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.
Wednesday, June 26, 2013
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
Thursday, May 30, 2013
Why I Am Not Mad At God
DH and I got news over the last month that our sweet baby girl will not survive this pregnancy. It is absolutely devastating. Obviously we are heart broken and experiencing things no parent ever should. There is nothing in this world that we can do to help our little girl. And so we just have to wait, helplessly, until her heart finally gives up. As someone who likes to take-charge of situations and take actions to make things right, not being able to DO anything is very stressful.
To say that we are on an emotional roller coaster is an under statement. Yet in all of the emotions I am experiencing, I've never once been mad at God. I know several people do have those thoughts when walking this hard road and that it is completely normal. But to me it's never been a question of God's provision, protection, or grace. This isn't something that was a part of God's plan, although I believe he can use the situation to bring us closer to him.
I believe that God created this world to be perfect (Genesis 1:31 - 2:1). I believe that the studies of science show how intricate, beautiful, and intentional his design was. Things were made to work in a certain order. We were never meant to experience sickness, natural disasters, or death. But something happened to change all that. Sin entered the world, and with it came death, chaos, and destruction (Genesis 3, 1 Corinthians 15:56, Romans 5:12). The result is that we no longer live in a perfect world. We now have horrible natural disasters like floods and tornadoes that claim many lives. People get sick with diseases like cancer and pass away. Babies in the womb are not always formed correctly and pass away before they even get a chance to live. This is not a direct result of God's will or something that he directs to happen. It is the consequence of living in a broken world. And until this world is redeemed completely, these things will continue to happen. To "good" people and to "bad" people. No one is immune from the consequences of sin. However, through Jesus, we can have hope of redemption after this life.
But I believe we can have hope for our daughter even in the midst of our grief. I am reminded of the story of David (2 Samuel 12). David's child was very sick and about to die. David wept and pled with God for days to save his son. But once his child passed away, David's mourning was over. His servants were perplexed and asked why he was no longer weeping for his child. His response "I fasted and wept, thinking God might have mercy on me and the child would live. But now that he’s dead, why fast? Can I bring him back now? I can go to him, but he can’t come to me." I know the situations are different, but the pain of losing a child is the same. However, we have hope that someday we will go to be with Aubree even though she can't be with us right now. This passage also gives me hope that children go to heaven (something that is actually pretty divisive within Christian circles, not comforting to find out when going through a situation like this).
To be honest, it kind of irritates me when people say things like "God won't give you more than you can handle", or "God only gives things to people that are strong enough to handle them." The truth is, there is nothing in the Bible that states God won't give us more than we can handle when it comes to trials (although there is a similar passage regarding temptations - 1 Corinthians 10:13). This life is ALWAYS more than we can handle. If we could do this on our own, then what need would we have for Jesus? But what God has promised is that we will never be alone (Deuteronomy 31:6,8; Joshua 1:9; Matthew 28:20 to name a few). There is nothing we can face that he can not help us through (Luke 1:37). We never have to be afraid (2 Timothy 1:7). And we can approach God at ANY time (Hebrews 4:16). But each test and trial presents us with the opportunity to exercise our faith and grow closer to God (James 1:2-4).
Even though I am sad, I am hopeful. And I have so much peace. It is amazing to see how God provides enough grace to get through each day. We are finding joyful moments in the middle of the sadness. I am excited to meet my daughter even though I know we will have to say goodbye soon after. We hope and pray that God will work a miracle for Aubree. But even if one does not come, we will still praise him (Daniel 3:17-18 - a loose interpretation from me).
To say that we are on an emotional roller coaster is an under statement. Yet in all of the emotions I am experiencing, I've never once been mad at God. I know several people do have those thoughts when walking this hard road and that it is completely normal. But to me it's never been a question of God's provision, protection, or grace. This isn't something that was a part of God's plan, although I believe he can use the situation to bring us closer to him.
I believe that God created this world to be perfect (Genesis 1:31 - 2:1). I believe that the studies of science show how intricate, beautiful, and intentional his design was. Things were made to work in a certain order. We were never meant to experience sickness, natural disasters, or death. But something happened to change all that. Sin entered the world, and with it came death, chaos, and destruction (Genesis 3, 1 Corinthians 15:56, Romans 5:12). The result is that we no longer live in a perfect world. We now have horrible natural disasters like floods and tornadoes that claim many lives. People get sick with diseases like cancer and pass away. Babies in the womb are not always formed correctly and pass away before they even get a chance to live. This is not a direct result of God's will or something that he directs to happen. It is the consequence of living in a broken world. And until this world is redeemed completely, these things will continue to happen. To "good" people and to "bad" people. No one is immune from the consequences of sin. However, through Jesus, we can have hope of redemption after this life.
But I believe we can have hope for our daughter even in the midst of our grief. I am reminded of the story of David (2 Samuel 12). David's child was very sick and about to die. David wept and pled with God for days to save his son. But once his child passed away, David's mourning was over. His servants were perplexed and asked why he was no longer weeping for his child. His response "I fasted and wept, thinking God might have mercy on me and the child would live. But now that he’s dead, why fast? Can I bring him back now? I can go to him, but he can’t come to me." I know the situations are different, but the pain of losing a child is the same. However, we have hope that someday we will go to be with Aubree even though she can't be with us right now. This passage also gives me hope that children go to heaven (something that is actually pretty divisive within Christian circles, not comforting to find out when going through a situation like this).
To be honest, it kind of irritates me when people say things like "God won't give you more than you can handle", or "God only gives things to people that are strong enough to handle them." The truth is, there is nothing in the Bible that states God won't give us more than we can handle when it comes to trials (although there is a similar passage regarding temptations - 1 Corinthians 10:13). This life is ALWAYS more than we can handle. If we could do this on our own, then what need would we have for Jesus? But what God has promised is that we will never be alone (Deuteronomy 31:6,8; Joshua 1:9; Matthew 28:20 to name a few). There is nothing we can face that he can not help us through (Luke 1:37). We never have to be afraid (2 Timothy 1:7). And we can approach God at ANY time (Hebrews 4:16). But each test and trial presents us with the opportunity to exercise our faith and grow closer to God (James 1:2-4).
Even though I am sad, I am hopeful. And I have so much peace. It is amazing to see how God provides enough grace to get through each day. We are finding joyful moments in the middle of the sadness. I am excited to meet my daughter even though I know we will have to say goodbye soon after. We hope and pray that God will work a miracle for Aubree. But even if one does not come, we will still praise him (Daniel 3:17-18 - a loose interpretation from me).
Wednesday, May 29, 2013
Aubree Grace
We received wonderful news the first weekend in February. Our second baby was on the way. We had been hoping and praying for a sibling for DD. I anxiously awaited the first few weeks. Having lost my first pregnancy at eight weeks, I was really nervous until I had my first doctor appointment. Once we got to hear the baby's heartbeat and my blood work came back perfect, I finally started to relax and enjoy just being pregnant. Ok, I could have done without the morning sickness, but overall I was enjoying the process. I had been a nervous wreck the whole time with DD and never really enjoyed just being pregnant. This time was going to be different.
We passed the first trimester and made our official announcement to family and friends that our new little pumpkin should be arriving in October. Just in time to celebrate our fourth anniversary. We had kept everything from DD and intentionally purchased many things as gender-neutral as possible so they could be used for several kids to come. DH and I started to pick out names. Boys names are still something we can't agree on. But just like with DD, we found one single girl's name that we both loved. We were excited to find out the gender at the end of May so I could begin shopping all the summer garage sales for boy clothes if we needed to. I made an Amazon registry for the handful of items we would need for another baby. We started planning out arrangements for DD's room since she would need to share in our tiny house.
The last day of April I went for my routine 16-week checkup. I checked out just fine, but something was odd about the baby's heartbeat. The doctor still couldn't pick it up on the dopplar, so she took me in for a quick scan. What we saw was a beating heart, but even in my extremely limited knowledge of anatomy I could see something was very wrong. The doctor set up an appointment with the diagnostic imaging center for a better look the next morning. At that appointment we learned our baby's heart was not functioning correctly. The ultrasound technician had the actual doctor come into the room to explain to us what was happening. The next morning we were sent to the maternal fetal specialist for a better scan of the heart and more details on where to go.
The maternal fetal specialist confirmed our baby's heart was not functioning properly. They gave us an initial diagnosis of situs inversus (reversed organs), HLHS (under-performing heart chamber), and complete heart block (malfunction of the heart's pace maker). The doctor did an amnio test that day to see if these defects were caused by genetic factors or just random chance. Over the next two weeks we got the results of those tests back in pieces. What we learned is that our baby was fine as far as the genetics were concerned. We also learned that we were having a little girl.
Three weeks after our initial specialist appointment, we had another at the same place to see how Aubree was growing. Her growth was right on-track, all organs were present, and things seemed to be going ok. Except for her heart. The heart had started going into heart failure due to all the complex issues. The functioning muscles of the heart were trying to compensate for the under-performing muscles. This resulted in thickened walls of the heart that could not beat properly because they were too stiff and spongy, causing an even lower heart rate around 80 bpm. Due to the heart not working properly, fluid was starting to accumulate in several places within the baby - in the chest cavity around the heart and lungs, and in the belly. The doctor told us her chance of survival was almost 0% barring any kind of miracle. But just to be sure, he consulted with a pediatric cardiologist.
A week later we had an appointment with the pediatric cardiologist. We learned the initial diagnosis was not quite correct, but the issues present were even more severe than originally thought. Aubree has heterotaxy and several resulting issues. Her heart rate was down to only 50 bpm. Her belly is swelling with fluid, and the accumulation around her heart is causing it even more distress. Even if she could survive to full-term she would need complete reconstructive surgery on her heart and the arteries & veins. They recommended that we continue my normal course of care with the OB I typically see, and recommended palliative/hospice care for Aubree.
This month has been one hell of a roller coaster. I feel like we have lived several years in just the span of a few weeks. We went from excitedly expecting our second baby to facing the heart break of realizing we will not get to bring Aubree home with us. Through it all, DH and I have grown closer together and our faith has also grown. For now we will enjoy the times when we get to see her on "camera", we cherish our pictures, and we plan for the day when we have to say hello and goodbye at the same time. I love her kicks and flips.
We passed the first trimester and made our official announcement to family and friends that our new little pumpkin should be arriving in October. Just in time to celebrate our fourth anniversary. We had kept everything from DD and intentionally purchased many things as gender-neutral as possible so they could be used for several kids to come. DH and I started to pick out names. Boys names are still something we can't agree on. But just like with DD, we found one single girl's name that we both loved. We were excited to find out the gender at the end of May so I could begin shopping all the summer garage sales for boy clothes if we needed to. I made an Amazon registry for the handful of items we would need for another baby. We started planning out arrangements for DD's room since she would need to share in our tiny house.
The last day of April I went for my routine 16-week checkup. I checked out just fine, but something was odd about the baby's heartbeat. The doctor still couldn't pick it up on the dopplar, so she took me in for a quick scan. What we saw was a beating heart, but even in my extremely limited knowledge of anatomy I could see something was very wrong. The doctor set up an appointment with the diagnostic imaging center for a better look the next morning. At that appointment we learned our baby's heart was not functioning correctly. The ultrasound technician had the actual doctor come into the room to explain to us what was happening. The next morning we were sent to the maternal fetal specialist for a better scan of the heart and more details on where to go.
The maternal fetal specialist confirmed our baby's heart was not functioning properly. They gave us an initial diagnosis of situs inversus (reversed organs), HLHS (under-performing heart chamber), and complete heart block (malfunction of the heart's pace maker). The doctor did an amnio test that day to see if these defects were caused by genetic factors or just random chance. Over the next two weeks we got the results of those tests back in pieces. What we learned is that our baby was fine as far as the genetics were concerned. We also learned that we were having a little girl.
Aubree Grace
Three weeks after our initial specialist appointment, we had another at the same place to see how Aubree was growing. Her growth was right on-track, all organs were present, and things seemed to be going ok. Except for her heart. The heart had started going into heart failure due to all the complex issues. The functioning muscles of the heart were trying to compensate for the under-performing muscles. This resulted in thickened walls of the heart that could not beat properly because they were too stiff and spongy, causing an even lower heart rate around 80 bpm. Due to the heart not working properly, fluid was starting to accumulate in several places within the baby - in the chest cavity around the heart and lungs, and in the belly. The doctor told us her chance of survival was almost 0% barring any kind of miracle. But just to be sure, he consulted with a pediatric cardiologist.
A week later we had an appointment with the pediatric cardiologist. We learned the initial diagnosis was not quite correct, but the issues present were even more severe than originally thought. Aubree has heterotaxy and several resulting issues. Her heart rate was down to only 50 bpm. Her belly is swelling with fluid, and the accumulation around her heart is causing it even more distress. Even if she could survive to full-term she would need complete reconstructive surgery on her heart and the arteries & veins. They recommended that we continue my normal course of care with the OB I typically see, and recommended palliative/hospice care for Aubree.
This month has been one hell of a roller coaster. I feel like we have lived several years in just the span of a few weeks. We went from excitedly expecting our second baby to facing the heart break of realizing we will not get to bring Aubree home with us. Through it all, DH and I have grown closer together and our faith has also grown. For now we will enjoy the times when we get to see her on "camera", we cherish our pictures, and we plan for the day when we have to say hello and goodbye at the same time. I love her kicks and flips.
Subscribe to:
Posts (Atom)