I very rarely discuss my online support group. I've been blessed and honored to be a part of a special group of women that met online during one of the toughest moments of our lives. Back in 2006 when I had my first miscarriage, I was looking to make sense of it all and to find some kindred spirits in the journey of getting back to trying for another baby. I think I cyber stalked them for a few months, cautious of getting involved. I'm not the type to join anything, so this was something I felt was a big step emotionally. And then I thought, "what the heck do I have to lose, I don't know these women." Months went by and slowly women started getting pregnant with their rainbow babies (pregnancy after a loss). Some women went on to have another painful loss, some had babies within the year. Others, like me, took a lot longer to get pregnant. What we had was the strength and support of all the members who "got it." Miscarriage is not something usually discussed with family and friends. No one in my family or any friends had experienced this and although they were there for me and felt my pain, they didn't "get it" like these women who had been through it. And how could I expect them to?
Over the years, some of us have met up in person. We had a reunion in Texas where a group of us were able to meet and hang out for a few days with our babies. It's interesting how after a few years of chatting online, you really do know a person. That face to face interaction may not be there, but the soul transfers through the words. It's hard to understand and Rick surely didn't get why I'd spend an hour or so a day corresponding with women "I didn't know", but after hearing about their lives and meeting some of them himself, he agrees what a great group of women I lucked out finding.
When we were in Cincinnati, we met up with two of the women and their husbands for dinner. It wasn't awkward, there were no nervous gaps in conversation. It was a fun dinner with friends and random talk just like any other dinner would be. It was also a much needed break from the stress and emotion of the long appointments. We had "family" in a place we had never been, during a time that I'd never want to relive. But we had one night that seemed normal and took us away from why we were there in the first place.
One woman lives fairly close by so we get together periodically for play dates. We were invited to her son's birthday party last week. As we were leaving, she told me all our "Lil PALS" got together and wanted to do something for me during this time. She presented me with a styrofoam cooler, packed with a weeks worth of frozen prepared dinners from a gourmet service. With that were gift certificates for take out and grocery, a DVD and coloring book for Sophia, and a delicately made scrapbook of all the Lil PALS kids and a note to me. I was so deeply moved by their generosity and love to do this for me. For my family.
I just want to give a big shout out to my supporting cast and crew that is seemingly behind the scenes, but such a very large part of my everyday life. Without you, I really don't know how I would have ever survived what is typically a very lonely struggle through infertility, miscarriages, and pregnancy complications. Thank you.
Thursday, September 30, 2010
Monday, September 27, 2010
A little Sophia catch-up
For those family members that check in to see updates of Sophia, I think it's a little overdue and much needed. Sophia is already into that "why" stage for everything. And I try to answer her questions to the best of my ability, sometimes impressing myself with answers to random questions! But even when I give her what I think is a good answer, she says "because why?" Where the heck did she get the "because" part of it? I never answer "because" so I have no clue. This little girl is stubborn, too. Yes, karma, I know. But she's actually really easy to reason with. As long as I tell her exactly what is going to happen and how it's going to happen, she'll go along with it. But if I try to spring anything on her, she is completely resistant. She prefers Daddy's tools over baby dolls, picking up bugs instead of picking flowers, and rough housing over cuddles. But she has her girlie side as well. She loves to wear dresses, wants to wear lipstick, and she's infatuated with anything Tinker Bell (although Tinker Bell is a bit of a sassy tomboy, so I guess Sophia can relate). She's a week shy of 2 1/2 years old now. We are still working on potty training which is going slower than I'd like. It would be fantastic to have her out of diapers before these babies come, but one thing I've learned is that Sophia will do it when she's good and ready. I just hope it's sooner than later! She's become quite the picky eater, so any effort of cooking dinner just for her is wasted. She'd rather have the processed chicken or fish sticks, quesadilla, or grilled cheese sandwich. She's even started resisting my pasta dishes, preferring Kraft mac 'n cheese over anything I make. I still hold out on these things for most of the week, but by the weekend I give in and let her indulge. She still loves fruit and beans!
adventurer and animal lover
daredevil
my gifted child...
the artist
fashionista
adventurer and animal lover
daredevil
Thursday, September 23, 2010
Another "new" OB appointment
Now that I'm officially transferred to the Peri for all pregnancy stuff, I had to have an OB appointment. Got the results that I passed the 1 hour non-fasting glucose tolerance test. This is not only a good thing as far as my blood sugar and diet are concerned, it's also going to play a part in steroid shots to help the babies lungs develop in case they deliver early. The steroid shot also tends to jump the blood sugar levels in ones system, which can cause complications if one doesn't tolerate sugar well as it is. So at least it's something additional that I don't have to worry about. I am still trying to figure out the risks and benefits of getting a steroid shot at 24 weeks vs. later on, maybe 26 or 28 weeks. They can only do the shots 4 weeks apart and for 2 doses because after that, there can be a risk of adverse impact on the babies, including small head circumference and slowed body growth. So I'm hoping that with a little more research I can make an educated decision in the next week or so.
With the outbreak of whooping cough in California, the new recommendation is to give a Pertussis booster to pregnant woman. While I'm all about vaccination, I just feel that adding more to this already precarious situation may be too much, and there aren't too many statistics about side effects for pregnant women and unborn babies. Also, it's just recommended for women in the 2nd and 3rd trimester-- these are red flags for me. So I opted to have the vaccine immediately following delivery and I'm going to see if we can get Rick one at the same time. I did get the flu shot at the appointment. And they added the H1N1 to the regular flu shot this year so that's a bonus.
With the outbreak of whooping cough in California, the new recommendation is to give a Pertussis booster to pregnant woman. While I'm all about vaccination, I just feel that adding more to this already precarious situation may be too much, and there aren't too many statistics about side effects for pregnant women and unborn babies. Also, it's just recommended for women in the 2nd and 3rd trimester-- these are red flags for me. So I opted to have the vaccine immediately following delivery and I'm going to see if we can get Rick one at the same time. I did get the flu shot at the appointment. And they added the H1N1 to the regular flu shot this year so that's a bonus.
Sunday, September 19, 2010
Preliminary discussion with the Neonatologist
While I think it may have been a bit premature to have a meeting with the Neonatologist, the Perinatologist advised I have a discussion to get an idea of what risk/benefit there may be for delivering the twins from 24 weeks on out. Yes, 24 weeks is insanely early and the specialist agreed with my decision to hold out until 28 weeks at the bare minimum. Of course who knows what the actual decision would be if baby B shows signs of going downhill quickly before 28 weeks, but the odds of survival before a 28 week delivery are 50%, not to mention the risks of blindness, deafness, mental disabilities, brain aneurysms--the list goes on and on--are incredibly likely before 28 weeks. Not to say there aren't babies out there who have been born before 28 weeks that made it out perfectly fine after months in the NICU. But realistically, twins are already prone to be born underweight, so it would not be an optimal condition to start from. And looking at the current statistics of baby A's likelihood of having adverse effects if baby B doesn't make it in utero, it's a 20% chance she would be impacted. Giving birth to her before 28 weeks gives her a 50% that she would be impacted. I'm not great at math, but there is finally a statistic thrown my way that I don't have to flip a coin for.
But really, the conversation wasn't about baby A with the Neonatologist. It was about baby B and how her current condition in utero may play out outside of the womb. Bottom line is that it's not good. Feel free to skip the rest of this post if you don't want to read the nitty gritty. You've been warned.
The conversation started out fairly straightforward. The hospital I am scheduled to deliver at has a level 3 NICU (neonatal intensive care unit) with doctors that work at this hospital and at the Children's hospital as a cohesive team. If surgery is required, the hospitals would coordinate to transfer baby B to Children's hospital once she's stabilized. Children's hospital is not set up for deliveries, and my hospital is not set up for that type of surgery. A team would be present in the delivery room (in my case the operating room where I will have a c-section) that would be able to intubate and put an umbilical line in baby B in case her heart does need surgery. As for baby A, depending on the amount of prematurity, both hospitals are equipped to handle her. She could also be transferred to Children's once I am released from the hospital, so we wouldn't have to make two separate trips. Straightforward.
Then I started asking the tough questions:
Has this Neonatologist ever cared for a baby with this size cystic hygroma?
Yes, he has seen this and most often the cystic hygroma outside of the womb of this size will have some impact to the airway and they may not be able to intubate. She may not be able to breathe on her own and they may not be able to do anything about it. They would suggest that everything done to make her comfortable and let us spend as much time with her as possible until she passed.
Has the Neonatologist cared for a baby with the level of fluid inside her body and also with the amount of skin edema she has collected?
Yes, he's seen this as well though not in addition to a cystic hygroma. Typically the hydrops causes problems once the baby is born because it is at this time that the lungs, heart, and other organs really need to work. If the fluid is pressing on these organs, they will not function properly and may have not really developed properly at all given the fluid in utero. While in utero, the baby relies on the placenta to do the heavy lifting. Outside of the womb, she's on her own. Draining the fluid will only help at that point of time, but the underlying reason for why the fluid is there will continue, as will the fluid typically build back up.
Has this Neonatologist cared for a baby with coarctation of the heart?
Yes, they typically stabilize the baby and transfer the baby to Children's for a fairly routine procedure that involves minimal risks. It would not be open heart surgery. They would go in through the side with a bra line incision to repair the coarctation. However, baby B may also have left ventricle narrowing, which would be an invasive surgery and may require future surgeries. I will have another echo on baby B's heart in the next few weeks to see if the cardiologist can pinpoint what really is needed. Even with two echos in Cincinnati, the images weren't great enough to be able to determine the exact issues she has. However, they would need to have her stabilized, and the cystic hygroma and hydrops add a lot of uncertainty that would happen at all. Not to mention what type of surgery is necessary and they may recommend making her as comfortable as possible and do nothing.
Has this Neonatologist ever seen a baby with Turner's Syndrome present all of these factors and survived? No. Not only has he not seen a baby with this much going on, he's never seen a baby with half this much fair well. But here's the thing. California is very liberal with abortion and most often when told that their baby has these issues, they decide to terminate the pregnancy. And never has there been a situation where there is one baby who has all these issues, and a co-twin who has no issues. Most often the specialist are dealing with a singleton pregnancy.
The Neonatologist admitted that my situation is like nothing he's seen and that he is going to put some calls out to other colleagues to discuss further. He told me that any decision we decide to make during this process and after the babies are born, are completely supported. Because quite honestly, no one knows what may happen and no one knows what the best decision will be. It may also be discussed to have me deliver the babies at Stanford, where they have the advantage of a delivery and level 4 NICU at the same place. This is something we'll discuss further out.
So here's the human side of things. The Neonatologist asked how I'm even capable of having this bare bones discussion and keeping it all together. He said he's never had a discussion with a parent that seemed more like talking to a colleague. I'd been asked this in Cincinnati. I get that it's hard for people to imagine having to have these discussions. I also know that if I broke down and cried or sat there in silence, I would not get half the information I need to make an informed decision. If I don't do my own research of medical journals or message boards with humans telling their stories, I wouldn't have those questions to ask. I know I'm in uncharted territory here, and I owe it to these babies to keep it together for their sake. I have my moments, definitely. But we've made the decision to see this through and there's no going back. From here on out I have to stay informed and listen to all the grim stuff, while keeping hope that maybe, just maybe baby B will prove everyone wrong. Maybe a miracle is out there waiting for us. It's up to her, baby B, how this plays out. And she's been quite strong. Or maybe baby A has something to do with baby B's strength. They are connected to the placenta and vascular structure. Who's to say they aren't fighting as a team to keep it all together? The doctors surely don't know at this point, so until we have any indication that things aren't going to turn out, we need to keep strong and hope for the best possible outcome.
But really, the conversation wasn't about baby A with the Neonatologist. It was about baby B and how her current condition in utero may play out outside of the womb. Bottom line is that it's not good. Feel free to skip the rest of this post if you don't want to read the nitty gritty. You've been warned.
The conversation started out fairly straightforward. The hospital I am scheduled to deliver at has a level 3 NICU (neonatal intensive care unit) with doctors that work at this hospital and at the Children's hospital as a cohesive team. If surgery is required, the hospitals would coordinate to transfer baby B to Children's hospital once she's stabilized. Children's hospital is not set up for deliveries, and my hospital is not set up for that type of surgery. A team would be present in the delivery room (in my case the operating room where I will have a c-section) that would be able to intubate and put an umbilical line in baby B in case her heart does need surgery. As for baby A, depending on the amount of prematurity, both hospitals are equipped to handle her. She could also be transferred to Children's once I am released from the hospital, so we wouldn't have to make two separate trips. Straightforward.
Then I started asking the tough questions:
Has this Neonatologist ever cared for a baby with this size cystic hygroma?
Yes, he has seen this and most often the cystic hygroma outside of the womb of this size will have some impact to the airway and they may not be able to intubate. She may not be able to breathe on her own and they may not be able to do anything about it. They would suggest that everything done to make her comfortable and let us spend as much time with her as possible until she passed.
Has the Neonatologist cared for a baby with the level of fluid inside her body and also with the amount of skin edema she has collected?
Yes, he's seen this as well though not in addition to a cystic hygroma. Typically the hydrops causes problems once the baby is born because it is at this time that the lungs, heart, and other organs really need to work. If the fluid is pressing on these organs, they will not function properly and may have not really developed properly at all given the fluid in utero. While in utero, the baby relies on the placenta to do the heavy lifting. Outside of the womb, she's on her own. Draining the fluid will only help at that point of time, but the underlying reason for why the fluid is there will continue, as will the fluid typically build back up.
Has this Neonatologist cared for a baby with coarctation of the heart?
Yes, they typically stabilize the baby and transfer the baby to Children's for a fairly routine procedure that involves minimal risks. It would not be open heart surgery. They would go in through the side with a bra line incision to repair the coarctation. However, baby B may also have left ventricle narrowing, which would be an invasive surgery and may require future surgeries. I will have another echo on baby B's heart in the next few weeks to see if the cardiologist can pinpoint what really is needed. Even with two echos in Cincinnati, the images weren't great enough to be able to determine the exact issues she has. However, they would need to have her stabilized, and the cystic hygroma and hydrops add a lot of uncertainty that would happen at all. Not to mention what type of surgery is necessary and they may recommend making her as comfortable as possible and do nothing.
Has this Neonatologist ever seen a baby with Turner's Syndrome present all of these factors and survived? No. Not only has he not seen a baby with this much going on, he's never seen a baby with half this much fair well. But here's the thing. California is very liberal with abortion and most often when told that their baby has these issues, they decide to terminate the pregnancy. And never has there been a situation where there is one baby who has all these issues, and a co-twin who has no issues. Most often the specialist are dealing with a singleton pregnancy.
The Neonatologist admitted that my situation is like nothing he's seen and that he is going to put some calls out to other colleagues to discuss further. He told me that any decision we decide to make during this process and after the babies are born, are completely supported. Because quite honestly, no one knows what may happen and no one knows what the best decision will be. It may also be discussed to have me deliver the babies at Stanford, where they have the advantage of a delivery and level 4 NICU at the same place. This is something we'll discuss further out.
So here's the human side of things. The Neonatologist asked how I'm even capable of having this bare bones discussion and keeping it all together. He said he's never had a discussion with a parent that seemed more like talking to a colleague. I'd been asked this in Cincinnati. I get that it's hard for people to imagine having to have these discussions. I also know that if I broke down and cried or sat there in silence, I would not get half the information I need to make an informed decision. If I don't do my own research of medical journals or message boards with humans telling their stories, I wouldn't have those questions to ask. I know I'm in uncharted territory here, and I owe it to these babies to keep it together for their sake. I have my moments, definitely. But we've made the decision to see this through and there's no going back. From here on out I have to stay informed and listen to all the grim stuff, while keeping hope that maybe, just maybe baby B will prove everyone wrong. Maybe a miracle is out there waiting for us. It's up to her, baby B, how this plays out. And she's been quite strong. Or maybe baby A has something to do with baby B's strength. They are connected to the placenta and vascular structure. Who's to say they aren't fighting as a team to keep it all together? The doctors surely don't know at this point, so until we have any indication that things aren't going to turn out, we need to keep strong and hope for the best possible outcome.
Saturday, September 18, 2010
Scheduled bi-weekly ultrasound
Now that we are in maintenance mode here for the remainder of the pregnancy, I will have an ultrasound every 2 weeks until probably 28 weeks, and then possibly hospital stay until the golden number 34 weeks. That's as much of a plan we can set, depending on unforeseen circumstances.
So yesterday was my scheduled ultrasound and baby B is still status quo. Her fluid continues to grow with her, and stays about the same in relation to her body size. The cystic hygroma is 13 cm at this point, which is wildly large. But she really doesn't seem that affected by it. She kicks and moves just like her sister, baby A. The hydrops continue to be present, although her heart rate doesn't seem to be impacted by the fluid either, it was within normal range of 176.
I am officially a patient of the Perinatologist office now. The Peri ordered a non-fasting gestational diabetes test, which I had done yesterday. My blood pressure looks good and there is no protein in my urine. The last thing I need is any other complications. I had the Peri check out my varicose veins and was told there's really nothing that can be done about the one in the groin/inner thigh area. The Peri also set up a meeting with a Neonatologist yesterday, which I'll expand on in the next post.
As for other things, I can feel pretty steady movements from baby A on the right side. She's the boxer. Baby B isn't so predictable, but I can feel her softer kicks on the left side. I can also feel kicking from the outside now, which is fun to share if someone is around. Sophia has yet to feel anything, but she hugs and kisses her babies regularly now. She says, "Awww, I like the babies!" And plants kisses on my tummy and tries to wrap her arms around the enormous mass to give them hugs.
Speaking of my enormous mass of a belly, I got some new maternity tops last week and hopefully they last through the remainder of the pregnancy. I also got some leggings which I swore I would never wear again after the fashion fad of the 80's-90's, but once I put them on I just had to get some. I hate to admit how comfortable they are.
So yesterday was my scheduled ultrasound and baby B is still status quo. Her fluid continues to grow with her, and stays about the same in relation to her body size. The cystic hygroma is 13 cm at this point, which is wildly large. But she really doesn't seem that affected by it. She kicks and moves just like her sister, baby A. The hydrops continue to be present, although her heart rate doesn't seem to be impacted by the fluid either, it was within normal range of 176.
I am officially a patient of the Perinatologist office now. The Peri ordered a non-fasting gestational diabetes test, which I had done yesterday. My blood pressure looks good and there is no protein in my urine. The last thing I need is any other complications. I had the Peri check out my varicose veins and was told there's really nothing that can be done about the one in the groin/inner thigh area. The Peri also set up a meeting with a Neonatologist yesterday, which I'll expand on in the next post.
As for other things, I can feel pretty steady movements from baby A on the right side. She's the boxer. Baby B isn't so predictable, but I can feel her softer kicks on the left side. I can also feel kicking from the outside now, which is fun to share if someone is around. Sophia has yet to feel anything, but she hugs and kisses her babies regularly now. She says, "Awww, I like the babies!" And plants kisses on my tummy and tries to wrap her arms around the enormous mass to give them hugs.
Speaking of my enormous mass of a belly, I got some new maternity tops last week and hopefully they last through the remainder of the pregnancy. I also got some leggings which I swore I would never wear again after the fashion fad of the 80's-90's, but once I put them on I just had to get some. I hate to admit how comfortable they are.
Sunday, September 12, 2010
"Normal" complaints
I've decided to give myself a free post to complain about normal twin pregnancy things. I remember when I got pregnant with Sophia telling my OB/GYN that I hoped I was pregnant with twins. She looked at me very seriously and said, "No you don't." I felt that was a little harsh. We'd been trying for so long to get pregnant, I wanted a jumpstart.
So now we are in the present, and boy what a challenge it is being pregnant with twins. OK, besides the obvious craziness of the last 2 months finding out the additional challenges we are facing. I mean the actual pregnancy stuff.
I have a road map of a large city on my left leg. These spider veins have taken over the entire lower calf, and are starting to move their way up my thigh. And I'm sure it's no coincidence that I have a huge varicose vein protruding from the left side of my pubic bone/inner thigh area. That varicose vein I've deemed the culprit who has decided to set up his battalion to trail blaze down my leg. And it hurts. Throbbing hurts. No, I refuse to wear support hose. I know the suffering will fall on deaf ears from my Peri and OB/GYN who insist that is the only way to go.
I've invested in a support pillow. Boppy makes this new one I like a whole lot better than individual pillows, and it's more comfortable that a pillow I had bought while pregnant with Sophia. This allows me to turn from side to side better, because that's what I spend my whole night doing. I can't get comfortable. I have a mini fortress surrounding me and any attempts from Rick to cuddle anywhere near me is futile.
Speaking of sleeping, I now wake up an additional time in the night due to acid reflux. So twice to go to the bathroom and once to take some midnight Tums relief.
I feel like my stomach is literally going to split in half and out will project these babies and my guts in a B rate style gore flick. Something has literally got to give here. Every once in a while I feel this tearing sensation, as if my skin ripped a little on the inside.
I can't lift Sophia out of a shopping cart anymore. No more trips with her to the grocery, Target, grocery, grocery...grocery. This is devastating to me. Sad, but true.
I can't wear my normal bras. I don't fit into any of my old maternity shirts. It's hard to shave my legs, tie my shoes, get up from a sitting position, breathe.
I'm sure there are a few more, but these are the biggies.
Did you know I'm only halfway through this pregnancy?
So now we are in the present, and boy what a challenge it is being pregnant with twins. OK, besides the obvious craziness of the last 2 months finding out the additional challenges we are facing. I mean the actual pregnancy stuff.
I have a road map of a large city on my left leg. These spider veins have taken over the entire lower calf, and are starting to move their way up my thigh. And I'm sure it's no coincidence that I have a huge varicose vein protruding from the left side of my pubic bone/inner thigh area. That varicose vein I've deemed the culprit who has decided to set up his battalion to trail blaze down my leg. And it hurts. Throbbing hurts. No, I refuse to wear support hose. I know the suffering will fall on deaf ears from my Peri and OB/GYN who insist that is the only way to go.
I've invested in a support pillow. Boppy makes this new one I like a whole lot better than individual pillows, and it's more comfortable that a pillow I had bought while pregnant with Sophia. This allows me to turn from side to side better, because that's what I spend my whole night doing. I can't get comfortable. I have a mini fortress surrounding me and any attempts from Rick to cuddle anywhere near me is futile.
Speaking of sleeping, I now wake up an additional time in the night due to acid reflux. So twice to go to the bathroom and once to take some midnight Tums relief.
I feel like my stomach is literally going to split in half and out will project these babies and my guts in a B rate style gore flick. Something has literally got to give here. Every once in a while I feel this tearing sensation, as if my skin ripped a little on the inside.
I can't lift Sophia out of a shopping cart anymore. No more trips with her to the grocery, Target, grocery, grocery...grocery. This is devastating to me. Sad, but true.
I can't wear my normal bras. I don't fit into any of my old maternity shirts. It's hard to shave my legs, tie my shoes, get up from a sitting position, breathe.
I'm sure there are a few more, but these are the biggies.
Did you know I'm only halfway through this pregnancy?
Wednesday, September 1, 2010
Que Sera, Sera
Remember the song Doris Day sang? Look up the lyrics if you aren't familiar with the song Que Sera, Sera. It seems fitting to be humming this tune in my head as I write this update.
So here's the technical part: I had a level 2 u/s for fluid level check for the cystic hygroma and hydrops in her stomach area. I repeated an echo for her heart as well. The cardiologists found a small coarctation of the artery and a possible right ventrical narrowing. Both issues would not be detrimental in utero, however will most likely require immediate heart surgery to correct within the few days after birth. This information is helpful to us because if she does make it, she'll require a cardiac team to be available upon delivery to insert an umbilical IV to give her medication to keep the valve open until they can do a procedure.
We met with the team at the end of the day and discussed the options. Because they feel that the fluid levels in the CH, hydrops, and skin edema appear to be stable, they think she may have a chance of survival to birth. Due to the hygroma size of 4 cm, they don't feel she will make it full term so the best case scenario would probably be to have a c-section at 30 weeks to help her sister (baby A) get as much development as possible and increase her chance (baby B) to develop so that it would be less of a risk for her heart surgery. Why can't they drain the cystic hygroma and/or hydrops? Well it's ultimately a lymphatic system issue and the fluid would come back unless it starts to correct itself on its own. That's the wait and see part. Also, draining would cause increased risk of rupturing the membrane (preterm labor) and these babies are constantly moving and kicking, so there isn't a lot they could do to keep her still enough to make sure they don't puncture other areas.
The RFA (cord coagulation, basically termination) of baby B is no longer an option due to multiple reasons, mainly ethical but also that their statistics show 1 out of 4 RFA procedures has resulted in the loss of the co-twin. So while this would be the last possible option, the idea would be to protect baby A and instead it shows that by doing this we may increase the risk of death to her.
The separation of the placenta (they have equal share of one placenta) is also too risky to chance for us, given their statistics and due to the positions of both babies, and also that I have an anterior placenta. They also cannot guarantee that they'd be able to successfully separate the shared veins without risk additional risk to both babies and also risk to myself. So with all that information, we decided to do nothing. This decision comes with many risks, but they seem to be less than doing a procedure. Baby A is at an increased risk of cerebral palsy and brain defects if baby B doesn't survive in utero.
There were circumstances that were mentioned that were not mentioned in the last trip. I feel like I got more results and clearly defined parameters this time, where there were a lot more questions the last time around.
The absolute bottom line is that no one has ever dealt with this particular circumstance and they are not comfortable making a decision with absolutely no data to give them any reference. The only data they have is for one twin who would not make it, no matter what. Never have they had a situation where one twin "might" make it if they do nothing.
The doctor in Cincinnati told me I'd most likely have these babies by 30 weeks. A few things point in that direction. Baby B is taking up a lot of room with her fluid in her cystic hygroma, which puts a lot of more pressure on my system and typically these type of babies deliver earlier, even in singleton pregnancies--so in a twin pregnancy it's that much more complicated. Also, there may have to be a decision/compromise between baby B's health as she continues to grow and baby A's development. 30 weeks would be that magic number where they both would have a good chance at minimal time in NICU for baby A and baby B's development would be just enough where heart issues, etc. won't pose any additional risks than already present by being premature. Anything before 30 weeks (26 weeks to 30 weeks) would add additional stress to baby B by getting her developed enough to add heart surgery onto the list of premie issues, and baby A would also have premie issues to deal with. Anything after 30 weeks may start causing concern if baby B shows no signs of fluid levels going down, as mentioned above. They won't want to risk preterm labor knowing that I'd need to have a cardiac team on hand when baby B comes out. At this point in time (20 weeks) baby B's fluid levels seem to remain the same and are growing in relation to her development. So while they'd like to see the levels go down, it could be that they stay this way the whole time. If the fluid levels stay this way until birth, the cystic hygroma could be drained, but may come back and eventually resolve as the lymphatic system matures, or it could come back if she gets an infection at some point in time. This could be an issue that will be managed into adulthood.
I see my regular Perinatologist tomorrow to discuss things moving forward. I had called him from Cincinnati after the consultation and he's concerned about his diagnosis vs. the diagnosis with the team in Cincinnati. So he was going to talk to the doctors to see if maybe they had a medical opinion other than what they shared with me. Even if so, unless we see significant changes in baby B's condition, it's que sera, sera from here on out.
So here's the technical part: I had a level 2 u/s for fluid level check for the cystic hygroma and hydrops in her stomach area. I repeated an echo for her heart as well. The cardiologists found a small coarctation of the artery and a possible right ventrical narrowing. Both issues would not be detrimental in utero, however will most likely require immediate heart surgery to correct within the few days after birth. This information is helpful to us because if she does make it, she'll require a cardiac team to be available upon delivery to insert an umbilical IV to give her medication to keep the valve open until they can do a procedure.
We met with the team at the end of the day and discussed the options. Because they feel that the fluid levels in the CH, hydrops, and skin edema appear to be stable, they think she may have a chance of survival to birth. Due to the hygroma size of 4 cm, they don't feel she will make it full term so the best case scenario would probably be to have a c-section at 30 weeks to help her sister (baby A) get as much development as possible and increase her chance (baby B) to develop so that it would be less of a risk for her heart surgery. Why can't they drain the cystic hygroma and/or hydrops? Well it's ultimately a lymphatic system issue and the fluid would come back unless it starts to correct itself on its own. That's the wait and see part. Also, draining would cause increased risk of rupturing the membrane (preterm labor) and these babies are constantly moving and kicking, so there isn't a lot they could do to keep her still enough to make sure they don't puncture other areas.
The RFA (cord coagulation, basically termination) of baby B is no longer an option due to multiple reasons, mainly ethical but also that their statistics show 1 out of 4 RFA procedures has resulted in the loss of the co-twin. So while this would be the last possible option, the idea would be to protect baby A and instead it shows that by doing this we may increase the risk of death to her.
The separation of the placenta (they have equal share of one placenta) is also too risky to chance for us, given their statistics and due to the positions of both babies, and also that I have an anterior placenta. They also cannot guarantee that they'd be able to successfully separate the shared veins without risk additional risk to both babies and also risk to myself. So with all that information, we decided to do nothing. This decision comes with many risks, but they seem to be less than doing a procedure. Baby A is at an increased risk of cerebral palsy and brain defects if baby B doesn't survive in utero.
There were circumstances that were mentioned that were not mentioned in the last trip. I feel like I got more results and clearly defined parameters this time, where there were a lot more questions the last time around.
The absolute bottom line is that no one has ever dealt with this particular circumstance and they are not comfortable making a decision with absolutely no data to give them any reference. The only data they have is for one twin who would not make it, no matter what. Never have they had a situation where one twin "might" make it if they do nothing.
The doctor in Cincinnati told me I'd most likely have these babies by 30 weeks. A few things point in that direction. Baby B is taking up a lot of room with her fluid in her cystic hygroma, which puts a lot of more pressure on my system and typically these type of babies deliver earlier, even in singleton pregnancies--so in a twin pregnancy it's that much more complicated. Also, there may have to be a decision/compromise between baby B's health as she continues to grow and baby A's development. 30 weeks would be that magic number where they both would have a good chance at minimal time in NICU for baby A and baby B's development would be just enough where heart issues, etc. won't pose any additional risks than already present by being premature. Anything before 30 weeks (26 weeks to 30 weeks) would add additional stress to baby B by getting her developed enough to add heart surgery onto the list of premie issues, and baby A would also have premie issues to deal with. Anything after 30 weeks may start causing concern if baby B shows no signs of fluid levels going down, as mentioned above. They won't want to risk preterm labor knowing that I'd need to have a cardiac team on hand when baby B comes out. At this point in time (20 weeks) baby B's fluid levels seem to remain the same and are growing in relation to her development. So while they'd like to see the levels go down, it could be that they stay this way the whole time. If the fluid levels stay this way until birth, the cystic hygroma could be drained, but may come back and eventually resolve as the lymphatic system matures, or it could come back if she gets an infection at some point in time. This could be an issue that will be managed into adulthood.
I see my regular Perinatologist tomorrow to discuss things moving forward. I had called him from Cincinnati after the consultation and he's concerned about his diagnosis vs. the diagnosis with the team in Cincinnati. So he was going to talk to the doctors to see if maybe they had a medical opinion other than what they shared with me. Even if so, unless we see significant changes in baby B's condition, it's que sera, sera from here on out.
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