We have returned once again from SF. Sometimes I feel like these days pass so slowly. I am taking it week by week and breath a small sigh of relief as we get through another week and are still PREGNANT with healthy baby girls.
We dodged surgery again this week and hope to continue that streak. We had our ultrasound yesterday and it went a little quicker than usual because they did not do measurements on the size of the girls. They only looked at fluid levels, bladders, and doppler blood flow through the umbilical cords and placenta. Since measurements on size were done 8 days ago they will do them next week. They have to give the girls at least two weeks to grow to determine major changes. Next weeks ultrasound will be about twice as long for this reason.
We have had no major changes as of this week, so that is a good sign for us at this point. The doctor does say that if you look at my case on paper it doesn't look too great. BUT, with his experience and the many cases he deals with in similar situations we are doing quite well and hopefully won't need to do surgery. The fluid level in Baby A's sac is still hovering around 10.5cm which is termed polyhydramnios (meaning excessive fluid) and baby b was marginally better at around 3.8cm (normal range). There really isn't an issue with having too much fluid. The Dr. explains it is just like having a swimming pool for Baby A rather than a bathtub. The problem you can have with excessive fluid is symptoms that are uncomfortable for mom. You can get up to the 15cm range and start to have a lot of tightening from the growth of your belly. It can cause difficulty breathing for me because the fluid is pushing up on my lungs and making it hard to breath. Also, it can put pressure on your cervix and cause preterm labor and or contractions. Luckily, so far I have not had any of these symptoms. Hopefully I can tolerate them enough to get through it without any intervention since it really is not a health concern for Baby A. If it does need to be remedied due to preterm labor I may need an amnioreduction.
An amnioreduction is where they place a needle in the sac of Baby A and drain some of the excess fluid off. This procedure was done in 3 out of his last 25 cases. It worked in those 3 cases and the pregnancies were able to continue and average of 100 more days. It was also able to "tide them over" until delivery. Sounds Promising to me. Hopefully I can avoid all needles in my belly though.
As for Baby B (smaller baby with fluid of 3.8) she seems to be doing well. She still has a visible and normal size bladder. This is music to my ears. I have never been so happy to hear such great news about pee!!! As long as she continues to have some fluid >2, a normal bladder, and grow we are on the right track. She definitely has a velamentous cord insertion (off to the side of the placenta). We won't know the unequal placental share ratios until after birth. We will be given a Placenta box to give to our physician in Roseville ( because I hope to be able to deliver big healthy babies there). She will pack the placenta in the box and mail it to UCSF where they will inject blue and yellow dye into it. This will determine which circulation belonged to Baby A, Baby B, and both Baby A and B together or shared. This is helping to further their research on these type of complications.
I think this appt was the least hard on me and I only cried once. Thats progress!! I get very nervous during the ultrasounds because I am scared to hear the results. I now know way to much information to be able to read a lot of what they are doing and and try not to look but curiosity gets the best of me.
It always freaks me out as well when we go into the conference room with the Dr and he has 3 other fellows, surgical aids, and staff sitting in as well. I know they are learning and such but I see all of them and think "HOLY crap what is wrong." They definitely are top notch in SF and I appreciate that. Dr Vicki Feldstein is our radiologist who is an expert in TTTS ultrasound and has gotten to know us pretty well. Dr Larry Rand is our perinatologist and has been wonderful. Our next appt is Fri next week because it is the only day Dr. Felstein is available for the ultrasound. Dr. Rand is not in on Fridays but will be called at home and will talk to us about the findings for a couple of reasons....
1. So we can stay with Dr. Feldstein because he really trusts her
2. Out appt is a Fri and if I need Surgery he and his team can get there early enough to be able to do it before the weekend.
3. I cannot eat before the ultrasound "just in case" I need surgery. Worst case scenario.
This sounds pretty scary but I am so glad he is coordinating it for worst case so that I can get the care I need for these girls if need be. Hopefully we can have the ultrasound and talk to him on the phone and this will be stable enough for no intervention. The waiting and the unknown are the hard part. No rest for the weary since this can change so drastically in a weeks time.
It was nice to be able to come home to a "HI Mommy" from my favorite little guy. He really can brighten my day when Im upset. I love that he wants to snuggle with me after such a emotionally draining day. Thanks for all the prayers and continued thoughts. We really appreciate how wonderful our family and friends have been. I want to give a special thanks to my mom for caring for Cole while we travel back and forth. She is always ready to help and it is invaluable. Keep the prayers coming. You cannot have too many :)
Friday, March 30, 2012
Tuesday, March 27, 2012
21 weeks 4 days
Oh I forgot to mention that we are now going to UCSF weekly as the next few weeks are crucial. We will be there this Thursday for another 3 hour ultrasound and consult with the fetal medicine doctors. Luckily, I feel as though I am in the best hands. UCSF has been wonderful. The doctors and staff really take time to explain things thoroughly. They are extremely knowledgeable and you can tell they really care about what they do. Couples form all over the world travel to UCSF for treatment. Although I would rather no go, I feel like I am in the best hands possible.
21 weeks 1 day
This is the first blog of what I'm sure will be many. Hopefully they will remain simple as no news is good news in our case. Ill give a little background about what we have been going through in the last 5 weeks.
The Latham twins are monochorionic/ diamniotic twins. We found this out about 14 weeks into our pregnancy. This simply means the girls share a placenta (monochorionic) and each have their own sac (diamniotic). The most common type of twins are dichorionic/diamniotic. This means each twin has their own placenta and their own sac. Mono/Di twins as we have in our case are a bit more high risk. A single placenta is meant to nourish and house 1 baby and we are asking it to do the job for 2 babies.
10% of mono/di twins develop a serious condition called twin to twin transfusion syndrome(ttts). This is where one baby becomes a donor twin and one baby becomes the recipient twin. Since they share a placenta and all that comes with it, one baby gets too much nutrition and oxygen (recipient) and the other gets too little (donor). In severe cases the donor baby can become dehydrated and anemic. The recipient baby can get so much that she could go into heart failure from the excessive blood.
At week 16 we got the most exciting news, we were having 2 baby GIRLS!!! We were over the moon. What I thought would be a very exciting visit quickly became overshadowed by the news we might possibly have ttts. There are a few ways doctors diagnose ttts. The amount of fluid in each babies sac, the bladder of the smaller baby, kidney function of smaller baby, size of babies, heart function of both babies, and brain function of both babies help to determine a diagnosis of ttts and the stage in how severe your case is. There are 4 stages of ttts. 1 being the least severe and 4 being most severe where intervention needs to take place in order to save the babies.
The main things that are looked at in weekly ultrasounds of mono/di twins is the fluid in each sac, the size difference from baby A to Baby B and if the babies have normal size bladders. They also use doppler to look at blood flow in the umbilical cords of each baby through the placenta. The normal range for amniotic fluid in each babies sac should be between 5cm and 15cm. The size different in the twins should be < 20%.
This background brings us to where we are today. We have been monitored with weekly ultrasounds in the past 5 weeks alternating with high risk perinatologists in Roseville and the Fetal Treatment Center in San Francisco. UCSF is one of the few places in the entire US that has experts in this condition and the means for surgical intervention to treat it.
So far, we have been told that we are in a "stable" place. TTTS can occur at anytime and can happen quickly. Thus the reason for weekly ultrasounds to identify a problem before it becomes too severe. We are lucky in the fact that we currently do not meet the technical criteria for TTTS to be diagnosed. Each of our babies is holding steady with Baby A (our bigger twin) who has amniotic fluid in her sac measuring between 8-10 cm in the past 5 weeks. Baby B (our smaller twin) has been measuring right about 3cm of fuid in her sac. As you can see with the technical criteria for tts being that one twin HAS to have >8cm fluid AND the other twin HAS have <2cm fluid to be diagnosed with ttts stage 1, we are borderline for that diagnosis.
We also have a issue with the growth of our girls. The normal is anything <20% difference in size. Our girls as of last Wednesday were 25% different in size. Baby A being 1 lb and Baby B being 12oz. This is also something to watch carefully. Since our girls are sharing a placenta they each have their own cord attached to it. As our doctor explained in layman's terms, a placenta is like a snowflake. Each one is completely unique and develops in its own way. Therefore the umbilical cords can insert in any given place. Ideally they would both insert centrally so they could get the most nourishment and oxygen possible. We initially were told that we had 2 central cord insertions. Unfortunately, at out last appt we were told baby B (smaller baby) had a more peripheral cord insertion or closer to the edge. This is called "unequal placental sharing." This split can be varying from 70%/30%, 80%/20%, or any combination you can think of. This is the reason for the discrepancy in the size of our girls being 25%. They are not sharing the placenta equally.
So what does all this mean? Basically we sit and watch and hope they do not need intervention before they are able to be ok out rather than in. As long as the fluid remains stable, they are growing, and the bladders are visible be will continue to be "stable" and hopefully can make it into the safe zone of delivery. If things do not stay stable there are possibilities for amnioreduction ( drain fluid from the sac) or laser ablation (cauterize the blood vessels that the babies share in the placenta, basically creating 2 placentas.) Hopefully with prayers and time we wont need any intervention. Tese can be very risky and do not always work. I will hopefully not have to elaborateon these procedures in the future. If in time we do need to go down this path i will explain them in more detail.
We want to be able to keep everybody who has been thinking about us or praying for us in the loop about what is going on with our girls. Sometimes its hard to talk about and telling the story over and over is tedious at times but I know it is just because you all care. That means so much to our family and we cannot thank you enough. I will try to update as we continue on this journey. Please continue to pray for our girls and think good thoughts. I know I try everyday but this process has been so overwhelming and scary that I though blogging about it may help me and all those thinking of us.
The Latham twins are monochorionic/ diamniotic twins. We found this out about 14 weeks into our pregnancy. This simply means the girls share a placenta (monochorionic) and each have their own sac (diamniotic). The most common type of twins are dichorionic/diamniotic. This means each twin has their own placenta and their own sac. Mono/Di twins as we have in our case are a bit more high risk. A single placenta is meant to nourish and house 1 baby and we are asking it to do the job for 2 babies.
10% of mono/di twins develop a serious condition called twin to twin transfusion syndrome(ttts). This is where one baby becomes a donor twin and one baby becomes the recipient twin. Since they share a placenta and all that comes with it, one baby gets too much nutrition and oxygen (recipient) and the other gets too little (donor). In severe cases the donor baby can become dehydrated and anemic. The recipient baby can get so much that she could go into heart failure from the excessive blood.
At week 16 we got the most exciting news, we were having 2 baby GIRLS!!! We were over the moon. What I thought would be a very exciting visit quickly became overshadowed by the news we might possibly have ttts. There are a few ways doctors diagnose ttts. The amount of fluid in each babies sac, the bladder of the smaller baby, kidney function of smaller baby, size of babies, heart function of both babies, and brain function of both babies help to determine a diagnosis of ttts and the stage in how severe your case is. There are 4 stages of ttts. 1 being the least severe and 4 being most severe where intervention needs to take place in order to save the babies.
The main things that are looked at in weekly ultrasounds of mono/di twins is the fluid in each sac, the size difference from baby A to Baby B and if the babies have normal size bladders. They also use doppler to look at blood flow in the umbilical cords of each baby through the placenta. The normal range for amniotic fluid in each babies sac should be between 5cm and 15cm. The size different in the twins should be < 20%.
This background brings us to where we are today. We have been monitored with weekly ultrasounds in the past 5 weeks alternating with high risk perinatologists in Roseville and the Fetal Treatment Center in San Francisco. UCSF is one of the few places in the entire US that has experts in this condition and the means for surgical intervention to treat it.
So far, we have been told that we are in a "stable" place. TTTS can occur at anytime and can happen quickly. Thus the reason for weekly ultrasounds to identify a problem before it becomes too severe. We are lucky in the fact that we currently do not meet the technical criteria for TTTS to be diagnosed. Each of our babies is holding steady with Baby A (our bigger twin) who has amniotic fluid in her sac measuring between 8-10 cm in the past 5 weeks. Baby B (our smaller twin) has been measuring right about 3cm of fuid in her sac. As you can see with the technical criteria for tts being that one twin HAS to have >8cm fluid AND the other twin HAS have <2cm fluid to be diagnosed with ttts stage 1, we are borderline for that diagnosis.
We also have a issue with the growth of our girls. The normal is anything <20% difference in size. Our girls as of last Wednesday were 25% different in size. Baby A being 1 lb and Baby B being 12oz. This is also something to watch carefully. Since our girls are sharing a placenta they each have their own cord attached to it. As our doctor explained in layman's terms, a placenta is like a snowflake. Each one is completely unique and develops in its own way. Therefore the umbilical cords can insert in any given place. Ideally they would both insert centrally so they could get the most nourishment and oxygen possible. We initially were told that we had 2 central cord insertions. Unfortunately, at out last appt we were told baby B (smaller baby) had a more peripheral cord insertion or closer to the edge. This is called "unequal placental sharing." This split can be varying from 70%/30%, 80%/20%, or any combination you can think of. This is the reason for the discrepancy in the size of our girls being 25%. They are not sharing the placenta equally.
So what does all this mean? Basically we sit and watch and hope they do not need intervention before they are able to be ok out rather than in. As long as the fluid remains stable, they are growing, and the bladders are visible be will continue to be "stable" and hopefully can make it into the safe zone of delivery. If things do not stay stable there are possibilities for amnioreduction ( drain fluid from the sac) or laser ablation (cauterize the blood vessels that the babies share in the placenta, basically creating 2 placentas.) Hopefully with prayers and time we wont need any intervention. Tese can be very risky and do not always work. I will hopefully not have to elaborateon these procedures in the future. If in time we do need to go down this path i will explain them in more detail.
We want to be able to keep everybody who has been thinking about us or praying for us in the loop about what is going on with our girls. Sometimes its hard to talk about and telling the story over and over is tedious at times but I know it is just because you all care. That means so much to our family and we cannot thank you enough. I will try to update as we continue on this journey. Please continue to pray for our girls and think good thoughts. I know I try everyday but this process has been so overwhelming and scary that I though blogging about it may help me and all those thinking of us.
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