So, for anyone who knows me, this will not come as much of a surprise. But I have been reading lots lately. I started with blogs and such and know I have read several memoirs of families of children with DS. The first read was Bloom by Kelle Hampton. I really liked her blog and it was interesting to hear her story more fully. I have read parts of Gifts and Gifts 2 and those vignettes were heartwarming as well. Now I am reading A Good and Perfect Gift by Amy Julia Becker. Wow.
These women have such courage to share their most intimate feelings. I hope that I can come close in my own writings so that others may have a deeper sense of our journey. But reading this morning during Colton's nap caused me to stop and pause and reflect and journal right away.
In the story so far, the baby has just come into their lives with a birth DS diagnosis. Someone commented that it was good that they didn't know beforehand because then they would be preparing for DS and not for the baby. "I prepared for a child, a family, a gift--not a condition, a syndrome, a problem."
This really struck me this morning. I really had to reflect and think about how I was preparing. I think I have actually struck a nice balance. I have ordered a ton of books (thank you Amazon.com) and I read online a lot at first, but now I am chilling much more. Most of the books and pamphlets are set for reference once we need them and that is comforting to me. And, honestly, I started looking at them and was a little freaked out. I will take it as it comes and the books will be there as needed.
I am really looking for information from parents who did have a prenatal diagnosis and time to prepare. I created a poll on the DS board that I have been frequenting as to when those parents found out about the diagnosis. Shockingly, nearly 70% were a birth diagnosis. (This is where the data geek in me comes out...) So out of 117 families, 82 found out at or after birth. Only 35 were prenatal. Hmmm...just some further food for thought. This is such an interesting adventure!
Tuesday, October 16, 2012
Monday, October 15, 2012
Next week :)
I got a call from the perinatalogist's office last week and they needed to reschedule my next ultrasound, so I get to see the little bug next Monday! This will be the follow-up level 2 scan to check baby over really well again. The heart and bowels will be the focus areas, in my mind.
I am excited to get to see the little squirt, but I am also anxious to find out what might be going on. Having faith that all will be fine and that the fluid around the heart and in the kidneys have resolved, too. More waiting :)
Other than that, I felt much better over the weekend. In my medical opinion, I believe maybe the little one flipped into position the other day and is now head down. I will be extra bummed if he/she is still breech next week. The movements feel differently and I am having familiar pressure, so I really hope this is just what happens in the third trimester to most moms.
THIRD TRIMESTER! I forgot to celebrate that accomplishment aloud! I am 28 weeks and have made it to the final trimester still standing (literally!). I am trying to use Colton's naptimes wisely. And, as much as I feel like a lazy bum, I think it gives my body the resting it needs to keep going the rest of the day. If only I could actually nap too! The shots are still going well and B has been such a trooper. I know he likes giving the shots as much as I like having them, but I am blessed that he is so patient and kind and gentle--my behind has not been sore much at all!
Thoughts are generally much more positive these days. I can hardly believe that it is the middle of October. I am generally a "Christmas tornado" and finished quite early with gifts and such. I am feeling a bit more of a crunch this year based on the "what ifs" that could occur. I am a good portion of the through our shopping and even wrapped some things this morning!
We have several other things going right now and once that all calms down, I think my attitude and focus will be much better. These extra stresses have really bogged down my attitude lately. Which I am not proud of as it is robbing the joy from each day. One thing I have learned this year---goals and focus and control in one's life is so important. I am about finished with those that lack those things and refuse to move forward and control their own destiny. I do believe there is an ultimate plan for us by Him, but for the love of Pete, those who just sit back and complain about the life happening around them is such a joke. Vent over:)
I am excited to get to see the little squirt, but I am also anxious to find out what might be going on. Having faith that all will be fine and that the fluid around the heart and in the kidneys have resolved, too. More waiting :)
Other than that, I felt much better over the weekend. In my medical opinion, I believe maybe the little one flipped into position the other day and is now head down. I will be extra bummed if he/she is still breech next week. The movements feel differently and I am having familiar pressure, so I really hope this is just what happens in the third trimester to most moms.
THIRD TRIMESTER! I forgot to celebrate that accomplishment aloud! I am 28 weeks and have made it to the final trimester still standing (literally!). I am trying to use Colton's naptimes wisely. And, as much as I feel like a lazy bum, I think it gives my body the resting it needs to keep going the rest of the day. If only I could actually nap too! The shots are still going well and B has been such a trooper. I know he likes giving the shots as much as I like having them, but I am blessed that he is so patient and kind and gentle--my behind has not been sore much at all!
Thoughts are generally much more positive these days. I can hardly believe that it is the middle of October. I am generally a "Christmas tornado" and finished quite early with gifts and such. I am feeling a bit more of a crunch this year based on the "what ifs" that could occur. I am a good portion of the through our shopping and even wrapped some things this morning!
We have several other things going right now and once that all calms down, I think my attitude and focus will be much better. These extra stresses have really bogged down my attitude lately. Which I am not proud of as it is robbing the joy from each day. One thing I have learned this year---goals and focus and control in one's life is so important. I am about finished with those that lack those things and refuse to move forward and control their own destiny. I do believe there is an ultimate plan for us by Him, but for the love of Pete, those who just sit back and complain about the life happening around them is such a joke. Vent over:)
Friday, October 12, 2012
One of those days
So today it hit me. Am I perfect storm for pregnancy? I started having some aching and contractions this morning and started to worry immediately. I had been very worried about this with the boys after our experiences with Kate, but things have been going so well that I haven't really worried about it much with this pregnancy.
Here's a quick background....During my pregnancy with Kate, I started into labor and didn't even know around week 27. When I saw the doctor, he noticed the signs and put me on bedrest. That lasted a weekend before I was back in the office as we thought my water broke. I was in the hospital for a week at that point while they stopped labor and gave me steroid shots for her lungs. Anyone who has experienced Magnesium Sulfate will understand what a horrible week that was. Many parts I don't even recall because I was so out of it. At any rate, I was released to bedrest at home and lasted until 32 weeks when it all started again and she was delivered that night.
She spent 30 days in the NICU coming home the day after Mother's Day. It was a frustrating and worrisome time, but thankfully within the year, she was right on track and you would never know looking at her today that she was 8 weeks early.
With the boys, I knew much more what to expect. I was monitored much more closely and was also given weekly progesterone shots (17P) in hopes of keeping labor at bay. I was on partial bedrest with the boys starting about week 18, too. This all worked as Andy was 37 weeks and Colton made it to 39.
Fast forward to this little one. I am no longer "working" (ha ha ha!) and have a 14 month old to chase around. I have been feeling pretty fantastic (despite the heartburn and back aches). I have been able to keep up, for the most part, and still be a mom and wife (and housekeeper and cook and...).
Today, though, I started to get lots of tightening. I started to freak out a bit. Holy cow, what if this little one comes early?!?! How will the impending diagnosis impact any other "preemie" issues that could come into play?
I am going to lay low this weekend and hope that things chill out. I am 28 weeks this weekend, so barring any DS related issues, baby would spend time in the NICU, but probably be just fine. Tiny and need lots of support, but fine.
Praying for the little one to stay put. Praying for me to know when to say when. Praying for my family's understanding.
Here's a quick background....During my pregnancy with Kate, I started into labor and didn't even know around week 27. When I saw the doctor, he noticed the signs and put me on bedrest. That lasted a weekend before I was back in the office as we thought my water broke. I was in the hospital for a week at that point while they stopped labor and gave me steroid shots for her lungs. Anyone who has experienced Magnesium Sulfate will understand what a horrible week that was. Many parts I don't even recall because I was so out of it. At any rate, I was released to bedrest at home and lasted until 32 weeks when it all started again and she was delivered that night.
She spent 30 days in the NICU coming home the day after Mother's Day. It was a frustrating and worrisome time, but thankfully within the year, she was right on track and you would never know looking at her today that she was 8 weeks early.
With the boys, I knew much more what to expect. I was monitored much more closely and was also given weekly progesterone shots (17P) in hopes of keeping labor at bay. I was on partial bedrest with the boys starting about week 18, too. This all worked as Andy was 37 weeks and Colton made it to 39.
Fast forward to this little one. I am no longer "working" (ha ha ha!) and have a 14 month old to chase around. I have been feeling pretty fantastic (despite the heartburn and back aches). I have been able to keep up, for the most part, and still be a mom and wife (and housekeeper and cook and...).
Today, though, I started to get lots of tightening. I started to freak out a bit. Holy cow, what if this little one comes early?!?! How will the impending diagnosis impact any other "preemie" issues that could come into play?
I am going to lay low this weekend and hope that things chill out. I am 28 weeks this weekend, so barring any DS related issues, baby would spend time in the NICU, but probably be just fine. Tiny and need lots of support, but fine.
Praying for the little one to stay put. Praying for me to know when to say when. Praying for my family's understanding.
Tuesday, October 9, 2012
Perspective
On one of the baby boards I check out online, I noticed a signature a mom had. (For those of you who are already lost: a board is like an online chat and a signature is included on some people's posts with identifying info for that member).
This was on the Down syndrome board on BabyCenter. Most of the mom's list when their little one with DS was born and/or medical complications that little one had. This mom included that, but also included a detail about her other two children. I cannot remember exactly what it said, but something about one having curly hair and the other having brown eyes:) I LOVED it!
It made me think about how we all have SOMETHING that is different and unique about us. It made me think that we all have things come up that are unexpected. It made me think.
Here is what my current siggy (or signature) reads:
This was on the Down syndrome board on BabyCenter. Most of the mom's list when their little one with DS was born and/or medical complications that little one had. This mom included that, but also included a detail about her other two children. I cannot remember exactly what it said, but something about one having curly hair and the other having brown eyes:) I LOVED it!
It made me think about how we all have SOMETHING that is different and unique about us. It made me think that we all have things come up that are unexpected. It made me think.
Here is what my current siggy (or signature) reads:
SAHM ~ most work I've ever done and loving it!
DD (2005) ~ DS (2006) ~ DS (2011) ~ (t21) EDD 01/06/13
Angel babies '03 and '05
But it could easily be changed to:
SAHM ~ most work I've ever done and loving it! (although my house is never any cleaner, I am less "put together" and I am somehow more exhausted than when I was "working")
~ DD (2005) born at 32 weeks, has red curly hair, freckles and is so kind-hearted
~ DS (2006) born at 37 weeks, has (had?!) Eosinophilic esophagitis, a contagious smile and is seriously one of the funniest people I know
~ DS (2011) born at 39 weeks, also has very red hair, chubby cheeks and allergies to milk, eggs and peanuts; is becoming a daredevil (which frightens me just a bit!)
~ (t21) EDD 01/06/13 -- will probably arrive in late December and after that who knows?!!? We are just his/her parents along for the ride
Angel babies '03 and '05 (I miss this 2 little ones we never got to see. It makes me wonder how they would have impacted our life. It makes me wonder if it was God's plan for us to only have them for a short time. These experiences help me to have a great respect for life and to remember to hug my kiddos often.)
There is so much in life we have no control over and I must always remember a phrase I heard back in grade school: let go and let God. It is becoming easier and I feel much more peaceful because of it.
My priorities are set and my goals are in mind. If I can stick to that, I know we will be ok.
DD (2005) ~ DS (2006) ~ DS (2011) ~ (t21) EDD 01/06/13
Angel babies '03 and '05
But it could easily be changed to:
SAHM ~ most work I've ever done and loving it! (although my house is never any cleaner, I am less "put together" and I am somehow more exhausted than when I was "working")
~ DD (2005) born at 32 weeks, has red curly hair, freckles and is so kind-hearted
~ DS (2006) born at 37 weeks, has (had?!) Eosinophilic esophagitis, a contagious smile and is seriously one of the funniest people I know
~ DS (2011) born at 39 weeks, also has very red hair, chubby cheeks and allergies to milk, eggs and peanuts; is becoming a daredevil (which frightens me just a bit!)
~ (t21) EDD 01/06/13 -- will probably arrive in late December and after that who knows?!!? We are just his/her parents along for the ride
Angel babies '03 and '05 (I miss this 2 little ones we never got to see. It makes me wonder how they would have impacted our life. It makes me wonder if it was God's plan for us to only have them for a short time. These experiences help me to have a great respect for life and to remember to hug my kiddos often.)
There is so much in life we have no control over and I must always remember a phrase I heard back in grade school: let go and let God. It is becoming easier and I feel much more peaceful because of it.
My priorities are set and my goals are in mind. If I can stick to that, I know we will be ok.
Sunday, October 7, 2012
Love this post!
As I continue to struggle with the perception and reality of the diagnosis in the world around us, I happened upon this article and loved it!
http://www.qideas.org/blog/to-cade-and-the-eight-percent.aspx
http://www.qideas.org/blog/to-cade-and-the-eight-percent.aspx
Saturday, October 6, 2012
Next appointments...
I can hardly believe that I do not have any pregnancy related appointments until the end of the month! Is this what a typical pregnancy is like?? Whoa!
I will be having another level 2 scan at the end of the month. They will be checking out baby again, especially focusing on potential bowel and heart related issues. It should be a good time to see everything and prepare for anything prior to birth. Not sure how many more ultrasounds we might have after that. What we seem to hear is that if there are heart issues, those will take some time to deal with. They like to wait until baby is nice and strong before surgeries with the heart. The bowel issue seems a bit different a that would be taken care of much sooner after birth. Hoping we don't have to deal with either of these issues, but only time will tell!
The other question I keep getting is how are we doing with all this. Honestly, I am at a point where I am a bit emotionally spent. I have read and researched and googled so much, that I feel a bit on overload. The one thing that I am sure of is how wide a spectrum this diagnosis can entail. That unknown is what is hardest right now because I cannot plan ahead for this and must trust and go with the flow.
There are several words that continue to plague me as my thoughts drift during the day and night: retardation and termination. There are so many things that I have been unaware of in life (truth be told, I was blissfully ignorant and wish I could be again). I have crafted several posts encompassing my thoughts around this, but am still struggling with it. All I keep coming back to is the apparent statistic that 90% of parents who receive this diagnosis prenatally decide to terminate the pregnancy. This is something that is truly eating at my core beliefs and I cannot believe it. I am so grateful that my husband and I both agree on this and we are carrying on together. I may post more later about this, if the words come.
How are we doing? Living life as best we know how and loving our kids. Now that I think about it, I can't imagine that will change with our new arrival!
I will be having another level 2 scan at the end of the month. They will be checking out baby again, especially focusing on potential bowel and heart related issues. It should be a good time to see everything and prepare for anything prior to birth. Not sure how many more ultrasounds we might have after that. What we seem to hear is that if there are heart issues, those will take some time to deal with. They like to wait until baby is nice and strong before surgeries with the heart. The bowel issue seems a bit different a that would be taken care of much sooner after birth. Hoping we don't have to deal with either of these issues, but only time will tell!
The other question I keep getting is how are we doing with all this. Honestly, I am at a point where I am a bit emotionally spent. I have read and researched and googled so much, that I feel a bit on overload. The one thing that I am sure of is how wide a spectrum this diagnosis can entail. That unknown is what is hardest right now because I cannot plan ahead for this and must trust and go with the flow.
There are several words that continue to plague me as my thoughts drift during the day and night: retardation and termination. There are so many things that I have been unaware of in life (truth be told, I was blissfully ignorant and wish I could be again). I have crafted several posts encompassing my thoughts around this, but am still struggling with it. All I keep coming back to is the apparent statistic that 90% of parents who receive this diagnosis prenatally decide to terminate the pregnancy. This is something that is truly eating at my core beliefs and I cannot believe it. I am so grateful that my husband and I both agree on this and we are carrying on together. I may post more later about this, if the words come.
How are we doing? Living life as best we know how and loving our kids. Now that I think about it, I can't imagine that will change with our new arrival!
Tuesday, October 2, 2012
Appointment updates and more signs from above
Well, I finally passed my glucose test yesterday--YAY! SO once less thing to worry about there.
I also had my appointment with the new OB. I liked him and we just talked about my history and current issues with this little one. There are a few things that I need to think about and consider in switching. It shouldn't surprise me, but it always does when I here conflicting ideas about care. There are a few things that Brian and I need to talk about. (Brian wasn't able to be with me yesterday because he had taken Andy to Ohio for hopefully his final scope for his allergies! what a week!!)
The good thing is that my preterm labor issues are non-existent thus far, so really I am a "normal" pregnancy unless something changes. It also sounds like the later that we do the next anatomy scan, the more that might be able to be seen. As much as that is stressing me out, I would rather wait and know what we have going on, if anything. So, we will see! (darn that patience again!)
Another amazing sign was given to me today. I was up with Colton early this morning and a thought came to me to call a former co-worker who is involved in a MOPs group. I has this sudden feeling that I should contact her because she would help me on my journey somehow. I got in touch with her today and just asked if anyone in her group had kiddos with special needs. She mentioned a few things and about a woman who had an issue that was pregnant currently. I asked if she could tell me more and got goosebumps reading her response as she mentioned chromosomal abnormalities and a missing nasal bridge. Holy $hit!!!!! is what I wanted to say, but I then my surprise went away. This conversation was planted to be had by something much greater than me. I am hoping I might be able to connect with this mama and see what role she has in my journey.
It is another gorgeous fall day here and although my heart and head have had much worry lately (I've been crafting a post that isn't on the happiest of related topics), it is moments like these that remind me to keep the faith. Everything truly does happen for a reason!
I also had my appointment with the new OB. I liked him and we just talked about my history and current issues with this little one. There are a few things that I need to think about and consider in switching. It shouldn't surprise me, but it always does when I here conflicting ideas about care. There are a few things that Brian and I need to talk about. (Brian wasn't able to be with me yesterday because he had taken Andy to Ohio for hopefully his final scope for his allergies! what a week!!)
The good thing is that my preterm labor issues are non-existent thus far, so really I am a "normal" pregnancy unless something changes. It also sounds like the later that we do the next anatomy scan, the more that might be able to be seen. As much as that is stressing me out, I would rather wait and know what we have going on, if anything. So, we will see! (darn that patience again!)
Another amazing sign was given to me today. I was up with Colton early this morning and a thought came to me to call a former co-worker who is involved in a MOPs group. I has this sudden feeling that I should contact her because she would help me on my journey somehow. I got in touch with her today and just asked if anyone in her group had kiddos with special needs. She mentioned a few things and about a woman who had an issue that was pregnant currently. I asked if she could tell me more and got goosebumps reading her response as she mentioned chromosomal abnormalities and a missing nasal bridge. Holy $hit!!!!! is what I wanted to say, but I then my surprise went away. This conversation was planted to be had by something much greater than me. I am hoping I might be able to connect with this mama and see what role she has in my journey.
It is another gorgeous fall day here and although my heart and head have had much worry lately (I've been crafting a post that isn't on the happiest of related topics), it is moments like these that remind me to keep the faith. Everything truly does happen for a reason!
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