James and I got about 6-7 hours of uninterrupted sleep. No waiting for results. No emergent situations. No pagers going off in the middle of the night. Ewan continues to sail through these hours, floating on the prayers you're sending up for him.
To call us "thankful" is the hyperbole of understatement. After a nap and some lunch yesterday, we went to the in-hospital Starbucks. We walked outside to breathe in some fresh air and soak up some sunlight. It felt like we hadn't done that in years. I can't even begin to describe the gift it is to know your child is resting easy in the arms of Jesus and his angels, as well as some exceedingly compassionate and competent nurses and doctors. At a time like this, that's exactly what we need.
And so we went to the hospital chapel, fell on our knees, and gave humble thanks to God for the life of our son. About fifteen hours before that, no one was sure that he would make it. While we know that we are far from done with this fight, we have passed a major hurdle in this first surgery. Just a little over twenty-four hours ago, no one thought we'd be this far.
Thank you, thank you Jesus!!
And so we don't look to next week or even to tomorrow, but to each moment and day as it comes. Never have we been given such grace truly to be able to live in the present.
Medical updates:
Today is going to be an important day. After morning rounds at 8 am, the medical team is going to start warming Ewan back up. After as traumatic a surgery as he endured, it is common to keep these recovering little ones at lower than body temp (91 degrees F) to ward off any chance of fever and optimize the opportunity to heal. They will gradually start warming him up a bit and slowly weaning off the support he's getting from ECMO. This will also give them the opportunity to see how blood is moving through the shunt since ECMO bypasses that right now.
We're already seeing a lot of good signs: he's been moving his arms and legs a lot, his lungs are functioning as they should -- exchanging O2 and CO2 on their own, and his heart rate and BP are perfect. Please rejoice with us in this news, and continue to pray his poor little body through this. Our little fighter needs everyone behind him!!
When I went to pump and see him this morning, the nurses had him all cuddled up with a little monkey. He was moving around enough that they wanted to give him something to snuggle. Aside from being terribly cute, I couldn't help but think about how appropriate it was. Throughout my pregnancy, I referred to him as "my little monkey."
My little monkey is a snuggler and a fighter!!
Many thanks and much love to you, Team Ewan -- keep those fervent prayers coming!!
Showing posts with label team ewan. Show all posts
Showing posts with label team ewan. Show all posts
25 September 2010
10 September 2010
Meet Auntie Kaari
This is my younger sister Kaari (her name rhymes with "sorry"). I think she's rather fabulous. And I've never (and I mean never) met another person so excited about being an aunt.
James and I toured the NICU at Seattle Children's Hospital yesterday. I've never been to a children's hospital, but I was impressed with how unlike a hospital it felt (i.e., my blood pressure did not go through the roof when I walked through the door, like it tends to when I enter most medical establishments). People were excited for us to meet our first baby. I didn't feel odd or like a pariah for being pregnant with a baby that has ToF. There were brightly colored murals everywhere, and everyone who worked there smiled. It felt like a hopeful place.
We learned that amongst the many and various resources available, we can connect to wireless internet while we're there. We are definitely planning on taking one of our laptops with us so we can provide regular updates (and pictures!) as we're able. But I wanted to let you know that Auntie Kaari might be dropping in at Team-Ewan.com from time to time, offering not only the updates on Baby Ewan's condition (and ours), but also a different perspective on the matter. She loves her nephew to the moon and back already, so I know she will do an awesome job. She's definitely ready to spoil him rotten!
James and I toured the NICU at Seattle Children's Hospital yesterday. I've never been to a children's hospital, but I was impressed with how unlike a hospital it felt (i.e., my blood pressure did not go through the roof when I walked through the door, like it tends to when I enter most medical establishments). People were excited for us to meet our first baby. I didn't feel odd or like a pariah for being pregnant with a baby that has ToF. There were brightly colored murals everywhere, and everyone who worked there smiled. It felt like a hopeful place.
We learned that amongst the many and various resources available, we can connect to wireless internet while we're there. We are definitely planning on taking one of our laptops with us so we can provide regular updates (and pictures!) as we're able. But I wanted to let you know that Auntie Kaari might be dropping in at Team-Ewan.com from time to time, offering not only the updates on Baby Ewan's condition (and ours), but also a different perspective on the matter. She loves her nephew to the moon and back already, so I know she will do an awesome job. She's definitely ready to spoil him rotten!
07 September 2010
Eliminating unknowns
Thank you so much, heart moms, on your tips and advice!! I can honestly say that those are some of the most practical, helpful, and nurturing bits of advice I've gotten. I know your previous experience will help us navigate the crazy territory we're about to enter into. I know your wisdom was hard-earned, and I'm so grateful for it.
The biggest and most important unknowns are ahead of us and entirely out of our control, but we are doing what we can to eliminate what unknowns we can. We've arranged to take see the NICU at Valley Medical Center (the hospital where I will be delivering) and on Thursday, we will be getting a tour of the NICU and cardiac area of Seattle Children's Hospital. I know just having the visuals and something of a sense of familiarity when all this really starts happening will help us adjust more quickly and provide the best care for Ewan that we possibly can.
My emotions continue to ride one incredible roller coaster as we get closer and closer to Ewan's birth and all we can do is anticipate. Ugh. I know all we can do is pray and wait.
And just a reminder about my "Virtual" Baby Shower. Unlike other normal baby showers, this one isn't about baby swag so much as it is having a tangible reminder of your encouragement and prayers to keep with us, and one day (Lord willing) to share with Ewan when he's older. Click on the button below for details.
The biggest and most important unknowns are ahead of us and entirely out of our control, but we are doing what we can to eliminate what unknowns we can. We've arranged to take see the NICU at Valley Medical Center (the hospital where I will be delivering) and on Thursday, we will be getting a tour of the NICU and cardiac area of Seattle Children's Hospital. I know just having the visuals and something of a sense of familiarity when all this really starts happening will help us adjust more quickly and provide the best care for Ewan that we possibly can.
My emotions continue to ride one incredible roller coaster as we get closer and closer to Ewan's birth and all we can do is anticipate. Ugh. I know all we can do is pray and wait.
And just a reminder about my "Virtual" Baby Shower. Unlike other normal baby showers, this one isn't about baby swag so much as it is having a tangible reminder of your encouragement and prayers to keep with us, and one day (Lord willing) to share with Ewan when he's older. Click on the button below for details.
03 September 2010
You've been there, done that, and have the t-shirt
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| CHD Awareness shirt from Zazzle.com |
My fellow heart-moms, I have to say: you are a lifeline for me right now!! You've been there, done that, and have the t-shirt (and you're still going there!).
As I was reviewing comments from the past few posts, I got a lot of information that neither my husband nor I had heard before: about government and other assistance programs, about ways we can get help to make it through this crazy time.
And then I had the thought:
What else do you know that might help?
I'm not just talking about ways to get financial assistance, though if you know of ways above and beyond what has already been suggested (e.g., the SSI form for a child's disability), then I want to hear it. But I'm wondering what else you've gained in your experience that might be helpful for us to know.
I don't want to limit the scope of what is offered, but I'm thinking about anything in the way of the following: NICU survival tips, asking the right questions of your doctors and nurses, things that might have worried you at first that may have turned out not to be a big deal (or vice versa: things that seemed like no biggie but turned out to be important), things you wish you would have known and/or taken advantage of while your child was there. Anything like that. I know there is a wealth and variety of experience, so have at it.
What should we, or do you want us, to know?
27 August 2010
You're Invited!! (updated)
I'm having a virtual baby shower, and I'd love if you could attend!!
I've never done one of these, and I imagine that there are dozens of ways you could do them, but here is how and why we're doing it.
Since we initially found out about Ewan's congenital heart defect, the blogging community has become very, very important to us. Through blogging (and other social media like Twitter), we've been connected to other families who have been through what we are facing and about to face -- you are the people who truly understand what it's like to have a child with a congenital heart defect.
We've also connected with many others, who though they may not have faced the same things, have faced other extraordinary challenges with their pregnancies and in the first weeks, months, and years of their children's lives. We've connected with so many amazing people who have offered and continue to offer a level of encouragement, love, and support that, on a daily basis, blows me away. You are ALL integral parts of the team we have supporting us.
If you're reading this blog, this is you.
The point of this event is not to secure more gifts. Don't get me wrong, if you want to send us something, we would love and cherish it. The goal of this virtual baby shower is for us (and Ewan, when he's old enough to read it) to have a tangible expression of the prayers, encouragement, support, and love that you have already been showering on our family.
Here's what you can do to participate:
1. Send a note!
Send an email to my sister Kaari at IRAAK413 [at] aol [dot] com with a note of encouragement, prayer, love, your own story ... whatever you like. This can be addressed to me, Ewan, James, or all three of us. Whatever moves you, however you feel led. Feel free to include pictures or anything that can be attached in an e-mail. Don't limit yourself!!
2. It doesn't have to fit with a particular schedule.
The great thing about the "virtual" element of this is that it's not something you have to send or be available for at any particular time -- it's whenever it suits you (we just aren't savvy or tech-y enough to do it "live"). If that time is in your pajamas at 1 a.m. on a Tuesday, I'll never know! The notes will be collected, printed out, and read at my shower. Kaari will be taking video of when these notes are read (again, this isn't live because we aren't that hip) and we'll post it to the blog at a later time.
3. We will tape everything for you to see later.
"Later" is operative word here. Once we receive everything, the e-mails will be printed out and read aloud (hopefully at my upcoming shower on September 11) and videotaped, and will later be posted on the blog so everyone can see and share in the love of the day (which you can also read/watch in your pajamas at 1 a.m.). I won't be seeing or hearing anything until these are read aloud, so I will definitely be surprised! After Ewan is born, I intend to include all of these in a book with photographs taken throughout my pregnancy and during his hospital stay (and will definitely share that here as well when the time comes).
4. It's really not about more stuff.
Honestly. In the days following Ewan's diagnosis and all the days that have followed since then, it's affirmations of prayer, words of encouragement, shared stories, and offers of hope that have sustained us. It's been your words, and that's what this is about. Your words: prayer, encouragement, shared stories and experience, and hope. It's almost impossible to describe how much they've meant to us, but if I could try, I'd say your impact was HUGE. Massive. Lots and lots and lots. Somewhere in that range. ;o)
I will post a reminder on Monday, September 6 (or thereabouts) and will also include a button on the sidebar with a link to this post so you can access this information easily.
If you have any questions I haven't answered, feel free to leave a note in the comments, and I will be sure to address it. Thank you for your continued love and support, and I hope you can attend!
P.S. If you'd like to mail something, send an e-mail to the same address listed above to find out where you can send it. If you want to choose something from our registry, you can find our listing at Target.com.
I've never done one of these, and I imagine that there are dozens of ways you could do them, but here is how and why we're doing it.
Since we initially found out about Ewan's congenital heart defect, the blogging community has become very, very important to us. Through blogging (and other social media like Twitter), we've been connected to other families who have been through what we are facing and about to face -- you are the people who truly understand what it's like to have a child with a congenital heart defect.
We've also connected with many others, who though they may not have faced the same things, have faced other extraordinary challenges with their pregnancies and in the first weeks, months, and years of their children's lives. We've connected with so many amazing people who have offered and continue to offer a level of encouragement, love, and support that, on a daily basis, blows me away. You are ALL integral parts of the team we have supporting us.
If you're reading this blog, this is you.
The point of this event is not to secure more gifts. Don't get me wrong, if you want to send us something, we would love and cherish it. The goal of this virtual baby shower is for us (and Ewan, when he's old enough to read it) to have a tangible expression of the prayers, encouragement, support, and love that you have already been showering on our family.
Here's what you can do to participate:
1. Send a note!
Send an email to my sister Kaari at IRAAK413 [at] aol [dot] com with a note of encouragement, prayer, love, your own story ... whatever you like. This can be addressed to me, Ewan, James, or all three of us. Whatever moves you, however you feel led. Feel free to include pictures or anything that can be attached in an e-mail. Don't limit yourself!!
2. It doesn't have to fit with a particular schedule.
The great thing about the "virtual" element of this is that it's not something you have to send or be available for at any particular time -- it's whenever it suits you (we just aren't savvy or tech-y enough to do it "live"). If that time is in your pajamas at 1 a.m. on a Tuesday, I'll never know! The notes will be collected, printed out, and read at my shower. Kaari will be taking video of when these notes are read (again, this isn't live because we aren't that hip) and we'll post it to the blog at a later time.
3. We will tape everything for you to see later.
"Later" is operative word here. Once we receive everything, the e-mails will be printed out and read aloud (hopefully at my upcoming shower on September 11) and videotaped, and will later be posted on the blog so everyone can see and share in the love of the day (which you can also read/watch in your pajamas at 1 a.m.). I won't be seeing or hearing anything until these are read aloud, so I will definitely be surprised! After Ewan is born, I intend to include all of these in a book with photographs taken throughout my pregnancy and during his hospital stay (and will definitely share that here as well when the time comes).
4. It's really not about more stuff.
Honestly. In the days following Ewan's diagnosis and all the days that have followed since then, it's affirmations of prayer, words of encouragement, shared stories, and offers of hope that have sustained us. It's been your words, and that's what this is about. Your words: prayer, encouragement, shared stories and experience, and hope. It's almost impossible to describe how much they've meant to us, but if I could try, I'd say your impact was HUGE. Massive. Lots and lots and lots. Somewhere in that range. ;o)
I will post a reminder on Monday, September 6 (or thereabouts) and will also include a button on the sidebar with a link to this post so you can access this information easily.
If you have any questions I haven't answered, feel free to leave a note in the comments, and I will be sure to address it. Thank you for your continued love and support, and I hope you can attend!
P.S. If you'd like to mail something, send an e-mail to the same address listed above to find out where you can send it. If you want to choose something from our registry, you can find our listing at Target.com.
11 August 2010
love & light
Thank you all so much for your comments on my last post -- because of the kindness of others, I've met so many moms who have had babies with Tetralogy of Fallot, and/or survived it themselves. I'm meeting many families who have walked and are walking a path with other CHDs. It's so encouraging to know that we are surrounded by the love and prayers of so many and that we won't walk this path alone. You know what we're facing and about to face -- and I'm so thankful that you're here and have welcomed us so readily into this community.
Early in my pregnancy, I was pretty sick. I was throwing up fairly regularly until about 19 weeks. This didn't leave much time (or inspiration ... or energy, for that matter) for my photography and other creative pursuits.
And now I find I can hardly stop! I wouldn't wish a CHD on any family, but I will say that knowing about Ewan's heart has helped me cherish this whole pregnancy experience much more than before I knew -- every moment I have with him is one I guard carefully. No kick or roll or nudge goes unnoticed or unappreciated. I thank God for my sore morning hips and for the fat ankles because uncomfortable as they are, it's all because I get to love and nurture this baby in such a unique way right now -- in a way that no one else can.
All of this has been inspiring to me creatively. As much as I love them, sometimes words are wholly inadequate, and so I try to find other ways to convey how I experience my pregnancy and this special time I have with Ewan. Here are a few recent works where I have really seen this to be true ...
NOTE: You can click on any of the photos to view a larger version of the image.
Thanks again everyone, really. Though our circumstances haven't changed, I'm feeling more at peace about knowing that God knew about this long before we did -- and that with all the ways in which He's blessed us along this journey so far, that He will not abandon us or this baby now. He will provide -- probably in a way we couldn't plan for or expect, but I know we can rely on it all the same.
BIG heart hugs to you all,
kirsten
Early in my pregnancy, I was pretty sick. I was throwing up fairly regularly until about 19 weeks. This didn't leave much time (or inspiration ... or energy, for that matter) for my photography and other creative pursuits.
And now I find I can hardly stop! I wouldn't wish a CHD on any family, but I will say that knowing about Ewan's heart has helped me cherish this whole pregnancy experience much more than before I knew -- every moment I have with him is one I guard carefully. No kick or roll or nudge goes unnoticed or unappreciated. I thank God for my sore morning hips and for the fat ankles because uncomfortable as they are, it's all because I get to love and nurture this baby in such a unique way right now -- in a way that no one else can.
All of this has been inspiring to me creatively. As much as I love them, sometimes words are wholly inadequate, and so I try to find other ways to convey how I experience my pregnancy and this special time I have with Ewan. Here are a few recent works where I have really seen this to be true ...
NOTE: You can click on any of the photos to view a larger version of the image.
 |
| bathed in love & light // by kirsten michelle (2010) |
In the one above, I was feeling inspired by how much love, support, and prayer we've received since we found out about Ewan's heart and made the effort to reach out to others for help. We really have been bathed in love and light since this whole experience began, and that has made all the difference in the world.
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| psalm 147:3 // by kirsten michelle (2010) |
This one is more of a collage: the anatomical drawing of the heart is by Leonardo da Vinci, and I added the textures and the words of the psalm. It seems so terribly obvious now that it's staring me in the face, but it was just a few nights ago that I considered this Psalm in relation to Ewan and to all the other heart families I've been meeting: so many people with incredible faith in spite of incredible odds. I thought of all of you when this came together.
 |
| fearfully & wonderfully made // by kirsten michelle (2010) |
This one combines the first photo with another da Vinci drawing of a baby in the womb. I love the idea of getting a peek inside, of getting a glimpse of the little person we are waiting for.
Thanks again everyone, really. Though our circumstances haven't changed, I'm feeling more at peace about knowing that God knew about this long before we did -- and that with all the ways in which He's blessed us along this journey so far, that He will not abandon us or this baby now. He will provide -- probably in a way we couldn't plan for or expect, but I know we can rely on it all the same.
BIG heart hugs to you all,
kirsten
09 August 2010
brand spankin' new "team ewan" buttons!!
Hi all --
Just wanted to let you know that some NEW Team Ewan buttons have been added to the buttons page here on Team-Ewan.com. Now there are even more the ways to spread the word!
I've got a new post in the works -- this was a pretty nutty weekend for us. I'll tell you all about it soon ...
Just wanted to let you know that some NEW Team Ewan buttons have been added to the buttons page here on Team-Ewan.com. Now there are even more the ways to spread the word!
I've got a new post in the works -- this was a pretty nutty weekend for us. I'll tell you all about it soon ...
Team Ewan Icon (240 x 177)
Team Ewan Square (180 x 180)
03 August 2010
one thing
I read a blog post just a couple weeks ago in which the author asked the following:
As I considered the question, I surprised even myself by not wishing Ewan's Tetralogy of Fallot away. It depends on the day you ask me, of course. There are plenty of days when given the chance, I would wish (quickly and easily, without a thought) to have it all taken back. I would still want Ewan, just with a healthy heart, and with the knowledge that we could take him home and not worry about all the things we are going to be worrying about once he is here.
It's not that I like the fact that he has Tetralogy of Fallot, or any heart defect for that matter. It's not that I would wish for it, for us or for anyone. But if I had the power to undo the diagnosis, I assume that I would also being undoing all the good that's come from it already.
I would lose the people I have met who have been so encouraging -- the people who have been through it before and who are going through it now. I would lose the knowledge and the experience of what it is to open myself up, to say that this is scary as hell, to be surrounded by people who can encourage, pray, think good thoughts, and offer experience. I would lose, I think, some of that deeply piercing and poignant love that I have for my son. Mama Bear would not, perhaps, have as much of an edge as she does. Life is precious and delicate even without complications like these, but what we learned about his heart made this particularly weighty with us. Not a single moment is taken for granted. Not a single kick, nudge, or roll goes unappreciated. The obvious presence of life is deeply treasured.
I know as I say all this that his birth will change everything -- that is when the real difficulty will begin, when we throw all those numbers and all those other stories out the window and wonder what our family's story will be. Right now, it is all preparation -- doing all we can to get ourselves ready (and our medical team doing the same) and anticipation -- not knowing what to expect, wondering what it will be like when we are immersed in the waking, breathing reality of CHDs and NICUs and surgeries.
I know I'm going to weep. I know I'm going to sit and wait in hospital waiting rooms more than I want to, hopped up on equal parts dread and hope. I know I'm going to have days where I fall apart completely.
And I know you are going to be here. I know that you're pulling for us, and that you're pulling for this baby. The only thing that will make this journey even remotely bearable is that we don't make it alone.
If you had the power to change any one thing about your life right now, what would it be?
As I considered the question, I surprised even myself by not wishing Ewan's Tetralogy of Fallot away. It depends on the day you ask me, of course. There are plenty of days when given the chance, I would wish (quickly and easily, without a thought) to have it all taken back. I would still want Ewan, just with a healthy heart, and with the knowledge that we could take him home and not worry about all the things we are going to be worrying about once he is here.
It's not that I like the fact that he has Tetralogy of Fallot, or any heart defect for that matter. It's not that I would wish for it, for us or for anyone. But if I had the power to undo the diagnosis, I assume that I would also being undoing all the good that's come from it already.
I would lose the people I have met who have been so encouraging -- the people who have been through it before and who are going through it now. I would lose the knowledge and the experience of what it is to open myself up, to say that this is scary as hell, to be surrounded by people who can encourage, pray, think good thoughts, and offer experience. I would lose, I think, some of that deeply piercing and poignant love that I have for my son. Mama Bear would not, perhaps, have as much of an edge as she does. Life is precious and delicate even without complications like these, but what we learned about his heart made this particularly weighty with us. Not a single moment is taken for granted. Not a single kick, nudge, or roll goes unappreciated. The obvious presence of life is deeply treasured.
I know as I say all this that his birth will change everything -- that is when the real difficulty will begin, when we throw all those numbers and all those other stories out the window and wonder what our family's story will be. Right now, it is all preparation -- doing all we can to get ourselves ready (and our medical team doing the same) and anticipation -- not knowing what to expect, wondering what it will be like when we are immersed in the waking, breathing reality of CHDs and NICUs and surgeries.
I know I'm going to weep. I know I'm going to sit and wait in hospital waiting rooms more than I want to, hopped up on equal parts dread and hope. I know I'm going to have days where I fall apart completely.
And I know you are going to be here. I know that you're pulling for us, and that you're pulling for this baby. The only thing that will make this journey even remotely bearable is that we don't make it alone.
03 July 2010
Prayer & Conversation Cards
Just a little over a week ago, I was thinking about the conversations I had been having with people about Ewan and his heart. This site is obviously one of the main hubs where all the updates are taking place. How could I direct people here easily -- hope they remember "Team Ewan" and will Google it once they're home, that they will remember how to spell his name, or that there's a dash in the website name?
And then I thought: business cards with all the information listed on them. Small, easy to distribute, and this way, people don't have to remember anything.
Problem solved. So I have these conversation cards -- way too many to distribute on my own. And that's where you come in. While I understand that I may be having these conversations way more than some of you might, I do know you're having them. I do know that you are praying, and are asking others to pray. In order to spur on those conversations, in order to pass on the word about Ewan, I'd like to send you some to give to those who are interested in joining our team.
The quantities are limited, but I can order more if needed. If you want to advocate Team Ewan amongst your friends, churches, or other groups, I'd like to send you some of these cards. I have 100 on hand now, so if I run out, I will definitely order more and send them out as soon the additional supply arrives.
If you're interested in receiving some, please drop an e-mail to team [dot] ewan [at] gmail [dot] com with your name and mailing address. I will send you five cards at first to distribute as you wish and to help support those conversations you're having with others.
NOTE: These cards are made from recycled materials and are 100% recyclable.
Blessings to you, and thanks for being a part of Team Ewan!!
P.S. Best wishes for a safe and happy fourth!!
And then I thought: business cards with all the information listed on them. Small, easy to distribute, and this way, people don't have to remember anything.
Problem solved. So I have these conversation cards -- way too many to distribute on my own. And that's where you come in. While I understand that I may be having these conversations way more than some of you might, I do know you're having them. I do know that you are praying, and are asking others to pray. In order to spur on those conversations, in order to pass on the word about Ewan, I'd like to send you some to give to those who are interested in joining our team.
Card Front:
Team Ewan logo
Card Back:
Team Ewan website, Facebook page, Twitter feed, and e-mail
The quantities are limited, but I can order more if needed. If you want to advocate Team Ewan amongst your friends, churches, or other groups, I'd like to send you some of these cards. I have 100 on hand now, so if I run out, I will definitely order more and send them out as soon the additional supply arrives.
If you're interested in receiving some, please drop an e-mail to team [dot] ewan [at] gmail [dot] com with your name and mailing address. I will send you five cards at first to distribute as you wish and to help support those conversations you're having with others.
NOTE: These cards are made from recycled materials and are 100% recyclable.
Blessings to you, and thanks for being a part of Team Ewan!!
P.S. Best wishes for a safe and happy fourth!!
30 June 2010
behold, the power of hashtags
I've had a Twitter account for awhile, but I admit I'm still not sure how best to use it. These are the kind of questions that run through my head while Twittering:
Is it redundant to tell people I've blogged? Is that annoying, or is it an accepted practice?
How in the world does anyone remember to check to see who's put an "@" symbol in front of your screen name?
How do people truly network and find other people on here?
Should I be using keywords or buzzwords for other people to find me?
And finally:
What's the deal with hashtags?
I knew they denoted a subject, and that people checking on that subject could find you that way, but I didn't know how they could be used, until today. I did one little innocent tweet about how much Ewan was kicking (which, by the way, has been A LOT today). Without really understanding why I was doing it, I added two hashtags to my tweet: #pregnancy and #CHD.
I could not have anticipated what was coming. And that's how Kristine Brite found me. She has quite the following already, and her own experience with having a baby born with a CHD. I was amazed to find such generosity and like-heartedness on Twitter!! She sent me a very sweet note and after checking out her own blog, I knew I had found someone whose support I could count on.
This connection has led to others. Simply using the #CHD hashtag has led to still more -- other mothers who, like me, are pregnant with a baby who has a congenital heart defect. Other people who, though not directly impacted by a CHD diagnosis in their own family, still care deeply and want support other families who must walk that path. It's extraordinary that in a medium where the connections made are more likely to be superficial, these are not. It reminds me daily, in more ways than one: we are not alone in this. And neither are they.
I'm going to sound like a broken record here, but I continue to be amazed at the power of social networking. Here we were, thinking we were the only ones who had been through this at first. When we started using blogs, e-mail, Facebook, and other social networks, we crossed paths with other people who have been where we are now.
Again, amazing. Let that be a lesson to me: use hashtags. Amen.
Is it redundant to tell people I've blogged? Is that annoying, or is it an accepted practice?
How in the world does anyone remember to check to see who's put an "@" symbol in front of your screen name?
How do people truly network and find other people on here?
Should I be using keywords or buzzwords for other people to find me?
And finally:
What's the deal with hashtags?
I knew they denoted a subject, and that people checking on that subject could find you that way, but I didn't know how they could be used, until today. I did one little innocent tweet about how much Ewan was kicking (which, by the way, has been A LOT today). Without really understanding why I was doing it, I added two hashtags to my tweet: #pregnancy and #CHD.
I could not have anticipated what was coming. And that's how Kristine Brite found me. She has quite the following already, and her own experience with having a baby born with a CHD. I was amazed to find such generosity and like-heartedness on Twitter!! She sent me a very sweet note and after checking out her own blog, I knew I had found someone whose support I could count on.
This connection has led to others. Simply using the #CHD hashtag has led to still more -- other mothers who, like me, are pregnant with a baby who has a congenital heart defect. Other people who, though not directly impacted by a CHD diagnosis in their own family, still care deeply and want support other families who must walk that path. It's extraordinary that in a medium where the connections made are more likely to be superficial, these are not. It reminds me daily, in more ways than one: we are not alone in this. And neither are they.
I'm going to sound like a broken record here, but I continue to be amazed at the power of social networking. Here we were, thinking we were the only ones who had been through this at first. When we started using blogs, e-mail, Facebook, and other social networks, we crossed paths with other people who have been where we are now.
Again, amazing. Let that be a lesson to me: use hashtags. Amen.
29 June 2010
an all-star lineup
We've got our core labor and delivery team assembled!! I've spoken about each of our team members separately, but I was just thinking about what an awesome and cohesive whole we have here. It struck me powerfully just last night just how amazingly blessed we are: we have a supportive, compassionate, and highly skilled core team assembled for the arrival of this baby.
Chris & Loren are the midwives who have been with us from the beginning. They will continue to be a central part of the team caring for us prenatally, and supporting us in transition to obstetrical care. They have been so available to us and incredibly compassionate, they have listed to and understood our fears and concerns. I look forward to our continued relationship, and already cannot wait to work with them again.
Annie is our doula, referred to us by our midwives. She is the only one we interviewed with, and that's all it took for us to be sold. Our first interview with her was the night before the first ultrasound where we initially found out about Ewan's heart. In the upheaval that followed, it took me two weeks to call her back and let her know what was going on. I don't even know how to describe how supportive, compassionate, and understanding she was. We were in limbo, and she instantly offered to aid us through that transition in any way she could. She called us to check in on us, and offered to be there for appointments, for tests, or in any other way she could be. She has supported not just me, but James and I as a couple. We're so thrilled to know her and have her be a part of our team. I can't imagine doing this without her.
When I last spoke to Annie on the phone, she said how much better and positive I sounded. I told her while we might still have our moments (though at this point, they are fewer and further between), we realize that we have cause to be hopeful, and that we are surrounded by the best possible team. No one would choose this, I said, but given the circumstances, I'm confident that we're in the best possible place.
Darra is (or will be!) our OB. Both the midwives and our doula have worked with her and have nothing but amazing and kind things to say about her. When I initially called to make the appointment, the receptionist instantly started raving about her. I was told about how kind, personable, and humorous she was. I was told about how straightforward and no-nonsense she is, but compassionate and tactful. When I called Annie to tell her that we'd be working with Darra, she let out a sigh of relief and joy for us. She's attended deliveries with her, and affirms that this is a doctor who trusts women, trust women's bodies, and is good at balancing the desires of the family to have the type of birth they want with the need to keep everyone safe and healthy. I haven't even met her yet, but three people I already trust and love are so confident she will be the right fit to round out our team, and this instills confidence in me.
The Heart Center @ Seattle Children's Hospital will be managing Ewan's care primarily after his birth, but they are also taking care of us now -- we've relied on the genetic counselor to answer questions that have popped up since our first scan with them. Additionally, we will have at least one more scan (most likely when I'm about 36 weeks) before Ewan's birth so their surgical team is able to anticipate as much as possible what they will need to do once he is born. Anyone we talk to who has had experience with Seattle Children's Hospital has nothing but positive things to say about them. Their team of specialists and surgeons are skilled and compassionate, and they really go the extra mile to make families as comfortable as possible. Parents have 24/7 visiting hours, and there are even family facilities on-site (including laundry, showers, and sleeping quarters).
You!! Just because you won't be at the birth doesn't mean you're not an integral part of our support team. I cannot under-emphasize just how important your support has been to us. Many of you have been able to empathize with your own NICU experiences. Many have offered to step in and support practically in ways we could not have known to anticipate. When I told Annie just about how many people are already loving on this baby and cheering him on, she expressed gratitude that this baby will come into the world being as loved as he is. And we know that he is. And we know that we are.
I am truly confident that given the circumstances, we could not possibly be in a better place.
So with that, I guess all there is to say is:
Chris & Loren are the midwives who have been with us from the beginning. They will continue to be a central part of the team caring for us prenatally, and supporting us in transition to obstetrical care. They have been so available to us and incredibly compassionate, they have listed to and understood our fears and concerns. I look forward to our continued relationship, and already cannot wait to work with them again.
Annie is our doula, referred to us by our midwives. She is the only one we interviewed with, and that's all it took for us to be sold. Our first interview with her was the night before the first ultrasound where we initially found out about Ewan's heart. In the upheaval that followed, it took me two weeks to call her back and let her know what was going on. I don't even know how to describe how supportive, compassionate, and understanding she was. We were in limbo, and she instantly offered to aid us through that transition in any way she could. She called us to check in on us, and offered to be there for appointments, for tests, or in any other way she could be. She has supported not just me, but James and I as a couple. We're so thrilled to know her and have her be a part of our team. I can't imagine doing this without her.
When I last spoke to Annie on the phone, she said how much better and positive I sounded. I told her while we might still have our moments (though at this point, they are fewer and further between), we realize that we have cause to be hopeful, and that we are surrounded by the best possible team. No one would choose this, I said, but given the circumstances, I'm confident that we're in the best possible place.
Darra is (or will be!) our OB. Both the midwives and our doula have worked with her and have nothing but amazing and kind things to say about her. When I initially called to make the appointment, the receptionist instantly started raving about her. I was told about how kind, personable, and humorous she was. I was told about how straightforward and no-nonsense she is, but compassionate and tactful. When I called Annie to tell her that we'd be working with Darra, she let out a sigh of relief and joy for us. She's attended deliveries with her, and affirms that this is a doctor who trusts women, trust women's bodies, and is good at balancing the desires of the family to have the type of birth they want with the need to keep everyone safe and healthy. I haven't even met her yet, but three people I already trust and love are so confident she will be the right fit to round out our team, and this instills confidence in me.
The Heart Center @ Seattle Children's Hospital will be managing Ewan's care primarily after his birth, but they are also taking care of us now -- we've relied on the genetic counselor to answer questions that have popped up since our first scan with them. Additionally, we will have at least one more scan (most likely when I'm about 36 weeks) before Ewan's birth so their surgical team is able to anticipate as much as possible what they will need to do once he is born. Anyone we talk to who has had experience with Seattle Children's Hospital has nothing but positive things to say about them. Their team of specialists and surgeons are skilled and compassionate, and they really go the extra mile to make families as comfortable as possible. Parents have 24/7 visiting hours, and there are even family facilities on-site (including laundry, showers, and sleeping quarters).
You!! Just because you won't be at the birth doesn't mean you're not an integral part of our support team. I cannot under-emphasize just how important your support has been to us. Many of you have been able to empathize with your own NICU experiences. Many have offered to step in and support practically in ways we could not have known to anticipate. When I told Annie just about how many people are already loving on this baby and cheering him on, she expressed gratitude that this baby will come into the world being as loved as he is. And we know that he is. And we know that we are.
I am truly confident that given the circumstances, we could not possibly be in a better place.
So with that, I guess all there is to say is:
Go, Team Ewan!!
17 June 2010
general updates & prayer needs
I just thought it would be apropos of me to take some time to tell you more about where we are at, our biggest needs for right now, and what we are anticipating in the coming weeks.
Ewan must be in training for the World Cup. Or kickboxing. Or something. Ever since I first felt Ewan's movements around 16 weeks, I could tell he was moving around a lot. The boy is ACTIVE! I don't know if it's because he's bigger now, but I feel him all the time now: up high, down low, to the side. Kicking, punching, rolling, and nudging his little hiney as hard as he can into the right side of my stomach. At our last appointment, we learned he was head down (he likes to press as hard as he can into my bladder), which explains why I'm feeling lots and lots of kicks up near my ribs and sternum. This is going to be fun!
We are still waiting to get some referrals for the right OB to round out our labor and delivery team. I'm really hoping to find someone that we like since I want this to be as positive an experience as possible. I've encountered a few docs (in general practice) over the course of my pregnancy that have an obviously negative view of midwifery. What I'm hoping for is to find someone who understands our reasons for choosing that route, and will honor our choices about how we want our son to be born. Frankly, I'm not in a mood to try and convince anyone that we have the right to make some choices about how the delivery will be.
Please pray that we find the right doctor as soon as possible. I'm trying to be patient, but I also understand that I'm more than 24 weeks into this pregnancy and would like as much time as possible to become acquainted with whoever our doctor is going to be. After all, this is one of the most important and deeply personal moments of our lives, and we want to make sure that the three of us are in the right hands.
What's coming next: Our next prenatal appointment is scheduled with the midwives on July 7, and this is when I get to do to the fun glucose test to screen for gestational diabetes. Nothing much to worry about there, I'm sure. As far as any additional testing goes for Ewan's heart, we asked the wonderful people at Children's Hospital if we could limit the number of additional scans (it's standard for them to do one every 4-6 weeks when a cardiac abnormality is detected) since they are not only stressful on us, but expensive as well. It isn't scheduled yet, but our plan is to have one scan done at 36 weeks so they can see how things are at that point is his development, and be as prepared as possible for when he is born.
That's about all I've got for now. A big hug to each of you, and thanks for continuing to pray for baby Ewan!
Ewan must be in training for the World Cup. Or kickboxing. Or something. Ever since I first felt Ewan's movements around 16 weeks, I could tell he was moving around a lot. The boy is ACTIVE! I don't know if it's because he's bigger now, but I feel him all the time now: up high, down low, to the side. Kicking, punching, rolling, and nudging his little hiney as hard as he can into the right side of my stomach. At our last appointment, we learned he was head down (he likes to press as hard as he can into my bladder), which explains why I'm feeling lots and lots of kicks up near my ribs and sternum. This is going to be fun!
We are still waiting to get some referrals for the right OB to round out our labor and delivery team. I'm really hoping to find someone that we like since I want this to be as positive an experience as possible. I've encountered a few docs (in general practice) over the course of my pregnancy that have an obviously negative view of midwifery. What I'm hoping for is to find someone who understands our reasons for choosing that route, and will honor our choices about how we want our son to be born. Frankly, I'm not in a mood to try and convince anyone that we have the right to make some choices about how the delivery will be.
Please pray that we find the right doctor as soon as possible. I'm trying to be patient, but I also understand that I'm more than 24 weeks into this pregnancy and would like as much time as possible to become acquainted with whoever our doctor is going to be. After all, this is one of the most important and deeply personal moments of our lives, and we want to make sure that the three of us are in the right hands.
What's coming next: Our next prenatal appointment is scheduled with the midwives on July 7, and this is when I get to do to the fun glucose test to screen for gestational diabetes. Nothing much to worry about there, I'm sure. As far as any additional testing goes for Ewan's heart, we asked the wonderful people at Children's Hospital if we could limit the number of additional scans (it's standard for them to do one every 4-6 weeks when a cardiac abnormality is detected) since they are not only stressful on us, but expensive as well. It isn't scheduled yet, but our plan is to have one scan done at 36 weeks so they can see how things are at that point is his development, and be as prepared as possible for when he is born.
That's about all I've got for now. A big hug to each of you, and thanks for continuing to pray for baby Ewan!
10 June 2010
updates, updates
Time flies
Somehow it seems much longer than three weeks ago that we found out about Ewan's heart. In many ways, it seems that we've traveled a million miles in the space of those weeks, and have cycled through more emotions than I knew existed.
But when I look at the calendar, it is in fact three weeks and a day since the initial diagnosis, and just over a week since having it confirmed by a pediatric cardiologist.
I haven't gone into any detail about the diagnosis for a lot of reasons, but mainly because it's been difficult to talk about or write about without ending up in a weepy mess. Another part of it is because as Ewan grows and the doctors see more, the diagnosis might vary by degrees, and we want to minimize our confusion (as well as yours) insofar as that is possible.
The current diagnosis
But now I think it's time to let you know what we're dealing with. This will help you understand what we're facing and if you're a praying person, to pray more specifically. The condition initially suspected and later confirmed by the pediatric cardiologist is called Tetralogy of Fallot. It is a rare congenital heart defect that consists of a combination of four defects in the heart:
Our plan, or what there is of it
We had an excellent meeting with our midwife this past Tuesday. I was anxious and tearful, so sure that this would be our last time seeing them. For the first half of my pregnancy, I was looking forward to giving birth in their birth center. But given the diagnosis, I was under no illusions about Ewan needing to be born in a hospital. During our time together, she did an amazing job of reassuring us about how fortunate that we are in our close proximity to Children's Hospital in Seattle.
She also provided the assurance that this did not mean we had to give up on the kind of birth we wanted. Wanting to make things as easy on us as possible, we decided to schedule our next prenatal appointment there. In the time being, she is going to pull on some of her resources to see who some good candidates for our doctor might be. This was a load off my mind, as I didn't know where to begin and given our already stressful circumstances, didn't want to have an argument with my doctor about having sought the care of midwives for my pregnancy.
Based on our understanding, there are some restrictions as to where we can deliver (having to do with the neo-natal services available at these hospitals) and the provider to whom the midwives would normally refer us (without hesitation) has privileges at a different hospital in the area, and we aren't sure if they have those resources available. We expect to hear in the next week or two so we can begin interviewing doctors and find the right person to round out our prenatal care and delivery team.
I can't tell you how reassuring it was, not only to be assured of the skill of the specialists and surgeons at Children's here in Seattle, and the ability still to have the kind of positive birth experience I want, but also to have our emotional responses to this experience validated. For the first time since this all started happening, I said out loud THIS ISN'T FAIR. She may have even said it before I did. Even though it doesn't change a thing, even though we had been assured multiple times this was not anyone's fault, it was incredibly cathartic to say it and to have it affirmed. I could cry openly and instead of looking down at a chart, she came closer to us, handed me a box of tissues, and put her hand on me. When I told her about how offended I was at how quickly references to our child went from "your baby" to "the fetus", and how many times "terminating the pregnancy" was mentioned, she affirmed it: No. This is your baby. This is your bean. You are already a mother. This has so much to do with why I adore this team of midwives.
In other news, we've also contracted a doula. We love her already! Annie is going to be a tremendous asset to both James and I. Before we had even officially signed a contract with her, she was offering us solace and reassurance, and offering a practical level of support that I just didn't know existed for expectant parents. If we want, she will go to appointments or tests with us -- whatever we need. She's just a phone call away.
So, that's about where we're at right now: waiting, but moving forward. While far from ideal, we are in a very good place all things considered.
Questions
We have gotten a few questions about all this that I thought I would answer here.
That's about it for now, I suppose. This mama is pretty tired, but know that I send my love and hugs to you. God bless you all!
much love,
mama k
Somehow it seems much longer than three weeks ago that we found out about Ewan's heart. In many ways, it seems that we've traveled a million miles in the space of those weeks, and have cycled through more emotions than I knew existed.
But when I look at the calendar, it is in fact three weeks and a day since the initial diagnosis, and just over a week since having it confirmed by a pediatric cardiologist.
I haven't gone into any detail about the diagnosis for a lot of reasons, but mainly because it's been difficult to talk about or write about without ending up in a weepy mess. Another part of it is because as Ewan grows and the doctors see more, the diagnosis might vary by degrees, and we want to minimize our confusion (as well as yours) insofar as that is possible.
The current diagnosis
But now I think it's time to let you know what we're dealing with. This will help you understand what we're facing and if you're a praying person, to pray more specifically. The condition initially suspected and later confirmed by the pediatric cardiologist is called Tetralogy of Fallot. It is a rare congenital heart defect that consists of a combination of four defects in the heart:
Ventricular-Septal Defect: This means there is a large hole between the right and left ventricles of the heart. This creates a situation where oxygen-poor blood is mixing with the oxygen rich blood.You can read a little more about Tetralogy of Fallot and its treatment here from the Seattle Children's Hospital website. It is a short page, but does a good job of explaining things without overloading you with information or medical jargon. We will have at least one more echo before Ewan is born so they can get as good a look as they can at anything that might have changed, but right after his birth is when the cardiology team at Children's will have the chance to assess the extent of the condition and develop a battle plan.
Pulmonary Stenosis: A narrowing of the pulmonary valve. The pulmonary artery's function is to carry blood away from the heart and to the lungs to be oxygenated. In a normal heart, the aorta and pulmonary artery are the same size. In Ewan's heart, they had difficulty even finding the pulmonary artery on the first ultrasound. The fetal echo at 22 weeks showed a very small pulmonary artery.
Right Ventricular Hypertrophy: A thickened right ventricle. The right ventricle wall is thickened because it has to work extra hard to get blood through the pulmonary artery.
Overriding Aorta: In a normal heart, the aorta leaves the heart from the left ventricle. With an overriding aorta, the aorta is leaving the heart from right over the ventricular septal defect.
Our plan, or what there is of it
We had an excellent meeting with our midwife this past Tuesday. I was anxious and tearful, so sure that this would be our last time seeing them. For the first half of my pregnancy, I was looking forward to giving birth in their birth center. But given the diagnosis, I was under no illusions about Ewan needing to be born in a hospital. During our time together, she did an amazing job of reassuring us about how fortunate that we are in our close proximity to Children's Hospital in Seattle.
She also provided the assurance that this did not mean we had to give up on the kind of birth we wanted. Wanting to make things as easy on us as possible, we decided to schedule our next prenatal appointment there. In the time being, she is going to pull on some of her resources to see who some good candidates for our doctor might be. This was a load off my mind, as I didn't know where to begin and given our already stressful circumstances, didn't want to have an argument with my doctor about having sought the care of midwives for my pregnancy.
Based on our understanding, there are some restrictions as to where we can deliver (having to do with the neo-natal services available at these hospitals) and the provider to whom the midwives would normally refer us (without hesitation) has privileges at a different hospital in the area, and we aren't sure if they have those resources available. We expect to hear in the next week or two so we can begin interviewing doctors and find the right person to round out our prenatal care and delivery team.
I can't tell you how reassuring it was, not only to be assured of the skill of the specialists and surgeons at Children's here in Seattle, and the ability still to have the kind of positive birth experience I want, but also to have our emotional responses to this experience validated. For the first time since this all started happening, I said out loud THIS ISN'T FAIR. She may have even said it before I did. Even though it doesn't change a thing, even though we had been assured multiple times this was not anyone's fault, it was incredibly cathartic to say it and to have it affirmed. I could cry openly and instead of looking down at a chart, she came closer to us, handed me a box of tissues, and put her hand on me. When I told her about how offended I was at how quickly references to our child went from "your baby" to "the fetus", and how many times "terminating the pregnancy" was mentioned, she affirmed it: No. This is your baby. This is your bean. You are already a mother. This has so much to do with why I adore this team of midwives.
In other news, we've also contracted a doula. We love her already! Annie is going to be a tremendous asset to both James and I. Before we had even officially signed a contract with her, she was offering us solace and reassurance, and offering a practical level of support that I just didn't know existed for expectant parents. If we want, she will go to appointments or tests with us -- whatever we need. She's just a phone call away.
So, that's about where we're at right now: waiting, but moving forward. While far from ideal, we are in a very good place all things considered.
Questions
We have gotten a few questions about all this that I thought I would answer here.
Do you need to have a C-section?
At this point, there is no reason to expect that I won't be able to labor and deliver as normal and have the natural, vaginal birth I want. We aren't sure how much monitoring will be necessary during labor. As long as Ewan is receiving his support from the placenta, he's doing just fine from a growth standpoint and in every other respect (especially a kicking standpoint, let me tell you). We are also very fortunate in that no other defects are visible -- fingers, toes, eyes, nose, mouth, spine, and all other major organs are looking just as they should. And even with a defect, he still has a healthy heart rate -- at our visit two days ago, his heart rate was in the 140s.Way to go, Ewan!
What's going to happen once he's born?
Once Ewan is delivered and is no longer receiving his support from the placenta, he's going to need to receive a medicine almost immediately that will keep the PDA open (this is a vessel that is open when the baby is in utero and normally closes a few days after birth). This will allow help ensure that the blood can flow as normally as possible, giving the doctors a chance to get the assessment of his heart that they need and develop a plan for his treatment. We've been told to expect a series of operations, the first occurring within a few days of his birth and extending through early childhood as the heart grows. We've been told to expect that this initial hospital stay will last 4-5 weeks.
What can we do?
Pray. Pray, pray, pray. Your notes of encouragement, even in those moments when you don't know what to say, also do much to bolster and buoy our spirits. We're still looking into the financial end of things, not knowing what our expenses will be. We're looking into all sorts of options in this regard, and have already had offers from people willing to initiate some fundraising if need be. We're also waiting to hear back from the hospital and the insurance company as to what we can expect.
We now have a page on Facebook for those supporting, encouraging, and praying for us. Click on the image below to join Team Ewan. My goodness, this child already has a Facebook page and he's not even out of the uterus yet!
I've also started a Team Ewan blog that will be totally dedicated to Ewan updates leading up to and after his birth. There will likely be some overlap between lattes & rainy days and this one, so please don't feel the need to check both.
That's about it for now, I suppose. This mama is pretty tired, but know that I send my love and hugs to you. God bless you all!
much love,
mama k
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