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.
Friday, May 30, 2014
Smiling's my favorite
I apologize if you've been waiting for a post from me. I got home yesterday evening, ate dinner and went to bed. The appointments take a lot out of me physically and mentally and I just crash when I get home.
All to say - yesterday was the most positive appointment we have had since the diagnosis. I walked out of the ultrasound feeling more hopeful than ever before.
I am a goal oriented person. I like to break things up into little accomplishments and feel like I met certain goals. I need to see progress. I told the doctor I knew that we still had a long road and that we are taking it week by week and that I knew we aren't out of the woods yet of course, but I asked if we had met our goals for this week. And my lovely doctor smiled and said yes, I'm very happy.
Baby A - We still have another couple of weeks before her fetal echo cardiogram to see how her heart handled the surgery and if it has been able to further reverse any damage caused by the TTTS. However, she has a nearly perfect amount of amniotic fluid instead of all the excess she had before the laser surgery. This indicates that the surgery was indeed successful and the girls are no longer having transfusions between them. This is huge! It feels good to know that the laser surgery did what it was supposed to. Baby A has a normal sized bladder which is also an indication she is getting an appropriate amount of blood flow. She appears to be healthy and growing and I'm very eager to see what her fetal echo says, but again, we have a while before that happens.
Baby B - Our little Baby B still has a lot going on and it's really still up in the air for her. But I'm trying to focus on one appointment at a time instead of worrying right now about what might happen later. So our indications yesterday were than Baby B is doing okay. Everyone is impressed that this little girl has a strong beating heart and we are so happy about this. Something I haven't discussed on the blog yet is that our Baby B also had another diagnosis besides the TTTS. She is also plagued by something called Selective Intrauterine Growth Restriction (SIUGR). What this means is that her umbilical cord has never really gotten a good connection to the placenta. She's probably had restricted or unusual blood flow since the beginning. The good thing is that because we no longer have the transfusions taking place between the girls, her body doesn't have the stress of pushing all her remaining blood flow to her sister. But it's very very important for her to grow a lot in the next two weeks. We will of course have another ultrasound next week at 19 weeks to check on the babies but our really big indicator of how Baby B is doing will be at the 20 weeks appointment. They will be measuring her growth then and comparing it to her size at 16 weeks and that will determine how much she's being affected by the SIUGR. I wish there was some kind of surgery that could reattach her cord to the placenta in a healthier place but that doesn't exist yet. Maybe by the time Avery is having kids. (Ahh, scary thought! Grandma Jess!?)
Despite the fact that both babies still do have health issues, my doctor seems so positive. Yesterday, he was just smiling and radiating positivity. Seriously, it seems like God just matched me up with the perfect doctor who is so skilled at managing our babies' care but at also making me look at the bright side of things. The doctor has never made me feel that he doesn't have time to answer all my questions. And believe me, I ask him all the hard things. He has never made any promises to me that he knew he couldn't keep. He has been completely honest with us over the last few weeks. And yesterday, he was looking at the babies on the ultrasound and saying, "Look at these babies. I'm very happy." I told him that I was so proud of my tough little babies. And he said, "you are tough too."
Then I walked out of another ultrasound appointment while crying. This time it was happy tears. I feel more hope than ever before. I know we still might lose Baby B. I know that Baby A might have such significant heart problems, she may need surgery or something. BUT. We have more hope than ever before that the girls will make it. That we really might be able to bring two little identical twin girls home and complete our family of five.
Another thing that we talked about yesterday is there will come a time near 28-30 weeks where there will be a lot of important decision making regarding when the girls will be born. Baby B will most likely be healthier to be delivered near 30 weeks. Because at that point she'll be able to be fed better outside of my body than inside. While Baby A will probably be healthier to be delivered at 32-34 weeks and if it's before that, she might become the sicker baby at that point because she didn't need to be so premie. It's going to be walking a very fine line. This is all of course dependent on my body not trying to go into labor on it's own before this. Prematurely ruptured membranes and premature labor are all risks from the laser surgery because my uterus has already been punctured. This is the main reason I'll be on modified bed rest the remainder of the pregnancy. Another reason for bed rest is to give Baby B the best chance possible to be growing.
Again, I was given the speech that my job is to rest, relax and eat. I asked if I would be able to drive soon and the answer was a pretty strong no. I was reminded that this is still a very high risk pregnancy and I'm to keep a pretty low profile. He told me to try and enjoy this pregnancy and think happy thoughts because the babies would feel calmer if I'm calmer. So for this goal oriented person, that is my plan for the next two weeks until we can better assess our little Baby B's situation. I'd say I'm going to be calm and relaxed for the next 12 weeks but that sounds really far away. So I'm saying for the next 2 weeks.
The rest of the day was filled with prenatal care appointments, physical exams for me and heading to the lab for blood tests and my fun first glucose test. I have some early markers for gestational diabetes which is very common for mothers pregnant with multiples. If I pass this early glucose test, I'll be tested again at 27 weeks. I wouldn't be surprised if I have it but it all just seems secondary compared to what we have been through so far. So I'm honestly not worried about it. If I have it, we will deal with it.
I'm moving forward with planning a nursery for two. I had put all of that on hold for a while but I think it's time to get back to that. Ironically, our second crib was delivered yesterday (which was ordered before the diagnosis) and I'm so glad we had the positive news we did instead of something else. It would have been awfully hard to come home and see a second crib which we knew for sure would never be used. I suppose we still don't know what's going to happen but I'm going to move forward anyways. It's probably a little premature still but I'm choosing the power of positive thinking instead.
Specific prayer requests for the babies are that Baby A's heart is still healing and that Baby B will grow grow grow! Thank you again for all of the support and prayer and meals and Facebook messages and emails and text messages. I may not respond to everything right away, but I see it and I'm grateful for all the love our family has received the past few weeks. Thank you for loving on our little (but growing) family.
10 points to you if you know where I got the title of the post from. :-)
All to say - yesterday was the most positive appointment we have had since the diagnosis. I walked out of the ultrasound feeling more hopeful than ever before.
I am a goal oriented person. I like to break things up into little accomplishments and feel like I met certain goals. I need to see progress. I told the doctor I knew that we still had a long road and that we are taking it week by week and that I knew we aren't out of the woods yet of course, but I asked if we had met our goals for this week. And my lovely doctor smiled and said yes, I'm very happy.
Baby A - We still have another couple of weeks before her fetal echo cardiogram to see how her heart handled the surgery and if it has been able to further reverse any damage caused by the TTTS. However, she has a nearly perfect amount of amniotic fluid instead of all the excess she had before the laser surgery. This indicates that the surgery was indeed successful and the girls are no longer having transfusions between them. This is huge! It feels good to know that the laser surgery did what it was supposed to. Baby A has a normal sized bladder which is also an indication she is getting an appropriate amount of blood flow. She appears to be healthy and growing and I'm very eager to see what her fetal echo says, but again, we have a while before that happens.
Baby B - Our little Baby B still has a lot going on and it's really still up in the air for her. But I'm trying to focus on one appointment at a time instead of worrying right now about what might happen later. So our indications yesterday were than Baby B is doing okay. Everyone is impressed that this little girl has a strong beating heart and we are so happy about this. Something I haven't discussed on the blog yet is that our Baby B also had another diagnosis besides the TTTS. She is also plagued by something called Selective Intrauterine Growth Restriction (SIUGR). What this means is that her umbilical cord has never really gotten a good connection to the placenta. She's probably had restricted or unusual blood flow since the beginning. The good thing is that because we no longer have the transfusions taking place between the girls, her body doesn't have the stress of pushing all her remaining blood flow to her sister. But it's very very important for her to grow a lot in the next two weeks. We will of course have another ultrasound next week at 19 weeks to check on the babies but our really big indicator of how Baby B is doing will be at the 20 weeks appointment. They will be measuring her growth then and comparing it to her size at 16 weeks and that will determine how much she's being affected by the SIUGR. I wish there was some kind of surgery that could reattach her cord to the placenta in a healthier place but that doesn't exist yet. Maybe by the time Avery is having kids. (Ahh, scary thought! Grandma Jess!?)
Despite the fact that both babies still do have health issues, my doctor seems so positive. Yesterday, he was just smiling and radiating positivity. Seriously, it seems like God just matched me up with the perfect doctor who is so skilled at managing our babies' care but at also making me look at the bright side of things. The doctor has never made me feel that he doesn't have time to answer all my questions. And believe me, I ask him all the hard things. He has never made any promises to me that he knew he couldn't keep. He has been completely honest with us over the last few weeks. And yesterday, he was looking at the babies on the ultrasound and saying, "Look at these babies. I'm very happy." I told him that I was so proud of my tough little babies. And he said, "you are tough too."
Then I walked out of another ultrasound appointment while crying. This time it was happy tears. I feel more hope than ever before. I know we still might lose Baby B. I know that Baby A might have such significant heart problems, she may need surgery or something. BUT. We have more hope than ever before that the girls will make it. That we really might be able to bring two little identical twin girls home and complete our family of five.
Another thing that we talked about yesterday is there will come a time near 28-30 weeks where there will be a lot of important decision making regarding when the girls will be born. Baby B will most likely be healthier to be delivered near 30 weeks. Because at that point she'll be able to be fed better outside of my body than inside. While Baby A will probably be healthier to be delivered at 32-34 weeks and if it's before that, she might become the sicker baby at that point because she didn't need to be so premie. It's going to be walking a very fine line. This is all of course dependent on my body not trying to go into labor on it's own before this. Prematurely ruptured membranes and premature labor are all risks from the laser surgery because my uterus has already been punctured. This is the main reason I'll be on modified bed rest the remainder of the pregnancy. Another reason for bed rest is to give Baby B the best chance possible to be growing.
Again, I was given the speech that my job is to rest, relax and eat. I asked if I would be able to drive soon and the answer was a pretty strong no. I was reminded that this is still a very high risk pregnancy and I'm to keep a pretty low profile. He told me to try and enjoy this pregnancy and think happy thoughts because the babies would feel calmer if I'm calmer. So for this goal oriented person, that is my plan for the next two weeks until we can better assess our little Baby B's situation. I'd say I'm going to be calm and relaxed for the next 12 weeks but that sounds really far away. So I'm saying for the next 2 weeks.
The rest of the day was filled with prenatal care appointments, physical exams for me and heading to the lab for blood tests and my fun first glucose test. I have some early markers for gestational diabetes which is very common for mothers pregnant with multiples. If I pass this early glucose test, I'll be tested again at 27 weeks. I wouldn't be surprised if I have it but it all just seems secondary compared to what we have been through so far. So I'm honestly not worried about it. If I have it, we will deal with it.
I'm moving forward with planning a nursery for two. I had put all of that on hold for a while but I think it's time to get back to that. Ironically, our second crib was delivered yesterday (which was ordered before the diagnosis) and I'm so glad we had the positive news we did instead of something else. It would have been awfully hard to come home and see a second crib which we knew for sure would never be used. I suppose we still don't know what's going to happen but I'm going to move forward anyways. It's probably a little premature still but I'm choosing the power of positive thinking instead.
Specific prayer requests for the babies are that Baby A's heart is still healing and that Baby B will grow grow grow! Thank you again for all of the support and prayer and meals and Facebook messages and emails and text messages. I may not respond to everything right away, but I see it and I'm grateful for all the love our family has received the past few weeks. Thank you for loving on our little (but growing) family.
10 points to you if you know where I got the title of the post from. :-)
Wednesday, May 28, 2014
Beautiful music
Hi friends.
I'm going to keep this short and sweet cause I'm tired today after an unexpected day at Texas Children's yesterday. But here's the good news...
We heard two beautiful heartbeats on the Doppler yesterday!!! I wasn't scheduled for an ultrasound or anything so we don't know progress yet. But I heard those sweet heartbeat sounds and it's just beautiful music to my ears. Those sweet girls are fighters. And every time I hear their heartbeats, I feel we are just one step closer to having them here and in our arms.
I was at Texas Children's due to some things going on with my body and pregnancy in general that my doctor wanted to check on. I don't want to give many details so publicly but essentially, because my body has been under stress, it's working really hard and failing at fighting some things off even with the help of medication. My doctor again encouraged me to be calm and just enjoy the pregnancy as much as I could. It's almost funny how many times he has told me to be calm. So that's something I'm still working on. In the meantime, he gave me some different medications and I hope to have a healthier body soon.
But all I can focus on is that we heard those heartbeats. My girls are still alive today! And I wanted to share that with all the wonderful people praying for us.
Thank you to all of you who have reached out with your own medical miracle stories. I do know they exist and it gives me more hope that we might have that too. It seems that we do so far. I have been able to join a Twin to Twin Transfusion support group on Facebook and I have heard some amazing stories of ladies who have been in my exact shoes. They have been through my surgery. They have had those "options" meetings. Their stories are scary like mine. And filled with uncertainty as they were also told over and over again that their babies were probably going to die. And they have beautiful healthy babies today.
This week, I am feeling a bit stronger emotionally and I just feel like I'm back in my fighting shoes. I have even been able to sleep a little bit more and that in itself feels amazing. I just feel more at peace this week. And I know myself...I know that's not me doing that on my own. That peace is coming from my Jesus. I know to be expecting feeling low and sad again but right now, in this moment, I'm feeling more like myself.
I'll be back with an update later this week after our other appointments. Love to you all!
I'm going to keep this short and sweet cause I'm tired today after an unexpected day at Texas Children's yesterday. But here's the good news...
We heard two beautiful heartbeats on the Doppler yesterday!!! I wasn't scheduled for an ultrasound or anything so we don't know progress yet. But I heard those sweet heartbeat sounds and it's just beautiful music to my ears. Those sweet girls are fighters. And every time I hear their heartbeats, I feel we are just one step closer to having them here and in our arms.
I was at Texas Children's due to some things going on with my body and pregnancy in general that my doctor wanted to check on. I don't want to give many details so publicly but essentially, because my body has been under stress, it's working really hard and failing at fighting some things off even with the help of medication. My doctor again encouraged me to be calm and just enjoy the pregnancy as much as I could. It's almost funny how many times he has told me to be calm. So that's something I'm still working on. In the meantime, he gave me some different medications and I hope to have a healthier body soon.
But all I can focus on is that we heard those heartbeats. My girls are still alive today! And I wanted to share that with all the wonderful people praying for us.
Thank you to all of you who have reached out with your own medical miracle stories. I do know they exist and it gives me more hope that we might have that too. It seems that we do so far. I have been able to join a Twin to Twin Transfusion support group on Facebook and I have heard some amazing stories of ladies who have been in my exact shoes. They have been through my surgery. They have had those "options" meetings. Their stories are scary like mine. And filled with uncertainty as they were also told over and over again that their babies were probably going to die. And they have beautiful healthy babies today.
This week, I am feeling a bit stronger emotionally and I just feel like I'm back in my fighting shoes. I have even been able to sleep a little bit more and that in itself feels amazing. I just feel more at peace this week. And I know myself...I know that's not me doing that on my own. That peace is coming from my Jesus. I know to be expecting feeling low and sad again but right now, in this moment, I'm feeling more like myself.
I'll be back with an update later this week after our other appointments. Love to you all!
Thursday, May 22, 2014
Hope and discouragement
We had our first post hospital ultrasound today.
The positive thing is that both babies still have heartbeats. Tears were just pouring down my face as I realized they were both still alive. They are still moving and waving and jumping all over the screen. I think they are BOTH beautiful. They look perfect to me. Because I have an anterior placenta, I cannot feel the babies moving as I would like to. Therefore, I really had no idea if they would still be moving around.
Our maternal fetal medicine (MFM) specialist is not hiding his amazement that we still have heartbeats. At each ultrasound, he seems to be expecting our babies not to be alive. I don't think he's being negative. I think he's being realistic and that's just the situation we are in.
I'll start first with Baby A. Baby A is clearly the bigger twin and she's even grown a lot since we saw her last week. As most of her severe health problems were seen in her heart, we did not get an accurate update on her progress as we will have to wait 3-4 more weeks for her fetal echocardiogram. Changes in the heart happen over a long period of time and we are giving her more time to heal before being able to assess her heart situation again. Last week she was in heart failure and I'm just praying that healing has begun. All of her other organs appeared healthy. She is a very active baby and I loved seeing her wave her hands and arms around as if she was waving right to us.
Now to our sweet Baby B. Baby B is still very small but had a strong heartbeat and improved movement. You have to understand that when I say improved, it doesn't mean good. It just means better. They were able to clearly see a bladder for her, which is improvement from last week when they could not see one at all. However, she still has significant blood flow problems. Her blood flow had not improved at all and our MFM specialist called it "status quo." I'm glad it has not gotten worse (I'm not sure how much worse it could get...) but we were all certainly hoping to see positive changes in blood flow and there are none. The MFM told us we need to begin asking our surgeon if he indeed was able to cut ALL of the connections between the babies because we need to prepare for the possibility of Baby B passing away and try to save Baby A. He described the situation as "touch and go" for the next few weeks.
You see, when twins have this twin to twin transfusion syndrome, the "donor" baby, (I hate using these medical terms but it might help you understand, just for this conversation) our Baby B, pushes all the blood flow to the "recipient" baby, our Baby A. If the donor baby passes away, the blood flow is then sucked back into that baby and the recipient baby has a stroke and significant brain damage. Essentially, you just don't want any transfusion of any kind between the babies. They should be self sufficient with their own connections to the placenta. Once the laser surgery is done, all the connecting blood vessels between the babies should be gone. This is obviously a shock to the babies' systems who have become used to either supporting the other baby or dealing with excess blood. However, if post surgery, the donor baby passes away, the recipient baby will not be in further danger of brain damage.
Our surgeon told us last week that he was able to cut 16 blood vessels between the babies and he thought he was able to get them all. We will be verifying next week that that was all there was. There is still a 3% chance of reoccurence of blood vessels between the babies, in which case they can not perform any more surgery. There will be nothing left to do. We certainly hope this will not be our situation. I feel fairly confident the surgeon was able to separate the babies, but again, we will be verifying that.
We have not given up on Baby B and I will not give up on her. Ever. She is clearly a fighter to have made it this far. If our girls have been fighting so hard to make it this far, we will continue fighting for them as well. We will do whatever we can do.
As you can imagine, I'm very very discouraged. I knew not to be expecting a "normal" or good ultrasound, but I had hoped to see TWO healthier babies. Actually, I'm not sure what I was expecting to see. I've tried to be so strong since we left the hospital. I've tried to focus on the positive. It's so very hard to stay positive. I've prayed and prayed over my little ones. I've told everyone "I'm doing ok." But here's the truth. I'm having trouble sleeping because I have so much anxiety. I feel like I'm still dealing with the stress of surgery last week. And with the stress of all of this. Every time I close my eyes to sleep, I feel like I remember a portion of the surgery (cause remember, I was awake during it) or a specific disappointing phrase we heard from the doctor or remembering how low our percentages are of being able to deliver two babies. I wish I could turn off my brain for just a little bit. But it's kind of hard to forget you are pregnant, even for a moment. It's all consuming as any mom knows. I think I'm in mourning for a healthy pregnancy and healthy babies. I've been looking at Avery this week and just thanking God for her. I've always always been thankful for her but I now fully understand what a blessing it is to have a healthy pregnancy and be able to even bring a child into this world. That in itself is an incredible miracle.
So I'm letting myself fall apart today. I'm hopeful but discouraged at the same time. Two very different emotions but I'm feeling them at the same time. Today, I'm letting myself be sad and angry. Tomorrow, I will start fresh again and continue on the fight for my precious baby girls.
Thank you again for all your prayers. Please keep praying.
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