Everyone has been telling us how strong we've been.
I guess I'm unsure how we were supposed to be. Who has time to cry? I let myself shed a few tears alone in the parking garage, but I had to get it together and go feed my baby.
I didn't fall apart because I didn't have that luxury. I didn't break down and cry because it wouldn't have done me or him any good. I needed his environment to be calm and secure more than I needed to indulge in my deep fears. All I cared about was being positive and calm, that's what my precious fearful boy needed.
I have been religious my entire life, I grew up in a small church and those values have steered me every step of the way. That faith allowed me to believe that everything would be ok. I prayed constantly for peace, acceptance of God's will and calm. It's very hard not to ask for what you want, but it was more important to me to feel calm and prepared than to ask for healing that might not have been a part of God's plan. I feel like we were truly walking by faith. We had no control, so we prayed.
If you've ever used the phrase "emotional roller coaster," let me tell you, I've been on one. We went from, "large mass" to "brain surgery" to "all clear" (with lots of waiting in between) in less than a week, there really aren't much higher highs or lower lows.
I still sit and wonder if it all really happened. Did we really go through all of that? The shock is overwhelming. I can tell you a list of emotions I've felt, but numb might be the top one. Calm. Determined. Shocked. Scared. Sad. Elated. Probably the entire spectrum.
Wednesday, February 13, 2013
Tuesday, February 12, 2013
Hospital Timeline
We were admitted Monday night, unsure of our future but certain that Archer would have an MRI Tuesday morning. It was a restless night for all of us, but especially him.
Tuesday morning came early, 4:30 for Archer and I and brought a neuro surgery team. There were 4 or 5 of them. They addressed Chance and I, didn't introduce themselves to Archer, and told us surgery would be at 9 the next morning. He went down for his MRI soon after, and we waited for results all day. We didn't hear anything.
Tuesday night was sleepless for me, wondering and worrying. The MRI would determine if the spinal column was clear and it was frustrating to know that someone had the answer to that question and they weren't telling us.
Wednesday morning came early again, the 4 am vitals check woke him for the second day in a row. Around 8 the neuro team came in again, after my family arrived and showed us an MRI of a very large tumor above the left ear, spinal column was clear. My first little breath.
They took us back to holding before surgery soon and our little guy was too quickly being pried off of me and taken into surgery. The wait began. It was estimated at 6 hours.
We sat in the waiting room surrounded by family and close friends. It was an amazing feeling, knowing that so many people cared so much for us to sit vigil while we waited for news.
Less than 4 hours later the nurse called. Her voice was neutral when she said, "They're closing up, if you want to go to the third floor Dr Gross will be in to talk to you." My stomach dropped. It was too soon. She didn't say anything positive. She didn't say he was stable, she didn't say it went well.
Chance and I went down stairs to wait. It was the longest 30 minutes of my life. Then the doctor walks in with a smile and I breathed in for the first time in hours. The tumor was out, my baby was fine, she believes it's benign. Relief flooded through me and Chance says I exploded verbally. I felt it happening, but I couldn't stop. I didn't know what to ask, but I wanted to make sure she wasn't going to change her mind.
We were allowed to go into recovery one at a time. He was crying when I got in there, and that was a helpless feeling. He was so afraid and I just wanted to get in bed with him and hold him. I was scared too. He looked different and had this scary incision mark and I couldn't help.
I followed him up to the PICU and then we waited again. Waited for him to wake up and be well enough to move to a regular room.
He didn't really wake until late that night. He was in pain and he was upset. He was scared of the nurses and doctors. He flinched when they came in. We got no rest.
Thursday brought another MRI and a move back to a regular room. The second MRI was clear, the doctor had gotten the entire tumor out. I breathed again.
We had more visitors that night, and he seemed to be doing ok. Then Chance decided he was running a fever and he had to go home. Archer slept very little and jumped like he was falling every time he went to sleep. I slept at the foot of his bed because he needed me close and I was afraid of hurting him.
On Friday the swelling became worse. He withdrew, his speech was affected and he was scared to pee. His pain seemed low, and he was only taking Tylenol. He had lots of visitors, but he wasn't interactive. The physical therapist came and brought a wheel chair for him to tour around in She made him walk from his chair to me and sit in my lap out of bed. He still hadn't eaten and they wanted him to eat something. He decided he would rather climb out of the chair with me than eat. It made me giggle because he said "Go away." to his tray and pushed it. Then he started sliding out of my lap in an effort to get in bed. Then he told me to go away because he didn't want me telling him to eat. The speech path came by and checked his swallow, which seemed normal. He just needed to eat. Later that day he said he was hungry, he just couldn't find the words to tell me what he wanted. I made a picture album on his iPad so he could point to some food items, still nothing. Chance's cousin came by that night with his favorite kind of apple sauce. I had tried a similar one early in the day, but it wasn't our normal brand.
Saturday Chance came back, bringing more applesauce. We had tons of visitors bring every food imaginable, but all he wanted was the GoGo Squeeze applesauce. By 6pm he had eaten a small box of them and tried a few other things. My cousin went for more. That night he was still having a hard time expressing his needs and he was still in constant fear of moving his IV arm and the nurses.
Sunday morning was the best. He ate his breakfast, drank some milk, had a few bites of eggs and biscuit. And more applesauce. When the doctors came by they said they saw no reason why he couldn't go home. We were ecstatic. We got some lunch and waited for my family to bring Foster and help us load everything we had accumulated. His speech was slowly improving and he was getting up more.
It was the end of one journey and the beginning of another.
Stay tuned tomorrow for the emotional side of this timeline.
Tuesday morning came early, 4:30 for Archer and I and brought a neuro surgery team. There were 4 or 5 of them. They addressed Chance and I, didn't introduce themselves to Archer, and told us surgery would be at 9 the next morning. He went down for his MRI soon after, and we waited for results all day. We didn't hear anything.
Tuesday night was sleepless for me, wondering and worrying. The MRI would determine if the spinal column was clear and it was frustrating to know that someone had the answer to that question and they weren't telling us.
Wednesday morning came early again, the 4 am vitals check woke him for the second day in a row. Around 8 the neuro team came in again, after my family arrived and showed us an MRI of a very large tumor above the left ear, spinal column was clear. My first little breath.
They took us back to holding before surgery soon and our little guy was too quickly being pried off of me and taken into surgery. The wait began. It was estimated at 6 hours.
We sat in the waiting room surrounded by family and close friends. It was an amazing feeling, knowing that so many people cared so much for us to sit vigil while we waited for news.
Less than 4 hours later the nurse called. Her voice was neutral when she said, "They're closing up, if you want to go to the third floor Dr Gross will be in to talk to you." My stomach dropped. It was too soon. She didn't say anything positive. She didn't say he was stable, she didn't say it went well.
Chance and I went down stairs to wait. It was the longest 30 minutes of my life. Then the doctor walks in with a smile and I breathed in for the first time in hours. The tumor was out, my baby was fine, she believes it's benign. Relief flooded through me and Chance says I exploded verbally. I felt it happening, but I couldn't stop. I didn't know what to ask, but I wanted to make sure she wasn't going to change her mind.
We were allowed to go into recovery one at a time. He was crying when I got in there, and that was a helpless feeling. He was so afraid and I just wanted to get in bed with him and hold him. I was scared too. He looked different and had this scary incision mark and I couldn't help.
I followed him up to the PICU and then we waited again. Waited for him to wake up and be well enough to move to a regular room.
He didn't really wake until late that night. He was in pain and he was upset. He was scared of the nurses and doctors. He flinched when they came in. We got no rest.
Thursday brought another MRI and a move back to a regular room. The second MRI was clear, the doctor had gotten the entire tumor out. I breathed again.
We had more visitors that night, and he seemed to be doing ok. Then Chance decided he was running a fever and he had to go home. Archer slept very little and jumped like he was falling every time he went to sleep. I slept at the foot of his bed because he needed me close and I was afraid of hurting him.
On Friday the swelling became worse. He withdrew, his speech was affected and he was scared to pee. His pain seemed low, and he was only taking Tylenol. He had lots of visitors, but he wasn't interactive. The physical therapist came and brought a wheel chair for him to tour around in She made him walk from his chair to me and sit in my lap out of bed. He still hadn't eaten and they wanted him to eat something. He decided he would rather climb out of the chair with me than eat. It made me giggle because he said "Go away." to his tray and pushed it. Then he started sliding out of my lap in an effort to get in bed. Then he told me to go away because he didn't want me telling him to eat. The speech path came by and checked his swallow, which seemed normal. He just needed to eat. Later that day he said he was hungry, he just couldn't find the words to tell me what he wanted. I made a picture album on his iPad so he could point to some food items, still nothing. Chance's cousin came by that night with his favorite kind of apple sauce. I had tried a similar one early in the day, but it wasn't our normal brand.
Saturday Chance came back, bringing more applesauce. We had tons of visitors bring every food imaginable, but all he wanted was the GoGo Squeeze applesauce. By 6pm he had eaten a small box of them and tried a few other things. My cousin went for more. That night he was still having a hard time expressing his needs and he was still in constant fear of moving his IV arm and the nurses.
Sunday morning was the best. He ate his breakfast, drank some milk, had a few bites of eggs and biscuit. And more applesauce. When the doctors came by they said they saw no reason why he couldn't go home. We were ecstatic. We got some lunch and waited for my family to bring Foster and help us load everything we had accumulated. His speech was slowly improving and he was getting up more.
It was the end of one journey and the beginning of another.
Stay tuned tomorrow for the emotional side of this timeline.
Tuesday, February 5, 2013
February 4th 2013, Part One
Today the bottom of my world fell out from underneath my feet.
After weeks of him just not quite being himself, we took our oldest son to the emergency room at Children's hospital for some tests. We were triaged in quickly and within two hours had a ct scan and terrible news.
He has a large mass on the left side of his brain. We don't know anything else at this point.
I feel as though someone punched me in the stomach. Hard. I don't want this for my little guy. I want him to grow to be big and strong and not have to deal with this pain and fear. I want him to be happy and healthy.
I am so scared. How do you tell other people that your baby has something like this happening? How do you recover? I'm so heartbroken and sad, but I know more than anything he needs a strong happy momma. So that's what I'll be for him.
(Write's note: I wrote this Monday night at the hospital, I just wanted to make sure everyone knew before I shared it.)
After weeks of him just not quite being himself, we took our oldest son to the emergency room at Children's hospital for some tests. We were triaged in quickly and within two hours had a ct scan and terrible news.
He has a large mass on the left side of his brain. We don't know anything else at this point.
I feel as though someone punched me in the stomach. Hard. I don't want this for my little guy. I want him to grow to be big and strong and not have to deal with this pain and fear. I want him to be happy and healthy.
I am so scared. How do you tell other people that your baby has something like this happening? How do you recover? I'm so heartbroken and sad, but I know more than anything he needs a strong happy momma. So that's what I'll be for him.
(Write's note: I wrote this Monday night at the hospital, I just wanted to make sure everyone knew before I shared it.)
Friday, January 4, 2013
Letter to my Nanny, 2013
It's been six years now. When I wrote my letter last year, I had so much to update you about, and here we are again with so much more.
I've thought of you so much this year. I wished you were here much more frequently than ever before. There have been so many changes and so many new things that I really wish you were here for me to call and get advice or just come sit and talk.
Archer started pre-k in August. It reminds me so much of the things we used to practice in my little red and white striped notebook you made. I still have it. I still have the book you taught me to read from. I'm hoping that next year I'll be able to practice with Archer too.
We had a new baby in September. His name is Foster Elias. I have loved the name Elias since the days we used to work on genealogy stuff together. His room is now your old room. I wish you were here to just sit and hold him so I could do something other than sit and hold him myself. He loves to snuggle and I know you would love it too.
We were saddened this year that your big brother went to Heaven to be with you, but I can only imagine the glorious reunion you all had. I can just see you all sitting around a big kitchen table enjoying each other's company. I wish that reunion was happening here, but I hope that we're making those same memories for our kiddos down here.
I'll keep it short this year, but just know that you are so missed. By all of us. Especially the ones who don't know what they're missing.
143
Sally
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