As most of you know a few weeks ago the specialist I am seeing diagnosed us with Twin to Twin Transfusion Syndrome and they wanted me to go down to the Childrens Hospital Of Philadelphia (CHOP) to have a laser procedure on the placenta to try and correct the problem. Upon speaking with CHOP they told me they needed more measurements before they could determine whether or not I was a candidate for the surgery, so they were going to wait until I'd had another ultrasound to make a decision. I had that ultrasound one week ago and was assured someone would be in touch with me that evening to let me know where we would be going from there. Thursday night came and went, as did Friday, and the entire weekend. Finally on Monday I called CHOP and asked what was going on and was told my doctors office was supposed to call me Thursday to let me know. Figures. She told me she didn't have the full report of the ultrasound but from what they were given it did not appear to her to be TTTS, but that I needed to see my doctor.
Fast forward to today - I had another ultrasound and met with the specialist immediately afterwords. He told me that while he's not 100% convinced it's not TTTS, I am not a candidate for the surgery. He told me at this point he is still seeing things that are concerning and that we need to be prepared to face the "very real possibility" that Evie will not survive. However, at this point, beyond bed rest and fluid intake, there is nothing we can do but wait and see.
So that's where we are currently. Waiting. Evie is still growing, so thats a good sign, and to be honest I'm rather irritated with the specialist. Every time we see him he's like a walking omen of death - he truly believes, and is trying to convince me, of the worst in this situation. He always seems so sure that at least one baby will die. The frustrating thing is both the nurse and the specialist at CHOP said that yes, Evie is smaller and her fluid level is lower, but otherwise she is stable and other other results are normal. If you ask my specialist, he'd tell you that no, shes not stable, and she probably won't be alive at the next ultrasound. I understand they need to make us aware of the reality, but there's reality and then there's negativity. I refuse to give up hope. She is growing every week, she's moving, she's alive - and my God is bigger than all of this. He gave her life and he can sustain it if he so chooses. I'm not giving up my faith that she can survive this.
As I said before, I my first milestone will be 28 weeks. If we can get there, chances are good that both babies will survive outside of the womb. And it is a real possibility that we will need to deliver much sooner than we'd like, but if we can make it to 28 weeks, every day their chances of being healthy and stable grow. 2 more months. We need God to do this, there is nothing we can do, and we would truly appreciate as many prayers as we can get. I believe fully in the power of prayer, especially united prayer.
So that's where we are - I will continue to have weekly ultrasounds until further notice. If anything changes I'll let you all know. Thank you so much for your prayer and support this far, it means more than you could understand. We love you all.
Update on, well, life!
I know my posts have been few and far between lately, and I really have no excuse considering I'm practically on bed rest at this point. Ah well, blogging is really for the poster anyway, isn't it?
So how to update... I'm currently 18 weeks pregnant with our little twins and we found out two weeks ago that they will be GIRLS! We're so elated, I can't wait to meet my little princess. However, it wouldn't be life without some trial and tribulation - right?
Last week my doctor called me with the results of our 16 week ultrasound and told me there was a trend toward growth discordance in the twins. Twin A - London, seemed to be doing just fine, but twin B - Evie, was measuring 20% behind. This is, needless to say, one piece of news I was neither prepared to happy to hear. Growth discordance can be very dangerous to one or both of the twins - so they wanted me back in two weeks for another ultrasound to measure again. That was yesterday. For a while we were hoping and praying that it was a measurement error, after all when they're so young those things are easy to miscalculate. Unfortunately, the ultrasound technician told me that baby B was clearly smaller, although by how much I don't know just yet. I meet with a specialist on Monday to discuss the severity and seriousness of the growth discordance and until then I am simply praying my heart out.
My husband has been my rock through this, while I'm sure he is just as concerned as I am, his faith and confidence that God has a plan for this has been unwavering. I admit, I am less steady. Although by his example I am gaining a better grip on my faith each day. My ultimate fear is losing my baby, as would be any mother - but I cannot allow myself to think that way, hard as it may be. I've done some research on other twin moms who have gone or are going through this and it is slowly building my confidence. More and more it seems that with the medical advances today that growth discordance is not the death sentence I imagined it to be at first. It's not good - by any means - and it could mean a long hard road for the rest of this pregnancy, but there is hope. One woman I had spoken to has been on hospital bed rest for 7 weeks now, her twins beginning their growth discordance around the same time as mine. She told me at one point they were measuring 7 weeks apart - that's huge! I'm fairly certain that at the worst mine are measuring between a week or two apart, but again I could be wrong - I hope I'm not. If this is the case I am mentally preparing myself for bed rest, hospital bed rest, and premature delivery. I did some more googling and found the following chart. It is the survival rate based on weekly gestation of an infant:
22 weeks: 0-10% survival rate
at 23 weeks: 10-35% survival rate
at 24 weeks: 40-70% survival rate
at 25 weeks: 50-80% survival rate
at 26 weeks: 80-90% survival rate
at 27 weeks: greater than 90% survival rate
I know, it's a morbid subject, and it's not something I'm happy to deal with, but nevertheless its better to be prepared. I'm just a day over 18 weeks so the girls viability is quickly approaching - this is good! My first milestone will be to get both babies to at least 25 weeks. Every week is a milestone after that point but the next big one would be 28 weeks, then 30. If I could make it to 30 weeks before delivering, I will be over the moon. Thats 3 months. Three months seems like a lifetime away, but at the same time it seems like no time at all. I'm trying to trust in God's plan completely - He gave me these babies and I am praying He lets me keep them.
Many people are telling me that this is a test - they may be right. A test to see how much faith I truly have, and I fear I am sadly failing that test. Although every day I fear less and trust more, maybe it's less of a test than a faith building experience. After all - what can I do? Follow doctors orders, but what else? I cannot myself make the babies grow, I cannot protect them from themselves or my body, what happens is in God's hands and that is all there is to it. So I ask only that as I pray, that you would pray with me as well. I love these girls so much, so does their daddy, and I can't imagine losing one of them so far into this process. The more prayers we can get, the better.
Anyway this is long enough for now, if you've made it all the way through I applaud you. I'll update again soon, probably after my meeting with the specialist on Monday when I'll have all kinds of new information (we hope). Until then may God bless your family and keep you in His hands.
Love,
Mommy + 2
So how to update... I'm currently 18 weeks pregnant with our little twins and we found out two weeks ago that they will be GIRLS! We're so elated, I can't wait to meet my little princess. However, it wouldn't be life without some trial and tribulation - right?
Last week my doctor called me with the results of our 16 week ultrasound and told me there was a trend toward growth discordance in the twins. Twin A - London, seemed to be doing just fine, but twin B - Evie, was measuring 20% behind. This is, needless to say, one piece of news I was neither prepared to happy to hear. Growth discordance can be very dangerous to one or both of the twins - so they wanted me back in two weeks for another ultrasound to measure again. That was yesterday. For a while we were hoping and praying that it was a measurement error, after all when they're so young those things are easy to miscalculate. Unfortunately, the ultrasound technician told me that baby B was clearly smaller, although by how much I don't know just yet. I meet with a specialist on Monday to discuss the severity and seriousness of the growth discordance and until then I am simply praying my heart out.
My husband has been my rock through this, while I'm sure he is just as concerned as I am, his faith and confidence that God has a plan for this has been unwavering. I admit, I am less steady. Although by his example I am gaining a better grip on my faith each day. My ultimate fear is losing my baby, as would be any mother - but I cannot allow myself to think that way, hard as it may be. I've done some research on other twin moms who have gone or are going through this and it is slowly building my confidence. More and more it seems that with the medical advances today that growth discordance is not the death sentence I imagined it to be at first. It's not good - by any means - and it could mean a long hard road for the rest of this pregnancy, but there is hope. One woman I had spoken to has been on hospital bed rest for 7 weeks now, her twins beginning their growth discordance around the same time as mine. She told me at one point they were measuring 7 weeks apart - that's huge! I'm fairly certain that at the worst mine are measuring between a week or two apart, but again I could be wrong - I hope I'm not. If this is the case I am mentally preparing myself for bed rest, hospital bed rest, and premature delivery. I did some more googling and found the following chart. It is the survival rate based on weekly gestation of an infant:
22 weeks: 0-10% survival rate
at 23 weeks: 10-35% survival rate
at 24 weeks: 40-70% survival rate
at 25 weeks: 50-80% survival rate
at 26 weeks: 80-90% survival rate
at 27 weeks: greater than 90% survival rate
I know, it's a morbid subject, and it's not something I'm happy to deal with, but nevertheless its better to be prepared. I'm just a day over 18 weeks so the girls viability is quickly approaching - this is good! My first milestone will be to get both babies to at least 25 weeks. Every week is a milestone after that point but the next big one would be 28 weeks, then 30. If I could make it to 30 weeks before delivering, I will be over the moon. Thats 3 months. Three months seems like a lifetime away, but at the same time it seems like no time at all. I'm trying to trust in God's plan completely - He gave me these babies and I am praying He lets me keep them.
Many people are telling me that this is a test - they may be right. A test to see how much faith I truly have, and I fear I am sadly failing that test. Although every day I fear less and trust more, maybe it's less of a test than a faith building experience. After all - what can I do? Follow doctors orders, but what else? I cannot myself make the babies grow, I cannot protect them from themselves or my body, what happens is in God's hands and that is all there is to it. So I ask only that as I pray, that you would pray with me as well. I love these girls so much, so does their daddy, and I can't imagine losing one of them so far into this process. The more prayers we can get, the better.
Anyway this is long enough for now, if you've made it all the way through I applaud you. I'll update again soon, probably after my meeting with the specialist on Monday when I'll have all kinds of new information (we hope). Until then may God bless your family and keep you in His hands.
Love,
Mommy + 2
