We are at week 13+1
So, as most of you know we have been pretty negative in the way we broach the subject that we are pregnant, have twins and they are _high risk_. Well part of our problem has been in our delivery (pun intended). We have been caught making this big build up followed by what most people seem to find as great news.
For example, Joy was getting her hair done last Thursday and told her beautician about how we found out we were expecting just one. Then we went in for the Down Syndrome screening and the nurse became very nervous etc. Well, Joy was rambling about this and the poor woman was building all of this stress that something terrible was going to come of this story. Then Joy gets to "multiple birth" and "twins". This is when people get so excited and relieved.
Our problem is that yes it is exciting to be expecting twins, but the gloomy news about their formation doesn't always click right away. Either that or at times the people we share this will are way more positive than the two of us. We are trying to learn to be more optimistic in the sharing of our news and have stopped going down the road of explaining all of the details about the plethora of risks that we face.
Many of which I believe I have ruled out to myself. However, there is still spontaneous miscarriage, cord tangling, strangulation, cord compression, and all of the many life long challenges that will most likely be present if we can't get to that 32-34 weeks area.
We are making an effort. We had a great time sharing the news with the Sullivan family. We prepared a nice meal and set the table with china and sparkling grape juice (we had a few under age and not enough adults for the real thing). I proposed a very very short toast..."To the Sullivan 5 and the Schneider 4". Well, Lucinda asks "Do you mean your 2 dogs?" Joy goes "The Schneider 4". There is still a bit of a pause. Then Challie goes "You're having _twins_?"
It was quite a blast to break the news and we even guessed who the first person to understand was. Challie picked up on it first. Well, we enjoyed the well wishes and shared just that these were high risk because of there cords. They offered their prayers and optimism that all would be well. We left it at that.
I have made it a point starting this past weekend to just share we are expecting twins and they are high risk because they could get tangled in the cords etc. I pretty mush leave it as that. I suppose we feel the need to share the risk because the risk is so high. I guess we are trying to convey to people early on that this just might not work. This way if something awful happens and these two don't make it that at least people were aware that it was high risk.
So, maybe we can stop "scaring the sugar" out of people and at least let them enjoy the news that we have twins on the way. It is just so hard to not share at least the one fact about the cords. This whole thing is just so scary....
I guess I'm still struggling. I feel confident that they are healthy at the moment and that they will not develop TTTS which is very very rare. I've now moved on to studying the facts about premature birth and the life long impacts of being an extreme preemie. We need to understand these facts so we can come up with a date we are comfortable with. I'm leaning away from a 24 week admission for 24/7 monitoring and leaning towards a 26-28 week admission. I can share the details of that when my research of medical studies is wrapped up. Then of course it also has to come down to the twins size and health as those weeks approach.
Keep your fingers crossed.
Monday, February 28, 2011
Friday, February 25, 2011
Twins? Really?
To begin with I'll just point out that a lot of what is here is a quick brain dump of our past 12 months and my take on what our concerns are based on research I have done about Monoamniotic Monochorionic twins. I apologize if this blog posting seems to be all over the place. I'm in a bit of a rush to get something out here and it feels a little soothing to just brain dump.
To begin....How did we get here?
After nearly two years of trying to have a baby we went to a fertility clinic. Immediately, we found the problem and were told IVF was the only solution. So without missing a beat we started right in on it. Things were looking good at first. We had 8 gorgeous embryos: 2 went in on day 6 and 2 weeks later we had a low positive. About a day later we miscarried. We then waited a few months for Joy's body to recover and tried our two frozen embryos. Nothing at all that time. Then a few more months and we gave IVF another shot. Our egg count was higher, but the embryos were so-so. Nothing even took and nothing to freeze.
After meeting with the fertility Dr. our odds looked bleak. We asked him how many tries should we give this. He said that one more IVF and if things look like our first attempt then maybe one more. If things look like our second attempted then we may need to look at egg donors.
Joy and I decided ok. Let's get through the holidays and then we will look into trying in February.
Well on New Years day or so Joy realized that she still had not had her period, but figured it was just her body being all screwed up from IVF 2 months earlier. I joked that maybe she was pregnant. A few more days go by and nothing. So, I talked Joy into taking an EPT. She reluctantly did and it was positive immediately. Holy crap???
Well the two of us were in our PJ's and just read a positive on an expired EPT. So it's 9pm and we run off to the drug store. Two more tests are positive right away. We then sent an email to our fertility Dr. and asked them if we could get a blood test done.
Sure enough we were pregnant!!!! When we went in for our second Beta they did an Ultra Sound (U/S) and there IT was A baby.
We followed up with two more U/S the last being at 8 weeks. Everything was on target and the heart beat was strong. Nothing unusual. Although, the Dr. did try to find the yolk sac and I don't recall him being able to find it. Anyway we weren't worried.
Then about 2 weeks later Joy had some very light pink spotting. Our OB had us come in for a checkup and they thought everything was fine. While we were there they said they would skip the 12 week ultra sound since we already had 3 the last of which at 8 weeks. Ok no big deal, but bummer, we'd like to see IT again.
So here we are Feb 21st and we go into the perinatal office to get some screening tests done for Down Syndrome and other chromosomal issues. "Luckily" one of the things they have to do is to measure the nochal translucency for Down Syndrome. This requires an U/S which was going to be skipped.
During the scan the nurse was very distraught which stressed us out. She was thumbing through papers and we were watching the screen trying to make out what was going on. We could see our little one and at times this other white blob, but we weren't sure what to make of it. We thought oh no? What is going on. She then asks "Has anyone told you to expect a multiple birth??" What? No Way! She goes well here is Baby A and Baby B.
It was crazy to see them bouncing around in there. It was amazing to think we were going to have twins. Then she says they are identical twins. We were so excited when we left the room. However, we had to stay to meet with the doctor. We were figuring this was just because our risk went up a bit because we were having twins. What we didn't know was how much our risk had gone up!!!!
These twins are Monoamniotic Monochorionic. This means that they share the placenta as well as the sac. This is caused by one fertilized egg which spits around day 8-13. At that time it is too late for there to be a separate sac. So the babies become room mates! This is such a bad idea. They should have parted sooner. Now they are at risk of hanging each other or tying a knot in their cords. Also, they could have their cords too close together which can cause major issues with TTTS (see below).
In short the Dr. was not full of good news. Historically these pregnancies end with a 40-60% failure rate. However, those odds are out of date and the odds are much better today. The main reason they are better is because we have technology to treat extreme premies. We don't have to wait until 37 weeks to take the babies and them survive. Doctors can now take them as early as 23 or 24 weeks. However, this has huge risks. Yes they may live being born at that age, but there are so many complications many of which can lead to permanent handicaps.
What to do? One thing to do is a couple rounds of Steroids. We know these will be premies no matter what. So with a few rounds of steroids we can jump start their lung development so they are better prepared to live in the real world with air.
It also appears that we have to just wait it out to 20 weeks. Once we are there our odds get better at making it. I can't find great odds and they seem to be all over the board. Viability is at about 24 weeks. I've read about a case where momo twins were born at Duke at 25 weeks. They were in NICU for a long time, but went home healthy. 3 years later one was loosing their hearing and overall their development was a little slow. Ok this isn't too bad though right?
The problem with those extreme premies is that they are at a higher risk for heart problems and oxygen deprivation. This can lead to things like cerebral palsy.
Our chances go up a lot if we can squeak out another 4 weeks and make it to 28. At that point you have about a 81-95% chance that things will be ok. Our absolute best bet is 34 weeks (July 24th 2011). I really hope we make it to that date. The doctors will not let them go beyond week 34.
As part of testing for Down Syndrome the doctor measured nuchal translucency (NT). In our case both were normal and similar in size. This check at 12 weeks is a good one to see. Generally if there is going to be Twin-Twin Transfer Syndrom (TTTS) you would see large measurements or way different measurements between the two.
Another good thing about the measurements that they can be indicators for heart problems. At this time since the measures were normal there hearts must be ok at this stage.
There is also a risk of Twin Reversed Arterial Perfusion Sequence. This is an extreme form of TTTS. It only occurs in 1% of monochorionic twins. I don't believe we have this issue. Their heart beats look good and I would again expect that their NT measurements would show some discrepancy. So I think we are safe here.
Though I have read that identical twins have a higher rate of congenital birth defects it appears that the rate is about 2-3 times that of a singletons risk. So, that is much smaller than we thought before and puts the risk around 4%-6%.
I guess all of my research points to our main risk being the umbilical cords. I've found pictures of some seriously knotted cords that still resulted in healthy babies. We also have to worry about cord compression, but let's face it that again just boils down to a cord accident. All we can do is hope they don't get too tangled up in there.
Tangling is so scary really. In can end the pregnancy right there on the spot. If even one goes that leads to a 25% chance that the other baby will die or develop a severe handicap due to hypertensive moments. It could also cause an early labor due to Joy's body thinking. "Oh this is over."
Here is one of the most informative links I have found on Monoamniotic Monochorionic (momo) twins. A bit of warning that there are a few gross pictures on the site.
Joy and I really hope things work out. I'm going one day at a time and now have a pregnancy calendar up at work so I can check off the days. Joy on the other hand feels like she is going bathroom trip to bathroom trip. She is always terrified that she is going to see some spotting or sign that a miscarriage is coming.
Our next U/S is scheduled for March 14th (15th week) with our regular OB. We don't meet with the UNC specialist until April 4th (18th week). We plan to call the Duke Perinatal clinic for a second opinion and thought on the matter. We plan to call them on Monday. Perhaps they will want to take their own peek inside which would give us another chance to check in on how things are going.
Overall, this is so nerve racking. The whole time we are going to be wondering if things are ok. Joy and I are already trying to figure out at what point do we want her to be admitted for 24/7 observation. I suppose we have another 12 weeks to sort that out though. In the mean time I think I have calmed down a bit. This still really weighs on my mind, but there is nothing we can do. We just have to wait for our visits and address any issues if they come up. Until then we just have to hope things go well. So let's hope to make it to July 24th 2011!
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