I'm writing this for no particular reason. Nothing has happened, all is well. It's just something that I often have thought, and figure I'll write out so others can understand.
There are 35 (I think) known CHDs...ranging from simple to complex.
TAPVR is considered a complex CHD. However, if everything goes well, once repaired, TAPVR shouldn't cause any problems later in life. Now, TAPVR does present in several different ways, and can be very, very complex..then it does cause issues later in life.
However, for what I'm talking about is my kids.
Technically, they should be fine from here on out. Yes, Zachy has a pacemaker, but he should be fine.
Most TAPVR kids have the same prognosis.
And yet, I don't know a single TAPVR mom who doesn't worry every time their child goes to the doctor. Or wonder if their lips look blue, or if it's just the lighting. I don't know any TAPVR moms who don't wonder, with every cold, what horrible thing could happen.
Again, technically, we shouldn't have to worry about any of this. But, we are moms, and dads, and we have watched our children fight for their lives, and we will never forget that. And it scars us, as much as it does them...if not more. Always, it is in the back of our mind, no matter how logical that may seem. It's just par for the course, being a TAPVR parent.
However, I feel like it sets us apart in the CHD world. We don't have to deal with multiple open heart surgeries (again if all goes well..TAPVR kids sometimes DO need multiple open heart surgeries), and we don't have to wonder every day, if today will be the last day we have with our child.
I feel like it kind of makes it hard to fit in, in this CHD world.
I have been in actual support groups, where the moms of the HLHSers (a VERY serious defect, where the child is essentially born with half a heart) in a sense feel better than us...like they have it so much harder, so they deserve to be part of the group more. They deserve to have the heart walk teams, because they deal with so much more.
And they do deal with more! And I am SO thankful that we got TAPVR instead of HLHS.
However, it doesn't make our TAPVR road any less real. It doesn't mean we don't deal with feelings that are so real.
We hurt at seeing our babies hurt just as much as they do.
I see it all over the CHD community. I don't understand it.
I love my new support group here, I haven't felt this with them.
The thing is, we are all fighting for the same thing. We are all on the journey together. It shouldn't matter who has it worse off, because really, if you look hard enough you can always find someone worse off than you!
I think doctors often don't realize it either. We are often discharged from the hospital and just sort of left. No one ever reaches out to be sure the parents are ok. No one suggests support groups. No one tells us that it's ok that the feelings never go away.
Anyway, I'm rambling, and I really have no idea why I'm even sharing this. Us TAPVR parents know who we are, we have our own support groups for other TAPVR parents who understand where we are, we are ok.
It's just been on my mind lately.
Tuesday, April 5, 2011
Monday, March 21, 2011
Home Sweet Home?
I've had this entry rolling around in my head the last couple days, but just don't know how to start it.
I love my house. I really do. It just doesn't feel like home, yet.
The people who lived here before us, lived here 34 years. They raised their family here. The neighbors have all been here equally as long, with the exception of one set, who has been here ten years.
We knew that the previous owners may be staying in town, and it felt weird. In the back of my head I pictured them driving by, criticizing everything we may do to the house. Always thinking of it as theirs.
And really, I don't blame them. I feel like my childhood house is my house, still. Even though I haven't lived there in a very long time. So for them to always think of this as their house..I get it. I just don't want to know about it.
We heard from the neighbors that the POs (previous owners) were staying with their son in Texas. Most likely moving there. What a relief.
And then it happened.
The day before Nannie went in the hospital, there was a knock on the door.
I answered it and was greeted by Julie.
Julie is the daughter who grew up here.
She was in the neighborhood and brought the keys by.
Only it was really weird.
She told me all about how her mom didn't want to move, and they never expected the house to close.
She then told me that her parents were now homeless because it all happened so fast.
She confirmed my thoughts when she let me know that she and her parents drive by often.
Now, is it my problem that they are homeless? Homeless meaning they haven't decided where to live, because it is my understanding that they are pretty loaded.
Is it my problem that Mrs. PO didn't want to move?
I mean, really, if you don't want to move, why put your house on the market?
AND, they could have not accepted our offer if they truly didn't want to move. Or if they truly felt like we took them to the cleaners.
It is frustrating to me to know this.
And it doesn't help that I feel like all the neighbors are watching us and reporting back to them. I mean, that's how it would be if we left somewhere after being there for so long. I get it. But like I said, I don't want to know about it.
Then, like a slap in the face, their mail started being delivered here again. Like they only temporarily had it forwarded. I've taken it to the neighbors, who have them come pick it up. Again, so weird.
Last night, I met the girl across the street. She has a two year old daughter. She and her husband moved in recently to care for her grandmother. She never lived here till then, just her grandparents. It's good to have at least one person who I don't feel is watching every move we make.
And it's all nonsense...people have been so nice to us. I just feel like we are house sitting, with our furniture, trying to fit in where we don't belong.
How long do you think this will last??
I love my house. I really do. It just doesn't feel like home, yet.
The people who lived here before us, lived here 34 years. They raised their family here. The neighbors have all been here equally as long, with the exception of one set, who has been here ten years.
We knew that the previous owners may be staying in town, and it felt weird. In the back of my head I pictured them driving by, criticizing everything we may do to the house. Always thinking of it as theirs.
And really, I don't blame them. I feel like my childhood house is my house, still. Even though I haven't lived there in a very long time. So for them to always think of this as their house..I get it. I just don't want to know about it.
We heard from the neighbors that the POs (previous owners) were staying with their son in Texas. Most likely moving there. What a relief.
And then it happened.
The day before Nannie went in the hospital, there was a knock on the door.
I answered it and was greeted by Julie.
Julie is the daughter who grew up here.
She was in the neighborhood and brought the keys by.
Only it was really weird.
She told me all about how her mom didn't want to move, and they never expected the house to close.
She then told me that her parents were now homeless because it all happened so fast.
She confirmed my thoughts when she let me know that she and her parents drive by often.
Now, is it my problem that they are homeless? Homeless meaning they haven't decided where to live, because it is my understanding that they are pretty loaded.
Is it my problem that Mrs. PO didn't want to move?
I mean, really, if you don't want to move, why put your house on the market?
AND, they could have not accepted our offer if they truly didn't want to move. Or if they truly felt like we took them to the cleaners.
It is frustrating to me to know this.
And it doesn't help that I feel like all the neighbors are watching us and reporting back to them. I mean, that's how it would be if we left somewhere after being there for so long. I get it. But like I said, I don't want to know about it.
Then, like a slap in the face, their mail started being delivered here again. Like they only temporarily had it forwarded. I've taken it to the neighbors, who have them come pick it up. Again, so weird.
Last night, I met the girl across the street. She has a two year old daughter. She and her husband moved in recently to care for her grandmother. She never lived here till then, just her grandparents. It's good to have at least one person who I don't feel is watching every move we make.
And it's all nonsense...people have been so nice to us. I just feel like we are house sitting, with our furniture, trying to fit in where we don't belong.
How long do you think this will last??
Friday, March 18, 2011
Random
Just a few thoughts that are too long for status updates on Facebook.
~Collin, about Nannie, "We are so lucky we got that kind of baby. She is so funny." Apparently, there are different kinds of babies, and we got the funny kind. YAY!!
~Speaking of babies...today at the vet, a tech commented on the fact that Nannie is so small. She has a 16 month old who she says is huge. It's true though, Nannie is small. She weighs just 19 pounds. Most of my kids have hit 20 pounds long before a year old. Nannie is 14 months. At her last appointment, they were concerned about her weighing 19 pounds, because her growth curve has changed so much. She gained a pound or two, and now after her time in the hospital, she is 19 pounds again. She's just little, and oh so cute!
~This illness is making it's rounds. The last day Nan was in the hospital, I got really congested and felt awful. I'm down to just a runny nose. Two days ago, Matt had the same thing. A day of horrible congestion, oh and a fever. Today, it's gripped Dillon. I hope it's just one bad day for him too.
~This stinks because they wanted us at church tomorrow to do our second reading and vote us in. Our new church has been amazing. They brought all sorts of food to Matt and the kids. Two days, I had elders come sit and visit with me at the hospital. Collin and Zachy's teacher also came to visit. It would have been so lonely if they hadn't come.
~I do have a new friend. Well, I may have mentioned her before, but she is the teacher I just mentioned. She's great,and has kept me sane here. Her kids are Collin and Zachy's best friends, so it's been a blessing.
~Pathfinders here isn't going so well, and it makes me sad. Matthew hates going. And it stinks because there is just one local club so we can't even try a different club. Adventurers is kind of the same. And they are sooo organized...Adventurers and Pathfinders are having their investitures on the same night, at the same time...at two different churches. So yeah, how will we split ourselves up? And seriously, are we the only ones with this issue?? It's just really frustrating, but I'm trying not to complain.
~I really want to love it here. I'm hoping that as it warms up, I will. I'm just so over the cold weather. It's nice today, but still overcast. I need some sun to help my mood. I am missing Texas so much right now, but like I said, really wanting to love it here.
~I was so pleased that it warmed up...I had bought clothesline and was looking forward to hanging the diapers out today. Then I realized I didn't buy clothespins!! Whoops!!!
~The kids are dying to go for a walk, it will be short because of Dillon, but I guess we will go. We all need the exercise and fresh air.
~Oh...last thing,check out this article from USA Today, pretty awesome
~Collin, about Nannie, "We are so lucky we got that kind of baby. She is so funny." Apparently, there are different kinds of babies, and we got the funny kind. YAY!!
~Speaking of babies...today at the vet, a tech commented on the fact that Nannie is so small. She has a 16 month old who she says is huge. It's true though, Nannie is small. She weighs just 19 pounds. Most of my kids have hit 20 pounds long before a year old. Nannie is 14 months. At her last appointment, they were concerned about her weighing 19 pounds, because her growth curve has changed so much. She gained a pound or two, and now after her time in the hospital, she is 19 pounds again. She's just little, and oh so cute!
~This illness is making it's rounds. The last day Nan was in the hospital, I got really congested and felt awful. I'm down to just a runny nose. Two days ago, Matt had the same thing. A day of horrible congestion, oh and a fever. Today, it's gripped Dillon. I hope it's just one bad day for him too.
~This stinks because they wanted us at church tomorrow to do our second reading and vote us in. Our new church has been amazing. They brought all sorts of food to Matt and the kids. Two days, I had elders come sit and visit with me at the hospital. Collin and Zachy's teacher also came to visit. It would have been so lonely if they hadn't come.
~I do have a new friend. Well, I may have mentioned her before, but she is the teacher I just mentioned. She's great,and has kept me sane here. Her kids are Collin and Zachy's best friends, so it's been a blessing.
~Pathfinders here isn't going so well, and it makes me sad. Matthew hates going. And it stinks because there is just one local club so we can't even try a different club. Adventurers is kind of the same. And they are sooo organized...Adventurers and Pathfinders are having their investitures on the same night, at the same time...at two different churches. So yeah, how will we split ourselves up? And seriously, are we the only ones with this issue?? It's just really frustrating, but I'm trying not to complain.
~I really want to love it here. I'm hoping that as it warms up, I will. I'm just so over the cold weather. It's nice today, but still overcast. I need some sun to help my mood. I am missing Texas so much right now, but like I said, really wanting to love it here.
~I was so pleased that it warmed up...I had bought clothesline and was looking forward to hanging the diapers out today. Then I realized I didn't buy clothespins!! Whoops!!!
~The kids are dying to go for a walk, it will be short because of Dillon, but I guess we will go. We all need the exercise and fresh air.
~Oh...last thing,check out this article from USA Today, pretty awesome
Tuesday, March 15, 2011
Update
Yesterday, Natalie got to come home from the hospital.
What I learned through this illness is how quickly kids go downhill, and also how quickly they get better.
One day she was on oxygen, the next, going home.
I am so, so grateful to have my little girl. Things were so scary. I'm glad to be done with that, and never ever want to experience something like that again.
I am certain that RSV is the devil. Seriously. To see all the itty bitty babies on vents because of this awful illness was just heartbreaking.
But...we are home now. Ready to put it all behind us and move on.
I am so thankful to all the people who brought meals to my family, who offered to watch the kids, and most importantly, I am thankful to everyone who prayed without ceasing. God is good...all the time.
It's time to get back to living. we lost a week there, and it is hard to get back into the swing of things. Today is just a kick back and relax kind of day, even though there is much to be done. The work will always be there.
What I learned through this illness is how quickly kids go downhill, and also how quickly they get better.
One day she was on oxygen, the next, going home.
I am so, so grateful to have my little girl. Things were so scary. I'm glad to be done with that, and never ever want to experience something like that again.
I am certain that RSV is the devil. Seriously. To see all the itty bitty babies on vents because of this awful illness was just heartbreaking.
But...we are home now. Ready to put it all behind us and move on.
I am so thankful to all the people who brought meals to my family, who offered to watch the kids, and most importantly, I am thankful to everyone who prayed without ceasing. God is good...all the time.
It's time to get back to living. we lost a week there, and it is hard to get back into the swing of things. Today is just a kick back and relax kind of day, even though there is much to be done. The work will always be there.
Saturday, March 12, 2011
Stop the Ride, I Want to Get Off!
I sit here updating my little blog from a room in the PICU. We have been living here since last Saturday. One week in this little room. It's been quite the ride, and if you don't mind, I'd like to get off now.
Last Wednesday, Natalie had a bit of a cold. A little cough here and there, but nothing remarkable. I think on Thursday, I commented on Facebook that her breathing was off, but nothing too exciting, just fast breathing.
By Friday, I was calling the doctor, certain I would take her in and have them tell me it was a virus that had to run it's course. These things always happen on the weekend, so if something bad was going to happen, I needed to get into the doctor on Friday.
We went and the doctor was concerned about her mild retractions. She swabbed her for flu and RSV. The rapid test on both of those came back negative, but she had to send them off to grow more. She wasn't comfortable sending her home though, because of the retractions, and oh yes, the fever she now had. She wanted Nannie to go to the children's hospital for observation.
When we got there we were to check in through the emergency department. They didn't have a room for her, so we sat downstairs for two hours, waiting. During this time, Nan was up and down, acting pretty normal. The thought did go through my head that this was all ridiculous and total overkill.
We finally got into a room to wait through the night. Tylenol was given. Her retractions got worse and her O2 sats started to drop. I don't remember when, but at some point in the night, they started her on O2. They tried doing a breathing treatment, but that didn't help at all. In the middle of the night the resident called for another treatment, which also didn't help. We took her downstairs for a chest x-ray which revealed what they had suspected, bronchiolitis.
Through the night things worsened. At some point Saturday, they wanted another x-ray, only this time she wasn't well enough to go downstairs, they had to come to her. She went downhill that quick.
We were on an observation floor and the nurse was trying to get us into a room elsewhere because she needed more care. The residents were all dumb and no one wanted to take her. Our nurse felt she needed the PICU but they refused to take her. She was going downhill so rapidly that the nurse informed me of the response team they had there. She wanted me to know that she was right on the cusp of crashing, not a code blue, but she was certain she would be calling them to intubate her. She said you can only breathe so fast for so long before your body quits. Finally, they moved us to another room, on a regular pediatric floor.
Things continued to deteriorate. I was the only one who could see the monitors unless a nurse was physically in the room with us. We stayed on that floor for a matter of hours before they deemed her bad enough to go to the PICU. So, since Saturday, we've been here.
At first they didn't know what was wrong, but the slow test for RSV came back positive. It is a virus that just has to run it's course. By Sunday morning, her chest x-ray showed pneumonia as well.
They told me the peak of the illness was about 3-4 days. However, day after day, we saw no improvement.
She has been on high flow O2 since last Saturday night. Throughout the week they've tried to wean her, to no avail, and have in fact had to go up on the flow several times. Currently, she's on 3 liters at 50% flow.
She has developed horrible diarrhea. She did have an ND tube in, but it kept coming out so because of the dehydration from the diarrhea, she is back on IV fluids.
Yesterday, they tried to sedate her for an echo. They wanted to look at her heart just to see if anything was going on there to explain why this is taking so long. Let me tell you, she doesn't sedate well. They gave her full doses of three meds and she fought all of them. Finally, they gave up. She was soooo crabby yesterday, it was awful. It was like she would go to sleep, but her little body couldn't relax. Finally, they decided to sedate her using something that the doctor had to be present to administer. Even with that, when they pulled a sticker off her she woke up.
She has had a horrible week. Everything they do to her is so awful. They deep suction her by sending a tube up her nose down her throat and just sucking it all out. She has been on compression vest therapy where they just shake the daylights out of her to loosen the junk in her lungs. It's just been awful. She is so afraid when someone new enters the room, and it just breaks my heart.
As of yesterday, we seem to be making progress in the right direction. She went from 60% flow to 50% flow and it's just kind of a waiting game now.
When they rounded they said, "she's making progress, just slower than we'd expect, but at least she isn't backsliding".
At this point, I have no idea how much longer we'll be in the hospital. She has to be off the high flow to get out of the PICU. From there she'll spend some time on the regular pediatric floor, before being discharged.
Through all of this, I am so thankful that Matt is able to take time off to be home with the kids so I can stay with Nannie. I haven't left since Friday, but that's OK. I can't bear the thought of locking her up in the crib just so I can leave. I mean it's not like the nurses can stay with her and hold her. If she were sedated, that would be one thing, but since she's awake, nope...can't do it.
Anyway, that's where we are. Playing the waiting game. It's been a stressful ride, and I'd like to get off now!
Friday night, still in observation...I thought she looked so sick here..little did I know what was in store!
Getting sicker, I'm not sure what night this was..but she was one sick little girl.
Shaking her. This picture breaks my heart because her eyes are pleading with us to help her. I've seen that look too many times this week.
Cute dinosaur masks to nothing for 14 month olds!
This was last night....she hadn't slept all day, nor most of the night before. She's making up for it now though.
OH!!! And I forgot to mention...on Sunday, Emily and Zachy got fevers and started breathing poorly. Nan's nurse said Matt needed to take them to the ER. Thankfully, they were sent home on tylenol and fluids and are doing much better!
Last Wednesday, Natalie had a bit of a cold. A little cough here and there, but nothing remarkable. I think on Thursday, I commented on Facebook that her breathing was off, but nothing too exciting, just fast breathing.
By Friday, I was calling the doctor, certain I would take her in and have them tell me it was a virus that had to run it's course. These things always happen on the weekend, so if something bad was going to happen, I needed to get into the doctor on Friday.
We went and the doctor was concerned about her mild retractions. She swabbed her for flu and RSV. The rapid test on both of those came back negative, but she had to send them off to grow more. She wasn't comfortable sending her home though, because of the retractions, and oh yes, the fever she now had. She wanted Nannie to go to the children's hospital for observation.
When we got there we were to check in through the emergency department. They didn't have a room for her, so we sat downstairs for two hours, waiting. During this time, Nan was up and down, acting pretty normal. The thought did go through my head that this was all ridiculous and total overkill.
We finally got into a room to wait through the night. Tylenol was given. Her retractions got worse and her O2 sats started to drop. I don't remember when, but at some point in the night, they started her on O2. They tried doing a breathing treatment, but that didn't help at all. In the middle of the night the resident called for another treatment, which also didn't help. We took her downstairs for a chest x-ray which revealed what they had suspected, bronchiolitis.
Through the night things worsened. At some point Saturday, they wanted another x-ray, only this time she wasn't well enough to go downstairs, they had to come to her. She went downhill that quick.
We were on an observation floor and the nurse was trying to get us into a room elsewhere because she needed more care. The residents were all dumb and no one wanted to take her. Our nurse felt she needed the PICU but they refused to take her. She was going downhill so rapidly that the nurse informed me of the response team they had there. She wanted me to know that she was right on the cusp of crashing, not a code blue, but she was certain she would be calling them to intubate her. She said you can only breathe so fast for so long before your body quits. Finally, they moved us to another room, on a regular pediatric floor.
Things continued to deteriorate. I was the only one who could see the monitors unless a nurse was physically in the room with us. We stayed on that floor for a matter of hours before they deemed her bad enough to go to the PICU. So, since Saturday, we've been here.
At first they didn't know what was wrong, but the slow test for RSV came back positive. It is a virus that just has to run it's course. By Sunday morning, her chest x-ray showed pneumonia as well.
They told me the peak of the illness was about 3-4 days. However, day after day, we saw no improvement.
She has been on high flow O2 since last Saturday night. Throughout the week they've tried to wean her, to no avail, and have in fact had to go up on the flow several times. Currently, she's on 3 liters at 50% flow.
She has developed horrible diarrhea. She did have an ND tube in, but it kept coming out so because of the dehydration from the diarrhea, she is back on IV fluids.
Yesterday, they tried to sedate her for an echo. They wanted to look at her heart just to see if anything was going on there to explain why this is taking so long. Let me tell you, she doesn't sedate well. They gave her full doses of three meds and she fought all of them. Finally, they gave up. She was soooo crabby yesterday, it was awful. It was like she would go to sleep, but her little body couldn't relax. Finally, they decided to sedate her using something that the doctor had to be present to administer. Even with that, when they pulled a sticker off her she woke up.
She has had a horrible week. Everything they do to her is so awful. They deep suction her by sending a tube up her nose down her throat and just sucking it all out. She has been on compression vest therapy where they just shake the daylights out of her to loosen the junk in her lungs. It's just been awful. She is so afraid when someone new enters the room, and it just breaks my heart.
As of yesterday, we seem to be making progress in the right direction. She went from 60% flow to 50% flow and it's just kind of a waiting game now.
When they rounded they said, "she's making progress, just slower than we'd expect, but at least she isn't backsliding".
At this point, I have no idea how much longer we'll be in the hospital. She has to be off the high flow to get out of the PICU. From there she'll spend some time on the regular pediatric floor, before being discharged.
Through all of this, I am so thankful that Matt is able to take time off to be home with the kids so I can stay with Nannie. I haven't left since Friday, but that's OK. I can't bear the thought of locking her up in the crib just so I can leave. I mean it's not like the nurses can stay with her and hold her. If she were sedated, that would be one thing, but since she's awake, nope...can't do it.
Anyway, that's where we are. Playing the waiting game. It's been a stressful ride, and I'd like to get off now!
Friday night, still in observation...I thought she looked so sick here..little did I know what was in store!
Getting sicker, I'm not sure what night this was..but she was one sick little girl.
Shaking her. This picture breaks my heart because her eyes are pleading with us to help her. I've seen that look too many times this week.
Cute dinosaur masks to nothing for 14 month olds!
This was last night....she hadn't slept all day, nor most of the night before. She's making up for it now though.
OH!!! And I forgot to mention...on Sunday, Emily and Zachy got fevers and started breathing poorly. Nan's nurse said Matt needed to take them to the ER. Thankfully, they were sent home on tylenol and fluids and are doing much better!
Tuesday, March 1, 2011
Our Decision
I've been asked about our decision to have another baby after having a heart baby.
I figured I'd write about it here.
I am aware that our decision is not the popular one, but that's ok.
To understand our decision, you sort of have to know some details.
After we had Zachy, we had no idea what we were going to do. We had always wanted lots of kids and hadn't made a decision about whether or not we would have more. We kind of assumed we would but had never said yes or no, for sure.
After awhile, I had my usual baby fever. I couldn't imagine not having another baby. Matt was pretty scared about ever having a heart baby again, but I was pretty confident that we wouldn't have to worry about that. After all, the chances of having another heart baby only raises to 3% after having one heart baby.
We finally had decided to just let go and let God.
Shortly after that, we were surprised to find out we were pregnant with Emily.
I won't lie, that pregnancy with her was super stressful.
Because of Zachy, I was given monthly level II ultrasounds and a few fetal echoes. I chose my doctor based on where she delivered. Everything I did was centered around having another heart baby.
Thankfully, it was all for nothing. Emily was born perfectly healthy. We were so thrilled and were reassured that the TAPVR that affected Zachy truly was just a fluke occurrence.
After that we were open to however many kids God wished to bless us with.
When Emily was 2, we learned we were pregnant again. I now had the doctor and my pregnancy went along like Emily's. Including the level II ultra sounds and fetal echoes.
We were in such shock when we learned she also had TAPVR. My pregnancy was pretty stress free because we didn't know, and we assumed it wouldn't happen again. I'm grateful for that.
We have now been told our chances of another CHD baby are pretty high. What to do.
We have talked and talked and prayed and prayed about this. The only decision that brings us peace is to continue to allow God to bless us with however many children he chooses.
I know so many people think we are crazy. And that's OK. When you are in constant turmoil over what to do, and when you both agree that the only decision that brings peace is to go on, you have to go with it.
Are we nervous that we will, at some point, have another heart baby? Absolutely. It terrifies me. However, missing out on a blessing terrifies me more.
We have been blessed in the fact that our children are OK and alive. We know how easily this could not be the case. And how it could turn out bad for future children. We have faith, however, that whatever happens, God is in control. He chooses when we live and die. His plans are certainly not always ours, but we have to have faith that they are best. Someday, all our questions will be answered.
Again, I realize that our choice is not the popular one. In fact, there are very few people I can think of who would choose to have more after what we've been through. It's OK though, because we are confident in our choice.
We won't ever consciously try for another baby, but we won't do anything, other than nursing, to prevent a pregnancy.
I hope this answers some questions people may have. I know that I always wanted to hear other's opinions when we were in the midst of choosing what to do. :)
I figured I'd write about it here.
I am aware that our decision is not the popular one, but that's ok.
To understand our decision, you sort of have to know some details.
After we had Zachy, we had no idea what we were going to do. We had always wanted lots of kids and hadn't made a decision about whether or not we would have more. We kind of assumed we would but had never said yes or no, for sure.
After awhile, I had my usual baby fever. I couldn't imagine not having another baby. Matt was pretty scared about ever having a heart baby again, but I was pretty confident that we wouldn't have to worry about that. After all, the chances of having another heart baby only raises to 3% after having one heart baby.
We finally had decided to just let go and let God.
Shortly after that, we were surprised to find out we were pregnant with Emily.
I won't lie, that pregnancy with her was super stressful.
Because of Zachy, I was given monthly level II ultrasounds and a few fetal echoes. I chose my doctor based on where she delivered. Everything I did was centered around having another heart baby.
Thankfully, it was all for nothing. Emily was born perfectly healthy. We were so thrilled and were reassured that the TAPVR that affected Zachy truly was just a fluke occurrence.
After that we were open to however many kids God wished to bless us with.
When Emily was 2, we learned we were pregnant again. I now had the doctor and my pregnancy went along like Emily's. Including the level II ultra sounds and fetal echoes.
We were in such shock when we learned she also had TAPVR. My pregnancy was pretty stress free because we didn't know, and we assumed it wouldn't happen again. I'm grateful for that.
We have now been told our chances of another CHD baby are pretty high. What to do.
We have talked and talked and prayed and prayed about this. The only decision that brings us peace is to continue to allow God to bless us with however many children he chooses.
I know so many people think we are crazy. And that's OK. When you are in constant turmoil over what to do, and when you both agree that the only decision that brings peace is to go on, you have to go with it.
Are we nervous that we will, at some point, have another heart baby? Absolutely. It terrifies me. However, missing out on a blessing terrifies me more.
We have been blessed in the fact that our children are OK and alive. We know how easily this could not be the case. And how it could turn out bad for future children. We have faith, however, that whatever happens, God is in control. He chooses when we live and die. His plans are certainly not always ours, but we have to have faith that they are best. Someday, all our questions will be answered.
Again, I realize that our choice is not the popular one. In fact, there are very few people I can think of who would choose to have more after what we've been through. It's OK though, because we are confident in our choice.
We won't ever consciously try for another baby, but we won't do anything, other than nursing, to prevent a pregnancy.
I hope this answers some questions people may have. I know that I always wanted to hear other's opinions when we were in the midst of choosing what to do. :)
Wednesday, February 16, 2011
Spilling it
Lately, I'm really struggling with myself.
I am so unhappy with my body. I have been my entire life. I feel like a broken record, I know you have heard this all before.
My weight affects almost every part of my life. I hate meeting new people, because in my head, I am thinking that they are thinking what a fatty I am. I especially hate meeting new people with Matt, then I'm really certain that they are looking at us wondering what he is doing with me.
The one place it doesn't affect me is with Matt. I know, without a doubt, that he loves me, no matter what I weigh.
My kids like to tell me what a jiggly belly I have. It's awful.
You would think that this would be enough to do something. I started weight watchers last week, I did really well. Then this week came and I totally fell off the wagon, and I gained everything back. Which tells me that I lost water weight, but still.
I feel like such a huge failure. I hate that this consumes me, and yet I don't have enough will power to change this.
I sabotage myself. I tell myself that I need to lose weight, and I think that for a long time. Then I tell myself that I really just need to be happy with myself.
*sigh* I don't know..I just feel like a huge failure.
I am so unhappy with my body. I have been my entire life. I feel like a broken record, I know you have heard this all before.
My weight affects almost every part of my life. I hate meeting new people, because in my head, I am thinking that they are thinking what a fatty I am. I especially hate meeting new people with Matt, then I'm really certain that they are looking at us wondering what he is doing with me.
The one place it doesn't affect me is with Matt. I know, without a doubt, that he loves me, no matter what I weigh.
My kids like to tell me what a jiggly belly I have. It's awful.
You would think that this would be enough to do something. I started weight watchers last week, I did really well. Then this week came and I totally fell off the wagon, and I gained everything back. Which tells me that I lost water weight, but still.
I feel like such a huge failure. I hate that this consumes me, and yet I don't have enough will power to change this.
I sabotage myself. I tell myself that I need to lose weight, and I think that for a long time. Then I tell myself that I really just need to be happy with myself.
*sigh* I don't know..I just feel like a huge failure.
Monday, February 7, 2011
Hodge Podge
Life is back to normal! Everyone is well and we have resumed life as we know it.
Last Friday, we had a great time! We went with the homeschool drama group up to Greeneville to a museum that has loads of Annie Oakley artifacts. We learned lots about Annie and Frank Butler. The kids really enjoyed the rest of the museum as well. Our group was too big, and I think that someday we may go back with just our family so we can take our time and soak it all up. It really helped bring the play to life though.
This week, we have something happening almost every night. How quickly that happens.
Tonight we went to the Y where I did water aerobics, and everyone else swam. It was the first time Zachy has been able to swim since surgery!
~~~
I just started typing out our whole schedule for you, and then realized you really don't care! LOL
~~~~
OH!!! This is CHD awareness week! I've been a busy little bee spreading awareness where I can.
I have been busy trying to get "likes" on my Go, Baby, Go! page in an effort to reach more people. I'm currently having a contest to give away 3 bags of Rockin Green. Also, if I hit 200 likes by Wednesday at midnight, I'm going to draw from the fans to giveaway a knickernappies diaper. I also donated a mobywrap to an auction whose proceeds go to CHD awareness. You can click on that Go, Baby, Go! button on the side to like my page for details! I'd appreciate it!
What is Go, Baby, Go! you ask? We carry cloth diapers, baby carriers, teething jewelry, and baby skincare. We also offer local people the opportunity to actually see the dipes and try them on your baby. We offer cloth diapering and baby wearing classes, AND we offer a newborn rental package, which I think is just great!
If any of these things interest you, please go like me!!
~~~~
Somehow this got totally rambly...I'm tired..I need to go to bed. Hopefully, next time I'll have something intelligent to say!! HA!
Last Friday, we had a great time! We went with the homeschool drama group up to Greeneville to a museum that has loads of Annie Oakley artifacts. We learned lots about Annie and Frank Butler. The kids really enjoyed the rest of the museum as well. Our group was too big, and I think that someday we may go back with just our family so we can take our time and soak it all up. It really helped bring the play to life though.
This week, we have something happening almost every night. How quickly that happens.
Tonight we went to the Y where I did water aerobics, and everyone else swam. It was the first time Zachy has been able to swim since surgery!
~~~
I just started typing out our whole schedule for you, and then realized you really don't care! LOL
~~~~
OH!!! This is CHD awareness week! I've been a busy little bee spreading awareness where I can.
I have been busy trying to get "likes" on my Go, Baby, Go! page in an effort to reach more people. I'm currently having a contest to give away 3 bags of Rockin Green. Also, if I hit 200 likes by Wednesday at midnight, I'm going to draw from the fans to giveaway a knickernappies diaper. I also donated a mobywrap to an auction whose proceeds go to CHD awareness. You can click on that Go, Baby, Go! button on the side to like my page for details! I'd appreciate it!
What is Go, Baby, Go! you ask? We carry cloth diapers, baby carriers, teething jewelry, and baby skincare. We also offer local people the opportunity to actually see the dipes and try them on your baby. We offer cloth diapering and baby wearing classes, AND we offer a newborn rental package, which I think is just great!
If any of these things interest you, please go like me!!
~~~~
Somehow this got totally rambly...I'm tired..I need to go to bed. Hopefully, next time I'll have something intelligent to say!! HA!
Saturday, January 29, 2011
What a Nightmare!
Oh my goodness...what a horrible week this has been.
It started on Monday, with Zachy's surgery. They had a hard time because the lead wire giving them trouble was somehow wrapped around a muscle. Instead of the hour and a half they were expecting, he was in three and a half hours. There was lots of muscle manipulation, which caused him so much more pain than they first thought.
The first night, they thought he was doing pretty good, but then he started vomiting. He was unable to keep anything down. Finally, by mid morning that had passed and they discharged him.
He was pretty miserable all Tuesday.
Wednesday morning we woke up to Matthew feeling very poorly. Through the day, Dillon started feeling poorly as well.
I talked to Matt and he said he too, was feeling bad.
By the time it was time for Matt to come home he was feeling so bad that he almost called me to come pick him up. He made it home, but immediately crashed on the bed.
Thursday came and Matt stayed home from work, feeling horrible.
By this time everyone but Natalie and me, was feeling the crud. What sounded like a simple cold, was wiping my family out. They had coughs and headaches and lots of sinus congestion. Fevers as well.
Friday, Matt went to work, only to come home a couple hours later. I started to worry about him because he was in bad shape, and didn't seem to be getting any better.
It's strange, because writing this out, I realize it was a relatively short amount of time, but it all felt like an eternity.
Last night, people's appetites started coming back, so we had breakfast for dinner.
At bed time, Nannie started throwing up. This was different from what everyone else was suffering. She continued to throw up all night long. She would throw up and then want to nurse for comfort. She doesn't realize that nursing would make her throw up more. So all night the cycle continued.
This morning, Matt was feeling a lot better. The kids are all doing better as well.
Natalie went all day without vomiting, but has now started again. We shall see what the night brings.
Somehow, I have managed to not get ill. I'm worried that it is going to hit me soon, but so far, so good.
It has been a horrible, horrible week, and I am SO glad it's over.
Zachy isn't in too much pain at this point either. Thank goodness!
It started on Monday, with Zachy's surgery. They had a hard time because the lead wire giving them trouble was somehow wrapped around a muscle. Instead of the hour and a half they were expecting, he was in three and a half hours. There was lots of muscle manipulation, which caused him so much more pain than they first thought.
The first night, they thought he was doing pretty good, but then he started vomiting. He was unable to keep anything down. Finally, by mid morning that had passed and they discharged him.
He was pretty miserable all Tuesday.
Wednesday morning we woke up to Matthew feeling very poorly. Through the day, Dillon started feeling poorly as well.
I talked to Matt and he said he too, was feeling bad.
By the time it was time for Matt to come home he was feeling so bad that he almost called me to come pick him up. He made it home, but immediately crashed on the bed.
Thursday came and Matt stayed home from work, feeling horrible.
By this time everyone but Natalie and me, was feeling the crud. What sounded like a simple cold, was wiping my family out. They had coughs and headaches and lots of sinus congestion. Fevers as well.
Friday, Matt went to work, only to come home a couple hours later. I started to worry about him because he was in bad shape, and didn't seem to be getting any better.
It's strange, because writing this out, I realize it was a relatively short amount of time, but it all felt like an eternity.
Last night, people's appetites started coming back, so we had breakfast for dinner.
At bed time, Nannie started throwing up. This was different from what everyone else was suffering. She continued to throw up all night long. She would throw up and then want to nurse for comfort. She doesn't realize that nursing would make her throw up more. So all night the cycle continued.
This morning, Matt was feeling a lot better. The kids are all doing better as well.
Natalie went all day without vomiting, but has now started again. We shall see what the night brings.
Somehow, I have managed to not get ill. I'm worried that it is going to hit me soon, but so far, so good.
It has been a horrible, horrible week, and I am SO glad it's over.
Zachy isn't in too much pain at this point either. Thank goodness!
Friday, January 21, 2011
Monday, Monday
No..it's actually Friday...but this Monday is the one I'm referring to.
If y'all could say a prayer for my Zachy, he'll be having surgery.
He has a lead wire that is threatening to break through his skin. If this happens then they would have to remove everything.
To avoid this, they are going to open up the pocket where the pacemaker is and revise that wire. At the same time, they will replace his pacemaker with a new one. One that is better than the one he has in now..and one that has a new battery! His battery currently has about 5 years left on it, but this will boost us back to seven to ten years. Then, if nothing else happens, he won't need another surgery until then.
He will stay overnight in the hospital. We got a hotel room there and will be staying nearby. The hard part will be the fact that no one under 14 is allowed upstairs, so we will have to split ourselves up. We will get through this though, we always do.
In other news, we are settling into our new house nicely. I love it. It is starting to feel like home. Currently, we are painting Emily and Natalie's room pink. Oh my is it pink. And Emmie LOVES it. I can't wait for it to be done so she can move back in to her room. Then we will work on the other bedrooms. After that, who knows what we'll paint.
We are close to being all unpacked, and I just wish we could finish it up and be done. I just keep putting it off though. Tsk Tsk!! I'll get there though.
The kids are enjoying the snow and sledding down our hill. Course they didn't have a sled so they were using the recycling bin! The neighbors felt bad for them and gave them one of theirs. Our neighbors are great, so kind.
This entry is totally all over the place, but I just wanted to jot some things down, but mainly ask for prayer for Zachy.
I'll keep you posted next week!
If y'all could say a prayer for my Zachy, he'll be having surgery.
He has a lead wire that is threatening to break through his skin. If this happens then they would have to remove everything.
To avoid this, they are going to open up the pocket where the pacemaker is and revise that wire. At the same time, they will replace his pacemaker with a new one. One that is better than the one he has in now..and one that has a new battery! His battery currently has about 5 years left on it, but this will boost us back to seven to ten years. Then, if nothing else happens, he won't need another surgery until then.
He will stay overnight in the hospital. We got a hotel room there and will be staying nearby. The hard part will be the fact that no one under 14 is allowed upstairs, so we will have to split ourselves up. We will get through this though, we always do.
In other news, we are settling into our new house nicely. I love it. It is starting to feel like home. Currently, we are painting Emily and Natalie's room pink. Oh my is it pink. And Emmie LOVES it. I can't wait for it to be done so she can move back in to her room. Then we will work on the other bedrooms. After that, who knows what we'll paint.
We are close to being all unpacked, and I just wish we could finish it up and be done. I just keep putting it off though. Tsk Tsk!! I'll get there though.
The kids are enjoying the snow and sledding down our hill. Course they didn't have a sled so they were using the recycling bin! The neighbors felt bad for them and gave them one of theirs. Our neighbors are great, so kind.
This entry is totally all over the place, but I just wanted to jot some things down, but mainly ask for prayer for Zachy.
I'll keep you posted next week!
Thursday, January 6, 2011
Buried
I am buried under so much to do.
Posting here isn't a high priority, though I did want to post yesterday.
Yesterday was Miss Nannie's first birthday! I can't believe she is a year! We are so thankful she is still with us. She is amazing, and wonderful, and all things good.
I didn't get to post though, because we moved into our house on Thursday.
We love, love, love it, but there is so much to do. Of course, this begins with unpacking. It is amazing how much stuff eight people can accumulate. I am getting pretty toss happy at this point.
The house is in absolute shambles right now. There is stuff everywhere. I have unpacked, and unpacked, and unpacked. I am almost done with everything upstairs. Downstairs is mainly just books. The bookshelves need to be hooked to the walls, but the battery to Matt's drill is dead, and he doesn't know where the charger is. It's all very frustrating!
I can't wait to be all settled and back to just living. I'd love to be done for the most part by Monday, because we need to get back to school.
Anyhow, posting will be scarce until I get all settled.
Posting here isn't a high priority, though I did want to post yesterday.
Yesterday was Miss Nannie's first birthday! I can't believe she is a year! We are so thankful she is still with us. She is amazing, and wonderful, and all things good.
I didn't get to post though, because we moved into our house on Thursday.
We love, love, love it, but there is so much to do. Of course, this begins with unpacking. It is amazing how much stuff eight people can accumulate. I am getting pretty toss happy at this point.
The house is in absolute shambles right now. There is stuff everywhere. I have unpacked, and unpacked, and unpacked. I am almost done with everything upstairs. Downstairs is mainly just books. The bookshelves need to be hooked to the walls, but the battery to Matt's drill is dead, and he doesn't know where the charger is. It's all very frustrating!
I can't wait to be all settled and back to just living. I'd love to be done for the most part by Monday, because we need to get back to school.
Anyhow, posting will be scarce until I get all settled.
Saturday, December 25, 2010
Merry Christmas
Thank you, Jesus, for coming to us in the form of a baby. Your only purpose was to save us. What a wonderful gift.
We love you, Jesus. Happy Birthday!!
Thursday, December 23, 2010
Once again, I marvel
Once again I'm marveling at God's wisdom.
Last year, at this time, I was heavily pregnant.
Christmas Eve would make me 37 weeks.
Due to a blood clotting issue, my doctor induced me at 37 weeks with Emily. We assumed the same would hold true this time.
I have always wanted a Christmas baby. I cannot imagine a better Christmas gift than a new baby.
I was so excited. This might finally be the Christmas babe I'd dreamt of.
And why not? If the doc induced me right at 37 weeks before, surely she would this time.
I knew no doctor would want to work during the holidays if they had a choice, but I still held out hope.
Except, part of me was nervous about having a Christmas baby. I told Matt that part of me really wanted a Christmas baby, but part of me was terrified. What if something was wrong with this baby? What if this baby passed away? I didn't want Christmas to forever be marred with that memory. Or the memories of open heart surgery.
I knew. Deep inside, I knew.
I look back and I marvel at God's wisdom. I can celebrate Christmas with nothing but the memory of being pregnant. Joyful memories of life within me.
You see, memories of NICU stays and open heart surgery days...they stay with you. Even if your baby goes on to be healthy, those days, they haunt you. January 11 will come, and I will remember the events of that day. I will vividly remember the feelings, seeing her for the first time, the swollen baby, the vent, the incision...all of it will come rushing back.
For Christmas though, only sweet memories linger. I am so grateful.
Thank you God, for always doing what is best for us, even when we dig our heels in and think we know better than You!!
Last year, at this time, I was heavily pregnant.
Christmas Eve would make me 37 weeks.
Due to a blood clotting issue, my doctor induced me at 37 weeks with Emily. We assumed the same would hold true this time.
I have always wanted a Christmas baby. I cannot imagine a better Christmas gift than a new baby.
I was so excited. This might finally be the Christmas babe I'd dreamt of.
And why not? If the doc induced me right at 37 weeks before, surely she would this time.
I knew no doctor would want to work during the holidays if they had a choice, but I still held out hope.
Except, part of me was nervous about having a Christmas baby. I told Matt that part of me really wanted a Christmas baby, but part of me was terrified. What if something was wrong with this baby? What if this baby passed away? I didn't want Christmas to forever be marred with that memory. Or the memories of open heart surgery.
I knew. Deep inside, I knew.
I look back and I marvel at God's wisdom. I can celebrate Christmas with nothing but the memory of being pregnant. Joyful memories of life within me.
You see, memories of NICU stays and open heart surgery days...they stay with you. Even if your baby goes on to be healthy, those days, they haunt you. January 11 will come, and I will remember the events of that day. I will vividly remember the feelings, seeing her for the first time, the swollen baby, the vent, the incision...all of it will come rushing back.
For Christmas though, only sweet memories linger. I am so grateful.
Thank you God, for always doing what is best for us, even when we dig our heels in and think we know better than You!!
Tuesday, December 21, 2010
Sweet Memories
Years ago, sixteen to be exact, Matt and I had no money.
We were blessed enough to have family with friends that allowed us to stay in their house, rent free, as long as we were fixing it up.
We were also blessed enough to have family that was doing all the work for us.
We were lazy. I look back at that moment in time and am ashamed. We complained about the house. Complained about people being there early to work. We were selfish.
This post isn't about that. Thank goodness for forgiveness, so we can move on from there!
At that time, we didn't have a washer or dryer. Once a week we would head to the laundromat(I can't believe we used to get by doing laundry once a week. ONCE!! Now I do several loads each day!!). The laundromat was in a strip mall type building. Next door was an arcade. We would load our laundry into the washer and head next door. We would play games. We each had our favorites, but we would always go back to a game that had cars side by side. We would race each other. Matt would beat me every single time. We would laugh and have a great time. We didn't have much money, so we would only play a few games. I will never forget the days of racing Matt.
During this move, all of our belongings are in storage. The only things we brought are the things we could fit in the back of the van, and in Matt's car. We didn't trust the movers with our TV, so it rode in the backseat of Matt's car. We figured there wouldn't be much to do, so we brought Guitar Hero with us.
Matt and I have spent so much time playing the Beatles Guitar Hero. Sometimes just us, more often with the kids. We still laugh.
It brings me back to those days, sixteen years ago, when it was just he and I, racing each other, every week.
Our lives are so much fuller now. So much better. But those are still sweet, sweet memories to me.
How I love that man, more and more every day.
We were blessed enough to have family with friends that allowed us to stay in their house, rent free, as long as we were fixing it up.
We were also blessed enough to have family that was doing all the work for us.
We were lazy. I look back at that moment in time and am ashamed. We complained about the house. Complained about people being there early to work. We were selfish.
This post isn't about that. Thank goodness for forgiveness, so we can move on from there!
At that time, we didn't have a washer or dryer. Once a week we would head to the laundromat(I can't believe we used to get by doing laundry once a week. ONCE!! Now I do several loads each day!!). The laundromat was in a strip mall type building. Next door was an arcade. We would load our laundry into the washer and head next door. We would play games. We each had our favorites, but we would always go back to a game that had cars side by side. We would race each other. Matt would beat me every single time. We would laugh and have a great time. We didn't have much money, so we would only play a few games. I will never forget the days of racing Matt.
During this move, all of our belongings are in storage. The only things we brought are the things we could fit in the back of the van, and in Matt's car. We didn't trust the movers with our TV, so it rode in the backseat of Matt's car. We figured there wouldn't be much to do, so we brought Guitar Hero with us.
Matt and I have spent so much time playing the Beatles Guitar Hero. Sometimes just us, more often with the kids. We still laugh.
It brings me back to those days, sixteen years ago, when it was just he and I, racing each other, every week.
Our lives are so much fuller now. So much better. But those are still sweet, sweet memories to me.
How I love that man, more and more every day.
Monday, December 13, 2010
Everything but the Kitchen Sink
Just some random thoughts and goings on.
~I turned 35 on Saturday. I'm not entirely sure how I feel about that. In so many ways, I still feel like a kid. However, in others, I feel ancient. My hair is getting more and more gray, almost by the day. I like to think it is from wisdom, and all that we have been through. I'm not sure when to embrace it, and not feel the need to pluck it or cover it up. Matt says now, my mom says when I'm 75. At least we all know what she does! ;-) I also keep thinking about the fact that if I was pregnant, I would be considered Advanced Maternal Age. Advanced??? Am I really THAT old??
~Church last weekend was really, really good. It was the week of the Christmas program. So many people were involved, and they even invited Collin and Zachary to be shepherds, and for Emily to be a sheep. They were so cute. They also invited Matthew and Dillon to do a reading. Matthew declined, but Dillon did it. Afterwards, everyone was so friendly. We stayed for the fellowship meal and had a really good time. We are pretty confident that we've found our home.
~The kids started pathfinders and it seems like it will be a good fit. This next weekend the group is going out visiting. Saturday evening, we will drive to Cincinnati and go to the nativity event at the Creation Museum. I'm excited and hope it is a good opportunity for the kids to get to know the other pathfinders better.
~Friday, I took the kids to a new homeschool drama group. It is mainly for teens and they are just starting out. They did a fall follies and will be putting on Annie Get Your Gun in June. It seems like a really great group. Since it is for the teens, I think we may take Collin and Zachy to another group that is having auditions in February. It seems to be more of a children's theater.
~Things keep coming up with the house. Things we didn't expect to be dealing with, and while we are working it all out, it sure has taken the joy out of buying a house. We are still set to close on the 23rd, but time will tell if that happens.
~The medical care here is..well..I don't know. First, I took Matthew to an appointment with his PCM so we could get a referral to the ophthalmologist. They quickly informed me that at this base there is no continuity of care. What this means is that every time we are seen, it will be by someone new. In our case, this doesn't fly well. We need a doctor who is familiar with everyone. I don't know what to do about this. But wait, it gets better. I talked with the cardiologist's nurse today about what to do with Zachy's phone monitoring, and about whether or not the kids need to be seen right now. She scheduled them and asked why they were being seen. I told her they both had TAPVR. She asked me to spell that, and then when I told her it was initials she said she'd never heard of it. I had to explain what it was. OK, I know it isn't common, but she is the cardiologist's nurse for heaven's sake. This has me more than a little worried!! The good news is, there isn't much of a wait for appointments and they will be seen on Wednesday. Wish us luck!
~In all, things are going well. I'm still struggling with being lonely, but that should improve soon...I hope.
~I turned 35 on Saturday. I'm not entirely sure how I feel about that. In so many ways, I still feel like a kid. However, in others, I feel ancient. My hair is getting more and more gray, almost by the day. I like to think it is from wisdom, and all that we have been through. I'm not sure when to embrace it, and not feel the need to pluck it or cover it up. Matt says now, my mom says when I'm 75. At least we all know what she does! ;-) I also keep thinking about the fact that if I was pregnant, I would be considered Advanced Maternal Age. Advanced??? Am I really THAT old??
~Church last weekend was really, really good. It was the week of the Christmas program. So many people were involved, and they even invited Collin and Zachary to be shepherds, and for Emily to be a sheep. They were so cute. They also invited Matthew and Dillon to do a reading. Matthew declined, but Dillon did it. Afterwards, everyone was so friendly. We stayed for the fellowship meal and had a really good time. We are pretty confident that we've found our home.
~The kids started pathfinders and it seems like it will be a good fit. This next weekend the group is going out visiting. Saturday evening, we will drive to Cincinnati and go to the nativity event at the Creation Museum. I'm excited and hope it is a good opportunity for the kids to get to know the other pathfinders better.
~Friday, I took the kids to a new homeschool drama group. It is mainly for teens and they are just starting out. They did a fall follies and will be putting on Annie Get Your Gun in June. It seems like a really great group. Since it is for the teens, I think we may take Collin and Zachy to another group that is having auditions in February. It seems to be more of a children's theater.
~Things keep coming up with the house. Things we didn't expect to be dealing with, and while we are working it all out, it sure has taken the joy out of buying a house. We are still set to close on the 23rd, but time will tell if that happens.
~The medical care here is..well..I don't know. First, I took Matthew to an appointment with his PCM so we could get a referral to the ophthalmologist. They quickly informed me that at this base there is no continuity of care. What this means is that every time we are seen, it will be by someone new. In our case, this doesn't fly well. We need a doctor who is familiar with everyone. I don't know what to do about this. But wait, it gets better. I talked with the cardiologist's nurse today about what to do with Zachy's phone monitoring, and about whether or not the kids need to be seen right now. She scheduled them and asked why they were being seen. I told her they both had TAPVR. She asked me to spell that, and then when I told her it was initials she said she'd never heard of it. I had to explain what it was. OK, I know it isn't common, but she is the cardiologist's nurse for heaven's sake. This has me more than a little worried!! The good news is, there isn't much of a wait for appointments and they will be seen on Wednesday. Wish us luck!
~In all, things are going well. I'm still struggling with being lonely, but that should improve soon...I hope.
Saturday, December 4, 2010
Where do I belong?
I feel totally alone.
Since we have moved I feel lost. I realize it's only been a couple weeks, but it's still lonely.
My natural tendency is to turn to the Internet. Over the years I've been a part of several different Email lists and message boards.
They have ranged in topic from trying to conceive, to miscarriage survival, to due date clubs, to homeschooling, to heart groups.
Only now, I don't seem to fit anywhere. I fit everywhere, and yet no where.
And it's lonely.
Since we have moved I feel lost. I realize it's only been a couple weeks, but it's still lonely.
My natural tendency is to turn to the Internet. Over the years I've been a part of several different Email lists and message boards.
They have ranged in topic from trying to conceive, to miscarriage survival, to due date clubs, to homeschooling, to heart groups.
Only now, I don't seem to fit anywhere. I fit everywhere, and yet no where.
And it's lonely.
Thursday, December 2, 2010
Zachism
This deserves it's own post.
This morning, the kids and I were having worship.
We were talking about easing one another's burdens.
I asked Zachy and Collin if they knew what a burden was.
I was surprised when Zachy said he did.
He then told me he had heard a song about it.
I was mentally wracking my brain, trying to figure out what song he could possibly be talking about, when he started singing.
"I fell in to a burden ring of fire...."
Oh my goodness, I cracked up. All I could think was that this would have made a GREAT Reader's Digest story!
This morning, the kids and I were having worship.
We were talking about easing one another's burdens.
I asked Zachy and Collin if they knew what a burden was.
I was surprised when Zachy said he did.
He then told me he had heard a song about it.
I was mentally wracking my brain, trying to figure out what song he could possibly be talking about, when he started singing.
"I fell in to a burden ring of fire...."
Oh my goodness, I cracked up. All I could think was that this would have made a GREAT Reader's Digest story!
The post that has no title
Tonight probably isn't the best night for me to be writing.
I'm a bit down tonight.
There's actually a whole entry I'd love to write, but I can almost hear people's thoughts. Unless you've walked in our shoes, there is no way you could understand, so I don't even think I'll bother trying to explain it.
I just want to write it out. I guess the old fashioned paper journals still have their place. There isn't anywhere online that I feel safe. Too many judgements can be made, and it just isn't worth it.
Instead, I'll write about Ohio.
It's weird.
I know I said this about Texas too, but it just is.
It's hard to imagine Ohio ever feeling like home.
So far, we've visited two churches. The first was way too big for us. No one talked to us, and it was just..blah. The second holds more promise.
It seems, though, that people around here just float from church to church, and in fact some have told us that that is what they do. They go to whatever church happens to be having something fun going on. Apparently, this particularly applies to the youth.
The only problem with that is that we want to have a home. We don't want to go here and there.
It's strange too, the whole area has one Pathfinder club. We took the older boys to the meeting on Tuesday and it seems to be OK. It's just so bizarre to us to have one choice. I mean, if we don't like it, there is no where else to go. Same with Adventurers, but we haven't tried that out yet. In fact, I think there might be a meeting this Sabbath. However, it's supposed to snow on Sabbath, several inches. It's been so long since we've driven in snow, that we are both a little hesitant to drive the great white in anything slick. We are worried that a van that heavy will just slide around like crazy. So, we'll see what we decide to do.
I'm feeling pretty lonely right now.
Matt has started back to work. His whole section moved up here, so he is working with all his old friends, and nothing but location has changed for him.
I am so very glad I have six children. I know that has made this easier for them, having each other. I know they still miss their friends, but they are all fairing quite well.
I'm trying to put a happy face on for them, but this part is hard. It takes awhile to get used to things, and to meet people. It doesn't help that people here don't seem all that friendly. Everyone seems so hurried, and that they don't have time for you. There was one lady at pathfinders that may be a potential friend. *sigh* Who knows. Time will tell. And it will get easier, I know this. It will just take awhile.
I'm a bit down tonight.
There's actually a whole entry I'd love to write, but I can almost hear people's thoughts. Unless you've walked in our shoes, there is no way you could understand, so I don't even think I'll bother trying to explain it.
I just want to write it out. I guess the old fashioned paper journals still have their place. There isn't anywhere online that I feel safe. Too many judgements can be made, and it just isn't worth it.
Instead, I'll write about Ohio.
It's weird.
I know I said this about Texas too, but it just is.
It's hard to imagine Ohio ever feeling like home.
So far, we've visited two churches. The first was way too big for us. No one talked to us, and it was just..blah. The second holds more promise.
It seems, though, that people around here just float from church to church, and in fact some have told us that that is what they do. They go to whatever church happens to be having something fun going on. Apparently, this particularly applies to the youth.
The only problem with that is that we want to have a home. We don't want to go here and there.
It's strange too, the whole area has one Pathfinder club. We took the older boys to the meeting on Tuesday and it seems to be OK. It's just so bizarre to us to have one choice. I mean, if we don't like it, there is no where else to go. Same with Adventurers, but we haven't tried that out yet. In fact, I think there might be a meeting this Sabbath. However, it's supposed to snow on Sabbath, several inches. It's been so long since we've driven in snow, that we are both a little hesitant to drive the great white in anything slick. We are worried that a van that heavy will just slide around like crazy. So, we'll see what we decide to do.
I'm feeling pretty lonely right now.
Matt has started back to work. His whole section moved up here, so he is working with all his old friends, and nothing but location has changed for him.
I am so very glad I have six children. I know that has made this easier for them, having each other. I know they still miss their friends, but they are all fairing quite well.
I'm trying to put a happy face on for them, but this part is hard. It takes awhile to get used to things, and to meet people. It doesn't help that people here don't seem all that friendly. Everyone seems so hurried, and that they don't have time for you. There was one lady at pathfinders that may be a potential friend. *sigh* Who knows. Time will tell. And it will get easier, I know this. It will just take awhile.
Wednesday, November 24, 2010
So Thankful
Happy Thanksgiving, dear readers.
I hope this Thanksgiving finds you all with grateful hearts.
We have so much to be thankful for this year.
The biggest thing we are thankful is the love of a kind and loving Father, who cares about even the smallest details of our lives.
We are also thankful this year, for our newest addition. How different this Thanksgiving could have been, had things not gone well. So many parents are going through the motions this year, as they try to cope with life without their children. Children who were taken far too soon by CHDs. My heart hurts for them, and even though I have so much to be thankful for, I can't help but feel sadness for all of them. I cannot imagine how they must feel tonight.
All of the children are thriving and happy, for that, I am thankful.
We have arrived in Ohio, and are in our temporary lodging. We will be here through the holidays.
It is comfortable here, with three bedrooms and three bathrooms. Best of all, it's warm. We've quickly learned it is quite cold in Ohio.
We've tried to make it homey here and have put up some Christmas lights for the kids, outside. We are the only people here who have lights, but that's OK.
After looking at loads of houses, and praying a lot, we put an offer in on a house we loved. After negotiating all day, we have come to an agreement, and we will be closing on December 23. We are so excited to be homeowners! And yet, it is a bit scary! If something goes wrong, it's our responsibility! YIKES!! We love the house though, and could see our family there. It was the biggest house we looked at, and the least expensive! Can't beat that.
Here are a couple pics from the realty site.
I'm baking pumpkin pies, and Matt will be making a cheesecake. We've boiled the eggs. Tomorrow, we'll celebrate all we are thankful for, and know that all our blessings come directly from our Lord.
May you be richly blessed this Thanksgiving.
I hope this Thanksgiving finds you all with grateful hearts.
We have so much to be thankful for this year.
The biggest thing we are thankful is the love of a kind and loving Father, who cares about even the smallest details of our lives.
We are also thankful this year, for our newest addition. How different this Thanksgiving could have been, had things not gone well. So many parents are going through the motions this year, as they try to cope with life without their children. Children who were taken far too soon by CHDs. My heart hurts for them, and even though I have so much to be thankful for, I can't help but feel sadness for all of them. I cannot imagine how they must feel tonight.
All of the children are thriving and happy, for that, I am thankful.
We have arrived in Ohio, and are in our temporary lodging. We will be here through the holidays.
It is comfortable here, with three bedrooms and three bathrooms. Best of all, it's warm. We've quickly learned it is quite cold in Ohio.
We've tried to make it homey here and have put up some Christmas lights for the kids, outside. We are the only people here who have lights, but that's OK.
After looking at loads of houses, and praying a lot, we put an offer in on a house we loved. After negotiating all day, we have come to an agreement, and we will be closing on December 23. We are so excited to be homeowners! And yet, it is a bit scary! If something goes wrong, it's our responsibility! YIKES!! We love the house though, and could see our family there. It was the biggest house we looked at, and the least expensive! Can't beat that.
Here are a couple pics from the realty site.
I'm baking pumpkin pies, and Matt will be making a cheesecake. We've boiled the eggs. Tomorrow, we'll celebrate all we are thankful for, and know that all our blessings come directly from our Lord.
May you be richly blessed this Thanksgiving.
Tuesday, November 9, 2010
MIA
I know, I know..I left you hanging on the cruise entries. But see, something is happening. Something major.
We are moving.
What's that you say? You already knew we are moving? Oh. Well then, let me just say..it's happening NOW!!
We've been planning this move for well over a year and it is impossible to believe the time is now!
Our house is all packed up. Tomorrow the movers come and load up our furniture, and we leave on Monday.
It's all so bittersweet. I'm excited for a new adventure, and at the same time so very sad to be leaving our friends behind.
All of this to say...I can't do the rest of the cruise entries right now, because the computer is packed up, with the pictures! So, when we get there, and get the computer set up, I'll get back on it!
For now, try not to miss me too much!
Oh, and just because y'all need to know...Nannie has started taking several steps. She'll be a flow blown walker before long!
We are moving.
What's that you say? You already knew we are moving? Oh. Well then, let me just say..it's happening NOW!!
We've been planning this move for well over a year and it is impossible to believe the time is now!
Our house is all packed up. Tomorrow the movers come and load up our furniture, and we leave on Monday.
It's all so bittersweet. I'm excited for a new adventure, and at the same time so very sad to be leaving our friends behind.
All of this to say...I can't do the rest of the cruise entries right now, because the computer is packed up, with the pictures! So, when we get there, and get the computer set up, I'll get back on it!
For now, try not to miss me too much!
Oh, and just because y'all need to know...Nannie has started taking several steps. She'll be a flow blown walker before long!
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