January 2009 Archives

We had another ultrasound today to "doppler" the bloodflow and check on the status of babies.

Baby A got measured a couple of times. Her best umbilical systolic-diastolic ratio was around 4.5 and her worst (which is the measurement they use) was 5.9. The normal range for this age is between 3 and 4. Her ratio is bad but not terrible. This is better than last week where it was measured "good" once and abysmal the next time. At least there was no absent end-diastolic flow measured at all this time!!

Baby B is doing perfectly (as usual) and was 3.2.

They also checked the fluid levels. As usual, Baby A was a bit lower than her sister but both were within normal parameters.

The size difference between the babies is very noticeable in the ultrasounds. There was one time when both bellies were side-by-side and you could see how very much smaller baby A was than her big sister. Both babies were very active and appeared to be doing well enough. This was encouraging for all of us.

We met with Dr. Lisa Saul today to review the results. She told us to remain vigilant and be cautious but the babies seemed "stable." In my book, that's good... it's better than unstable!

We'll have another big growth ultrasound next week. Dr. Saul reminded/cautioned that despite the obvious size difference, we can't compare the two babies against each other. We'll be looking to see how baby A is growing and how baby B is growing "on their own curves." She also reiterated what Dr. Nye said about the poor cord implantation being the cause of baby A's slow growth.

Our thanks go out to everyone who has been praying, hoping, and supporting us.

 

I was a little bit sad today - I went to pick up Maia from daycare and apparently they had her in the toddler room for most of today.  She even ate lunch and napped with the toddlers (on COTS)!  Tomorrow she'll be there for the entire day and then next week it'll be permanent.  It seems like just yesterday that we brought her to the infant room at daycare for the first time and I remember telling them that she didn't like to be held much but not let her cry herself to sleep - I was so worried and felt so guilty...we've come so far since then!  At least our cost will be reduced so that's a plus but I can't help wondering where the time has gone and what happened to my little baby girl.

I've been feeling very uncomfortable today - crampy and somewhat nauseous  I'm not sleeping well and I still have a lingering yucky cough that I've had for almost 6 weeks now.  I'm so over being sick.  I hope the crampiness is nothing to worry about.   I'm feeling a lot of movement so that's reassuring but I can't help but worry.  At least we have our appointment tomorrow morning so I'm praying that goes well!

Daycare called me yesterday to let me know that they think Maia has pink eye.  I always dread receiving a call from them in the middle of the day because it's always health-related and it always means that they need us to come get her "now" and that she won't be able to come back the next day.  Luckily they called me at around 4 and I usually get her at 5 so I didn't have to leave work any earlier than normal!

We actually were scheduled to go in for a follow-up appointment on Thursday but I ended up just taking her to ReadyCare (walk-in) this morning for them to check her eye and do the follow-up.  The doctor didn't know if it was pink eye (they never seem to) but said that I should give her the eyedrops anyway "just in case".  I think Maia has had an eye infection 4-5 times now which seems really excessive to me.  I pointed out to the doctor that she also has chronic watery eyes and she thought that maybe Maia has a plugged tear duct which could cause more eye infections than usual.  She gave us a referral to a pediatric eye doctor so hopefully they can diagnose the issues and fix her!  Unfortunately, if it is a plugged duct it means she would have to go under anesthesia to get it taken care of and I'm not super excited about that.

Nothing really new baby-related.  My friend Stacy's son was born a few weeks ago at 26 weeks and is at Abbott/Children's right now so Ben and I are thinking of going to visit them and seeing what the NICU is like.  My parents are on vacation in Mexico so I'm thinking when they get back we'll have my mom watch Maia and go.  Stacy, you're cool with that, right?  :-)

Friday morning (10 a.m.) is our next doppler appointment so I'm looking forward to that.  Last time we had to wait almost an hour to get seen so hopefully this time we get in and out quickly since I have to catch my bus to work by noon!

Layoffs were announced at my company today.  We had been under the impression that layoffs would be a last resort so it tells you how shaky things really are.  Luckily, I wasn't affected but it's still sobering to know that just like that so many more people are unemployed and looking for work.  I don't know anyone in my area yet that has been affected and I'm just praying for the best for those who are!

No baby news the last few days.  I'm enjoying feeling the movement and it's all starting to become more real to me.  I try not to think of how I'd feel emotionally if something were to happen to one or both because I don't need that stress in my life right now.  I'm just focusing on staying positive and just knowing that we'll end up with two healthy babies at the end of this journey!  I think Ben has a harder time with that and he's still trying to stay somewhat disconnected to everything so that if something were to happen he could stay strong for the both of us.  We have not done anything baby-related to prepare for these girls.  At least we have clothes and such because of Maia but we'll still need cribs, chairs, swings, etc. to prepare and I'm not sure when we'll feel "safe" to get those things.  Same with names - Ben isn't really comfortable naming them yet.  They'll have names regardless but we're just not quite there at this point.  If they end up being preemies, I guess we'll have time after they're born to take care of the logistical things at that point, right?  We at least have a Pack n Play that they can sleep in in our room for awhile before they move to theirs.

Anyway, I had coffee with an old friend from high school this morning.  Jodi has a son who was born 1 day before Maia at the same hospital so it was fun to catch up with her.  It's amazing how many people I have reconnected with via Facebook!

One of the things I love about pregnancy is the kicking.  This time around I started feeling little pops around 16 weeks and now at 21 weeks I'm starting to feel fairly regular movement.  It's still not strong but it really reassures me that the babies are doing well.  I wonder if I'll ever be able to tell which baby is moving?  At our last two ultrasounds Baby A was on my right but she also switched from breech to transverse as we were watching so they're still all over the place.  I suppose when they run out of room I might start to be able to differenciate the two.

Ben and I were discussing that we should probably arrange a tour at Abbott Northwestern hospital in case we have to deliver there.  North Memorial is our preferred hospital - that's where we had Maia but Abbott is better equipped to handle very premature babies especially since it's directly connected to Children's hospital.  I think we'll have to discuss it with our OB at our next appointment since he doesn't do deliveries at Abbott and the perinatologists don't do deliveries at North.  If we get to at least 30 weeks North Memorial might still be a possibility so we'll just have to keep our options open until then.

Ben, Maia and I went to dinner tonight with my brother Ron, sister-in-law Kathryn and our neice Annabelle.  We were belatedly celebrating Kathryn's birthday and we had such a nice time!  I couldn't believe how well the girls behaved for having to sit still for about 2 hours.  We went to Solera downtown since we had some giftcards to use and it was delicious.  They serve spanish tapas so we ended up getting 24 little dishes that we all just shared.  It was a nice change of pace and wasn't so filling that we felt like we were going to explode.  Maia on the other hand didn't eat a thing.  We really think she must be teething because she's got a low grade fever, is drooling like crazy, has a diaper rash and has a small appetite (but is drinking a lot of milk)!  I hope those teeth pop through soon so she can go back to being her happy self.

We went out with the Solts this evening and I mentioned how I'm the type to want to tell friends and family when something big like this is happening. Jeremy hit the nail on the head and pointed out that doing so helps build a support network which makes going through it easier.

He's right; having support from friends, family, and colleagues make the stress and emotional roller coaster ride much more bearable. Thank you to everyone who has been posting positive comments and listening to our stories and updates! Your support is much appreciated!

Some more info on the blood flow for those who are interested... If I remember correctly what Dr. Wothe told us, the ideal ratio of systolic (heart muscle is compressed) to diastolic (heart muscle is relaxed) blood flow in the umbilical cord is somewhere between 4 and 5.

Today during Baby A's first umbilical flow monitoring, the ratio was right on... maybe a little higher than 5 (I can't remember exactly). Nothing to be worried about, though. It was 14+ at our last appointment.

Dr. Ney hypothesized that maybe one artery in the umbilical has an issue (such as how it's connected to the placenta or something else entirely) and that's why we got a good reading today and a bad one. As Becky indicated, the position/pressure on the cord may also be a factor.

In any event, the near-absent end-diastolic flow in the later reading is something to be very concerned about but we also had a nearly perfect reading so that was very positive.

Baby B's end-diastolic flow and ratios have always been just about perfect.

Something else to note: Dr. Ney had Paula check the flow in the ductos venosus (the main vein that connects the umbilical blood supply to the baby). She was concerned that if that was showing reverse flow (blood flowing out of the baby during diastole) that we would be in bad shape and Baby A could be near heart failure. Gee did my stomach churn as we watched the ultrasound. Thankfully it looked very good!

I asked Dr. Ney point-blank if she thought we would get these babies would make it. Based on what she saw today, she believed that YES, they were going to make it but we needed to stay guarded and do frequent monitoring.

We had our doppler scan today and it went better than we expected.  Thankfully, Ben was able to get the earlier flight out and so he was able to be there for the appointment.  I'm also thankful that my friend Lorry was there in case Ben couldn't make it so I wouldn't have to be alone.

We had to wait about 40 minutes before they could get us in.  They took my blood pressure and it was 138/81, so again, they made me lay on my side and it went down to 118.  Go figure! 

Our tech, Paula, didn't measure growth, just bloodflow and fluid levels.  Both babies have a great amount of fluid with working bladders so this is great news and means that there is still no sign of TTTS (Twin to twin transfusion syndrome).  They will continue to watch for this every appointment going forward.

Paula first measured the blood flow of Baby A and surprisingly enough, it actually was in the GOOD range!  Baby B's blood flow level was also in the good range but that was expected.  Paula did go back later and re-measure Baby A and got the low to absent flow rates which is what we saw the first time.  She said that when she measured the 2nd time the baby had moved down so she was wondering if she was on the cord or something which caused the huge difference.  Overall though, this is great since we know that at least at times she's getting good blood flow.

Paula also tried to determine where the cords implanted with the placenta.  Baby B's was towards the left side and she found that Baby A's cord was a marginal cord insertion which apparently means that the cord is at the very tippy edge of the other side of the placenta, close to the cervix.  This could be part of the reason that her size is so small.  I'm thankful though that Baby B's cord isn't in the middle of the placenta because that would mean that she's getting a MUCH larger share of it.  This gives us better odds though the marginal insertion is worrisome.

We saw another perinatologist who came in to talk to us during the ultrasound and she was very optimistic, especially considering the lack of signs for TTTS.  She was excited that there was some good cord flow and thinks we have a good chance of making it through this pregnancy.  I will continue to go to weekly doppler scans and growth scans every 3 weeks and we'll just keep plugging along until these babies are born!

So overall, great news. 

So I made my doppler appointment at the perinatologist tomorrow for 3:00.  They didn't have any open appointments so I think they're just going to squeeze me in the best they can!  Ben isn't scheduled to get home until later in the day but he REALLY wants to be there, especially in case something happens.  I think he's going to try to get an earlier flight but if he can't, my friend Lorry is going to come to the appointment with me so I'm not alone.  I think the appointment will be fine but it'll be nice to have her support.  She's also coming over to dinner tonight with her daughter Emma, and even better, she's cooking!  Yay!!

A couple of things happened today, though nothing too extraordinary.  My OB's office (Dr. Gosen) called to let us know that he spoke with our peri and agreed with everything he said.  Well, okay...I guess that's good?  I wasn't looking for affirmation from Dr. Gosen but back when I wasn't as high-risk, Dr. Gosen wanted me to go to his clinic for all growth ultrasounds instead of to the perinatologists.  I would have no problem with that under normal circumstances but now I'm more comfortable with our peri for that kind of thing.  Maybe that's all he meant when he said that he agreed with them?  He also said that I could make an earlier appointment with him if I wanted.  Our next one isn't until after our next growth ultrasound so I might just do that.

Dr. Wothe (our peri) also called and said that he spoke with Dr. Quintero's office in Florida and reiterated that I didn't qualify for the study.  I knew that but he also said that he would now like me to start coming in weekly for dopplers to check the fluid levels and the diastolic flow.  If it ends up being absent, he'll resubmit our paperwork to FL and we'll see what happens.  I think this is great news because it means I'll be monitored more closely and if this does turn into TTTS or absent diastolic flow we'll know as soon as possible.  Thank you Dr. Quintero!

In other news, Ben is still out of town until Friday.  Matt and Meghan came over tonight to keep me company and watch some American Idol - we had a good time.  She's 32 weeks pregnant so it's fun to commiserate and it's always fun to make fun of bad Idol singers.  I also pawned the rest of Amanda's baby shower cake off on them.  Whew, no more cake in the house!

I got a call back from Andrea the Fetal Coordinator at Dr. Quintero's office in FL this evening.  She said that she got my charts and went over them with the doctor and unfortunately, at this time I don't qualify for the study or for surgery.  One of the requirements is a complete absent or reverse end-diastolic flow in the umbilical cord and our baby's cord has low end-diastolic flow.  In one sense that is a GREAT thing because it means that the baby IS getting blood flow, just not enough.  I feel better about the situation right now because I know that the top maternal medicine doctor in the country has reviewed my case and "expectant management" is what he recommends as well (which is basically wait and see).  Andrea suggested that I go in more often (weekly or bi-weekly) to check fluid levels, the flow, etc and get monitored for the babies size every few weeks.  I think I'll call my doctor tomorrow (if he doesn't call me) and suggest this since I'm not comfortable with just going in for the growth check 3 weeks from now.  It just seems like a long time to wait and I want to be sure they're okay in the meantime!

Today has been a weird day.  We had all weekend to come to terms with our situation and then we started getting more information on others who have gone through similar experiences.  A woman at Ben's work forwarded him a link to a website called FetalHope.org that is run by a guy Lonnie who's twin daughters had TTTS (twin to twin transfusion syndrome) which is a similar condition where there is an unbalanced flow of blood causing fluid discrepencies, possible anemia/heart failure and even IUGR.  This is not our situation since both twins are on the small end of the scale, we just have a disproportionate amount of placenta supplying each twin.

I e-mailed Lonnie from FetalHope and he suggested getting a second opinion.  He gave us a couple of names of top doctors in Washington and California and told us to give them a call to see what they say.  I called Dr. Walker's office in Washington (since we have family there) and spoke with the Fetal Therapy Coordinator who told us that we should exhaust all local options before considering seeing anyone else.  She gave us a few names of perinatologists who are actually in the same practice that our doctor is in.  Doing some further digging, we discovered that there is a research study going on right now by Dr. Quintero in Tampa, FL for people who have SIUGR.  They are doing experimental laser surgeries (similar to the surgery they currently successfully do for TTTS) which in essence separates the placenta so that if one twin were to die the other one wouldn't be affected.  We were a little bit annoyed that this was not presented to us as an option to consider.

We called Dr. Wothe and presented this to him and he said that he wasn't really familiar with the study but that we were certainly welcome to get a second opinion.  He also said that he knew the risks of the surgery to the mother was something to consider as well since he knows that there has been at least 1 death in the US and 1 in Europe.  He referrered us to Dr. Block who actually performs these surgeries locally for TTTS.  Dr Block said that based on what he sees, he wouldn't recommend the cord ligation which is good news.  Not that we were considering it as an option anyway, but we're happy that our doctors support this decision.  He said that he would fax our charts down to Dr. Quintero in FL and we could hopefully have a phone consult.

Anyway, I feel that we're doing all we can right now to "do something".  Even if we don't qualify for the study or the surgery at least we'll know that we did everything in our power.  Often times the best thing to do is just pray and stay positive.

I'll keep updating when I get more information or hear from Dr. Quintero.  Ben left this morning on a business trip (nice timing!) but he's ready to leave and fly wherever if the situation warrants it!

We were all excited today because we got to go to a perinatologist (a maternal fetal medicine specialist) to do our "big" 20 week ultrasound and hopefully get some good shots of both babies and find out the genders but it didn't go quite as expected.

First the nurse came in and did the usual blood pressure check and it was 160-something/80 which is really high so she had me lay on my left side.  Immediately it went down to 116!  It's amazing what a little rest can actually do.

Then the tech Krista came in to do the scan.  I'm glad they warm up the ultrasound goo first because she put a LOT on!  Krista confirmed that these babies were monochorianic/diamniotic (mono-di) which means that they share the same outer sac and placenta but have separate inner sacs thus making them identical.  It was nice to have someone actually confirm it for us as our regular OB and ultrasound techs never wanted to commit to fraternal or identical.

Krista took a look at the placenta and said that I still have a partial previa (which means that the placenta partially covers the cervix) so that is actually good news because 2 weeks ago I had a complete previa.  If this keeps up it will hopefully go away entirely and I won't have to have a c-section!

We started with Baby A and went through all the measurements and everything looked great.  The fluid levels were looking good, we saw the baby waving and moving around a bit so that was fun.  She finally got to the "crotch shot" and just as I suspected, GIRL!!  Poor Ben is going to be outnumbered because if this one is a girl, it means the other one is a girl as well.

Moving onto Baby B - same thing.  She did the measurements and everything was looking great.  We got a cool photo of both of their heads together.  Krista said that they were spooning the whole ultrasound so they're close already.  Again, to the crotch shot and of course, it's a girl.  Hey, at least we have all of Maia's old clothes and stuff, right?

So Krista told us that Baby A was 7 oz (202g) and Baby B was 10 oz (283g).  That didn't really concern us because Baby A had always been a little bit smaller than B.  Krista left to go get the perinatologist (Dr. Wothe) to talk to us about our situation so Ben and I were just chatting about what it would mean to have 3 girls when he comes in looking serious.

Apparently, this size discrepency is a problem, and a big one.  He said that Baby A has Selective Interuterine Growth Restriction and low end-diastolic flow which means that the amount of nutrients and blood she's getting from the placenta isn't enough.  The doctor told us that at this point, he would only give Baby A a 50% chance of survival.  He said in cases of single pregnancies with this happening, the survival rate would only be about 5% but because she's a twin she has a better chance.

Of course Ben and I asked what we could do and the doctor gave us a few options.  He said that we could do an amniocentesis which would mean inserting a needle through my stomach into the fluid of Baby A to draw some out and check for chromosomal issues.  The doctor didn't think this was really necessary since they don't see any indication of problems on the ultrasound and I did my quad screen which came back normal.  He also suggested cord ligation which is separating the cord of Baby A from the placenta and letting Baby A pass away while giving her sister a better chance of survival.  This is not an option for us, especially with the 50% survival rate we were given and the fact that she looks perfect, just small.

The risk lies with the possibility of Baby A dying inutero because of her small size.  If this happens, there is a chance that Baby B would be adversly affected.  Because of the blood vessels that link the twin's circulatory system together, death of one twin may result in severe drop in blood pressure of the other twin and subsequent brain damage (up to 30%) or death (up to 40%). This complication results from the hemorrhage of blood from the appropriately grown twin into the demised SIUGR twin.

The doctor told us now that all we can do is wait and see.  He scheduled another ultrasound for us in 3 weeks (February 6th) to check on the growth.  No matter what it sounds like we'll be delivering these babies early so that's not something we were really prepared for.  Once they reach viability (at least 500g and 24 weeks) they will start monitoring me more closely to determine how Baby A is doing.  If Baby A starts to decline, they'll consider their options and deliver early to give her a better chance of survival.  In the meantime, we have a home doppler so we can check the heartbeats at home to reassure us that Baby A is still alive so that helps a little with the waiting but it's still tough to feel like there's nothing I can do.  Dr. Wothe said that I could go on bedrest if I wanted but he didn't see that it would actually help.  I told him I have a desk job and he said that sounded perfect.  I should just be taking it easy and eating a lot of protein so that's what I'm going to do.

Please pray for us.  All we can do is wait, but we can also wait and pray, right??

Yesterday started off normal!  I went to work, picked up Maia, went home, had dinner, played for awhile and put her down to bed.  I then vegged on the couch watching The Bachelor (a naughty indulgence, I know).  It was about 10:00 and I was really tired so I decided to go bed.  I went to use the bathroom and saw some bright red blood.

This is never good when pregnant, especially since I was already in the 2nd trimester at 18 weeks.  I went and got Ben (who freaked out) and we called my OB's office.  He called us back, asked a few questions and told us to get our butts to Labor and Delivery.  I called my mom and she rushed over to watch Maia.

We headed for L&D trying to stay positive.  We got there and we got seen immediately.  They had me lay down and hooked me up to the monitors.  They listened for the babies hearts and we heard both glorious heartbeats, thank goodness!  They checked my cervix and said I was still closed and not at all dilated so that is great news.  I was probably hooked up to the monitor for an hour as they watched for contractions that never came.  The blood had started easing up so they weren't really sure what had caused it.  They finally sent me home with instructions to get an ultrasound the next day to check both babies.

I went to my ultrasound today and everything looks good!  Whew.  They only saw one placenta (which if that's true it means they're identical) but I have a complete placenta previa which means that the placenta is completely covering the cervix.  This is a common cause for 2nd-3rd trimester bleeding so at least it explains why it happened.  In 90% of the cases it usually corrects itself but if it doesn't I'll need to have a scheduled c-section to get these babies out.  Lets pray it goes away!  I'm not bleeding anymore so that is great news - I'm just on pelvic rest meaning no heavy lifting and I'm told to take it easy.  At least it's not bedrest.