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. :-)
Friday, May 30, 2014
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.
Monday, May 19, 2014
Adjustment
I feel that the past few days have really been about adjustment. Our family is trying to adjust to this new normal for now. We are still recovering mentally and emotionally from the stress of last week and I'm still trying to recover physically as well. I feel like life is just different on this side of last week. A week ago, things were easier and just lighter. Now, it's different and more difficult and we are all adjusting.
My little Avery Grace is adjusting to having her mama gone for a few days last week and then now being on bed rest. She of course loves spending time with both her Honey (my mom) and her DeDe (Brian's mom). And they are taking wonderful care of her. But I can tell she's a little out of sorts. She's emotional and acting out a bit. This is stressful for her too. But I know she will adjust as well. My mom keeps telling me that kids are more resilient than we give them credit for. And I know that's true. But it hurts my mama's heart when she's upset. I want to just jump up and fix everything for her and return our schedules back to normal. But I can't, for now. I do appreciate all of the offers we have gotten for fun play dates for her. I'm going to keep her mostly with Honey and DeDe for now so she won't feel so "shuffled." But I do plan to take y'all up on those offers as we get further into the summer.
The best thing is when Avery crawls up into bed with me, pats my arm and says, "It's okay mama. I'ma take care of you." It puts tears in my eyes every time. I keep trying to reassure her that I'm okay and I'm going to be okay and here she is, reassuring me. She will lay in bed with me and we will watch Mickey Mouse Clubhouse together and it's just one of the only times that feels like normal. Just mama and daughter cuddling together. It's the best part of my day.
My body is still physically adjusting to the medications I'm on now. One of the medications is to lower my blood pressure to keep contractions away, but also to lower the blood pressure of the babies so their hearts can heal and reverse damage. The medication keeps my blood pressure so low that I often feel dizzy and like I'm going to faint even if I'm just sitting up. But I know it's important and it's doing its job. I'm constantly wondering how the babies are doing in there. Hoping they are growing and moving and becoming healthier by the day. I wish I could do more, but for now all I can do is pray, eat plenty, rest plenty and as my surgeon asked of me, to remain really calm. Yeah, that last part is really hard for me. Calm is not usually a word I'd use to describe myself.
Brian has some flexibility with his schedule and will be able to do some work from home. We appreciate the support from his boss and colleagues. Brian has been amazingly strong through this. He's been my rock of emotional support. I've always told him he is the calm to my crazy and it's been so evident this week. Brian is just one of those people that you want to have on your side when the tough gets tougher than you ever could have anticipated. What a blessing and gift from God he is.
Our next ultrasound will be later this week. We are praying for healthy heartbeats and more equal amounts of amniotic fluid for both babies.
Thank you for all the kind words of support. It really means so much to us to have people praying for us and our sweet baby girls.
(We are still talking about names for the girls and hope to have them picked soon. I'm getting tired of calling them Baby A and Baby B.)
My little Avery Grace is adjusting to having her mama gone for a few days last week and then now being on bed rest. She of course loves spending time with both her Honey (my mom) and her DeDe (Brian's mom). And they are taking wonderful care of her. But I can tell she's a little out of sorts. She's emotional and acting out a bit. This is stressful for her too. But I know she will adjust as well. My mom keeps telling me that kids are more resilient than we give them credit for. And I know that's true. But it hurts my mama's heart when she's upset. I want to just jump up and fix everything for her and return our schedules back to normal. But I can't, for now. I do appreciate all of the offers we have gotten for fun play dates for her. I'm going to keep her mostly with Honey and DeDe for now so she won't feel so "shuffled." But I do plan to take y'all up on those offers as we get further into the summer.
The best thing is when Avery crawls up into bed with me, pats my arm and says, "It's okay mama. I'ma take care of you." It puts tears in my eyes every time. I keep trying to reassure her that I'm okay and I'm going to be okay and here she is, reassuring me. She will lay in bed with me and we will watch Mickey Mouse Clubhouse together and it's just one of the only times that feels like normal. Just mama and daughter cuddling together. It's the best part of my day.
My body is still physically adjusting to the medications I'm on now. One of the medications is to lower my blood pressure to keep contractions away, but also to lower the blood pressure of the babies so their hearts can heal and reverse damage. The medication keeps my blood pressure so low that I often feel dizzy and like I'm going to faint even if I'm just sitting up. But I know it's important and it's doing its job. I'm constantly wondering how the babies are doing in there. Hoping they are growing and moving and becoming healthier by the day. I wish I could do more, but for now all I can do is pray, eat plenty, rest plenty and as my surgeon asked of me, to remain really calm. Yeah, that last part is really hard for me. Calm is not usually a word I'd use to describe myself.
Brian has some flexibility with his schedule and will be able to do some work from home. We appreciate the support from his boss and colleagues. Brian has been amazingly strong through this. He's been my rock of emotional support. I've always told him he is the calm to my crazy and it's been so evident this week. Brian is just one of those people that you want to have on your side when the tough gets tougher than you ever could have anticipated. What a blessing and gift from God he is.
Our next ultrasound will be later this week. We are praying for healthy heartbeats and more equal amounts of amniotic fluid for both babies.
Thank you for all the kind words of support. It really means so much to us to have people praying for us and our sweet baby girls.
(We are still talking about names for the girls and hope to have them picked soon. I'm getting tired of calling them Baby A and Baby B.)
Sunday, May 18, 2014
Catching you up...
This is our story. I hope it has a happy ending, but we have not been promised that. We are desperately praying for a miracle and I'm asking for you to pray with us. And that is why I have decided to share what's going on. We need prayer warriors standing with us and praying through all of this.
I suppose I'll start from the beginning. In January, we decided to try and have another baby. In February, I found out I was pregnant and we were so excited! We told family and close friends that we were expecting and began to make plans for a little October baby. At 6 weeks pregnant, I went into the doctor to have an ultrasound to confirm pregnancy. As soon as we saw the screen, I noticed two small circles, instead of one. We were shocked when seconds later, our doctor confirmed we were expecting identical twins. WHAT!? Identical twins!! I had never anticipated twins! We couldn't stop laughing and crying and just shaking our heads in awe. We went home and told our family. Everyone was surprised. And our parents even asked if we had been on fertility meds. Nope! This just happened. Our two little blessings.
When you are expecting identical twins, there are a whole new set of risks that come with it. Fraternal twins have two placentas and two amniotic sacs which is much healthier for the babies. Identical twins share one placenta and sometimes an amniotic sac. We were lucky in that our twins each had an amniotic sac but did share a placenta. I suppose this is the reason I have been so quiet about being pregnant with identical twins. Because I knew there were risks. I am 17 weeks pregnant tomorrow and still have not made any kind of social media announcement. But here it is. We are expecting IDENTICAL TWIN GIRLS!
From weeks 6 to 16, I have had extreme nausea. I've thrown up nearly everyday, sometimes twice a day despite being on two different anti-nausea medications. I thought it was difficult, but looking back, I wish I could go back to just being sick everyday instead of what we are dealing with now.
All this time, I've had ultrasounds every week to two weeks, checking on the twins and their growth. We have been seen frequently by both our regular ob doctor and a high risk ob with Texas Children's Hospital. The babies have had perfect heartbeats at every appointment. As they started to grow, I noticed that Baby A always seemed so active while Baby B seemed more subdued. I simply thought it was a difference in their personalities. At 12 weeks, they noticed a discrepancy in bladder sizes of the babies but it was not enough to be too concerned at that time. They told us the babies looked like girls but it was too early to confirm. At 14 weeks, they measured amniotic fluid and both babies had nearly the exact same amount which is perfect. Again, they told us the babies looked like girls but did not want to confirm just yet. I was so excited as I began to dream about 3 little girls! How exciting! I have loved having Avery and I just couldn't believe we got to have two more little baby girls.
During week 15, I noticed my belly grew a lot. Like uncomfortably a lot. It was hard to sleep and I seemed to grow out of clothes overnight. Again, I just thought it was because I was pregnant with twins and I was going to be huge. It concerned me but by the end of the week, I knew I had an ultrasound on Monday and I decided it could wait until then.
Monday morning, May 12, I went to my regular ob doctor and at first things seemed perfect. It was confirmed they were precious baby girls. And both babies had strong heartbeats. I shared my concern about stomach growth and I was measuring big, but I am a shorter person pregnant with twins. So we didn't worry at first. During the ultrasound, my doctor noticed that she could no longer find the dividing line between the two amniotic sacs. I tried not to worry as we moved to a new room with a different machine to see if we could see anything differently. Still, she could not find the two sacs. She told me not to panic but I really needed to get into see the high risk OB immediately to see what could be wrong. Avery was with me and so I began to call Brian and my parents to let them know something was wrong and that I needed help. Avery spent the afternoon with sweet friends as Brian and my mom accompanied me to our afternoon appointment with a maternal fetal medicine specialist. Again, during my 3rd ultrasound of the day, I noticed Baby A was quite active and Baby B just sat there. It was scary. After a long ultrasound the MFM specialist came in to tell us that he was seeing a diagnosis of Twin to Twin Transfusion syndrome. And that it was quite severe at stage 3. This means that Baby A was getting too much blood and creating lots of amniotic fluid, which was the reason for my big stomach. Baby B wasn't receiving enough blood and had almost no amniotic fluid. The amniotic sac was pressed up against her little body like saran wrap. We were at risk of soon losing Baby B and shortly after that, losing Baby A. At that point, my body seemed to go into shock and I only heard bits and pieces afterwards. The MFM specialist made an appointment for us on Wednesday, May 14 at Texas Children's Hospital in the med center to discuss our options. I do remember the MFM specialist telling us we needed to be prepared that we might not hear any heartbeats at that time. We needed to be prepared for the loss.
We cried from that moment until Wednesday. We were on our knees praying for the lives of our little girls. I could not understand how we could be so blessed with TWO little girls and then for that to be taken away. It's something I'm still having trouble processing. We made arrangements with my in-laws for them to come down and stay with Avery so my parents could be at the hospital with us.
On Wednesday, after ultrasounds and fetal echocardiograms, we learned that the babies still had beautiful heartbeats. I was so relieved to move onto the discussion of keeping them alive instead of preparing for delivery and burial. We then sat down and had an "options" meeting with a fetal surgeon. Baby A was in early heart failure from having to process too much blood through her little heart. Baby B did not show a bladder which meant she wasn't getting any blood at all and her heart was in distress as well. Our options were grim. Option 1 included doing nothing in which the babies had an 80-90% chance of death. Option 2 included doing a laser ablation surgery to cut the connections between the babies to hopefully even blood flow, letting the babies hopefully retain equal amounts of amniotic fluid and letting their hearts heal. It's a rather risky surgery and as I was only 16 weeks, it was going to be quite difficult. They usually like to do this surgery around 18-20 weeks. This surgery still came with scary percentages of fetal demise. Option 3 included selective reduction, meaning abortion of Baby B in hopes that Baby A would survive. Option 4 included we had a legal right to terminate the entire pregnancy because of the grim prospect of the babies survival. We immediately felt that Option 2 was the only option in our eyes. This laser surgery is only done at 5 or 6 hospitals in the United States. We were extremely lucky that we were in the right place for this to even be an option for us. We were informed that many times, babies do not even make it through the surgery. And preterm labor and severe bleeding and loss is a major risk and concern. But in our minds, we still had to try the surgery. It was our only hope for our baby girls. We made the decision for surgery around 5:30 pm and after signing much scary paperwork, I was rolling into the operating room at 9:00 that Wednesday night.
During surgery, I was awake but sedated. I could hear everything going on. It was a more difficult surgery than the fetal surgeon expected and continued for two hours. The doctors inserted a laser into my uterus, located the blood vessels between the babies and used the laser to burn them closed. They also drained a lot of amniotic fluid from Baby A's sac. I was relieved when I heard they were going to start closing up. The babies still had heartbeats as they finished the surgery. As I was wheeled into recovery, it was discovered I was having a lot of contractions. A lot. I was given a shot Terbutaline to stop contractions. Five minutes later, I was still having contractions two minutes apart. I was given another shot of Terbutaline. Five minutes after that, the recovery nurse explained that 6 contractions an hour was okay, but contractions every two minutes was not okay. I was then given a massive dose of Magnesium Sulfate which did slow the contractions. We were relieved and hoped we had stopped preterm labor. I was put on an IV drip of the magnesium which immediately began having severe effects on my body. Extreme flushing, heat flashes and vomiting. But it did slow the contractions and stopped any labor progress.
They checked for heartbeats about every 6 hours from then on and thank the Lord, we had heartbeats. We knew we had needed a miracle for the babies to make it through the surgery and so far, we had it. By Thursday afternoon, the contractions had almost stopped and my body was making it apparent that it had had enough of the magnesium. I began to have severe chest pains and limited breathing. They decided to x-ray my chest to check for blood clots, as I have a history of those. It was determined there were no blood clots and that my body was having a toxic reaction to the magnesium. I'm so very glad the magnesium was available to stop my labor but I was so relieved to be removed from the mag IV. It was very hard on my body, but again, I was going to do anything I could to save my babies. Friday morning, we had an ultrasound and fetal echocardiogram to check on the babies progress. Amazingly, we have already seen improvement in both babies' conditions. Baby B showed a slight bladder which means she already was getting more blood flow. She still has the amniotic sac pressed against her, and we hope to see more amniotic fluid for her in the coming week. Baby A showed a slight improvement in heart function, which is incredible because it can be weeks before any improved heart function can be seen. Just miracles, y'all.
I was able to go home on Friday afternoon and I have been on bed rest and will be for some time. Next week, we will go in for more ultrasounds to check for progress. We still have a very long road ahead for us. Our families are stepping in to take care of Avery. Friends are going to be delivering meals for us. And we will continue to pray for growth and healing in our baby girls. There are still so many risks we are facing. But we started the week thinking we needed to prepare for a burial service and ended the week with some hope that our baby girls will survive. What we are praying for now is that not only will they continue to have beautiful heartbeats but that their bodies will be healed, damage will be reversed and that they will not only be born alive, but healthy.
I cannot say enough great things about our doctors and nurses at Texas Children's Hospital. Our fetal surgeon was amazing. He was intelligent and skilled with a wonderful bed manner. He explained things to us so well and post surgery, checked on me every few hours. I had never heard of a doctor taking such an interest in a case and caring for us the way he did. I know God placed this doctor in our lives this week. This doctor was an answer to prayer.
Friends, please join us in praying for the lives of our girls. I feel strongly that God has a beautiful plan for my twins. He is not finished working here yet. I am choosing to trust in Him and give my grief and pain over to Him. That's not to say I haven't fallen apart many times this week. And I still expect to in the future. But I have seen miraculous things done this week and I believe now more than ever that we are in God's hands. He's going to bring us through this.
Thank you to family and friends for your support this week. Brian, Avery and I truly appreciate it.
I suppose I'll start from the beginning. In January, we decided to try and have another baby. In February, I found out I was pregnant and we were so excited! We told family and close friends that we were expecting and began to make plans for a little October baby. At 6 weeks pregnant, I went into the doctor to have an ultrasound to confirm pregnancy. As soon as we saw the screen, I noticed two small circles, instead of one. We were shocked when seconds later, our doctor confirmed we were expecting identical twins. WHAT!? Identical twins!! I had never anticipated twins! We couldn't stop laughing and crying and just shaking our heads in awe. We went home and told our family. Everyone was surprised. And our parents even asked if we had been on fertility meds. Nope! This just happened. Our two little blessings.
When you are expecting identical twins, there are a whole new set of risks that come with it. Fraternal twins have two placentas and two amniotic sacs which is much healthier for the babies. Identical twins share one placenta and sometimes an amniotic sac. We were lucky in that our twins each had an amniotic sac but did share a placenta. I suppose this is the reason I have been so quiet about being pregnant with identical twins. Because I knew there were risks. I am 17 weeks pregnant tomorrow and still have not made any kind of social media announcement. But here it is. We are expecting IDENTICAL TWIN GIRLS!
From weeks 6 to 16, I have had extreme nausea. I've thrown up nearly everyday, sometimes twice a day despite being on two different anti-nausea medications. I thought it was difficult, but looking back, I wish I could go back to just being sick everyday instead of what we are dealing with now.
All this time, I've had ultrasounds every week to two weeks, checking on the twins and their growth. We have been seen frequently by both our regular ob doctor and a high risk ob with Texas Children's Hospital. The babies have had perfect heartbeats at every appointment. As they started to grow, I noticed that Baby A always seemed so active while Baby B seemed more subdued. I simply thought it was a difference in their personalities. At 12 weeks, they noticed a discrepancy in bladder sizes of the babies but it was not enough to be too concerned at that time. They told us the babies looked like girls but it was too early to confirm. At 14 weeks, they measured amniotic fluid and both babies had nearly the exact same amount which is perfect. Again, they told us the babies looked like girls but did not want to confirm just yet. I was so excited as I began to dream about 3 little girls! How exciting! I have loved having Avery and I just couldn't believe we got to have two more little baby girls.
During week 15, I noticed my belly grew a lot. Like uncomfortably a lot. It was hard to sleep and I seemed to grow out of clothes overnight. Again, I just thought it was because I was pregnant with twins and I was going to be huge. It concerned me but by the end of the week, I knew I had an ultrasound on Monday and I decided it could wait until then.
Monday morning, May 12, I went to my regular ob doctor and at first things seemed perfect. It was confirmed they were precious baby girls. And both babies had strong heartbeats. I shared my concern about stomach growth and I was measuring big, but I am a shorter person pregnant with twins. So we didn't worry at first. During the ultrasound, my doctor noticed that she could no longer find the dividing line between the two amniotic sacs. I tried not to worry as we moved to a new room with a different machine to see if we could see anything differently. Still, she could not find the two sacs. She told me not to panic but I really needed to get into see the high risk OB immediately to see what could be wrong. Avery was with me and so I began to call Brian and my parents to let them know something was wrong and that I needed help. Avery spent the afternoon with sweet friends as Brian and my mom accompanied me to our afternoon appointment with a maternal fetal medicine specialist. Again, during my 3rd ultrasound of the day, I noticed Baby A was quite active and Baby B just sat there. It was scary. After a long ultrasound the MFM specialist came in to tell us that he was seeing a diagnosis of Twin to Twin Transfusion syndrome. And that it was quite severe at stage 3. This means that Baby A was getting too much blood and creating lots of amniotic fluid, which was the reason for my big stomach. Baby B wasn't receiving enough blood and had almost no amniotic fluid. The amniotic sac was pressed up against her little body like saran wrap. We were at risk of soon losing Baby B and shortly after that, losing Baby A. At that point, my body seemed to go into shock and I only heard bits and pieces afterwards. The MFM specialist made an appointment for us on Wednesday, May 14 at Texas Children's Hospital in the med center to discuss our options. I do remember the MFM specialist telling us we needed to be prepared that we might not hear any heartbeats at that time. We needed to be prepared for the loss.
We cried from that moment until Wednesday. We were on our knees praying for the lives of our little girls. I could not understand how we could be so blessed with TWO little girls and then for that to be taken away. It's something I'm still having trouble processing. We made arrangements with my in-laws for them to come down and stay with Avery so my parents could be at the hospital with us.
On Wednesday, after ultrasounds and fetal echocardiograms, we learned that the babies still had beautiful heartbeats. I was so relieved to move onto the discussion of keeping them alive instead of preparing for delivery and burial. We then sat down and had an "options" meeting with a fetal surgeon. Baby A was in early heart failure from having to process too much blood through her little heart. Baby B did not show a bladder which meant she wasn't getting any blood at all and her heart was in distress as well. Our options were grim. Option 1 included doing nothing in which the babies had an 80-90% chance of death. Option 2 included doing a laser ablation surgery to cut the connections between the babies to hopefully even blood flow, letting the babies hopefully retain equal amounts of amniotic fluid and letting their hearts heal. It's a rather risky surgery and as I was only 16 weeks, it was going to be quite difficult. They usually like to do this surgery around 18-20 weeks. This surgery still came with scary percentages of fetal demise. Option 3 included selective reduction, meaning abortion of Baby B in hopes that Baby A would survive. Option 4 included we had a legal right to terminate the entire pregnancy because of the grim prospect of the babies survival. We immediately felt that Option 2 was the only option in our eyes. This laser surgery is only done at 5 or 6 hospitals in the United States. We were extremely lucky that we were in the right place for this to even be an option for us. We were informed that many times, babies do not even make it through the surgery. And preterm labor and severe bleeding and loss is a major risk and concern. But in our minds, we still had to try the surgery. It was our only hope for our baby girls. We made the decision for surgery around 5:30 pm and after signing much scary paperwork, I was rolling into the operating room at 9:00 that Wednesday night.
During surgery, I was awake but sedated. I could hear everything going on. It was a more difficult surgery than the fetal surgeon expected and continued for two hours. The doctors inserted a laser into my uterus, located the blood vessels between the babies and used the laser to burn them closed. They also drained a lot of amniotic fluid from Baby A's sac. I was relieved when I heard they were going to start closing up. The babies still had heartbeats as they finished the surgery. As I was wheeled into recovery, it was discovered I was having a lot of contractions. A lot. I was given a shot Terbutaline to stop contractions. Five minutes later, I was still having contractions two minutes apart. I was given another shot of Terbutaline. Five minutes after that, the recovery nurse explained that 6 contractions an hour was okay, but contractions every two minutes was not okay. I was then given a massive dose of Magnesium Sulfate which did slow the contractions. We were relieved and hoped we had stopped preterm labor. I was put on an IV drip of the magnesium which immediately began having severe effects on my body. Extreme flushing, heat flashes and vomiting. But it did slow the contractions and stopped any labor progress.
They checked for heartbeats about every 6 hours from then on and thank the Lord, we had heartbeats. We knew we had needed a miracle for the babies to make it through the surgery and so far, we had it. By Thursday afternoon, the contractions had almost stopped and my body was making it apparent that it had had enough of the magnesium. I began to have severe chest pains and limited breathing. They decided to x-ray my chest to check for blood clots, as I have a history of those. It was determined there were no blood clots and that my body was having a toxic reaction to the magnesium. I'm so very glad the magnesium was available to stop my labor but I was so relieved to be removed from the mag IV. It was very hard on my body, but again, I was going to do anything I could to save my babies. Friday morning, we had an ultrasound and fetal echocardiogram to check on the babies progress. Amazingly, we have already seen improvement in both babies' conditions. Baby B showed a slight bladder which means she already was getting more blood flow. She still has the amniotic sac pressed against her, and we hope to see more amniotic fluid for her in the coming week. Baby A showed a slight improvement in heart function, which is incredible because it can be weeks before any improved heart function can be seen. Just miracles, y'all.
I was able to go home on Friday afternoon and I have been on bed rest and will be for some time. Next week, we will go in for more ultrasounds to check for progress. We still have a very long road ahead for us. Our families are stepping in to take care of Avery. Friends are going to be delivering meals for us. And we will continue to pray for growth and healing in our baby girls. There are still so many risks we are facing. But we started the week thinking we needed to prepare for a burial service and ended the week with some hope that our baby girls will survive. What we are praying for now is that not only will they continue to have beautiful heartbeats but that their bodies will be healed, damage will be reversed and that they will not only be born alive, but healthy.
I cannot say enough great things about our doctors and nurses at Texas Children's Hospital. Our fetal surgeon was amazing. He was intelligent and skilled with a wonderful bed manner. He explained things to us so well and post surgery, checked on me every few hours. I had never heard of a doctor taking such an interest in a case and caring for us the way he did. I know God placed this doctor in our lives this week. This doctor was an answer to prayer.
Friends, please join us in praying for the lives of our girls. I feel strongly that God has a beautiful plan for my twins. He is not finished working here yet. I am choosing to trust in Him and give my grief and pain over to Him. That's not to say I haven't fallen apart many times this week. And I still expect to in the future. But I have seen miraculous things done this week and I believe now more than ever that we are in God's hands. He's going to bring us through this.
Thank you to family and friends for your support this week. Brian, Avery and I truly appreciate it.
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