This is not how I wanted our story to end. This was my worst fear come true.
It's so abrupt. So achingly permanent. Such a bottom level of sadness and grief I've never experienced.
And while I cannot begin to further describe how I'm feeling emotionally, there are some things I'm thanking God for and I wanted to share those with you.
I'll let you know what medically happened last weekend.
Friday after our Texas Children's appointments, it was late afternoon and we still hadn't eaten so we stopped for some lunch. I told Brian that I was so sad that I felt like I wanted to go see a movie or something just to get my mind off of the stress of the appointments. I was going to take my bed rest to the movies. But as we sat through the meal I realized how tired I was and how much my back was hurting. We decided I should go home and go to bed. So that's what I did.
Saturday, I was sitting on the couch typing the last blog post when I really started not to feel good. I figured it was a combination of being pregnant with twins and the stress of their health and appointments and just everything. My back was hurting so badly I was putting heating pads on it and doing everything I could think of to lessen the pain. I told Brian that I was just not feeling good. My body was just hurting. I went to lay down in bed. While I was laying there, it occurred to me that I might be running fever. So we took my temp and it was 100.1. I took Tylenol. The fever was not incredibly high but still something to call the doctor about during a high risk pregnancy. By this time it was late afternoon and I called the doctor and of course they wanted me to come down to TCH to be checked out. I wasn't happy about this because I felt so bad I just wanted to be in bed. But we went down there.
When we got there, I wasn't running fever anymore because I had taken Tylenol. I was really dehydrated so they put me on IV fluids. They told me I didn't have a kidney infection but that they suspected I was coming down with a bladder infection. They asked if I was having any contractions and I said no which was the absolute truth. We checked the babies out on an ultrasound and they were doing just fine. So after a few hours, they sent me home with a prescription for a specific bladder infection antibiotic.
Early Sunday morning around 3:00 a.m., I was awake because I'm always awake. And I noticed I was having contractions really irregularly. This was nothing new to me. I've had contractions off and on since the laser surgery. My back was still hurting so badly though and I couldn't get comfortable to sleep. By late morning, I noticed I may be having more contractions than usual so I downloaded a contractions timing app on my phone. Still nothing happening regularly. But I didn't feel good.
In the afternoon the contractions began to come 5 minutes apart. I was laying down, drinking lots of fluids and I took a warm bath, all trying to slow the contractions. Around 4:00 pm. my water broke but I wasn't quite sure that's what was happening. I thought things might just be irritated from the bladder infection. I called the doctor and they asked me to come in again. I really didn't want to. I had spent 3 out of the last 4 days down at TCH and I just didn't want to drive down again. But of course we had to. I took a shower and packed a bag, figuring I'd be put on magnesium for a couple of days to slow contractions. On the way down there, I realized that it was my water that had broken and the contractions began to come 3 minutes apart.
When we got there, it was confirmed. My water had broken, I was running a fever and I was in labor. Many times, if a woman's water breaks and she has no sign of infection, they can stop her labor until the babies are older. However, my body was showing signs of extreme infection. We were told they were very sorry, but I was sick and I was going to have to deliver our babies. No one said at the time that they wouldn't survive, but I knew what delivering babies at 20 weeks 6 days meant. It was like a slap in the face.
From there, things moved pretty quickly. I was in a lot of pain and labor was progressing fast. Because of the infection, my body was definitely trying to deliver quickly. Over the next hours, I got an epidural and we were just waiting for labor to progress. I took an Ambien to try and get a little sleep before delivery. Two hours later after some on and off sleep, I was asleep when my body started shaking uncontrollably. Like seizure shaking. Brian and my sister were in the room and my sister called a nurse. They checked and I was ready to push. I was still shaking and feeling really really sick. I delivered Madelyn and then Olivia and the babies were placed on my chest. They were alive! We hadn't known what to expect. If we would be able to meet them alive. But this is something I'm thankful to God for. Our precious babies were born alive and we got to spend some time with them before they went on to be with the Lord. What a precious gift that was. We talked to them. Sang to them. Prayed with them. Talked to them about the next voice they would be hearing, Jesus's voice. It was beautiful but heart wrenching.
While this was happening, my body got sicker. My fever spiked to 103, my blood pressure dropped to 73/43 and my heart rate was in the 140's. My white blood cell count was very high. I was in sepsis, a potentially fatal blood poisoning infection condition. While I was holding my beautiful girls, I looked over and there was a group of about 5 doctors talking about how to get me stabilized. It was suggested that I be sent to ICU. However, they decided to have a critical care doctor come down and analyze the situation first. I am so glad they didn't send me straight to ICU as I would have had to leave the babies behind while they were alive and that would have been even more devastating to me. That to me was another way God was taking care of me. He was right there in the situation. He allowed me that time with the girls.
I was physically fighting for my life and emotionally trying to say goodbye to my beautiful Madelyn and Olivia. The toughest moments of my whole life.
Our girls went to be with Jesus. And I was started on a crazy strong cocktail of IV antibiotics. The fever lowered but didn't go away. My heart rate came down a little but did not stabilize. My blood pressure did not come up. The rest of the day was spent grieving and trying to stabilize my body. I don't think I realized how sick I was until a few days later when several doctors explained to me how serious the situation was.
Later that evening, my temp lowered a bit more and my heart rate returned to a semi normal rate. My blood pressure stayed very low for 2 days. I stayed in the labor and delivery room an extra day until I was stable enough to go to a postpartum room. The next day my blood results were showing a lowered white blood cell count, meaning I was starting to fight the infection. But my red blood count was showing as severely anemic due to the sepsis. They talked about giving me a blood transfusion but decided to try IV bags of iron first. IV iron looks a lot like molasses and feels a lot like molasses in the veins. Not very fun. But still better than going through a blood transfusion.
By Wednesday, I was showing major signs of improvement. I was feeling better. My vitals were better. And the IV iron was working. The doctors were amazed and encouraged that my body bounced back so quickly. I don't believe that was a coincidence. I know that was God taking care of my body. Wednesday night, I got to go home but I'm still not fully healthy yet. The doctors think I'd had the infection for a while, maybe even since as long ago as the surgery. Which we knew was a risk of the surgery. So, my body is still healing from all the infection.
I have been on my knees praying for the health of my babies for months. Months. And I while I can't begin to explain how sad I am that they are not here on earth, I am thankful that God spared my life. Avery and Brian need me. And I'm grateful to be alive to take care of them. God has blessed me with life.
Thank you all for your kind messages. I've read each one and cried over each one. I'm so appreciative of your prayers and support. Please continue to pray as I heal physically. And please pray for us as we mourn this major loss of our children.
The last paragraph of my last blog post is haunting. But I still mean every bit of it. I'm so thankful for the blessing of being Madelyn and Olivia's parents.
I desperately miss our girls. I know I'll see them again someday.
Saturday, June 21, 2014
Saturday, June 14, 2014
Hearts
Yesterday, we had a fetal echo cardiogram on both of the babies hearts.
I'll start with Baby B. Our tiny little Baby B has a completely functional heart. There were no underlying problems. It is measuring much smaller than it should be based on gestational age but that is to be expected as she is still tiny. So her heart is proportional to the rest of her body. They did take note that she is pumping extra blood to her brain rather than to her extremities. This is seen when babies are under stress and they are trying to preserve the most important parts of their body. Our little baby is fighting really hard to survive and we are seeing the physical manifestation of that in how she is pumping this blood. The human body amazes me. So again, it appears that Baby B's most important health issue is that she is just not growing enough because of the SIUGR.
Baby A's heart situation is more difficult. As you might remember, she is fairly healthy except for the issues seen in her heart during the TTTS diagnosis. Before the laser surgery, she was in heart failure and we are no longer seeing this. The surgery corrected the amount of flow she was getting into her heart and now she has some normal heart function. However. The pulmonary valve issue has worsened. Her pulmonary value is continuing to narrow. When the pulmonary value narrows, the blood flow gets sort of stuck where the narrowing is and then spurts out on the other side, creating a bulge in the artery. Before the surgery, it was thought to be a mild condition. Yesterday, it was described as moderate. Her left ventricle is thickened but is functioning. There is no back flow or leakage in the tricuspid valve as seen before the surgery. As long as there continues to be no leakage in her valves and the left ventricle continues to grow, the pulmonary valve narrowing can be fixed with an operation after she is born. They would go in through an artery in her leg and put a balloon in her pulmonary valve to keep it open and to keep blood flowing through. If her left ventricle continues to thicken and has some trouble with keeping blood flowing through it, there is another more invasive open heart surgery option in which they would put in stents and direct some oxygenated blood flow directly to the lungs instead of through the left ventricle. So I guess the good news is that Baby A has some options. At this point, these heart problems are not seen as a life threatening condition. It is very serious but not life threatening. Of course, things could change and at that point, we would need to be worried about losing her. But as long as we stay on this track, it appears we have surgical options and we feel good about that.
Obviously, it's really tough to hear that your unborn baby continues to have heart problems and the only way to fix it is to have heart surgery while she's a premie newborn. I had hoped that all conditions would have improved. However, I am relieved that we seem to have good options for her and her survival. One of the hardest parts about grieving for our Baby B's health problems is that we cannot do anything about it. We just have to wait. I'm glad we can at least do something for Baby A.
It continues to be a very long road ahead. At each appointment this week, we were told things that added to the worry we already had. My heart is just broken for my precious twin girls. I'm sad that I couldn't have somehow provided a healthy pregnancy for them. In my head, I understand that it's not my fault. God is good and medical things just happen. But in my heart, a mama is supposed to take care of her children. The highlight of my life has been becoming a mother and taking care of Avery. It's difficult to feel like I'm taking good care of these twin girls when they have such significant health problems inside my body.
I don't understand why all this is happening. And I'm sure I won't in this lifetime. Sometimes it feels as through the grief is so much that I can't breathe. It feels as though the grief won't ever stop.
What I do know is that God created my girls. He somehow saw it fit to totally surprise us with identical twin girls and we are thankful for the blessing of them and for the blessing of being their parents, however long or brief that is.
Thanks for walking through this journey with us.
I'll start with Baby B. Our tiny little Baby B has a completely functional heart. There were no underlying problems. It is measuring much smaller than it should be based on gestational age but that is to be expected as she is still tiny. So her heart is proportional to the rest of her body. They did take note that she is pumping extra blood to her brain rather than to her extremities. This is seen when babies are under stress and they are trying to preserve the most important parts of their body. Our little baby is fighting really hard to survive and we are seeing the physical manifestation of that in how she is pumping this blood. The human body amazes me. So again, it appears that Baby B's most important health issue is that she is just not growing enough because of the SIUGR.
Baby A's heart situation is more difficult. As you might remember, she is fairly healthy except for the issues seen in her heart during the TTTS diagnosis. Before the laser surgery, she was in heart failure and we are no longer seeing this. The surgery corrected the amount of flow she was getting into her heart and now she has some normal heart function. However. The pulmonary valve issue has worsened. Her pulmonary value is continuing to narrow. When the pulmonary value narrows, the blood flow gets sort of stuck where the narrowing is and then spurts out on the other side, creating a bulge in the artery. Before the surgery, it was thought to be a mild condition. Yesterday, it was described as moderate. Her left ventricle is thickened but is functioning. There is no back flow or leakage in the tricuspid valve as seen before the surgery. As long as there continues to be no leakage in her valves and the left ventricle continues to grow, the pulmonary valve narrowing can be fixed with an operation after she is born. They would go in through an artery in her leg and put a balloon in her pulmonary valve to keep it open and to keep blood flowing through. If her left ventricle continues to thicken and has some trouble with keeping blood flowing through it, there is another more invasive open heart surgery option in which they would put in stents and direct some oxygenated blood flow directly to the lungs instead of through the left ventricle. So I guess the good news is that Baby A has some options. At this point, these heart problems are not seen as a life threatening condition. It is very serious but not life threatening. Of course, things could change and at that point, we would need to be worried about losing her. But as long as we stay on this track, it appears we have surgical options and we feel good about that.
Obviously, it's really tough to hear that your unborn baby continues to have heart problems and the only way to fix it is to have heart surgery while she's a premie newborn. I had hoped that all conditions would have improved. However, I am relieved that we seem to have good options for her and her survival. One of the hardest parts about grieving for our Baby B's health problems is that we cannot do anything about it. We just have to wait. I'm glad we can at least do something for Baby A.
It continues to be a very long road ahead. At each appointment this week, we were told things that added to the worry we already had. My heart is just broken for my precious twin girls. I'm sad that I couldn't have somehow provided a healthy pregnancy for them. In my head, I understand that it's not my fault. God is good and medical things just happen. But in my heart, a mama is supposed to take care of her children. The highlight of my life has been becoming a mother and taking care of Avery. It's difficult to feel like I'm taking good care of these twin girls when they have such significant health problems inside my body.
I don't understand why all this is happening. And I'm sure I won't in this lifetime. Sometimes it feels as through the grief is so much that I can't breathe. It feels as though the grief won't ever stop.
What I do know is that God created my girls. He somehow saw it fit to totally surprise us with identical twin girls and we are thankful for the blessing of them and for the blessing of being their parents, however long or brief that is.
Thanks for walking through this journey with us.
Wednesday, June 11, 2014
Roller coaster
This pregnancy has been quite the roller coaster. It's a roller coaster of emotions. Things seem to quickly change from week to week. I suppose there was a reason they told us that things would be "touch and go" after the surgery. I'm sure you're tired of reading the ups and downs of it. I understand. I'm tired of living the ups and downs of it.
Today marks 4 weeks since the laser surgery. We have come so far since learning about our initial diagnosis of Twin to Twin Transfusion Syndrome. We have had many obstacles in our story. TTTS and laser surgery, Baby B's additional diagnosis of SIUGR, the anterior placenta, the early onset of these diagnoses and therefore their severity. Through all these things, we have continued to have hope to bring two baby girls home. However, we have learned some facts today which are going to make having this continued hope even more difficult.
We had our 20 week growth and anatomy ultrasound today. This is the appointment I've been waiting for since our week of surgery. I knew it was going to be a big appointment in determining exactly how the girls were doing. Growth is a clear indication of how much blood flow they are getting and if it's enough.
Baby A is completely formed and has all of her correct body parts. She is growing really well, as well as a singleton baby would be at this point. We are so happy to know this. Since she has done so well to this point, it's easier to hope I will be able to deliver her and someday bring her home. Our fetal echocardiogram is later this week.
Baby B has grown a tiny amount in the last month, but she has not grown enough for them to think she will have a favorable outcome. This sweet sweet child is fully formed. All of her organs are visible and functioning. She continues to have a normal heart beat. However, she is just not growing. Baby A is 12 oz. Baby B is 7 oz. We knew she would have quite a time trying to catch up to her sister while in utero but it was necessary that she grow more than she has. She does have the improved cord flow that we saw last week but it appears that it's just not enough. As a mama, I see her moving around and interacting with her sister and she just seems so perfect to me. I just want to scream, "Someone please help her!" But the severity of the SIUGR is just working against us. Today they told me that the placenta appears to be even more abnormal that I had known. It is twice as thick as it should be and they think it has something to do with the poor cord placement and growth restriction for our Baby B. I desperately wish there was something more to be done. But the doctor's indication today was that everything is still just a waiting game. He did say at the end of our discussion that sometimes babies surprise them. Anything can happen. But it's difficult to ignore her limited growth.
The waiting and the unknown of all of it is so tough. The writer in me wants to phrase things eloquently for you but all I can think to say is THIS SUCKS. THIS JUST SUCKS.
I can't think of a way to end this post other than to say - Friends, please keep praying for a miracle. Pray that this little girl is one of the babies who surprise the doctors. And if we still lose her in the next weeks or months, that this sweet little soul will know nothing but love and go straight into Jesus' arms.
Love y'all.
Today marks 4 weeks since the laser surgery. We have come so far since learning about our initial diagnosis of Twin to Twin Transfusion Syndrome. We have had many obstacles in our story. TTTS and laser surgery, Baby B's additional diagnosis of SIUGR, the anterior placenta, the early onset of these diagnoses and therefore their severity. Through all these things, we have continued to have hope to bring two baby girls home. However, we have learned some facts today which are going to make having this continued hope even more difficult.
We had our 20 week growth and anatomy ultrasound today. This is the appointment I've been waiting for since our week of surgery. I knew it was going to be a big appointment in determining exactly how the girls were doing. Growth is a clear indication of how much blood flow they are getting and if it's enough.
Baby A is completely formed and has all of her correct body parts. She is growing really well, as well as a singleton baby would be at this point. We are so happy to know this. Since she has done so well to this point, it's easier to hope I will be able to deliver her and someday bring her home. Our fetal echocardiogram is later this week.
Baby B has grown a tiny amount in the last month, but she has not grown enough for them to think she will have a favorable outcome. This sweet sweet child is fully formed. All of her organs are visible and functioning. She continues to have a normal heart beat. However, she is just not growing. Baby A is 12 oz. Baby B is 7 oz. We knew she would have quite a time trying to catch up to her sister while in utero but it was necessary that she grow more than she has. She does have the improved cord flow that we saw last week but it appears that it's just not enough. As a mama, I see her moving around and interacting with her sister and she just seems so perfect to me. I just want to scream, "Someone please help her!" But the severity of the SIUGR is just working against us. Today they told me that the placenta appears to be even more abnormal that I had known. It is twice as thick as it should be and they think it has something to do with the poor cord placement and growth restriction for our Baby B. I desperately wish there was something more to be done. But the doctor's indication today was that everything is still just a waiting game. He did say at the end of our discussion that sometimes babies surprise them. Anything can happen. But it's difficult to ignore her limited growth.
The waiting and the unknown of all of it is so tough. The writer in me wants to phrase things eloquently for you but all I can think to say is THIS SUCKS. THIS JUST SUCKS.
I can't think of a way to end this post other than to say - Friends, please keep praying for a miracle. Pray that this little girl is one of the babies who surprise the doctors. And if we still lose her in the next weeks or months, that this sweet little soul will know nothing but love and go straight into Jesus' arms.
Love y'all.
Saturday, June 7, 2014
Short update
This week, Wednesday and Thursday gave me a bit of emotional whiplash and thankfully it all ended on a good note.
But I've been avoiding the blog because I don't want to relive it all by writing it all out. It was an incredibly stressful day of crying and thinking things were happening with the babies that wasn't really happening. In the interest of getting something written, I'll just say that I had a false positive on a test but everything is okay. I wish that hadn't happened but I'm so grateful to learn that it wasn't true.
During our ultrasound this week, Baby A is still looking good and we are looking forward to the fetal echocardiogram next week to see her progress.
Baby B has made small improvements! She has some improved blood flow in her cord which we are just so thankful for. She even has a little bit more amniotic fluid this week. We celebrate any little progress and friends, this is progress.
I'm finally feeling the babies move around and kick in my tummy. This is so reassuring to me! I probably can't feel things as well as I would have without the anterior placenta but I can still feel both of our girls and it's amazing. I'm grateful I don't have to go the week between each ultrasound wondering if the babies still had beating hearts. I can feel them!
I'm sorry for the short update. It's always emotional for me to write details all out and I just ran out of writing mojo this week. Thank you for praying for these sweet girls. It appears that some healing is happening!
One thing I'll say is that hearing your 2 year old praying each night for the "babies in mommy's tummy" is incredibly meaningful. We have never asked her to pray specifically for the babies or told her anything was wrong with the pregnancy. But she listens to the things we pray for and she has included the phrase "please help the babies grow" in her prayers. It is the sweetest and most genuine thing I've ever heard. I thank God everyday for the blessing of being Avery's mom.
But I've been avoiding the blog because I don't want to relive it all by writing it all out. It was an incredibly stressful day of crying and thinking things were happening with the babies that wasn't really happening. In the interest of getting something written, I'll just say that I had a false positive on a test but everything is okay. I wish that hadn't happened but I'm so grateful to learn that it wasn't true.
During our ultrasound this week, Baby A is still looking good and we are looking forward to the fetal echocardiogram next week to see her progress.
Baby B has made small improvements! She has some improved blood flow in her cord which we are just so thankful for. She even has a little bit more amniotic fluid this week. We celebrate any little progress and friends, this is progress.
I'm finally feeling the babies move around and kick in my tummy. This is so reassuring to me! I probably can't feel things as well as I would have without the anterior placenta but I can still feel both of our girls and it's amazing. I'm grateful I don't have to go the week between each ultrasound wondering if the babies still had beating hearts. I can feel them!
I'm sorry for the short update. It's always emotional for me to write details all out and I just ran out of writing mojo this week. Thank you for praying for these sweet girls. It appears that some healing is happening!
One thing I'll say is that hearing your 2 year old praying each night for the "babies in mommy's tummy" is incredibly meaningful. We have never asked her to pray specifically for the babies or told her anything was wrong with the pregnancy. But she listens to the things we pray for and she has included the phrase "please help the babies grow" in her prayers. It is the sweetest and most genuine thing I've ever heard. I thank God everyday for the blessing of being Avery's mom.
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