Please see Team-Ewan.com for more.
And please pray for Ewan Eliezer whose first and middle names mean this:
"God's grace", and "God is my help."
Amen, and amen.
Showing posts with label prayers for ewan. Show all posts
Showing posts with label prayers for ewan. Show all posts
24 September 2010
08 August 2010
he heals, he binds up
Textures used by Skeletal Mess
Collage by kirsten michelle
For Ewan, of course.
05 August 2010
watch over me
 |
| watch over me by kirsten michelle (2010) |
There aren't many words to my prayers these days. I find myself sending wordless thoughts and images, requests, petitions for which I cannot find the language, confident that the meaning of these things will not be lost in translation -- that they are better communicated as they are. No words. Just the pulses and surges of heart and soul.
So many unknowns looming in front of us: Ewan's heart. The lack of prospects (still -- after more than a year of looking) for James finding a job here. Given that, not knowing how soon after the birth I will need to return to work so we can make ends meet. These mysteries will break my heart if I let them.
Breathe. Trust. Pray.
Watch over me. Please, watch over me.
10 June 2010
as updated as we can be
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.
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 this site and that 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
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 this site and that 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
07 June 2010
so much to say
The past several days have been the oddest mixed bag of hope and of joy, of grief and near despair. We've felt positive and assured, and then we've felt like nothing could possibly lift our spirits. It's a wicked seesaw to be on. I've desperately wanted to feel normal and to maintain my excitement that we're having this beautiful child, and yet ...
And yet.
A steady stream of good days and good moments make the appearance of bad ones all the more surprising. They sneak up on me like a thief, and cause me to search despairingly in my empty hands for things on which I thought I had a grip: hope, and faith that all will be well. Before I'm able to identify my emotions or determine where they're coming from, I find I've become frustrated, snippy, and short-tempered. On the bad days, I hate who this is turning me into.
Determined not to let the diagnosis rob me of my genuine excitement, nor suppress the nesting instinct, I've prepared items for the nursery. I've hung up his clothes in the closet, and I've completed my registry (I think). This past weekend, I bought wood blocks of letters that spelled out his name and I painted them. I sing to him in the mornings and talk to him all day, and I smile whenever I feel him move, stretch, and kick. Sometimes I imagine his kicks as a baby form of Morse code, a way of communicating with me: Chill out, Mom. It will be okay. I'm going to be fine.
More than knowing that my child will be facing tremendous challenges in the first weeks, months, and years of his life, I'm grieving the loss of companions who have been mine for this journey thus far. Before I was pregnant, I knew I wanted to seek the care of midwives when it came to pregnancy and childbirth. For many reasons, it's a model of care I believe in. More than our caretakers, these midwives have been our advocates and supporters. They understand this is deeply personal to us, and it is personal to them too. I looked forward to having them attend this birth, to meeting my son in the comfortable birthing suite at their facility.
Now 23 weeks pregnant, I need to find a new provider, someone who is currently a stranger to me. Some think perhaps that this shouldn't be a big deal to me (since as a mother, I should naturally want to do what is best for our baby -- which I do), but I am losing something real here -- something deeply important to me, and I just don't know how to come to peace with this, or how to reconcile myself to another abrupt change in our plans. It isn't something I can easily dismiss.
All the what if's? plague me. Questions arise that if voiced, many would be quick to dismiss, telling me I can't dwell on things like that. I don't dwell, but denying the questions exist doesn't help either. They brew and they bubble inside me, and while I don't roll out the welcome mat for them, their presence lurks nearby like an unwelcome stranger. And then I turn into that person I hate again. My own company becomes unbearable to me, and my behavior hurts those around me.
What if he's one of the 5-10% of children that doesn't make it after surgery? What if my body has betrayed him? What if, in having another child, we find he or she has the same condition?
Many are quick to preach hope, and not without cause. The odds are in our favor with an early diagnosis, and with finding more than nine out of ten children living healthy, normal lives after a series of procedures to correct the issues present. We are in one of the best possible places we can be when it comes to the treatment available for the tiniest of hearts. In the weeks since learning the diagnosis, we've been connected with other parents whose own children were diagnosed with serious congenital heart defects (none of them the same as Ewan's, but still plenty serious) and have gone on to become thriving and active children. These are the only people who can really understand what we are and will be going through.
And then there's you. Praying for us, adding our request to the prayer chains at your churches, sharing it with your friends. We have people praying for this unborn child from coast to coast, and in countries across the world. Like my sister says, "We're going global!" There is so much love coming our way, so many advocating for Ewan's life, I cannot comprehend it. I want each of you in the same room, and to embrace every one of you tightly. I don't know how to say thank you. The words are a feeble representation of the heartfelt gratitude they are meant to convey, and yet we all know that even the most powerful and perfectly chosen words utterly fail in their reach at times like this.
I know we will get through this, and I know there is hope. I know there will continue to be those days that are good and those that are not. All we can do is take it a minute and a step at a time, praying through every moment, being open to what comes, talking about everything. We will breathe in and out, stepping again, and give ourselves and each other the grace that we need to be where we are.
And yet.
A steady stream of good days and good moments make the appearance of bad ones all the more surprising. They sneak up on me like a thief, and cause me to search despairingly in my empty hands for things on which I thought I had a grip: hope, and faith that all will be well. Before I'm able to identify my emotions or determine where they're coming from, I find I've become frustrated, snippy, and short-tempered. On the bad days, I hate who this is turning me into.
Determined not to let the diagnosis rob me of my genuine excitement, nor suppress the nesting instinct, I've prepared items for the nursery. I've hung up his clothes in the closet, and I've completed my registry (I think). This past weekend, I bought wood blocks of letters that spelled out his name and I painted them. I sing to him in the mornings and talk to him all day, and I smile whenever I feel him move, stretch, and kick. Sometimes I imagine his kicks as a baby form of Morse code, a way of communicating with me: Chill out, Mom. It will be okay. I'm going to be fine.
I hope that's what he's saying to me. I hope that he's right.
More than knowing that my child will be facing tremendous challenges in the first weeks, months, and years of his life, I'm grieving the loss of companions who have been mine for this journey thus far. Before I was pregnant, I knew I wanted to seek the care of midwives when it came to pregnancy and childbirth. For many reasons, it's a model of care I believe in. More than our caretakers, these midwives have been our advocates and supporters. They understand this is deeply personal to us, and it is personal to them too. I looked forward to having them attend this birth, to meeting my son in the comfortable birthing suite at their facility.
Now 23 weeks pregnant, I need to find a new provider, someone who is currently a stranger to me. Some think perhaps that this shouldn't be a big deal to me (since as a mother, I should naturally want to do what is best for our baby -- which I do), but I am losing something real here -- something deeply important to me, and I just don't know how to come to peace with this, or how to reconcile myself to another abrupt change in our plans. It isn't something I can easily dismiss.
All the what if's? plague me. Questions arise that if voiced, many would be quick to dismiss, telling me I can't dwell on things like that. I don't dwell, but denying the questions exist doesn't help either. They brew and they bubble inside me, and while I don't roll out the welcome mat for them, their presence lurks nearby like an unwelcome stranger. And then I turn into that person I hate again. My own company becomes unbearable to me, and my behavior hurts those around me.
What if he's one of the 5-10% of children that doesn't make it after surgery? What if my body has betrayed him? What if, in having another child, we find he or she has the same condition?
Many are quick to preach hope, and not without cause. The odds are in our favor with an early diagnosis, and with finding more than nine out of ten children living healthy, normal lives after a series of procedures to correct the issues present. We are in one of the best possible places we can be when it comes to the treatment available for the tiniest of hearts. In the weeks since learning the diagnosis, we've been connected with other parents whose own children were diagnosed with serious congenital heart defects (none of them the same as Ewan's, but still plenty serious) and have gone on to become thriving and active children. These are the only people who can really understand what we are and will be going through.
And then there's you. Praying for us, adding our request to the prayer chains at your churches, sharing it with your friends. We have people praying for this unborn child from coast to coast, and in countries across the world. Like my sister says, "We're going global!" There is so much love coming our way, so many advocating for Ewan's life, I cannot comprehend it. I want each of you in the same room, and to embrace every one of you tightly. I don't know how to say thank you. The words are a feeble representation of the heartfelt gratitude they are meant to convey, and yet we all know that even the most powerful and perfectly chosen words utterly fail in their reach at times like this.
Even so, what you say has not failed to touch our hearts. Please know that. Your words are a blanket and cocoon, a lifebuoy in a raging sea. I cling to them, wrapping myself in them over and over and over.
Much love,
k
02 June 2010
keeping it real & raw.
I wonder if I'll regret writing this with all this hanging around me, the ink still fresh and wet on this news, the unfolding reality giving rise to an exponentially increasing number of questions, as well as new and complex feelings. My emotional landscape is changing constantly and dramatically, ranging from sharp peaks to deep valleys with a few muddied level places in between. At a time like this, everything feels volatile, and change is the only thing that is a constant. None of it feels real.
Yesterday's fetal echo confirmed what the first doctor suspected. I'm not going to name the diagnosis here because I don't want it to show up anywhere on a Google search (even if it's the 10,394th page listed). There is a whole range of fetal heart defects that exist, and this one exists on the side of the range that, if your baby has to have a heart defect, you definitely don't want to land on. It is severe. There are holes in places there shouldn't be. There are vessels a mere fraction of the size they need to be.
Unless a miracle happens between now and his birth, Ewan will be spending the first weeks of his life in a hospital. He will need multiple tests and operations to deal with these abnormalities. Defects. Whatever you want to call them. Whatever the label, I hate them.
I can't tell you how much it hurts to know that I won't be able to take him home with us. That I will need to leave the care of my midwives more than halfway through my pregnancy and deliver in a hospital. That within hours of his birth, he will be transferred to a different location while I recover from labor and delivery. That in his first weeks of life, I will need to get in my car and drive to the hospital to see him, to touch him. That after he's born, he won't immediately occupy the room we have set aside for him.
I know he will be well cared for. I know these steps will be necessary if he's going to live and thrive. I know we are fortunate to be so near a facility that can handle this, and that we live in a time where babies who wouldn't otherwise have a chance of making it can grow and thrive thanks to some extraordinary advances in modern medicine. I know there is nothing I could have done to change this. According to the doctor, these things "just happen." No one really knows what causes it, only that it's something that likely started within the first three or so weeks of my pregnancy.
None of this makes it any easier. Believe me, I wish it did. It would make things easier on all of us; we wouldn't be huddled and weeping in the corner, and you wouldn't be shifting in your seat, searching for the right words or wondering if it's okay to hug us. We are walking a path no parent wants to walk, and having to make choices no parent wants to make.
I know that our feelings will continue to shift, change, and evolve. I know we aren't the first to experience this. I know that we will experience substantial hope, and that we will find peace and laughter in unexpected moments. I know that our son is a gift and a blessing, and already a joy to his parents. But it still hurts in a way no earthly tongue can describe, and only a supernatural and heavenly power can change or heal that.
This is a portion of what I wrote to my dear friend Christianne this morning:
Lord, have mercy.
Yesterday's fetal echo confirmed what the first doctor suspected. I'm not going to name the diagnosis here because I don't want it to show up anywhere on a Google search (even if it's the 10,394th page listed). There is a whole range of fetal heart defects that exist, and this one exists on the side of the range that, if your baby has to have a heart defect, you definitely don't want to land on. It is severe. There are holes in places there shouldn't be. There are vessels a mere fraction of the size they need to be.
Unless a miracle happens between now and his birth, Ewan will be spending the first weeks of his life in a hospital. He will need multiple tests and operations to deal with these abnormalities. Defects. Whatever you want to call them. Whatever the label, I hate them.
I can't tell you how much it hurts to know that I won't be able to take him home with us. That I will need to leave the care of my midwives more than halfway through my pregnancy and deliver in a hospital. That within hours of his birth, he will be transferred to a different location while I recover from labor and delivery. That in his first weeks of life, I will need to get in my car and drive to the hospital to see him, to touch him. That after he's born, he won't immediately occupy the room we have set aside for him.
I know he will be well cared for. I know these steps will be necessary if he's going to live and thrive. I know we are fortunate to be so near a facility that can handle this, and that we live in a time where babies who wouldn't otherwise have a chance of making it can grow and thrive thanks to some extraordinary advances in modern medicine. I know there is nothing I could have done to change this. According to the doctor, these things "just happen." No one really knows what causes it, only that it's something that likely started within the first three or so weeks of my pregnancy.
None of this makes it any easier. Believe me, I wish it did. It would make things easier on all of us; we wouldn't be huddled and weeping in the corner, and you wouldn't be shifting in your seat, searching for the right words or wondering if it's okay to hug us. We are walking a path no parent wants to walk, and having to make choices no parent wants to make.
I know that our feelings will continue to shift, change, and evolve. I know we aren't the first to experience this. I know that we will experience substantial hope, and that we will find peace and laughter in unexpected moments. I know that our son is a gift and a blessing, and already a joy to his parents. But it still hurts in a way no earthly tongue can describe, and only a supernatural and heavenly power can change or heal that.
This is a portion of what I wrote to my dear friend Christianne this morning:
I am jealous of every parent who's never gotten bad news, of every parent who has had a healthy, normal baby, of those who have never had to navigate this path, of those who have not had to weigh the sometimes tremendous cost of choosing life when its beginning looks so bleak and challenged. I've heard some of the traditional platitudes that inevitably come forward in the speech of those who mean well: things like "God doesn't give us anything we can't handle." Pardon me, but what a load of bull. Maybe He allows these types of trials precisely because He already knows we can't handle it -- that we would need to lean on Him chiefly, that all our dependencies would be on Him and not on what we could do, that we would humble ourselves and ask for help from those friends and family that surround us and stand with us. If there's one thing James and I are strikingly aware of, it's how completely helpless we are in this place. We can do nothing to effect the change we desire.And so here we are, at the head of a path we did not expect, wondering what kind of story will be told in the steps we take.I'm confident of God's infinite love for this little boy. I know His heart for children. I know this news does not surprise Him. Sometimes this knowledge is a tremendous comfort, and at others, it makes it all the more difficult to reconcile with the truth that I'm waking up in a world where babies are born with severe heart defects and don't get to go home with their parents after they're born. And somehow, inexplicably, the world keeps turning and the birds keep singing when the sun comes up.
Lord, have mercy.
28 May 2010
prayers for baby ewan
If you can't tell by the splashes of blue here now, James and I learned least week that we're having a baby boy. We were delighted to see the pictures of him dancing, waving, kicking, and moving all over the ultrasound. The technician had a hard time getting pictures at times, he was moving so much!!
We already had a name picked out: Ewan Eliezer. Our child has a name. Ewan is the Scottish/Gaelic form of "John" (for the apostle, our favorite personage of the New Testament, Christ excepted), and Eliezer is after Abraham's servant (mentioned by name in Genesis 15, and doing selfless and amazing things for his master Abraham in Genesis 24).
But there was also some less delightful news.
There may be something wrong with little Ewan's heart. The diagnosis is not definite at this point, so we've been scheduled for some additional testing, intended to give the doctors a clearer picture of what might be going on. It's entirely possible that everything is okay (Ewan's daddy's heart is unlike the hearts doctors are used to seeing) and that they just couldn't see well enough, or it is possible that there may be an actual defect. With this, we've also been introduced to the possibility of a chromosomal abnormality, such as Down's syndrome or something similar.
As you might imagine, the past week hasn't been easy. The tears I've cried and the grief I've expressed has come from places deeper than I knew existed, and hurt more than I knew was possible. The news stunned us; this was not what we were expecting with our ultrasound, nor (obviously) was it what we were hoping to hear. We didn't sleep well or at all in the first days after the news, and when I did, I had horrific and violent dreams. Over the course of the past week or so I've felt saddened, angry, guilty, disconnected, and completely robbed of my joy.
Though we are both in a better place now, the coming days and weeks will determine much in terms of the course of our care and where we deliver. Even before I was pregnant, I had my heart set on receiving my prenatal care exclusively from midwives and delivering in a birth center or at home. We love our midwives, and couldn't be happier about the care we've received. But if little Ewan needs to be born where the best medical care is immediately available to him, our plans will have to change. Much will have to change.
All this remains to be seen. Please be praying for the three of us -- though we are certainly hoping and praying for a whole and properly-functioning heart, any other diagnosis will not cause us to love or cherish Ewan any less. This next test is coming up this coming Tuesday (June 1) at 3 pm (Pacific Time).
Thank you for holding us up. The prayers of the saints are really what have held us up and kept us sane during the past week, and what will hold us up in the days and weeks to come.
We already had a name picked out: Ewan Eliezer. Our child has a name. Ewan is the Scottish/Gaelic form of "John" (for the apostle, our favorite personage of the New Testament, Christ excepted), and Eliezer is after Abraham's servant (mentioned by name in Genesis 15, and doing selfless and amazing things for his master Abraham in Genesis 24).
But there was also some less delightful news.
There may be something wrong with little Ewan's heart. The diagnosis is not definite at this point, so we've been scheduled for some additional testing, intended to give the doctors a clearer picture of what might be going on. It's entirely possible that everything is okay (Ewan's daddy's heart is unlike the hearts doctors are used to seeing) and that they just couldn't see well enough, or it is possible that there may be an actual defect. With this, we've also been introduced to the possibility of a chromosomal abnormality, such as Down's syndrome or something similar.
As you might imagine, the past week hasn't been easy. The tears I've cried and the grief I've expressed has come from places deeper than I knew existed, and hurt more than I knew was possible. The news stunned us; this was not what we were expecting with our ultrasound, nor (obviously) was it what we were hoping to hear. We didn't sleep well or at all in the first days after the news, and when I did, I had horrific and violent dreams. Over the course of the past week or so I've felt saddened, angry, guilty, disconnected, and completely robbed of my joy.
Though we are both in a better place now, the coming days and weeks will determine much in terms of the course of our care and where we deliver. Even before I was pregnant, I had my heart set on receiving my prenatal care exclusively from midwives and delivering in a birth center or at home. We love our midwives, and couldn't be happier about the care we've received. But if little Ewan needs to be born where the best medical care is immediately available to him, our plans will have to change. Much will have to change.
All this remains to be seen. Please be praying for the three of us -- though we are certainly hoping and praying for a whole and properly-functioning heart, any other diagnosis will not cause us to love or cherish Ewan any less. This next test is coming up this coming Tuesday (June 1) at 3 pm (Pacific Time).
Thank you for holding us up. The prayers of the saints are really what have held us up and kept us sane during the past week, and what will hold us up in the days and weeks to come.
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