A glimpse into 24 hours of life with Sam...
We had a big thunderstorm the other night. Sam (who has rejected his white noise CD ever since we accidentally forgot to hit 'repeat' a few times, causing a very scary heart beat track to turn on and scare the crap out of him) freaked out with the first big thunder boom that came at about 1am. By the time I got to the top of the stairs, he had his glow worm in one hand and his blanket in the other and was getting out of bed to get the hell out of his room. He has not slept in our room since he was 4 months old, and he has not slept in our bed since before his surgery at 3 months. But what other option did I have?
I laid him down between Chris and I, and covered him up. He was really peaceful for about 5 min, and I even saw his eyes close a few times. But, once he realized he was in Mommy and Daddy's bed, he started to play with the covers and ask for the phone (as I'm so sure Nana or Yaya would have wanted a call at 1am). An hour later, once the thunder had calmed down, I told him "Alright, back to your car bed"...he protested and then pretended to close his eyes. Too little too late buddy. Naturally he had no problem going back to sleep, but getting up the next morning was rough.
For one, he didn't want to get up. Then he didn't want to get dressed. Then he definently didn't want to get in the car without getting to watch an episode of his beloved Yo Gabba Gabba. I coaxed him into the car with a 'cookie'....a breakfast cereal bar. He broke the bar in half by accident, and had a total melt down, asking me to 'fix it fix it'. It was tragic.
Feeling bad about the broken cookie and rough morning, I took him to get some fries (his fav) at a new Burger King near our house. Daddy was out playing Ultimate Frizbee with his buddies, so it was a Momma and Sam date night. There is a huge play house in this BK...Sam's eyes lit up immediately. Unfortunately, the makers of this play house failed to realize children younger than 8 might want to play too. He wasn't able to get up into the tunnels because the stair case was GIANT....well, the first two steps werent, but after that they quadrupled in height. When I realized he would never make it up into the thing, I had to go in and up the first two steps and pull him, kicking and screaming, out of the play place. I (with my 7 month preggo belly) had to haul him in one arm and our food in the other out to the car, with him pitching a royal fit the whole way.
Once again, feeling bad, I brought him to an out door play place at a church that is right across the street from our neighborhood. You have to hike up a huge hill to get there, and hills really make Sam out of breath (me too, really). He got half way up before I had to, yet again, haul him and our food (with my 7 month preggo belly) up the rest of the way. The playground was wet and dirty from the bad rain the night before, and it didn't take long for Sam's pant butt to be covered in brown wetness. When another little girl and her mom came, I right away told them Sam had cleaned the slides for them - I didn't want them to think he had pooed! Not 2 minutes later, Sam made a very obvious poo (not audible or smellable...he spent about 3 minutes crouched in a corner grunting)! Not wanting to break his heart and pull him away from yet another play place, I let him play for a few more minutes and then we made our exit.
I changed his diaper as soon as I got him home, and set him up on the couch in front of the TV (I know, I'm a terrible Mom) so that I could clean the kitchen. About 5 min later, Sam started crying out for Mommy with a very sad little voice. I walked out to the couch, and he was holding up his hands to me. Both were covered in a peanut butter like substance. Suddenly realizing what it was, I looked at where he was sitting. Somehow he had pooed (again) and it had come completely out of his diaper (which had become bunched to one side when I put him up on the couch). Sigh. Spent the rest of my time cleaning poo off of Sam and the couch.
Lessons learned thanks to Sam: 1. It takes effort to teach your kids how to sleep in bed with you, and I'm too lazy to try it again - ever. 2. Cookies may carry deep emotional meaning to a child, and you should not lie about what is or is not a cookie. 3. Stick with playgrounds you KNOW are YOUR kid friendly. 4. Poo happens.
Wednesday, April 6, 2011
Wednesday, March 30, 2011
Glenn-iversary
Today is Sam's second Glenn-iversary. Two years ago, after a sudden medical crash where he nearly died, Sam went through a successful Bidirectional Glenn surgery at CHOA-Egleston in Atlanta. It was at the same time some of the worst and best moments of our lives together as a family. We went from rock bottom to new life. Sam has started pointing to his scar recently. He doesn't get it at all. He looks at it like he looks at his belly button or his toes...it's just a body part. But some day I hope he will look at it and feel proud and empowered by what he has gone through. I remember taking photos of Sam without his shirt on before his surgery (before he got really sick) because I thought I would be so sad when I looked at his little scarred chest...I wanted to remember him 'pure'. But I love his scars. They mean life and hope, and remind me what the power of prayer and love can accomplish. Love you baby Sam!
Friday, March 18, 2011
Oh Collaterals...
We have seen the Cardiologist at LEAST every 3 months since Sam's first open heart surgery 2 years ago. We have been truly bless by 'good news' appointments. It was only a matter of time before something turned. We'll discuss the findings in a minute. First, let's discuss the laughable disaster that was our visit to the Cardio today...
Sam and I talked about going to the doctor all the way to the office. He was perfectly happy when we got there, and smiled at everyone. He charmed the nurse into turning on the big screen in the waiting room (we were the first people there today), and played with their 2 foot tall toy clock - probably the highlight of his day. Chris met us there and Sam and Daddy played in the waiting room while I signed a few papers. Another little boy came in. He had clearly just had surgery, based on how stiff he was moving and how his parents were holding him (you can't pick them up under the arms for 6 weeks after surgery). But Sam got the little boy to play and it wasn't long before the boy was looking much more 'loose' and comfortable laughing with Sam. Finally the nurse called us back. At the same moment, the fire alarm went off.
We all evacuated to the parking garage - Sam, the little boy, the nurses, the doctors...everyone. We were all standing in a circle talking about how this was their second alarm in 2 weeks. One of the nurses tried to point out a police car to Sam, and Daddy picked up Sam to help him see. Suddenly, I noticed a little wet spot showing up on Daddy shirt...apparently Sam's diaper got shifted and Sam got so excited about the police car, he peed all over Daddy. We walked to the car for a clothing change (for Sam, not poor Daddy), and Sam walked the whole way like he had something terribly uncomfortable in his pants...the doctors and nurses couldn't help but laugh.
Naturally when we returned to the building after the alarm, Sam was pissed...he thought he had gotten out without having to see the doctor. He cried through his EKG, BP read, and pulse ox read. His pulse ox was 84%. I was a little disappointed, since our most recent home readings were at 90%. Remember, they want him in mid 80s, and dropping lower would mean surgery time. So in my idiot mind, 90 is close enough to mid 80 to still be pretty damn good. Anyway, Sam was a good boy for his Echo. Luckily I had packed foot loops, and he ate them and watched Dora on the tv in the echo room while the lady took 30 minutes worth of photos.
The results were not bad, but not good. Sam has collateral vessels forming from his aortic arch heading towards his lungs (Aortopulmonary Collaterals...APCs). They are forming because our bodies are smart. His body knows he has low blood oxygen levels. So, it thinks it will fix it by building a secondary pathway for blood to get to the lungs to pick up some extra oxygen. Sounds good. But it's not. I mean, if there was no other surgical procedure, then we would be thanking his body for giving it a good try. But what initially starts off as a route to increase blood oxygen levels, eventually leads to blood flooding the lungs. It also increases the work load on the heart, which receives a then increased return of blood from the lungs. For a little heart already working double duty, this can quickly lead to heart failure.
The first signs of collateral vessels are increased blood oxygen levels and increased fatigue with activity. Both of which we have seen. I was so proud of those 90% readings a few weeks ago, but they may be a sign that some collateral vessels have already grown enough to reach the lungs. We had written off his seeming increase in fatigue with activity to the cold weather, frequent cold/ cough illnesses, and just a pure increase in chances to be active. But this may be a sign of the increased work load on his heart. Maybe. We don't know. The only way to know for sure is to do a heart cath.
Currently, the echo can only detect the start of the collaterals. They get to small to tell if they ACTUALLY have already reached his lungs, and they can also come from parts of the Aorta that can't be imaged by echo. Since Sam's EKG, BP, and today's oxygen readings were around his normal, the doctor doesn't think the problem is too wide spread. He wants to wait to see any changes over the next 3-6 months, and it sounds like that's the way it will be until it is decided that something needs to be done. If we can hold off the cath until the cath he gets as part of his pre-Fontan surgery work up, that would be ideal. We'll see. Collateral vessels are common and almost expected in Glenn and Fontan patients, but I was hoping we could hold them off a little longer.
So it's not total devastating news, but it's just not the best news ever. We got to pretend for the last 2 years that things were 'normal'...ish. Trust me, it never leaves my mind what Sam will deal with in his life. Now I can't stop thinking about freakin' collaterals and what they might mean or do. BLAH. I still feel like we are just about the most healthy Tricuspid Atresia/HRHS kid we know...we know plenty of kids with the same diagnosis who have extra diagnoses/conditions/problems on top of that which have caused any number of complications. It makes me bitter to have to add a complication to our list.
Sam and I talked about going to the doctor all the way to the office. He was perfectly happy when we got there, and smiled at everyone. He charmed the nurse into turning on the big screen in the waiting room (we were the first people there today), and played with their 2 foot tall toy clock - probably the highlight of his day. Chris met us there and Sam and Daddy played in the waiting room while I signed a few papers. Another little boy came in. He had clearly just had surgery, based on how stiff he was moving and how his parents were holding him (you can't pick them up under the arms for 6 weeks after surgery). But Sam got the little boy to play and it wasn't long before the boy was looking much more 'loose' and comfortable laughing with Sam. Finally the nurse called us back. At the same moment, the fire alarm went off.
We all evacuated to the parking garage - Sam, the little boy, the nurses, the doctors...everyone. We were all standing in a circle talking about how this was their second alarm in 2 weeks. One of the nurses tried to point out a police car to Sam, and Daddy picked up Sam to help him see. Suddenly, I noticed a little wet spot showing up on Daddy shirt...apparently Sam's diaper got shifted and Sam got so excited about the police car, he peed all over Daddy. We walked to the car for a clothing change (for Sam, not poor Daddy), and Sam walked the whole way like he had something terribly uncomfortable in his pants...the doctors and nurses couldn't help but laugh.
Naturally when we returned to the building after the alarm, Sam was pissed...he thought he had gotten out without having to see the doctor. He cried through his EKG, BP read, and pulse ox read. His pulse ox was 84%. I was a little disappointed, since our most recent home readings were at 90%. Remember, they want him in mid 80s, and dropping lower would mean surgery time. So in my idiot mind, 90 is close enough to mid 80 to still be pretty damn good. Anyway, Sam was a good boy for his Echo. Luckily I had packed foot loops, and he ate them and watched Dora on the tv in the echo room while the lady took 30 minutes worth of photos.
The results were not bad, but not good. Sam has collateral vessels forming from his aortic arch heading towards his lungs (Aortopulmonary Collaterals...APCs). They are forming because our bodies are smart. His body knows he has low blood oxygen levels. So, it thinks it will fix it by building a secondary pathway for blood to get to the lungs to pick up some extra oxygen. Sounds good. But it's not. I mean, if there was no other surgical procedure, then we would be thanking his body for giving it a good try. But what initially starts off as a route to increase blood oxygen levels, eventually leads to blood flooding the lungs. It also increases the work load on the heart, which receives a then increased return of blood from the lungs. For a little heart already working double duty, this can quickly lead to heart failure.
The first signs of collateral vessels are increased blood oxygen levels and increased fatigue with activity. Both of which we have seen. I was so proud of those 90% readings a few weeks ago, but they may be a sign that some collateral vessels have already grown enough to reach the lungs. We had written off his seeming increase in fatigue with activity to the cold weather, frequent cold/ cough illnesses, and just a pure increase in chances to be active. But this may be a sign of the increased work load on his heart. Maybe. We don't know. The only way to know for sure is to do a heart cath.
Currently, the echo can only detect the start of the collaterals. They get to small to tell if they ACTUALLY have already reached his lungs, and they can also come from parts of the Aorta that can't be imaged by echo. Since Sam's EKG, BP, and today's oxygen readings were around his normal, the doctor doesn't think the problem is too wide spread. He wants to wait to see any changes over the next 3-6 months, and it sounds like that's the way it will be until it is decided that something needs to be done. If we can hold off the cath until the cath he gets as part of his pre-Fontan surgery work up, that would be ideal. We'll see. Collateral vessels are common and almost expected in Glenn and Fontan patients, but I was hoping we could hold them off a little longer.
So it's not total devastating news, but it's just not the best news ever. We got to pretend for the last 2 years that things were 'normal'...ish. Trust me, it never leaves my mind what Sam will deal with in his life. Now I can't stop thinking about freakin' collaterals and what they might mean or do. BLAH. I still feel like we are just about the most healthy Tricuspid Atresia/HRHS kid we know...we know plenty of kids with the same diagnosis who have extra diagnoses/conditions/problems on top of that which have caused any number of complications. It makes me bitter to have to add a complication to our list.
I kept Sam home with me today (today is my one day off from work during the week, usually reserved for cleaning the house and errands). I wanted to hold him a little tighter today. We went shopping for new clothes for him, new toys for him, and got a cupcake from a fancy bakery in town for him. He enjoyed it all, and enjoyed bossing Mommy around all day, too. I tried to take a photo of him in his new clothes (and his new hair cut from yesterday), but he wasn't having anything to do with the camera today. You'll have to live off of an older photo (from about a week ago...). I love him.
Saturday, January 29, 2011
Fetal Echo was CLEAR
We had been scheduled for a fetal echo months ago. After you have one child with a severe congenital heart defect, your chances of having another go up. Our doctor (who I love, but is a little ditsy at times) told me to schedule the fetal at about 20-22 weeks. I knew that was early. We didn't have our first echo with Sam until 27 months along. Well turns out you can do them as early as 18 months, but they do prefer to do them a little closer to 27. The echo tech said it didn't really matter to her, she was confident in her skills, but she said she could totally see our doctor telling us the wrong time frame.
The plus to doing it this early was that the echo looked more like a high class ultrasound. Sam was so much bigger at 27 weeks, and I don't remember being able to see him move or see other body parts. But since this baby was so much smaller (we are 21-22 weeks), I could see EVERYTHING. Legs, legs, legs for days. And he was moving the ENTIRE time. He was playing with the cord in his hands, and even kicking it with his feet.
Now, we had our 20 week US last week, and I knew we had a 4 chamber heart. That doesn't rule out all the major defects, but it was already better news that we had with Sam. I went into this echo feeling pretty confident. But within the first 5 minutes I started to sweat. The tech, who had been really chatty, stopped talking. and we didn't say a word to each other...for the next 45 minutes! Oh yeah that's right....on top of not talking, she was taking A MILLION photos. Chris has been out of town, and I was alone. I was thinking I wish he was here to hear the bad news with me, but then again I was glad he wasn't here bc he would be freakin' out. Over that hour long echo, I convinced myself that whatever the news was, we would be ok. I knew it would be bad.
Then, just like that, the echo was over and the tech says "well I think the doctor will be pleased". Oh....OK.... Suddenly relieved, I sat down in a chair in the room and watched as the tech brought in the doctor and started going over the echo photos. My stomach pitted again, as they began to WHISPER about the photos. The tech pointed out a series of photos to him, where she was worried about one of the fetal circulatory holes that exist until birth in the atrial septum. He kind of brushed it off and whispered an explanation to her. Then he turned to me and said that he can rule out all major, life effecting defects with this echo. However, he went on, the echo can't pick up with any accuracy small septal defects. He never said that is what they were discussing, but he said that he feels the baby's heart looks great, and if anything exists, it is too small to need surgical correction. Curious discussion...but having been where we have been with Sam, I do trust him that the baby's heart is healthy and we won't have anything to worry about.
Sam and I have been keeping ourselves busy over the last week. Chris had to go out of town, so we have been hanging out, watchin' Yo Gabba Gabba, going out to eat, and shopping. We bought some new clothes for the baby, and have started setting up Sam's room to be a room for two. Photos to follow when we get a matress on the bed, and when Sam gets his new bed spread (Yo Gabba Gabba, of course).
~Kathy
The plus to doing it this early was that the echo looked more like a high class ultrasound. Sam was so much bigger at 27 weeks, and I don't remember being able to see him move or see other body parts. But since this baby was so much smaller (we are 21-22 weeks), I could see EVERYTHING. Legs, legs, legs for days. And he was moving the ENTIRE time. He was playing with the cord in his hands, and even kicking it with his feet.
Now, we had our 20 week US last week, and I knew we had a 4 chamber heart. That doesn't rule out all the major defects, but it was already better news that we had with Sam. I went into this echo feeling pretty confident. But within the first 5 minutes I started to sweat. The tech, who had been really chatty, stopped talking. and we didn't say a word to each other...for the next 45 minutes! Oh yeah that's right....on top of not talking, she was taking A MILLION photos. Chris has been out of town, and I was alone. I was thinking I wish he was here to hear the bad news with me, but then again I was glad he wasn't here bc he would be freakin' out. Over that hour long echo, I convinced myself that whatever the news was, we would be ok. I knew it would be bad.
Then, just like that, the echo was over and the tech says "well I think the doctor will be pleased". Oh....OK.... Suddenly relieved, I sat down in a chair in the room and watched as the tech brought in the doctor and started going over the echo photos. My stomach pitted again, as they began to WHISPER about the photos. The tech pointed out a series of photos to him, where she was worried about one of the fetal circulatory holes that exist until birth in the atrial septum. He kind of brushed it off and whispered an explanation to her. Then he turned to me and said that he can rule out all major, life effecting defects with this echo. However, he went on, the echo can't pick up with any accuracy small septal defects. He never said that is what they were discussing, but he said that he feels the baby's heart looks great, and if anything exists, it is too small to need surgical correction. Curious discussion...but having been where we have been with Sam, I do trust him that the baby's heart is healthy and we won't have anything to worry about.
Sam and I have been keeping ourselves busy over the last week. Chris had to go out of town, so we have been hanging out, watchin' Yo Gabba Gabba, going out to eat, and shopping. We bought some new clothes for the baby, and have started setting up Sam's room to be a room for two. Photos to follow when we get a matress on the bed, and when Sam gets his new bed spread (Yo Gabba Gabba, of course).
~Kathy
Thursday, January 20, 2011
HEALTHY
We went to our 20 week US this morning with much anticipation and under much stress. The tech was amazing and went straight for the heart. The first thing we got to see was a beautiful, perfectly divided 4 chamber heart. And then got to see that sweet face and the gender...
Baby BOY #2 is perfectly healthy and growing right on track! We couldn't be happier! Thank you everyone who prayed for us!
~Kathy
Baby BOY #2 is perfectly healthy and growing right on track! We couldn't be happier! Thank you everyone who prayed for us!
~Kathy
Wednesday, January 19, 2011
20 Week Ultrasound
So our 20 week ultrasound is tomorrow. I would love to say I can't wait to find out if it's a boy or a girl. But I just don't think that even matters to me. How could it? After all, if there is one good lesson I learned at Sam's 20 week US, it's that the only person going into this US wondering what the sex is is the parents.
The real reason for this US is to check for the babies health. It's to look for defects, abnormalities, and syndromes. It is your first opportunity to find out whether the rest of their life, and yours, will be everything you dreamed and hoped. How dumb it seems now, that for Sam's 20 week US we walked in only wanting to know the sex. That we had planned to go out to eat for a fancy dinner afterwards and talk about names and nursery themes. Our innocence and naivety was shattered. We are no longer ignorant to the fact that babies are not created equal or perfect.
I remember every word of that 20 week US for Sam, and the high risk doctor's US that followed the next day. I remember every word as they fell from those doctors' mouths like bricks, slowly building the wall between what our lives and personalities were, and what they were to become. I don't even remember who I was on that day when everything changed for us; I only know who I am after that day. I had no idea one US could challenge your faith, your relationships, and your dreams for the future.
We are blessed. Beyond measure. And I wouldn't take anything back just so that we wouldn't have to suffer this. But I can't do it again. Not that I have a choice. It's not like I'll drop dead and be released from the responsibility of caring for another special needs child. No matter what is found tomorrow, we will have to accept it. But I don't want to do it again. Maybe for selfish reasons. Who wants the burden of extra doctor visits, questioning your child's every odd symptom as if it's signs of something mortally serious, and facing a future that may not include that child in it? But it's not just us who suffers. Some day Sam will have some harsh realities to face. Much harsher than ours. I just can't bare to see another one of mine go through that.
I have had some whacked up dreams lately. Pregnancy does that. But mix it with stress over baby's health and you get some really crazy results. I haven't said much about the stress of all this to anyone, but it's spilling over. I'm ready to know whatever this US holds for us tomorrow. Say a prayer for health and acceptance.
~Kathy
The real reason for this US is to check for the babies health. It's to look for defects, abnormalities, and syndromes. It is your first opportunity to find out whether the rest of their life, and yours, will be everything you dreamed and hoped. How dumb it seems now, that for Sam's 20 week US we walked in only wanting to know the sex. That we had planned to go out to eat for a fancy dinner afterwards and talk about names and nursery themes. Our innocence and naivety was shattered. We are no longer ignorant to the fact that babies are not created equal or perfect.
I remember every word of that 20 week US for Sam, and the high risk doctor's US that followed the next day. I remember every word as they fell from those doctors' mouths like bricks, slowly building the wall between what our lives and personalities were, and what they were to become. I don't even remember who I was on that day when everything changed for us; I only know who I am after that day. I had no idea one US could challenge your faith, your relationships, and your dreams for the future.
We are blessed. Beyond measure. And I wouldn't take anything back just so that we wouldn't have to suffer this. But I can't do it again. Not that I have a choice. It's not like I'll drop dead and be released from the responsibility of caring for another special needs child. No matter what is found tomorrow, we will have to accept it. But I don't want to do it again. Maybe for selfish reasons. Who wants the burden of extra doctor visits, questioning your child's every odd symptom as if it's signs of something mortally serious, and facing a future that may not include that child in it? But it's not just us who suffers. Some day Sam will have some harsh realities to face. Much harsher than ours. I just can't bare to see another one of mine go through that.
I have had some whacked up dreams lately. Pregnancy does that. But mix it with stress over baby's health and you get some really crazy results. I haven't said much about the stress of all this to anyone, but it's spilling over. I'm ready to know whatever this US holds for us tomorrow. Say a prayer for health and acceptance.
~Kathy
Monday, January 17, 2011
Big Boy Bed
Sam had his first night in a 'big boy bed' last night. We got this car bed used, and Sam LOVES it. He went to bed super easy and stayed in bed all night. He napped in it today without trying to get out, too. We are on night #2, and when I handed him his cup of milk around 7pm tonight he said "night night in car?" He was ready to be rid of the jail bars of the crib! Now if potty training could be just as easy...
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