-old not ready to leave, a happy and excited 2-year-old and Mr. Gavyn falling asleep with PaPa for his morning nap. I know he missed me but he did not show it! :) Tonight my brother Shane and his girlfriend wanted to come and make gingerbread houses with Sky and Nev, put them to bed and let us go out for dinner as an early Christmas present. They hadn't watched the boys at night before with the extra tasks of dinner, bed and excitement so mom agreed to watch Gavyn for them. We knew he would fall asleep at her house though and there was no way to bring him home unless he woke up or we chanced him just being up for hours after being woken up. Which meant another sleep over at grandma's for little man! I cannot believe that he is doing so super amazing that I feel comfortable enough to leave him period, much less at my mom's twice in 10 days over night. Such a miracle boy.
Wednesday, November 24, 2010
Progress
Today was Gavyn's 9 month check up! While we were in the hall at the office getting Gav weighed his doctor walked by and just smiled at him, "Look how big Gavyn is! My how time flies..." You are telling me doc. Something about 9 months gets me sentimental and in awe that my baby is almost not a baby anymore. Only 3 short months before the 1st Birthday and a whole new world opening up to my boy. Doc was happy with his weight/height:
Weight: 18 pounds 10 ounces
Height: 26 1/2 inches
He was excited to see how well he is sitting up (man have we been working hard at that!). We talked about the non-rolling issue but he was so pleased with his sitting that it did not seem to bother him as much. Like he said, it could be because of his medical issues or it could just be his personality. With continued PT and OT I think we will get there shortly though. We all know he is capable of it, he has done it 2 times before it is just getting him to do it on a regular basis.
Gavyn loves his food (obviously by his weight!) and is eating a wide variety of fruits, veggies, grains and dairy products. It is fun to watch him explore new foods and learning how to self feed. If you hand him food in a pincer grip he does good at getting it from your hand to his using his pincer grip. If it is on the tray he is mostly still raking it to get it into his mouth.
He is all Gavyn and yet I see so many things that remind me of his brothers in him. His contentment with sitting and observing reminds of me Nevin. His fast/excited/hurried hand and arm movements remind me of Skyler. His babbling and singing remind me of Skyler and his sleeping habits remind me of Nevin. All things combined make up his own unique, sweet personality. I can't imagine life without my little Gav.
Weight: 18 pounds 10 ounces
Height: 26 1/2 inches
He was excited to see how well he is sitting up (man have we been working hard at that!). We talked about the non-rolling issue but he was so pleased with his sitting that it did not seem to bother him as much. Like he said, it could be because of his medical issues or it could just be his personality. With continued PT and OT I think we will get there shortly though. We all know he is capable of it, he has done it 2 times before it is just getting him to do it on a regular basis.
Gavyn loves his food (obviously by his weight!) and is eating a wide variety of fruits, veggies, grains and dairy products. It is fun to watch him explore new foods and learning how to self feed. If you hand him food in a pincer grip he does good at getting it from your hand to his using his pincer grip. If it is on the tray he is mostly still raking it to get it into his mouth.
He is all Gavyn and yet I see so many things that remind me of his brothers in him. His contentment with sitting and observing reminds of me Nevin. His fast/excited/hurried hand and arm movements remind me of Skyler. His babbling and singing remind me of Skyler and his sleeping habits remind me of Nevin. All things combined make up his own unique, sweet personality. I can't imagine life without my little Gav.
Tuesday, October 26, 2010
Dear Gavyn,
Some days I want to put you in a bubble where nothing can hurt you and everything will turn out fine. Other days I feel strong and am ready to push you and see what your therapists will think of next. On bad days I want to hold you and cry and try to stop my mind from thinking of all the worst case scenarios that could happen. And on good days, I just love you for the amazing and wonderful joy you are to our family. A life of never knowing you would have never been complete. A life with you taken from me would be unbearable. The day to day of right now with small victories, some set backs, and endless smiles from you is a treasure in my heart. I love you so much big boy. I know we will get over these rough times and you will be a strong man with so much to offer. It is hard for mommy to watch so many kids surpass you (and Nevin) but I know that you will both make up for it. You will have mighty characters, strong and good hearts and a caring gentle spirit even if you never walk or talk. Both of you are my precious little men. There will always be a place for you in this world and you will always be needed and loved by someone.
Kisses and hugs,
Mom
p.s.
Go kick all their butts
;-)
Kisses and hugs,
Mom
p.s.
Go kick all their butts
;-)
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