Aubree Grace. Her first name means "elf-power" or "supernatural power." I especially like that second one, because I honestly believe that she's only hanging on to life right now by supernatural power. The doctors still have no explanation for why she is still alive. Ten weeks ago we were first finding out about her poor broken heart, and facing the decision of whether or not to continue on with the pregnancy. We were told that she wouldn't last more than a couple of days because her situation was so severe. We made the decision to continue the pregnancy and to try to enjoy her life, no matter how short it may be.
But she's held on. She's growing, stretching, moving all the time. Each checkup we have the doctors are amazed that she's still here. Heterotaxy happens in approximately 4:1,000,000 children born, or less than 20 in the US every year. It is pretty rare. Without serious interventions, more than 85% of children with this condition pass away in their first year of life. There are very few places in the US that see enough cases to really treat these kids. From what I have been able to determine from my endless Googling, Boston Children's Hospital seems to be the leader in care for these babies.
The doctors at our local children's hospital are great. But I can't help but feel like we are inconveniencing them by continuing to request care for her. They just don't have a way to treat her here and it seems like their only recommendation is palliative care. I know her chances may be slim, but if we stay in KC she has no chance. I started to feel a desperate need to find someone who would be willing to see her as a baby that needed help, and not a hopeless case to just write off.
So we've started asking for second opinions from other centers that are leaders in pediatric cardiology. The first place we were able to contact was CHOP. The doctor there responded that he would agree with our cardiologist here and he would not be willing to take on her case. He told us it would be better for her to pass away since the challenges she faces in order to survive are too great. That news hit me pretty hard. It's one thing to know she's facing tremendous odds and that passing away is a very likely possibility. It's another to hear someone say that your baby would be better off dead than alive. Someone who is supposed to be the expert in treating these babies. I know it wasn't said maliciously but the words still stung.
Reeling from that, I began to search online for some kind of hope. I couldn't give up at this point. She had passed the magical 24-week mark and I knew that I had to fight for a chance for her as long as she continued to hang on an grow. I came across a group of Heterotaxy families (parents and survivors of Heterotaxy) on Facebook. And that was the point I officially let myself start to have hope for Aubree. There I found families who have faced nearly identical situations with their children. Children that are now past toddler-hood and thriving. I found stories of survivors that are my age, with careers and marriages and children of their own.
With help from the group I was able to get Aubree's information sent off to Boston for another opinion. I've been researching medications that can be given while I am still pregnant to help increase her low heart rate and to help prepare her lungs in-case she is born early. What I have found is there are options available, even though the doctors here told me there were none. The medicines may not be effective for every baby but the studies I read showed nearly 50% chance of improvement, especially in the ventricular heart rate, which is where she has the most difficulty. When the other option is to wait for her to die, why wouldn't we want to give it a shot? It makes me mad that we were not even given the information by the doctors treating us.
So we continue our waiting game. Waiting for 29 weeks to get here so we can get our official transfer to OB care at the children's hospital so she can be delivered there. Waiting on second opinions. Collecting medical studies and journal articles to discuss with the OB (earning my doctorate in Googling!). And making as many memories as we can with her in the meantime.
Tuesday, July 9, 2013
Thursday, July 4, 2013
Making memories
Her feet in my ribs.
The way she scoots around so her butt sticks out on my right side.
The way she flips over and makes me feel sick as her elbows and knees press into my stomach.
The hard jabs that bounce off my hips or ribs and make my whole body shake.
The way she stops the second she hears her daddy's voice.
She loves ice cream and sweets. Especially Sprees (mommy's favorite!).
She does not like these fireworks.
Hiccups.
Kicking at the bed because she wants me to roll over.
Morning taps as I place my hands on her to tell her about what our day holds.
Calming down when her sister gives her a hug.
But kicking back when sister encroaches on her space as we read bedtime stories.
My sweet girl.
I only wish we had more time to make more memories.
The way she scoots around so her butt sticks out on my right side.
The way she flips over and makes me feel sick as her elbows and knees press into my stomach.
The hard jabs that bounce off my hips or ribs and make my whole body shake.
The way she stops the second she hears her daddy's voice.
She loves ice cream and sweets. Especially Sprees (mommy's favorite!).
She does not like these fireworks.
Hiccups.
Kicking at the bed because she wants me to roll over.
Morning taps as I place my hands on her to tell her about what our day holds.
Calming down when her sister gives her a hug.
But kicking back when sister encroaches on her space as we read bedtime stories.
My sweet girl.
I only wish we had more time to make more memories.
Wednesday, June 26, 2013
Real Thoughts from a Crappy Mommy
One child is dying and the other one seems to hate me. Sometimes I feel like the worst mom ever.
Aly has been acting out a lot lately. Mainly with me. She is obedient and pleasant for our babysitters, and even pretty good for DH. But when I see her she screams and runs away. She hits me, kicks me, tells me to go away. When I ask her to do something the answer is always "NO, Mommy, NO!" It's a constant fight to get her to do the simplest things like letting me change her diaper or brush her hair. She fights me even when I try to give her what she's asked for (like a new cup of milk).
I think she's having a hard time along with DH and I. But she just doesn't know how to deal with it or express what she wants. Not that she understands about Aubree, but she knows we are upset and stressed out and it affects her. And she's been passed off to family members a lot lately for appointments, MIL being out of town, and a couple of nights where I just didn't have it in me to deal with her because I could barely take care of myself. So her "normal" has been completely upended as well. I know it's all factoring into her behavior lately. I keep trying to be patient with her, speaking softly and giving her several opportunities to respond in the way she knows she should (like coming to me when I ask her to, or complying with diaper changes). But there are times when my patience wears thin and she ends up going to bed early or spending half the night in time-outs.
Tonight, though, we had a good night. She ate her dinner at the table with me and even seemed to enjoy it. After dinner she got to play with all of her toys and watch her favorite shows. The last couple of nights she's been at other places, so this was great for her to be in her most familiar territory. She played and even crawled up on the couch with me for some cuddles and tickle fights. When she took a bath tonight, she stayed in the tub and obeyed when I told her to sit down. Usually when bath time ends she has a melt-down, but tonight she cheerfully got out of the tub and let me dress her and brush her hair without a fight. She even let me brush her teeth and trim her toenails!! After we got ready for bed she went straight to DH to say goodnight instead of running away from us. Then she walked to her room, said "I luff you, Mommy! Night night time!" and went straight to her crib. I even got a hug when I picked her up to put her in the crib :) And then she settled in with her dolls and blankies and told me goodnight as I turned out the light and left the room.
I know she's just a toddler and that she doesn't really hate me. But it hurts a lot when she wants nothing to do with me :( I am glad we had a good night together though, and I hope these continue. I can't imagine what she's going through right now with everything so out of place from her normal schedule and a mommy & daddy that are sad all the time. It is really hard to balance parenting one child while grieving for another. I just hope we don't mess up too badly and that we all find our way through to the other side of this.
Aly has been acting out a lot lately. Mainly with me. She is obedient and pleasant for our babysitters, and even pretty good for DH. But when I see her she screams and runs away. She hits me, kicks me, tells me to go away. When I ask her to do something the answer is always "NO, Mommy, NO!" It's a constant fight to get her to do the simplest things like letting me change her diaper or brush her hair. She fights me even when I try to give her what she's asked for (like a new cup of milk).
I think she's having a hard time along with DH and I. But she just doesn't know how to deal with it or express what she wants. Not that she understands about Aubree, but she knows we are upset and stressed out and it affects her. And she's been passed off to family members a lot lately for appointments, MIL being out of town, and a couple of nights where I just didn't have it in me to deal with her because I could barely take care of myself. So her "normal" has been completely upended as well. I know it's all factoring into her behavior lately. I keep trying to be patient with her, speaking softly and giving her several opportunities to respond in the way she knows she should (like coming to me when I ask her to, or complying with diaper changes). But there are times when my patience wears thin and she ends up going to bed early or spending half the night in time-outs.
Tonight, though, we had a good night. She ate her dinner at the table with me and even seemed to enjoy it. After dinner she got to play with all of her toys and watch her favorite shows. The last couple of nights she's been at other places, so this was great for her to be in her most familiar territory. She played and even crawled up on the couch with me for some cuddles and tickle fights. When she took a bath tonight, she stayed in the tub and obeyed when I told her to sit down. Usually when bath time ends she has a melt-down, but tonight she cheerfully got out of the tub and let me dress her and brush her hair without a fight. She even let me brush her teeth and trim her toenails!! After we got ready for bed she went straight to DH to say goodnight instead of running away from us. Then she walked to her room, said "I luff you, Mommy! Night night time!" and went straight to her crib. I even got a hug when I picked her up to put her in the crib :) And then she settled in with her dolls and blankies and told me goodnight as I turned out the light and left the room.
I know she's just a toddler and that she doesn't really hate me. But it hurts a lot when she wants nothing to do with me :( I am glad we had a good night together though, and I hope these continue. I can't imagine what she's going through right now with everything so out of place from her normal schedule and a mommy & daddy that are sad all the time. It is really hard to balance parenting one child while grieving for another. I just hope we don't mess up too badly and that we all find our way through to the other side of this.
Monday, June 24, 2013
24 Weeks
We've officially made it to 24 weeks! This is a huge milestone in pregnancy, as it's considered the point where a baby has a chance of surviving outside the womb if born early. Although it's always best for them to stay in until closer to 40 weeks, with our situation now I had felt a sense of comfort and relief from knowing we had made it this far. Aubree is still moving around like crazy and keeps her feet permanently lodged in my right ribs. She's growing right on-track and I've gained 18lbs to go along with that. No idea how I can gain so much weight when she only weighs 1lb at the moment, but oh well. No...it can't possibly be all those cheeseburgers that I've been craving. Surely not. ;)
This weekend I started to read the book "I Will Carry You" by Angie Smith. The book is the story of Todd and Angie Smith's 4th daughter (Audrey) who was given a fatal prenatal diagnosis and how they continued their pregnancy and made the most of the time that they had with their daughter. I realized that I've read parts of her story before as I've perused the depths of the internet trying to find others that can relate to where we are now. A friend from church passed the book to me a few weeks ago. She had randomly come across it at an event and had been holding on to it for awhile as she wasn't quite sure what to do with it. Isn't it cool how God works things together like that? I made it half-way through the book before I had to put it down. As I read the story of Audrey's birth, their time with her, and then her funeral I was hit with the overwhelming thought that this is what we are headed for very soon. And I am not ready for it. I want to stay where I am right now. I want to keep those sweet little feet right up in my ribs. I want to be able to pat my belly and feel her thump back. I am not ready to say goodbye and to continue on with my life without her.
But that's the reality I am facing and those are the plans that I need to help finalize. Because apparently we need to act as though we don't have much time left.
This morning we went back to the fetal health center to check in on Aubree. We saw the director of fetal echocardiography and had an echo done. This time Aubree cooperated much better, even though she was still a wiggle worm. Because she's bigger and has less room, they were able to pin her down more and get better pictures. The scans were better and the doctors were able to put together a more complete picture of her situation. Unfortunately, that did not change her diagnosis. Aubree has complete heterotaxy. The pieces of her heart are not where they should be and not functioning properly. Valves are missing, leaking, or not letting blood through. Veins and arteries do not enter the heart where they should. The muscles of the heart are spongy and unable to really pump blood. The pacemaker of the heart is still not operating. Aubree's heart rate was about 49 bpm. Anything under 55 is considered to be in immediate danger of death. But she's been hanging in there for a month now with the same heart rate! They really don't know why she's still with us, and they don't know how much longer she can survive.
There are decisions DH and I need to make about what kind of care we want and where we want to deliver. Aubree will most likely not be born alive. Her heart issues are so severe that she's most likely going to pass away in the womb before delivery. Even if she were to be born alive, the children's hospital won't be able to do anything for Aubree until she's full-term. At that point her only hope really is to be born in a facility that could do a heart transplant immediately after birth. Which means we would have to travel, and a heart would have to be available (meaning some other family would have to first lose their precious baby), the heart would have to fit and have the right connections, Aubree's other organs would have to be fine, and she would have to survive the surgeries. In other words, it's nearly impossible. The doctor told us she had never seen a baby with a heart like Aubree's and gave her honest opinion that Aubree has no chance of survival outside the womb.
I want to believe in miracles and I know that one could happen. But I also realize that we will most likely be saying hello and goodbye to our daughter at the same time. Even if she were to be born alive, I don't know that I could consent to putting her through so much pain and suffering for such a low chance at survival. The thought of her being in pain just kills me. I would rather try to relieve any suffering she has and to let her go back to God. They have told us that she is not in pain now, which is comforting.
It is really hard to grieve and prepare a funeral while your child still flips and rolls around inside you. The most surreal feeling ever. There are moments when I let myself forget all that is wrong and just enjoy being pregnant. And there are moments when I try so hard to forget that I am pregnant because it is just too hard to face the reality that she's dying inside me and there's nothing in this world that I can do to help her. There are times when I wish this would never end and I could always keep her with me. And there are times when I just wish it was over already because I don't know how much more I can take. I want to just check-out mentally and emotionally. I don't want to connect with her any more, but instead start sealing off my heart so it doesn't hurt so bad. And then I feel guilty for having those thoughts and I don't want her to think that I don't love her. She's still my daughter and she's worthy of all the love and attention that I can give to her. So I keep willing myself to stay engaged with what's going on, even though it is horrendously painful.
This weekend I started to read the book "I Will Carry You" by Angie Smith. The book is the story of Todd and Angie Smith's 4th daughter (Audrey) who was given a fatal prenatal diagnosis and how they continued their pregnancy and made the most of the time that they had with their daughter. I realized that I've read parts of her story before as I've perused the depths of the internet trying to find others that can relate to where we are now. A friend from church passed the book to me a few weeks ago. She had randomly come across it at an event and had been holding on to it for awhile as she wasn't quite sure what to do with it. Isn't it cool how God works things together like that? I made it half-way through the book before I had to put it down. As I read the story of Audrey's birth, their time with her, and then her funeral I was hit with the overwhelming thought that this is what we are headed for very soon. And I am not ready for it. I want to stay where I am right now. I want to keep those sweet little feet right up in my ribs. I want to be able to pat my belly and feel her thump back. I am not ready to say goodbye and to continue on with my life without her.
But that's the reality I am facing and those are the plans that I need to help finalize. Because apparently we need to act as though we don't have much time left.
This morning we went back to the fetal health center to check in on Aubree. We saw the director of fetal echocardiography and had an echo done. This time Aubree cooperated much better, even though she was still a wiggle worm. Because she's bigger and has less room, they were able to pin her down more and get better pictures. The scans were better and the doctors were able to put together a more complete picture of her situation. Unfortunately, that did not change her diagnosis. Aubree has complete heterotaxy. The pieces of her heart are not where they should be and not functioning properly. Valves are missing, leaking, or not letting blood through. Veins and arteries do not enter the heart where they should. The muscles of the heart are spongy and unable to really pump blood. The pacemaker of the heart is still not operating. Aubree's heart rate was about 49 bpm. Anything under 55 is considered to be in immediate danger of death. But she's been hanging in there for a month now with the same heart rate! They really don't know why she's still with us, and they don't know how much longer she can survive.
There are decisions DH and I need to make about what kind of care we want and where we want to deliver. Aubree will most likely not be born alive. Her heart issues are so severe that she's most likely going to pass away in the womb before delivery. Even if she were to be born alive, the children's hospital won't be able to do anything for Aubree until she's full-term. At that point her only hope really is to be born in a facility that could do a heart transplant immediately after birth. Which means we would have to travel, and a heart would have to be available (meaning some other family would have to first lose their precious baby), the heart would have to fit and have the right connections, Aubree's other organs would have to be fine, and she would have to survive the surgeries. In other words, it's nearly impossible. The doctor told us she had never seen a baby with a heart like Aubree's and gave her honest opinion that Aubree has no chance of survival outside the womb.
I want to believe in miracles and I know that one could happen. But I also realize that we will most likely be saying hello and goodbye to our daughter at the same time. Even if she were to be born alive, I don't know that I could consent to putting her through so much pain and suffering for such a low chance at survival. The thought of her being in pain just kills me. I would rather try to relieve any suffering she has and to let her go back to God. They have told us that she is not in pain now, which is comforting.
It is really hard to grieve and prepare a funeral while your child still flips and rolls around inside you. The most surreal feeling ever. There are moments when I let myself forget all that is wrong and just enjoy being pregnant. And there are moments when I try so hard to forget that I am pregnant because it is just too hard to face the reality that she's dying inside me and there's nothing in this world that I can do to help her. There are times when I wish this would never end and I could always keep her with me. And there are times when I just wish it was over already because I don't know how much more I can take. I want to just check-out mentally and emotionally. I don't want to connect with her any more, but instead start sealing off my heart so it doesn't hurt so bad. And then I feel guilty for having those thoughts and I don't want her to think that I don't love her. She's still my daughter and she's worthy of all the love and attention that I can give to her. So I keep willing myself to stay engaged with what's going on, even though it is horrendously painful.
Friday, June 21, 2013
I can't believe it!
I won a blog contest! Seriously, I never win anything. But to win this contest in particular was especially encouraging :)
All That Love Can Do is a wonderful blog and resource for families choosing to continue their pregnancies after a fatal diagnosis. I stumbled upon them while we were first learning about Aubree, and I have been so encouraged by the stories on the blog and on Facebook. To know that there are other families out there walking this same road is encouraging, even though I wish with all my heart a group like this didn't have to exist.
Earlier this week, ATLCD hosted a giveaway for Epiphany Art Studio. These beautiful works of art are made by a wonderful mom who had to say goodbye to her sweet baby. Creating art was something that helped her to express the deep emotions and to bring comfort to herself and others. Really - you have to check out these pictures. There's something so haunting and yet extremely beautiful about the emotions that come through.
As a winner of the giveaway, I got to choose my own piece from Epiphany Art Studio! This is the image that I chose:
How beautiful is this piece? And how appropriate for my life in this moment. "Trust Through the Storm" - exactly what I am feeling and going through right now. I can't wait to get this and frame it.
Thank you, so much, All That Love Can Do and Epiphany Art Studio!!
All That Love Can Do is a wonderful blog and resource for families choosing to continue their pregnancies after a fatal diagnosis. I stumbled upon them while we were first learning about Aubree, and I have been so encouraged by the stories on the blog and on Facebook. To know that there are other families out there walking this same road is encouraging, even though I wish with all my heart a group like this didn't have to exist.
Earlier this week, ATLCD hosted a giveaway for Epiphany Art Studio. These beautiful works of art are made by a wonderful mom who had to say goodbye to her sweet baby. Creating art was something that helped her to express the deep emotions and to bring comfort to herself and others. Really - you have to check out these pictures. There's something so haunting and yet extremely beautiful about the emotions that come through.
As a winner of the giveaway, I got to choose my own piece from Epiphany Art Studio! This is the image that I chose:
 |
| by Epiphany Art Studio |
How beautiful is this piece? And how appropriate for my life in this moment. "Trust Through the Storm" - exactly what I am feeling and going through right now. I can't wait to get this and frame it.
Thank you, so much, All That Love Can Do and Epiphany Art Studio!!
Thursday, June 20, 2013
Family Adventures
We took Aly and Aubree to go visit DH's family over this last month. Oh what fun we had :)
First we drove to Chicago. And we quickly discovered that Aly does not sleep in the car. That made for a REALLY LONG drive! Once we were there she was great and we had a lot of fun visiting with FIL's family. We went to church on a farm on Sunday, but poor Aly could not figure out what we were doing and just did not understand having church in a barn. So she took off running around yelling "It's a farm!!" It was pretty funny :) We also got to visit the zoo. I think she liked the birds in the parking lot more than she liked the animals at the zoo. Aubree helped me crochet a special blanket just for her while we drove.
Aly and Aubree got to meet great-grandpa and great-grandma for the first time. It was actually mommy's first time meeting them as well. It was so nice to visit with everyone!!
And this last weekend we flew out to NM to visit with MIL's family. Aly did much better on the plane than she did in the car. I think it was more entertaining to fly up in the sky and to watch all the other people around us than to sit by herself in the backseat while mom & dad drove. Aly met cousins, aunts, and uncles. And she got to spend some quality time with great-grandpa. She really enjoyed hanging out with him in his favorite rocking chair :)
Aubree loved it when mommy ate spicy Mexican food - especially green chiles. She would dance and flip almost as soon as I started eating! And I don't know if she could feel the pressure changes while we were flying, but she was very squirmy while we were taking off and landing.
Next week we have another checkup for Aubree to see how she's doing. We've almost made it to 24 weeks! I didn't think it would be possible to get to get this far when they first told us how she was doing. I am so thankful for every flip and flutter that lets me know she's still hanging in there.
First we drove to Chicago. And we quickly discovered that Aly does not sleep in the car. That made for a REALLY LONG drive! Once we were there she was great and we had a lot of fun visiting with FIL's family. We went to church on a farm on Sunday, but poor Aly could not figure out what we were doing and just did not understand having church in a barn. So she took off running around yelling "It's a farm!!" It was pretty funny :) We also got to visit the zoo. I think she liked the birds in the parking lot more than she liked the animals at the zoo. Aubree helped me crochet a special blanket just for her while we drove.
Aly and Aubree got to meet great-grandpa and great-grandma for the first time. It was actually mommy's first time meeting them as well. It was so nice to visit with everyone!!
And this last weekend we flew out to NM to visit with MIL's family. Aly did much better on the plane than she did in the car. I think it was more entertaining to fly up in the sky and to watch all the other people around us than to sit by herself in the backseat while mom & dad drove. Aly met cousins, aunts, and uncles. And she got to spend some quality time with great-grandpa. She really enjoyed hanging out with him in his favorite rocking chair :)
Aubree loved it when mommy ate spicy Mexican food - especially green chiles. She would dance and flip almost as soon as I started eating! And I don't know if she could feel the pressure changes while we were flying, but she was very squirmy while we were taking off and landing.
Next week we have another checkup for Aubree to see how she's doing. We've almost made it to 24 weeks! I didn't think it would be possible to get to get this far when they first told us how she was doing. I am so thankful for every flip and flutter that lets me know she's still hanging in there.
Tuesday, June 11, 2013
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