It wasn't that long ago that we looked forward to all the frequent ultrasounds, we felt lucky that we could see our little guys so often but unfortunately that is getting weighed down now with mounting concerns.
Just two weeks after learning and beginning to adjust to the fact that we would have a child with some special needs, we learned that the doctors are becoming increasingly concerned about the boys size. The one thing that we had feared from the beginning (twin to twin transfusion) has NOT happened but instead there is a concern that neither boy is growing at the rate that they would expect and hope for.
At first, Mark and I were able to minimize their concerns, afterall the doctors seemed to be extra negative about everything thats "not perfect" when to us, no matter what the challenges, our sons are already perfect in our eyes. We just thought there's two of them in there, and hey, we are not giants by any means either so its okay if they are a little on the small size.
Now several ultrasounds later it has been confirmed that the placenta is not functioning properly and this is causing growth issues with the boys. They are now a full two and a half weeks behind their gestational age and the fear is that this might be a trend. I think the medical term is IUGR (intrauterine growth restriction).
We've transferred to the high risk pregnancy center last week and my hope was to hear some option, something that could be done to help improve the situation. Certainly they must have seen this before and with medical science being what it is, there would be something to try. Even with twin to twin transfusion, which we had learned about and feared from the beginning of our pregnancy, there are several procedures that can be done to immprove outcomes so......I was devastated to hear that there is really nothing that can be done to improve problems with the placenta, no magic medicine to improve blood flow, no procedure, no infusion of nutrients of some kind.
I can't tell you how tired we are of hearing there's nothing to do but "wait and see". They say there is no way of knowing if the placenta will improve on its own or deteriorate further. Shockingly the doctor stated if we were further along in the pregnancy, he would recommend delivering them now to give them a more optimal environment to grow---but ofcourse they are just barely a pound each right now so thats not a viable option. More and more I find I am dreading the once anticipated weekly ultrasounds because I am so afraid of what they will find or see next with my sweet baby boys.
Its amazing to me that just a few short weeks ago all I was worried about was if I had what it took to be a good mom to a child who would have extra health issues, extra challenges and all the ways our life might change. Now that seems so benign. I feel like I can do ANYTHING if just given the chance to be the mother of these children. The thought of not having them in our lives at the end of this road is unbearable.
I am trying so hard to stay positive, it doesn't sound like it here I know but I truly am, some moments are just harder than others. I sing to them, and talk to them often, tell them how much we love them and ask them to do their best to grow big and strong. I ofcourse pray and ask everyone that we talk to (or write to) to please pray for our boys too. I even force myself to eat just a little more each meal, extra snacks, because even though the experts say it won't have a direct impact, I think to myself, what if it helps just a little bit, I mean they can't know everything, right?
I relish every single time I feel movement and think it is their way of telling me "we are ok mom, don't worry." I know all I can do right now is let God work His miracle and just keep praying for the courage and strength to see my boys through whatever comes.
Sunday, April 5, 2009
Welcome to Holland
This gave me hope and inspiration after just learning our son would be born with spina bifida:
Welcome to Holland
By Emily Perl Kingsley, 1987. All rights reserved.
I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......
When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.
After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland." "Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."
But there's been a change in the flight plan. They've landed in Holland and there you must stay. The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place. So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.
It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts. But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."
And the pain of that will never, ever, ever, ever go away...because the loss of that dream is a very very significant loss. But...if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.
Welcome to Holland
By Emily Perl Kingsley, 1987. All rights reserved.
I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......
When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.
After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland." "Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."
But there's been a change in the flight plan. They've landed in Holland and there you must stay. The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place. So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.
It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts. But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."
And the pain of that will never, ever, ever, ever go away...because the loss of that dream is a very very significant loss. But...if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.
Thursday, April 2, 2009
The Big ultrasound (Spina Bifida Diagnosis)
Looking back at Week 18:
So we have felt "lucky" to have had multiple ultrasounds to see our little guys. The reason for the more frequent ones is due to the fact that they are sharing a placenta so they are at higher risk of not sharing so well, so they keep a closer eye for what is considered the higher risk time. Mark and I haven't complained, it has been giving us lots of chances to watch them develop and grow.
Week 18 was a well anticipated one, we were so anxious to find out the gender of our babies and to start planning things in our minds, and our home. We had had a couple scares before this, some bleeding that started at about 11 weeks but luckily stopped as suddenly as it started and some thyroid management issues of my own but other than that, the pregnancy has been pretty uneventful.
So the "big" ultrasound proved to be a "big" understatement. We had no idea how much that day would change our lives and literally pull the ground out from under us for a bit. We learned that one of our babies definitely looked like a boy (and assumed the other one obviously was as well) but they were spending way more time on the ultrasound than usual. You know when you start thinking "is everything ok?" and you get that "oh no" in your gut before you really know something is wrong, you just feel it? and then you try to say you're just being paranoid....but unfortunately we weren't. They discovered that day our "baby B" had Spina Bifida.
The doctor came in the room and went on to explain that this meant an area on the baby's spine did not form fully, which should happen very early, by the 28th day of pregnancy. For our baby, he says the spine was open at the top of the lumbar vertebrae, at L1, and most likely meant that he will be paralyzed from at least the waist down and would require surgery as soon as he was born. He went on to give us a lot of "possible" scenarios, all of them extremely negative and leading us to believe our child would have a poor quality of life and at the same time telling us the damage to his spine was already done, and there was nothing that could be done to improve his outcome. (they are doing experimental surgery in the womb currently for cases like this in several cities but we are not candidates since we are having twins.)
I STILL struggle talking about the "options" we were given over and over during this and subsequent appointments. We were told repeatedly that our son (now named Alex) would have a very poor quality of life but that we could always "try again." I only mention this because I've since learned how common this experience is. I had my faith to cling to and a husband who whole heartily felt the same way as me, but without these, I could see how someone could have chosen a different path, given all the "experts" predictions. My heart absolutely breaks just thinking of this.
Needless to say we left that appointment in a state of shock, and overwhelming grief took hold of us for awhile. We needed the time to mourn for our sons losses, the challenges that would lay before him and wondered if we would find the strength to become the special parents that this child deserved. Selfishly, I hate to admit we even questioned how this would alter our own future plans and as awful as that feels to acknowledge, I've since learned this is all very normal.
During this time, I devoted every spare minute to researching more about Spina Bifida, and found several incredibly supportive sites of people who had already taken this journey, or like me were just beginning. There I was blessed with both a wealth of information AND support and I credit these sites and people (in addition to our amazing friends and family) to helping me get through a very difficult time. Sites like babycenter.com--(search for spina bifida kids), and spinabifidaconnection.com, and numerous links from there to personal blogs which ultimately has inspired me to write my own.
I have to also say during this time, I have done a lot of soul searching and praying and do have a strong faith. I believe that everything happens for a reason, even if we can't possibly understand it at the time. And this is certainly not any type of lesson I wanted Mark and I or my son to have to learn but that is out of our hands. I do believe that in the midst of our suffering, God has put special people in our lives. I have "met" and learned a great deal from reading others personal stories/blogs. I could turn to them any time day or night when I was struggling and it helped me to feel less alone.
It is in part why I felt compelled to write our own journey. Maybe it will be a sort of a lifeline for someone, the way others were for me. Its also helpful just to have an outlet, a "purpose" of some sort while we anxiously await for our boys to arrive. And lastly, I was unable to find many stories that included twins and I worry about how I will manage the needs of two babies at the same time, with one likely needing hospitalizations, numerous appointments, etc. I hope that as I stumble down this road, just maybe I will learn some things that I can pass on to others who are behind me.
A glimpse three years later: What I've learned now: The "experts" are only the "experts" at DIAGNOSING Spina Bifida. They are most assuredly NOT the experts at loving or raising a child with SB or even TREATING someone who already has SB.
What they know is only from a textbook and too often an outdated one. No, raising a child with SB or any other disability is not a walk in the park. There are some extra worries, extra medical appointments, and many times some procedures, and equipment along the way. But the picture that was painted for us is soooooo drastically different than our reality and while there are no guarantees for any of us, From dozens of families I've talked to on line, our experience with SB is pretty typical.
Please feel free to message me if you've just learned of this diagnosis and want to know more from a Momma who is living day to day with this!!!!! I promise you while none of us would wish a diagnosis for our children, it is NOT the nightmare that is painted!
Just to illustrate that: here is a picture of my boys. You wouldn't know which one happens to have SB. They are both extremely happy and loving and absolute blessings in our life. Yes one of them happens to use "wheels" as he affectionately calls them to move around fast but otherwise they are so much more alike than they are different.
So we have felt "lucky" to have had multiple ultrasounds to see our little guys. The reason for the more frequent ones is due to the fact that they are sharing a placenta so they are at higher risk of not sharing so well, so they keep a closer eye for what is considered the higher risk time. Mark and I haven't complained, it has been giving us lots of chances to watch them develop and grow.
Week 18 was a well anticipated one, we were so anxious to find out the gender of our babies and to start planning things in our minds, and our home. We had had a couple scares before this, some bleeding that started at about 11 weeks but luckily stopped as suddenly as it started and some thyroid management issues of my own but other than that, the pregnancy has been pretty uneventful.
So the "big" ultrasound proved to be a "big" understatement. We had no idea how much that day would change our lives and literally pull the ground out from under us for a bit. We learned that one of our babies definitely looked like a boy (and assumed the other one obviously was as well) but they were spending way more time on the ultrasound than usual. You know when you start thinking "is everything ok?" and you get that "oh no" in your gut before you really know something is wrong, you just feel it? and then you try to say you're just being paranoid....but unfortunately we weren't. They discovered that day our "baby B" had Spina Bifida.
The doctor came in the room and went on to explain that this meant an area on the baby's spine did not form fully, which should happen very early, by the 28th day of pregnancy. For our baby, he says the spine was open at the top of the lumbar vertebrae, at L1, and most likely meant that he will be paralyzed from at least the waist down and would require surgery as soon as he was born. He went on to give us a lot of "possible" scenarios, all of them extremely negative and leading us to believe our child would have a poor quality of life and at the same time telling us the damage to his spine was already done, and there was nothing that could be done to improve his outcome. (they are doing experimental surgery in the womb currently for cases like this in several cities but we are not candidates since we are having twins.)
I STILL struggle talking about the "options" we were given over and over during this and subsequent appointments. We were told repeatedly that our son (now named Alex) would have a very poor quality of life but that we could always "try again." I only mention this because I've since learned how common this experience is. I had my faith to cling to and a husband who whole heartily felt the same way as me, but without these, I could see how someone could have chosen a different path, given all the "experts" predictions. My heart absolutely breaks just thinking of this.
Needless to say we left that appointment in a state of shock, and overwhelming grief took hold of us for awhile. We needed the time to mourn for our sons losses, the challenges that would lay before him and wondered if we would find the strength to become the special parents that this child deserved. Selfishly, I hate to admit we even questioned how this would alter our own future plans and as awful as that feels to acknowledge, I've since learned this is all very normal.
During this time, I devoted every spare minute to researching more about Spina Bifida, and found several incredibly supportive sites of people who had already taken this journey, or like me were just beginning. There I was blessed with both a wealth of information AND support and I credit these sites and people (in addition to our amazing friends and family) to helping me get through a very difficult time. Sites like babycenter.com--(search for spina bifida kids), and spinabifidaconnection.com, and numerous links from there to personal blogs which ultimately has inspired me to write my own.
I have to also say during this time, I have done a lot of soul searching and praying and do have a strong faith. I believe that everything happens for a reason, even if we can't possibly understand it at the time. And this is certainly not any type of lesson I wanted Mark and I or my son to have to learn but that is out of our hands. I do believe that in the midst of our suffering, God has put special people in our lives. I have "met" and learned a great deal from reading others personal stories/blogs. I could turn to them any time day or night when I was struggling and it helped me to feel less alone.
It is in part why I felt compelled to write our own journey. Maybe it will be a sort of a lifeline for someone, the way others were for me. Its also helpful just to have an outlet, a "purpose" of some sort while we anxiously await for our boys to arrive. And lastly, I was unable to find many stories that included twins and I worry about how I will manage the needs of two babies at the same time, with one likely needing hospitalizations, numerous appointments, etc. I hope that as I stumble down this road, just maybe I will learn some things that I can pass on to others who are behind me.
A glimpse three years later: What I've learned now: The "experts" are only the "experts" at DIAGNOSING Spina Bifida. They are most assuredly NOT the experts at loving or raising a child with SB or even TREATING someone who already has SB.
What they know is only from a textbook and too often an outdated one. No, raising a child with SB or any other disability is not a walk in the park. There are some extra worries, extra medical appointments, and many times some procedures, and equipment along the way. But the picture that was painted for us is soooooo drastically different than our reality and while there are no guarantees for any of us, From dozens of families I've talked to on line, our experience with SB is pretty typical.
Please feel free to message me if you've just learned of this diagnosis and want to know more from a Momma who is living day to day with this!!!!! I promise you while none of us would wish a diagnosis for our children, it is NOT the nightmare that is painted!
Just to illustrate that: here is a picture of my boys. You wouldn't know which one happens to have SB. They are both extremely happy and loving and absolute blessings in our life. Yes one of them happens to use "wheels" as he affectionately calls them to move around fast but otherwise they are so much more alike than they are different.
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