Wednesday, June 30, 2010
First Cold
I hate this... Gav has a cold for the first time and it really sucks. I told Ryan that it is hard enough to handle these things being a mom but on top of the normal worry it makes me go crazy wondering if something is wrong with his shunt. All the symptoms of a growth spurt, cold, any sickness is the same as something being wrong with his shunt. How is a mom supposed to deal with that? Every time he coughs I feel so bad for him! It sounds horrible and he is so tired and pathetic. I took him to the Doc this morning and thankfully nothing is settling in his chest or ears. Also sucks because no meds to help him get better. Just Tylenol when he is super fussy. It has been a long day and my mind feels like mush from all the worry.
Saturday, June 26, 2010
4 Month Check Up
Yesterday was Gavyn's 4 month wellness check up. I was a little nervous heading over because I knew more shots were due and also anxious to hear if he was on track or lagging behind in any areas.
On a side note, when you go to the doctors office and are waiting in the waiting room, if you see a cute baby, how about you ask the mom if you can put your sticky fingers on them before you just start touching. I had a mom get all up in his grill and let her little 2 year old daughter do the same. He was in his car seat so it was not the easiest thing for me to just sort of move away and I did not want to make a big scene. But really, do people think babies are just free game for anyone? He is a little person you know!
Anyway... he weighs a whopping 13 pounds 7 1/2 ounces and 23 inches long! I know to some people it may not sound that big but if you would have or had seen him when he left the hospital after 19 days he was so skinny! He was my biggest baby at birth, 8 pounds 9 ounces. When he left the hospital he was right around 7 pounds and 5 weeks old. His skin had been so stretched out because he had put on about 2 pounds of fluid the first 2 weeks of his stay from the IV's. Once he was off and started peeing everything off he kept losing weight and his skin looked like old man skin with tons of wrinkles! It is so amazing to see him now, chunky with little healthy baby rolls.
The nurse who weighed and measured him thought he was the cutest little guy and kept commenting how alert he was, watching everything going on! The nurse practitioner was the one who did his assessment and I was very proud when she declare, "I see no delays in this little baby!"
We are still anxiously awaiting his development for this first year. We were told so many times in the hospital that he could have delays. That there was no way of telling how his brain was going to react and function to everything that had happened. Everyday when he does something new it is major news in our house.
After his assessment and shots we got to see Dr. Kebler and have a sit down in his office. He was so pleased to see his growth and hear about everything he is doing. He thought Mr. Gavyn looked great and called him a little piggy when I told him how much he eats!
Every mile stone is so important for all children but I feel doubly blessed that Gav is a miracle baby who defies all odds.
On a side note, when you go to the doctors office and are waiting in the waiting room, if you see a cute baby, how about you ask the mom if you can put your sticky fingers on them before you just start touching. I had a mom get all up in his grill and let her little 2 year old daughter do the same. He was in his car seat so it was not the easiest thing for me to just sort of move away and I did not want to make a big scene. But really, do people think babies are just free game for anyone? He is a little person you know!
Anyway... he weighs a whopping 13 pounds 7 1/2 ounces and 23 inches long! I know to some people it may not sound that big but if you would have or had seen him when he left the hospital after 19 days he was so skinny! He was my biggest baby at birth, 8 pounds 9 ounces. When he left the hospital he was right around 7 pounds and 5 weeks old. His skin had been so stretched out because he had put on about 2 pounds of fluid the first 2 weeks of his stay from the IV's. Once he was off and started peeing everything off he kept losing weight and his skin looked like old man skin with tons of wrinkles! It is so amazing to see him now, chunky with little healthy baby rolls.
The nurse who weighed and measured him thought he was the cutest little guy and kept commenting how alert he was, watching everything going on! The nurse practitioner was the one who did his assessment and I was very proud when she declare, "I see no delays in this little baby!"
We are still anxiously awaiting his development for this first year. We were told so many times in the hospital that he could have delays. That there was no way of telling how his brain was going to react and function to everything that had happened. Everyday when he does something new it is major news in our house.
After his assessment and shots we got to see Dr. Kebler and have a sit down in his office. He was so pleased to see his growth and hear about everything he is doing. He thought Mr. Gavyn looked great and called him a little piggy when I told him how much he eats!
Every mile stone is so important for all children but I feel doubly blessed that Gav is a miracle baby who defies all odds.
Monday, June 21, 2010
Gav's EEG
Obviously this is not a picture of Gavyn, I was going to take a picture today but I left my camera in the car. This is what it looks like when Gav has his EEG's done. Today marked his 5th EEG and I am hoping it is the last! The poor little man threw the biggest fit today while the tech was getting him ready.
The lady is so sweet and remembered us from the last time he had one done. First she has to measure all around his head and make red marks with a marker all over his head. Then she puts cream over all the parts that are marked and finally takes the little probes and puts this thick cream on them and sticks them on his head. Once all the probes are on they tape over them to hold them in place. I felt so bad for my poor baby, when we got to the hospital he was wide awake and happy as could be. I laid him on the bed and he was laughing at her when she started to swaddle him. As soon as she started the marking though he wailed. He kept looking up at me with scared eyes, filled with tears as if to say, "Why are you not making her stop?! I hate this!" Once I could pick him up he just whimpered for a minute in my ear and feel asleep.
His neurologist said he looked "perfect" when she saw him on Wednesday. Every mommy loves to hear that but it really meant a lot to me. He had to have the EEG done because he has been off of his seizure meds for 4 weeks now. His last EEG still showed some slowing in his brain that could mean more likely hood for him to have seizures. Yet he has only had the one and that was March 5th. Hopefully everything will be normal on this EEG and he won't have to go back on his meds. It was a hated ritual every evening to force it down his throat. It was seriously the worst tasting liquid I had ever tried and not being able to explain why you are making your baby take it.... But being on a medicine the rest of your life is better than having seizures.
Saturday, June 19, 2010
Coffee Club
For the first week I was able to stay in the same room has Gavyn and not have to leave him. It was hard to sleep on the little pull out beds but it was better than leaving his side since we had no idea if he was going to make it. After a week he was moved into a room that he shared with another baby and there was no pull out bed. The first night that he got moved I broke down. I had no idea how I could physically leave him and go sleep at home. I had only been back to our house once since he had been put in the hospital. It was the hardest thing to be there with all of his baby things knowing he was in the hospital. I knew I could not go home again without him. My mother literally got down on her knees and begged me to go back to her house, see my other two boys and get some sleep. My only other option was to find a place to sleep in one of the waiting rooms out in the hospital. After a long time I decided to go back with my mom and sleep at her house. Ryan decided to go back and sleep at their house as well so we could both see the kids.
The next morning my dad got up and went down to the hospital between 5-6 to be there in my place. I had barely slept the night before and woke up with a start around 7, confused with where I was and what was going on. I was ready to fly out of the house until my mom told me that dad had gone down to the hospital and I could give him a call for an update. For the next week my dad got up early every day and went and sat with Gav. He would be there early enough to talk with his Neurologists who rounded very early in the morning. He would ask questions of them, talk to the night nurse and meet the morning nurse. If Gav was doing well Grandpa would get to hold him and give him extra love for me.
I would wake up around 7, pump milk for the day, eat breakfasts, get dressed and play with my two big boys. Ryan would go home to work after spending some morning time with us. Mom would get ready to go, we would swing by Starbucks on the way to the hospital. I still wonder where those baristas thought we were going every morning with two toddlers and three loaded caffeine beverages. I would arrive at the hospital around 9, in time for the doctors to round. Get the low down from my dad and the nurses. Some days were bad and those days my dad was able to stay with me. To be moral support and help me asks questions of doctors and nurses.
I have always been a daddy's girl and my dad would do anything for me. This is the best thing my dad has ever done for me though. To be there when we could not and give my baby love. And all the love worked because he is home and healthy now.
The next morning my dad got up and went down to the hospital between 5-6 to be there in my place. I had barely slept the night before and woke up with a start around 7, confused with where I was and what was going on. I was ready to fly out of the house until my mom told me that dad had gone down to the hospital and I could give him a call for an update. For the next week my dad got up early every day and went and sat with Gav. He would be there early enough to talk with his Neurologists who rounded very early in the morning. He would ask questions of them, talk to the night nurse and meet the morning nurse. If Gav was doing well Grandpa would get to hold him and give him extra love for me.
I would wake up around 7, pump milk for the day, eat breakfasts, get dressed and play with my two big boys. Ryan would go home to work after spending some morning time with us. Mom would get ready to go, we would swing by Starbucks on the way to the hospital. I still wonder where those baristas thought we were going every morning with two toddlers and three loaded caffeine beverages. I would arrive at the hospital around 9, in time for the doctors to round. Get the low down from my dad and the nurses. Some days were bad and those days my dad was able to stay with me. To be moral support and help me asks questions of doctors and nurses.
I have always been a daddy's girl and my dad would do anything for me. This is the best thing my dad has ever done for me though. To be there when we could not and give my baby love. And all the love worked because he is home and healthy now.
Friday, June 18, 2010
Doctor Clauss
There are 3 people I remember vividly from the first night in the PICU. Darby his nurse, Dr.Clauss the resident and Dr.Warner the attending. I remember them all for different reasons but very important ones.
Darby met us at his room when we were brought back. She was tall, her long brown hair in a pony tail, light green scrub pants and a gray long sleeve shirt. Since they did not know what kind of infection Gavyn had all the nurses and doctors had to wear masks and gowns going in and out of his room so as to not spread any disease to the other kids. She was checking his vitals and trying to calm me.
"Is he going to have brain damage from the seizure?" I asked her.
She looked up at me concerned, "You know, these little guys are strong and lets not jump to any conclusions until the doctors can figure out what all is going on."
So calm, reassuring, caring. She explained the nurse rotation, who the doctors were, the lab techs, to ask questions. She gave me some of the tools I used to make it through the next 19 days.
Dr.Warner.... Ryan and I had stepped out of the PICU and when we came walking back Dr.Warner was standing outside his room looking through Gavyn's file. He introduced himself, I noticed the sign hanging on Gav's room door that said 'Gavyn' and made a comment about it. He told us if we wanted it taken down that was no problem, I told him it was fine, I liked it. He wanted to know if we could go look at some pictures with him, we followed him over to a corner of the PICU, there were some computer screens and he pulled up Gavyn's CT scan.
"We took a scan of Gavyn's brain when he got here and..."
In my mind I am finishing his sentence, "everything is fine." Instead I hear,
"Gavyn's scan is not normal."
I melt into the seat he pulled out for me and feel paralyzed as he explains what they have found. I would not see Dr.Warner again for over a week.
And finally Dr. Clauss... I believe everyone has angels looking over them but few of us get to meet them face to face and have interaction with them. Since Dr.Clauss was one of the residents she was there almost every day of those 19 days Gav was in the PICU. It seemed like there were only 2 days she was not. I could be wrong. The night he was brought in and we sat at his bedside, it was her who was the first to tell me about Group B Strep. It was an infection they thought he had, hadn't I been tested when I was pregnant? I didn't even know what it was. There was something in her manner though and the way she would look at you when she talked. She actually cared. She wasn't judging me as a mother.
Every day she would check in, multiple times. If you have ever been in a NICU, PICU or ICU you have probably noticed the chaos. It comes and goes but everyone is always on their toes and ready for anything to happen. But every time Karen Clauss came to Gavyn's room she would look me in the eye and ask how things were. After every round she would hang back and ask me what questions weren't answered for me. What could she explain better? And anytime I would pass her in the hall she would send me a comforting smile.
I know that without Dr.Clauss looking over Gavyn and myself I would not have made it through that time. My dad once asked her how she and the others handled the PICU day after day. Her response,
"I actually have the worst nightmares every night about terrible things happening to all these kids. I am putting my time in here but all I really want to do is take care of kids with runny noses."
Dr.Clauss - Thank you for doing your time in the PICU and hanging in there. You are an amazing doctor. Thank you for genuinely caring about the kids you see. You will be an amazing pediatrician. I am sorry that you spend so much thought, conscience and unconscious worrying about these children. But thankfully one of your little guys made it out strong and healthy thanks to you. He will be an amazing man meant for amazing things. Thank you.
Darby met us at his room when we were brought back. She was tall, her long brown hair in a pony tail, light green scrub pants and a gray long sleeve shirt. Since they did not know what kind of infection Gavyn had all the nurses and doctors had to wear masks and gowns going in and out of his room so as to not spread any disease to the other kids. She was checking his vitals and trying to calm me.
"Is he going to have brain damage from the seizure?" I asked her.
She looked up at me concerned, "You know, these little guys are strong and lets not jump to any conclusions until the doctors can figure out what all is going on."
So calm, reassuring, caring. She explained the nurse rotation, who the doctors were, the lab techs, to ask questions. She gave me some of the tools I used to make it through the next 19 days.
Dr.Warner.... Ryan and I had stepped out of the PICU and when we came walking back Dr.Warner was standing outside his room looking through Gavyn's file. He introduced himself, I noticed the sign hanging on Gav's room door that said 'Gavyn' and made a comment about it. He told us if we wanted it taken down that was no problem, I told him it was fine, I liked it. He wanted to know if we could go look at some pictures with him, we followed him over to a corner of the PICU, there were some computer screens and he pulled up Gavyn's CT scan.
"We took a scan of Gavyn's brain when he got here and..."
In my mind I am finishing his sentence, "everything is fine." Instead I hear,
"Gavyn's scan is not normal."
I melt into the seat he pulled out for me and feel paralyzed as he explains what they have found. I would not see Dr.Warner again for over a week.
And finally Dr. Clauss... I believe everyone has angels looking over them but few of us get to meet them face to face and have interaction with them. Since Dr.Clauss was one of the residents she was there almost every day of those 19 days Gav was in the PICU. It seemed like there were only 2 days she was not. I could be wrong. The night he was brought in and we sat at his bedside, it was her who was the first to tell me about Group B Strep. It was an infection they thought he had, hadn't I been tested when I was pregnant? I didn't even know what it was. There was something in her manner though and the way she would look at you when she talked. She actually cared. She wasn't judging me as a mother.
Every day she would check in, multiple times. If you have ever been in a NICU, PICU or ICU you have probably noticed the chaos. It comes and goes but everyone is always on their toes and ready for anything to happen. But every time Karen Clauss came to Gavyn's room she would look me in the eye and ask how things were. After every round she would hang back and ask me what questions weren't answered for me. What could she explain better? And anytime I would pass her in the hall she would send me a comforting smile.
I know that without Dr.Clauss looking over Gavyn and myself I would not have made it through that time. My dad once asked her how she and the others handled the PICU day after day. Her response,
"I actually have the worst nightmares every night about terrible things happening to all these kids. I am putting my time in here but all I really want to do is take care of kids with runny noses."
Dr.Clauss - Thank you for doing your time in the PICU and hanging in there. You are an amazing doctor. Thank you for genuinely caring about the kids you see. You will be an amazing pediatrician. I am sorry that you spend so much thought, conscience and unconscious worrying about these children. But thankfully one of your little guys made it out strong and healthy thanks to you. He will be an amazing man meant for amazing things. Thank you.
Thursday, June 17, 2010
Dear Gavyn,
I have journaled all of my prayers for years. It helps me to stay focused and think about everything I want to talk to God about. The last prayer I journaled before you went into the hospital went like this,
"Father, thank you for another day and for Spring coming. There is always more hope and possibility in the air. Thank you for our families and friends who have been so helpful during this time. You have really blessed us!
Continue to bring work in for Ryan.
Thank you for our health and safety, please keep us that way today. Help me to adjust to 3 kiddos and to keep making it through.
Amen."
Little did I know that the next morning would be the morning from hell. That your health would be taken away for a time. Your health was taken but not your spirit and your will to live.
We had a terrible time picking a name for you. For some reason every name Mommy liked Daddy was not too keen on and the other way around. One day Mommy saw Gavyn and really liked it but we couldn't pick a middle name to go with it for awhile. Finally one night at Barnes and Noble, Daddy saw Elliot and we loved the two together. Little did I know that your name would fit you perfect and be amazing.
Gavyn: White hawk of battle. Gavyn is a form of Gawain. Gawain was one of King Arthur's knights of the Round Table.
Elliot: My God is the Lord
I had forgotten about the knights of the round table and during your stay I always called you my little knight. I would tell you how you were a fighter on your white horse going into battle and that you were going to win the battle. I am sure you can imagine your Momma crying when I looked back at the meaning of your name and was reminded of that.
You have the strongest spirit of anyone I know. Every day you would fight and grow and fight again. I see your go-get-'em personality every day. You are so strong and sweet. Going back and reading my journal from the time you were in the hospital is so hard. It is so painful to remember everything you have already been through and you are only 16 weeks old. In 16 weeks you have already lived a lifetime. Been through more than most people go through their entire lives. And you were victorious. You never gave up, you fought. You taught your family important lessons.
"It is so amazing to watch you improve and never give up. You are such an inspiration to Mommy and I will never be the same. You have really shown us all what is important. It is amazing to watch someone so small that you think is so fragile go through so much and fight and fight. You do not give up easy! You are so silly though - you like to trick people into thinking you are way more ready for things and at the last minute change your mind. Mommy knew when she was pregnant that this is how you were going to be. You like to fool people and keep them on their toes. I think life will be a wild ride with you." - Mom's Journal, 3/17
Mommy loves you my sweet White Knight. Kisses and hugs.
"Father, thank you for another day and for Spring coming. There is always more hope and possibility in the air. Thank you for our families and friends who have been so helpful during this time. You have really blessed us!
Continue to bring work in for Ryan.
Thank you for our health and safety, please keep us that way today. Help me to adjust to 3 kiddos and to keep making it through.
Amen."
Little did I know that the next morning would be the morning from hell. That your health would be taken away for a time. Your health was taken but not your spirit and your will to live.
We had a terrible time picking a name for you. For some reason every name Mommy liked Daddy was not too keen on and the other way around. One day Mommy saw Gavyn and really liked it but we couldn't pick a middle name to go with it for awhile. Finally one night at Barnes and Noble, Daddy saw Elliot and we loved the two together. Little did I know that your name would fit you perfect and be amazing.
Gavyn: White hawk of battle. Gavyn is a form of Gawain. Gawain was one of King Arthur's knights of the Round Table.
Elliot: My God is the Lord
I had forgotten about the knights of the round table and during your stay I always called you my little knight. I would tell you how you were a fighter on your white horse going into battle and that you were going to win the battle. I am sure you can imagine your Momma crying when I looked back at the meaning of your name and was reminded of that.
You have the strongest spirit of anyone I know. Every day you would fight and grow and fight again. I see your go-get-'em personality every day. You are so strong and sweet. Going back and reading my journal from the time you were in the hospital is so hard. It is so painful to remember everything you have already been through and you are only 16 weeks old. In 16 weeks you have already lived a lifetime. Been through more than most people go through their entire lives. And you were victorious. You never gave up, you fought. You taught your family important lessons.
"It is so amazing to watch you improve and never give up. You are such an inspiration to Mommy and I will never be the same. You have really shown us all what is important. It is amazing to watch someone so small that you think is so fragile go through so much and fight and fight. You do not give up easy! You are so silly though - you like to trick people into thinking you are way more ready for things and at the last minute change your mind. Mommy knew when she was pregnant that this is how you were going to be. You like to fool people and keep them on their toes. I think life will be a wild ride with you." - Mom's Journal, 3/17
Mommy loves you my sweet White Knight. Kisses and hugs.
Sunday, June 13, 2010
Naked Boy
One of the many problems Gavyn had while he was in the hospital was his body temp. Even before he went into the hospital I had noticed that he always seemed a little on the chilly side. I did not think a lot of it because it was February and our house is always chilly because it is older. I just kept him bundled up. Little did I know it was because he was getting sick and did not have the ability to keep his temp up.
When he was admitted they put him in one of the NICU beds that has a heater and it was always on. The day they tried to move him out of the PICU it (the heater) had been turned off and all day his temp was slowly dropping and the nurse did not seem to catch that (don't get me started on that day..). About time they moved him and the draft got to him his heart started to crash. It took about 2 hours to get him warmed back up for his heart to stabilize.
Once he had his external shunt put in the docs wanted him more elevated, they took him out of the NICU bed and put him in a normal crib. He had heat lamps put on him almost around the clock. He was dressed in long sleeve, long pant sleepers, usually a couple blankets rolled up around him to sort of hold him in place because of the angle he was sitting at with at least 2 more blankets over him.
One of the first times I got to hold him after his shunt going in I held him for 2 hours sitting in a rocker. It was the first time his whole stay (about 15 days at that point) that his temp went up to 98. Mom, Dr.Clauss and the nurse, Kenzie all joked with me that I would just have to hold him all the time when we got home. I told them I was putting him in the sling when I got home and I wasn't letting him out until he was 16, he would be plenty warm!
When he got home the first time we kept hats on him, two layers, sometimes a blanket and I wold check his temp once a day at least. After he went back to the hospital and had his internal shunt put in he did so much better!
Now he is my nakey boy! Every time I lay him on the changing table to dress him he just cracks up when I go to take his clothes off. He gets his big silly grin and laughs out loud sometimes. With the extremely hot weather the past couple days he has been going around with just a shirt on or just overalls - no shirt at all. He gets over heated being in the sling now and doesn't like to be in it for very long. Just a normal baby who loves to be in a diaper.
Monday, June 7, 2010
Cardinal Glennon, day 1, ER
It has been 13 weeks and 2 days since we took Gavyn to Cardinal Glennon. I still wake up in cold sweats in the middle of the night thinking about that first morning.
5 am, March 5, wake up to a shrill cry from Gavyn that I had not heard before. Sit up in bed while Ryan changes his diaper. He hands him to me, goes back to bed and I get ready to nurse him. It had been about 4 or 5 hours since his last feeding and I am sure he is starving. I am shocked when he does not start to nurse right away and seems a little limp. I hold him up and notice in the dim light he just does not seem the same. He opens his eyes and they seem dark and lifeless. My stomach has a sick feeling in it but I try to tell myself he is just not fully awake and I am over reacting. I cradle him and he starts to act like he is going to nurse. We sort of drift off to sleep for awhile. I startle myself back awake, realizing he still has not actually eaten. I hold him up on my shoulder and can feel him breathing very heavy. It is almost 6 o'clock and my mind is racing. What could be wrong? Is something wrong? Maybe I am overreacting, new mom syndrome. Can't call the doctor until 7. Did he just stop breathing for a second or was it just really shallow? Do we run him to the emergency room? I pull him forward to look at his face. His arms fall to his side, his eyes widen, his whole body convulses in a seizure it stops and his eyes roll to the sides.
"GAVYN! GAVYN!"
Ryan wakes, "What??!!"
"Get your phone and call 911!"
I frantically tell the operator our address, that my 2 week old son has just had a seizure, I am not sure what is wrong and I can not tell if he is breathing or not. She tells me to lay him on the bed, the paramedics are on the way. Before we can even think of what to do next we hear the sirens and Ryan rushes to the door to let them in. Two men, one in his mid 20's and one in his mid 40's come into the room. They check him over, ask a million questions. Gavyn is laying lifeless, his color ashen. I feel relieve that they are their and terror all at the same time. The older gentlemen takes Gav in his arms and listens to his heart for minutes while the other asks more questions.
"His heart rate is all over the place, 80's then back up over 100. We need to take him in now, what hospital?" he interrupts us.
"Cardinal Glennon."
"Get dressed, grab his car seat and meet us outside."
Everything seems to happen so fast. Nevin wakes up, I somehow tell Ryan to call my parents as I rush out the door and get in the ambulance.
They have already started giving him oxygen and his color is coming back. I get to hold him on the way to the hospital not knowing this will be my last time to hold him for over a week. The paramedic tries to be very comforting and reminding me that we are taking him to the best place where they can take awesome care of him. That everything could be fine and we could be back home in no time. We seem to fly getting to the hospital and I am completely disorientated by coming in through the ambulance entrance, I am not sure how Ryan will even find us, do I even have my phone?
We rush into the ER and are met by a nurse immediately who takes us into a room. I lay Gavyn down on the bed that seems to swallow him up he is so small. She is getting all the information from the paramedic and I am standing by him helpless as he looks around. After a few short moments he is hooked up to a monitor and before I know it he is descended upon by about 5 nurses and two doctors. I quickly move out of their way but am completely confused by what is happening. I break down crying, standing in the corner. It seems like forever before anyone notices me, a nurse comes over and rubs my back, shows me there is a chair next to me and helps me sit down.
"It is OK, you just sit here and cry." she says in a sweet voice.
Now I can see the monitor, his heart rate is in the 80's (100's-200's is normal for a baby), his breathing is in the 30's. I hear them talking about breathing tubes. Out of the corner of my eye I see Ryan and Mom, frantic and crying trying to find us. We huddle together in the corner. I do not even remember if the doctor told us or a nurse that they were going to put a breathing tube in him and we would need to step out. The next thing I new the Chaplin was there, a Chaplin does not come unless it is really bad. What is going on with my perfect baby?
We sat in the waiting room for an hour. Each time we looked out the hallway we could see his room with the curtain draw, people in and out. The tube was in. They took an X-Ray of his chest, they needed to readjust the tube. They take another X-Ray. Finally the doctor comes in. He starts telling us that Gavyn is really sick, he has some sort of infection, they have taken blood and would like to do a spinal tab, they need to identify the infection and it will take 48-72 hours for it to grow from the blood cultures (I knew this from Nevin's ER visit). He will need antibiotics. Will I sign a consent for a spinal tab. Everything is swirling in my head. I can't seem to grasp what is happening. I even tell Ryan, "Good, if it is an infection maybe we can go home by Monday and he will just be on some medicine."
Nothing is registering.
I get a text from a friend asking if she can come see Gavyn, no idea that we are at the ER.
I remember Skyler was supposed to have a play date.
We wait for the doctor to come back.
It is only 8 am and it feels like an eternity.
The doctor is back, we can see him. I rush for the room not prepared for what I will see. He is hooked up to machines, two IV's are in, a breathing tube covers his angelic face, he is knocked out from the drugs for the spinal tap.
"It is OK to touch him."
I rub his little arm and cry.
Eventually they are ready to take him to the PICU and we all move with him. Again we are put in a waiting room as they get him to a room but before long they are rushing him to a CT scan. Hours pass. Finally Ryan goes to the PICU and stands at the doors until a nurse notices him and tells him we should come back. I have no idea this will be my new home for the next 19 days. I don't even notice the other children, nurses, doctors, beeping... We almost run to his room. And there I sat, at his bedside for days.
5 am, March 5, wake up to a shrill cry from Gavyn that I had not heard before. Sit up in bed while Ryan changes his diaper. He hands him to me, goes back to bed and I get ready to nurse him. It had been about 4 or 5 hours since his last feeding and I am sure he is starving. I am shocked when he does not start to nurse right away and seems a little limp. I hold him up and notice in the dim light he just does not seem the same. He opens his eyes and they seem dark and lifeless. My stomach has a sick feeling in it but I try to tell myself he is just not fully awake and I am over reacting. I cradle him and he starts to act like he is going to nurse. We sort of drift off to sleep for awhile. I startle myself back awake, realizing he still has not actually eaten. I hold him up on my shoulder and can feel him breathing very heavy. It is almost 6 o'clock and my mind is racing. What could be wrong? Is something wrong? Maybe I am overreacting, new mom syndrome. Can't call the doctor until 7. Did he just stop breathing for a second or was it just really shallow? Do we run him to the emergency room? I pull him forward to look at his face. His arms fall to his side, his eyes widen, his whole body convulses in a seizure it stops and his eyes roll to the sides.
"GAVYN! GAVYN!"
Ryan wakes, "What??!!"
"Get your phone and call 911!"
I frantically tell the operator our address, that my 2 week old son has just had a seizure, I am not sure what is wrong and I can not tell if he is breathing or not. She tells me to lay him on the bed, the paramedics are on the way. Before we can even think of what to do next we hear the sirens and Ryan rushes to the door to let them in. Two men, one in his mid 20's and one in his mid 40's come into the room. They check him over, ask a million questions. Gavyn is laying lifeless, his color ashen. I feel relieve that they are their and terror all at the same time. The older gentlemen takes Gav in his arms and listens to his heart for minutes while the other asks more questions.
"His heart rate is all over the place, 80's then back up over 100. We need to take him in now, what hospital?" he interrupts us.
"Cardinal Glennon."
"Get dressed, grab his car seat and meet us outside."
Everything seems to happen so fast. Nevin wakes up, I somehow tell Ryan to call my parents as I rush out the door and get in the ambulance.
They have already started giving him oxygen and his color is coming back. I get to hold him on the way to the hospital not knowing this will be my last time to hold him for over a week. The paramedic tries to be very comforting and reminding me that we are taking him to the best place where they can take awesome care of him. That everything could be fine and we could be back home in no time. We seem to fly getting to the hospital and I am completely disorientated by coming in through the ambulance entrance, I am not sure how Ryan will even find us, do I even have my phone?
We rush into the ER and are met by a nurse immediately who takes us into a room. I lay Gavyn down on the bed that seems to swallow him up he is so small. She is getting all the information from the paramedic and I am standing by him helpless as he looks around. After a few short moments he is hooked up to a monitor and before I know it he is descended upon by about 5 nurses and two doctors. I quickly move out of their way but am completely confused by what is happening. I break down crying, standing in the corner. It seems like forever before anyone notices me, a nurse comes over and rubs my back, shows me there is a chair next to me and helps me sit down.
"It is OK, you just sit here and cry." she says in a sweet voice.
Now I can see the monitor, his heart rate is in the 80's (100's-200's is normal for a baby), his breathing is in the 30's. I hear them talking about breathing tubes. Out of the corner of my eye I see Ryan and Mom, frantic and crying trying to find us. We huddle together in the corner. I do not even remember if the doctor told us or a nurse that they were going to put a breathing tube in him and we would need to step out. The next thing I new the Chaplin was there, a Chaplin does not come unless it is really bad. What is going on with my perfect baby?
We sat in the waiting room for an hour. Each time we looked out the hallway we could see his room with the curtain draw, people in and out. The tube was in. They took an X-Ray of his chest, they needed to readjust the tube. They take another X-Ray. Finally the doctor comes in. He starts telling us that Gavyn is really sick, he has some sort of infection, they have taken blood and would like to do a spinal tab, they need to identify the infection and it will take 48-72 hours for it to grow from the blood cultures (I knew this from Nevin's ER visit). He will need antibiotics. Will I sign a consent for a spinal tab. Everything is swirling in my head. I can't seem to grasp what is happening. I even tell Ryan, "Good, if it is an infection maybe we can go home by Monday and he will just be on some medicine."
Nothing is registering.
I get a text from a friend asking if she can come see Gavyn, no idea that we are at the ER.
I remember Skyler was supposed to have a play date.
We wait for the doctor to come back.
It is only 8 am and it feels like an eternity.
The doctor is back, we can see him. I rush for the room not prepared for what I will see. He is hooked up to machines, two IV's are in, a breathing tube covers his angelic face, he is knocked out from the drugs for the spinal tap.
"It is OK to touch him."
I rub his little arm and cry.
Eventually they are ready to take him to the PICU and we all move with him. Again we are put in a waiting room as they get him to a room but before long they are rushing him to a CT scan. Hours pass. Finally Ryan goes to the PICU and stands at the doors until a nurse notices him and tells him we should come back. I have no idea this will be my new home for the next 19 days. I don't even notice the other children, nurses, doctors, beeping... We almost run to his room. And there I sat, at his bedside for days.
Friday, June 4, 2010
Baby Gav Pics
Ok seriously, is he not the cutest little boy with a frog you have ever see? 
Laughing, laughing, laughing
Ten perfect fingers on a sleepy baby
Wow, CUTE!Thursday, June 3, 2010
I have bubbles on my heels
The day that Gavyn was brought to the Hospital they ran so many tests on him to find out what was wrong. You would never know looking at him today. The spinal tab, the IV's, the PICC, have healed and signs of them have gone away. There is one tests though that still has remaining signs, if you run your finger slowly on his heel you can feel the little bubbles.
Once the infection was identified Gav had labs run on him every hour for a week. They would come in and prick his heel and take blood. This was how they could check his blood and see if the infection was going down. After a week they started taking blood less because the infection was gone. They still took labs every couple hours and finally down to once a day up until 2 days before he went home. His nurse Susan made a comment that she wondered if kids who had that many labs done for such a long period of time had sensitive feet for the rest of their lives. I wonder myself. I am sure the little bubbles will go down with time but for now it is just another reminder of what my little Warrior has been through.
Once the infection was identified Gav had labs run on him every hour for a week. They would come in and prick his heel and take blood. This was how they could check his blood and see if the infection was going down. After a week they started taking blood less because the infection was gone. They still took labs every couple hours and finally down to once a day up until 2 days before he went home. His nurse Susan made a comment that she wondered if kids who had that many labs done for such a long period of time had sensitive feet for the rest of their lives. I wonder myself. I am sure the little bubbles will go down with time but for now it is just another reminder of what my little Warrior has been through.
Tuesday, June 1, 2010
My Nevers
To know my Nevers is to know looks and fists like these. He is my sweet boy with a big smile, bigger personality, and lots of hugs. He is my middle child (he was born with the complex) that just easily slid into the family. I love thinking back on all of my pregnancies and seeing their personalities even while in the womb. Nevin is that sweet kid that tries really hard to be good, to be on time but he always seems to get distracted and maybe even over sleep. His due date was Feb. 5th and when I saw my Doc that day he thought I had a week to go. I called him at 1am Feb. 6th in labor and Nevin showed up 6 hours later. He nursed good, slept good, cried little and smiled all the time.
Now that he is 2 he is all boy! His favorite movie is Cars, all day long you can find some sort of car or train in his hand. Always willing to ram it into a wall, chair, your leg, the poor dog, all while grunting "VROOOM!" Back up, move over, just plain get out of his way when he throws those arms back and charges. Yet, he is still my little cuddly sweet boy that will climb up in your lap, lay his head back and settle in for a long cuddle. He will find you, throw up his hands and give you the biggest, tightest hug for no reason. If I ever find myself crying during the day (mostly when I was pregnant!) Nevin has a sixth sense and can seek me out, he will just stand there with his hand on my knee and look at me with sweet eyes.
All 3 of my boys have special spots in my heart. Skyler tugs at my need to live life to the fullest. Go full steam ahead, don't stop, take it all in. What Gav pulls at is probably a whole other blog for goodness sake... Seeing God's goodness and being able to look it in the eyes. And Nevin... You have to know Nevin, he is 28 months and doesn't talk yet but boy, can he communicate. You just have to take the time, get on his level, be a little quiet. He reminds me to sit back and relax. Don't do things just because people want you to. Don't sweat the small stuff. Love on people. And don't you dare let anyone walk on you that you don't throw a fit and go face first in the carpet. :) He is my little lovey buggy.
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