Friday, January 31, 2014

Blood Transfusion #2

I already wrote a brief update on Facebook, so sorry about the double updates, but I want to make sure I don't miss anything on the blog, in case I want to show the girls someday!

Our ultrasound was at 8:30am yesterday, and it basically confirmed the same things as the other day. Baby A had fast bloodflow through her brain, although not as fast as the last time we needed the blood transfusion. For the first transfusion, her bloodflow was 3 times as fast as the average, and yesterday, it was 1.8 times as fast as the average. Because of this, our doctor offered us another blood transfusion, knowing that it probably wasn't as urgent as the last time. Between the three of us, however, none wanted to just wait and see how it was next week, so we decided to go ahead with the blood transfusion again. She had spoken with blood bank and they were going to "try their hardest" to make it happen yesterday, so we wouldn't have to spend another night in Ann Arbor. Before we even left the ultrasound, one of my doctor's partners was able to set up the blood transfusion with blood bank, OR, anesthesia, etc. for 2:30pm. Have I mentioned how amazing our doctors are?

I hadn't eaten or drank anything since midnight, and by the time we left our ultrasound at 10:30, I only had four hours until surgery... sooo... no breakfast or lunch for me. Luckily, my doctor at least let me have a glass of water. With 3 hours and nothing to do, Nate and I grabbed our laptops and sat down in the cafeteria to kill some time. 3 hours... in the cafeteria... starving... smelling delicious food and watching everyone around me (including my husband) eat. Let's just say I was happy when it was time to go back upstairs.

We were in preop for just over an hour before rolling to the OR. Nate was able to come in with me again, but unfortunately, I didn't get a chance to take a picture of him in his beautiful white jumpsuit. If there is a next time, this will definitely be on my priority list!

Once I got into the OR, they used the ultrasound to figure out the plan of attack. They scanned for what seemed like forever before figuring out how they were going to enter the umbilical vein. The babies' positions were not cooperating (baby A was breach and baby B was head-down). After moving me in many different directions, they were finally able to get into the vein and get a blood sample. Even though the bloodflow wasn't as fast as the last time, we found out that baby A was just as anemic as last time... her hematocrit was, again, 2%. Because of the "success" of the last procedure (ie., it improved her bloodflow for 3 weeks), they decided to do the transfusion into her abdomen again. This meant another poke and lots more position changes to be able to access her abdomen, since baby B's face kept getting in the way. We appreciated that they didn't want to poke our daughter in the face with a needle!

Once they finally had a clear shot into baby A's abdomen, they poked again. I had asked the anesthesiologists (there were 3 of them) for less pain medication than the last time. I asked, and I received! That poke was probably the most painful thing I've gone through so far. Luckily, I requested more pain medication, and they were able to get it to me quickly. They ended up transfusing 36 mLs of blood into baby A before cleaning up and rolling me back to recovery.

Since I had only gotten half the amount of pain medication as last time, recovery was much smoother and much quicker than last time. Nate grabbed me Subway and Reese's PB cups (a necessity) from downstairs, our doctor came back with the ultrasound machine to reassure us that our babies still looked good, and we were on our way home.

TTTS and TAPS have unpredictable disease courses... so we don't know for sure if we will need another blood transfusion or not. Since the last one improved things for about 3 weeks, Nate and I are kind of planning on needing at least one more before the babies are born. If we don't end up needing one, it will be a happy surprise. Either way, because of the expertise and our comfort levels with our docs in Ann Arbor, we have chosen to continue being seen there, at least until things stabilize for a long period of time. Our next appointment is February 11th.

As always, thank you all for praying for us and for our little girls. We are overwhelmed by the prayers, comments, and support you all have given us.

Love,
Nate & Sara and the little peanuts too :)

Tuesday, January 28, 2014

Back to Ann Arbor We Go!

This morning was our first appointment with our high risk doctor in Grand Rapids. We had a pretty comprehensive ultrasound, which told us that Baby A now weighs a full pound and Baby B weighs about 13 ounces. They're getting bigger!! Our ultrasound went well, except for one number that was a little concerning to us... baby A's bloodflow through her brain. It was quite a bit higher than last week, but not as high as it was prior to needing the blood transfusion. Either way, we knew it had gone the wrong direction since last week. Because of this concern, our doctor consulted with our doctor in Ann Arbor, who decided she'd like to see us and check things out. I just got off the phone with her, and she explained that different ultrasound technicians use different techniques to get this measurement that could produce different readings, so it might not be a huge deal, but we all feel it's better to be safe than sorry. I'm going to work tomorrow, and we will leave late tomorrow afternoon for an appointment with her on Thursday morning. If the baby does need another blood transfusion, it will occur on Thursday afternoon or Friday. As you can imagine, we are a little worried, and we are praying that Baby A is getting all the blood she needs, but we are trying to stay positive. We're happy that, if this is a concern, it was caught early and they can intervene soon.

We are so thankful that our doctors talk to one another and have our best interests at heart instead of assuming they have all the answers. The other really cool thing that happened today was that our doctor prayed with us before ending our appointment -- not only for healing for our babies but for Nate and me as well. We just thought that was awesome, and we haven't heard of doctors doing this before.

In other pregnancy news... Just in the last 2 weeks or so, I am feeling both babies move around a lot, and last night while lying in bed I felt them with my hand on my tummy for the first time! After our ultrasound today, I know that both babies have their heads down, and Baby A is on my left and Baby B on my right. So now when I feel movements, I know which baby it is and I can make a guess as to what body part I am feeling!

Here is a cute one of our little peanut, Baby B.
And now, by popular demand... a few pictures of my growing baby bump:


4 weeks

10 weeks

16 weeks

18 weeks

20 weeks
21 weeks
We will update you as soon as we know what (if anything) is going on!
The Vander Ploegs

Tuesday, January 21, 2014

The BEST Birthday Gift

We had another follow-up appointment at U of M this afternoon. Since we had gotten such a good report last week, Nate and I both felt pretty good about this ultrasound, but we started getting a little nervous as it got closer.

The first thing we saw on our ultrasound was both heartbeats, but our doctor seemed a little concerned and told us "one of your kiddos has a really slow heartbeat." We looked and, sure enough, one heart was beating much slower than the other. Nate and I were ready to just crumble. Our babies have survived so much, we immediately thought there was no way they would both survive if there was another major problem. She had me turn to my side since I was laying close to flat on my back, and when she put the scanner back on, the heart beat was back to normal!! As I mentioned in another post, laying flat on your back is NOT GOOD when you're pregnant, and this was evidence of that. The doc didn't seem too concerned, but just reminded me that the girls do not like it when I lay on my back! (She said this probably happens all the time if I lay on my back for a minute, we just happened to catch it on the ultrasound. It's no big deal as long as I turn and the heart rate comes back to normal.) Whew!

After that little scare, this is what we found out:

  • The fluid levels around Baby A and Baby B remain normal.
  • Baby B's bladder is normal.
  • The speed of blood flow through Baby A's brain was in the 30s... normal.
  • The speed of blood flow through Baby B's brain was normal.
Do you see a theme? For the first time since this all started, everything looks NORMAL!! Our doc feels the blood transfusion did the trick and that we most likely won't need another laser surgery OR blood transfusion! PRAISE THE LORD!!! We are so thankful... our prayers have been answered. I could not ask for a better birthday gift! She also feels comfortable enough to transfer our care back to the high risk specialist in Grand Rapids. We were very sad to say goodbye to our wonderful doctor (and we exchanged lots of hugs before we left), but it will be so much easier to have weekly appointments in Grand Rapids. It's going to be nice to get to know the doctor who will most likely deliver our babies as well.

My restrictions remain in place, and will remain until I get to 30-32 weeks (which is 10-12 more weeks from now.) So... I can work two days a week (sitting down only), lay low when at home, no groceries/laundry/cleaning, etc. We have so much invested into fixing the TTTS and TAPS problems, it would be foolish to risk going into early labor by doing too much activity. It will be boring, but SO worth it.

We can't begin to express our thanks to everyone who has thought about us, prayed for us, helped out with meals, or just come over to spend time with us. If you offered and we haven't taken you up on it yet, we will! We are overwhelmed by the amount of concern so many people have shown for us and for our precious girls. While this is a major step, there is a chance that either baby could have suffered brain damage during their times of low blood flow or during times of major blood flow shifting. We may not know if this is the case until the girls are born. Although we believe that the problem has been fixed, there is still a chance that the blood flow could begin to shift again. We ask that you continue to pray with us that our girls will arrive healthy and at the right time!

Much love!
The Vander Ploegs

Monday, January 13, 2014

Headed in the Right Direction...

Our appointment this morning was short and sweet, and one of the most positive we've had since starting this journey! Our ultrasound was performed by one of the OB fellows (who was also in our surgery on Thursday) and our main surgeon.

Good news we received:
  • The fluid levels around Baby B are now considered normal!
  • Baby B's bladder is still visible.
  • The fluid levels around Baby A remain stable, even with the decreased bloodflow.
  • Both babies are VERY active.
  • The speed of bloodflow through Baby A's brain has decreased from the 70s to the 40s. The way they look at this is in "multiples of the median," or how far off it is from the average at any given gestational age. On Thursday before our transfusion, the speed of bloodflow was three times the average. Today, it was 1.8 times the average. Anything less than 1.5 is considered normal! As I think I said in my last post, it takes a while for the blood to absorb, so we are happy with this improvement, even though it's not quite "normal."
  • While we can tell some of the blood from the transfusion into Baby A's abdomen has absorbed into the bloodstream, there is still quite a bit more to go. Because of this, the doctors believe that the bloodflow will continue to improve. We were told not to be surprised if it was within normal range the next time we look.
  • Last but not least, I get to go back to work!! Our surgeon is allowing me to work two 8-hour days this week and reevaluate next week. I still have to lay low when I'm at home and take it easy (sit-down work only) when I'm at work. I will take any opportunity I can get to get out of this house!
The speed of bloodflow through Baby B's brain remains slow, which seemed to be more concerning to Nate and me than to the docs. They seem to believe that this will improve as Baby A's bloodflow improves. In addition, they say that babies can compensate for extra bloodflow (like Baby B) much more effectively than they can for too little bloodflow (like Baby A.)

We are beyond ecstatic to have gotten such great news today. We pray that the bloodflow issues continue to resolve and that, with increased activity, I won't have any signs of preterm labor. If I do, it's back to the couch for me! We are going back next week Tuesday (my birthday) for another ultrasound. Our surgeon is going to compile a list of great places to eat in Ann Arbor so we can have a birthday lunch together after the appointment. :)

Thanks for all the prayers!!

Love,
The VanderPloeg 4

All snuggled up! We are so in love!

Friday, January 10, 2014

Baby A's First (and Hopefully Last) Blood Transfusion

Yesterday was the big day for Baby A to get her blood transfusion. I'll spare you the details of the logistics of the whole day, but basically, from noon until 1:30ish, I was prepped, ultrasounded, and brought to the OR where they do C-sections and the other more minor OB surgeries. I had the same nurse as I had for my laser surgery, which was so awesome! Right before we were brought to the OR, my amazing surgeon said that she would be totally fine with Nate coming in with us. I wish I had gotten a picture, but he got to wear a sexy white jumpsuit along with a head covering, mask, and shoe covers. It was quite the sight!

I was given local anesthetic and lots (and lots) of conscious sedation. For my nurse friends, I received 4mg of versed and 300 mcg of fentanyl (which I did not find out until after the procedure.) It was a bit much, and I ended up losing my dinner in the car on the way home, even after receiving 8 mg of zofran and some phenergan. I will be sure to let the next anesthesiologist I see know to take it easy on me! Either way, I felt nice and loopy during the procedure and, even though it took two hours, it seemed like an hour at the most to me.

Prior to surgery, the doctors had seen on ultrasound that there was a spot that they could easily use to enter the umbilical cord by going behind the placenta (and therefore not have to poke a hole through the amniotic membrane). Apparently, during the procedure, they entered the umbilical cord through this route three different times, but they were unable to get the blood transfusion to advance toward baby A, so they had to try a different approach. They ended up poking again (this time through the membrane) and giving the baby 18 mL of packed red blood cells right into her peritoneal cavity (abdomen).

Another thing they did during the procedure was to take blood samples from the baby's cord to determine just how anemic she really was. There were a couple people from the lab stationed in the OR during my procedure. They could test the blood right there so they knew what they were working with... then the doctors could do calculations to determine how much blood they needed to give to get the blood counts back in normal range. They took a couple of different readings... one of them showed that the baby's hematocrit (the percentage of her whole blood that is taken up by red blood cells) was 2% and one of them showed it was 7%. Yikes. I remember hearing this during the procedure and thinking that I must have heard them wrong. To give a little perspective, an adult is somewhere around 40% and a fetus should be somewhere around 50%. Our surgeon explained that babies can handle a low hematocrit for longer than adults, but eventually they go into heart failure just like adults would. There was NO evidence of heart failure for Baby A. Basically, thank God this procedure was done emergently, and we pray that it was done before any serious damage occurred.

Once we got to recovery around 4pm, Nate promptly began his search for the Reese's Peanut Butter Cups that he had promised to get me after the procedure. (Because of the nausea, I didn't end up eating them until after midnight, but oh well.) Our doc came by around 6pm to scan us again, I think just to ease our minds more than anything. The first things she showed us (as always) were their two beating hearts. When looking at Baby A's abdomen, we could see all the extra blood from the blood transfusion. This will be absorbed slowly into her bloodstream, which is why we probably won't see any major changes for a while. We plan to go back Monday for another ultrasound. If the procedure was successful, we would expect that the bloodflow numbers will have improved, but not necessarily that they will be in normal range yet. We will be happy with any improvement we see!

We know that sometimes for babies with TAPS, a blood transfusion is all they need to "reset" the amount of blood that flows in either direction from the placenta. While we are more than willing to do more transfusions or a repeat laser procedure if we need to, we are hoping and praying that this is just what our babies needed to finally BOTH receive the right amount of blood. Thank you again for all your prayers for us and our babies. We love you all!

Nate, Sara, and Babies A and B

Wednesday, January 8, 2014

Twin Anemia Polycythemia Sequence

Our follow-up ultrasound in Ann Arbor was this morning. We expected just a quick look at the girls, their bladders, their fluid levels, and their bloodflow, and to drive back to Holland. Our appointment ended up taking over four hours, and we don't know if we're going to make it back home tomorrow night or Friday...

We were ecstatic during the ultrasound not only to see two beating hearts, but to see two bladders! In addition, Baby B's fluid levels have tripled from last ultrasound (not quite in the normal range yet, but much closer. We didn't expect everything to be "normal" yet, so we were so happy with this!) When they were looking at the bloodflow patterns through each baby's brain, we noticed that when they measured the velocity of bloodflow, there was quite a difference between baby A (in the 60s) and baby B (in the teens). This wasn't a value to which our attention had ever been drawn in the past, so while we thought it was weird, we didn't think much of it. We were just happy, again, to see improvements in their bladders and fluid levels.

When the doctor came in (the same doctor who did our initial consultation), she said she had good news but also some concerns. The good news she shared with us was what we already knew... Baby B's bladder was visible, fluid was increasing, and the amount of fluid around Baby A remained in normal range. Awesome! Her concern was the speed of the bloodflow through the babies' brains. Baby A's  was quite high for her age, which signifies she is likely anemic due to not getting enough blood, and Baby B's was pretty low, which says she is polycythemic getting too much blood. In addition, Baby B's liver looks "different," which possibly means that she is now being overloaded with fluid. Hmm, sounds kinda weird, since before our surgery Baby A was getting way too much blood, and Baby B not enough. To make sure she had the numbers right, she scanned us herself and confirmed that it was a concern.

We waited for what seemed like forever to meet with her to discuss the implications of this new concern (and found out that she had been consulting with some of her partners, including the doctor who did our surgery last week, which is why we had to wait.) Basically, what they believe happened is that there were one or more blood vessels that were not seen during surgery that began to shunt blood in the OTHER direction once the other connecting blood vessels were coagulated. This was a risk we were aware of, since not all blood vessels were visible to the naked eye, even with the special camera equipment they were using. This condition is called TAPS (Twin Anemia Polycythemia Sequence). It can happen spontaneously with TTTS, but it more often happens after laser procedures when vessels are missed. It's likely that these blood vessels were very, very small, but have become more prominent to the point that they are shunting an abnormal amount of blood away from Baby A toward Baby B. I think I uttered the words "This is my worst nightmare" three or four times during this conversation. It just feels like we and our babies can't catch a break.

So, what next? She offered us another laser procedure, which they would want to do tomorrow or the next day in order to prevent neurological damage to either baby due to the abnormal blood flow. This surgery would be much more risky than the first, considering there would be another hole poked in the amniotic membranes, and there is less fluid to work with. Either way, she thought it was the best chance for our babes, and we told her through our tears that we were definitely willing to do it. Sign us up! She left the room to figure out the logistics/timing of the procedure, and we waited again for at least a half hour... it turns out she had gathered her entire fetal team and they had been reviewing what the evidence says about cases like ours. They even called over to another physician in Philadelphia to make sure they had the best plan in place for us. This is what we appreciate so much about this team. No one doctor that we've talked to seems to believe she has all the answers; she consults with the rest of the team and even doctors across the country to make sure they do what's best for OUR babies. It was awesome that, within minutes of our ultrasound, our doctor from today, the surgeon, and another member of our team were physically in the same room looking at our ultrasound. We really feel like they care about us and our babies, which is really comforting.

The next person we saw was the doctor who did our laser. I was so glad to see her because I felt we had connected so well. The first thing she mentioned to us was that there ARE documented cases where TAPS resolves itself spontaneously; of course, none of us want to just wait to see if that happens, considering that the risks of neurologic damage increase the longer this goes on. It turns out that the consensus between all these physicians was that there was a less risky option than going straight to the repeat laser surgery. Since Baby A is now anemic, they can give her a blood transfusion through her cord or even into her abdomen. This will solve her anemia, at least temporarily. This could hold the babies over so we can see if the TAPS resolves itself or if it's going to be a continued concern. While this IS a risky procedure (done in the OR), the needle inserted into the amniotic membranes is much smaller and the risks are lower than with a repeat laser surgery. This was the official recommendation from the fetal team, and we trust their judgement. We will be going in for this procedure tomorrow (Jan. 9) at 1:30. It will be done with IV sedation and local anesthetic, and we may or may not spend the night, depending on how long the procedure takes and how things look afterward.

This does not mean that we won't need another blood transfusion or another laser surgery in the future, but we are going to start here and see where it gets us. We are scared and exhausted. Since we don't know when the blood started flowing in the wrong direction (it happened sometime between our last ultrasound and today), there could already be damage to Baby A's brain. Our saving grace is that our babies were "rocking and rolling" (according to the doctor) today, meaning they were moving around a lot. With severe and progressed anemia, they usually see babies' movements start to slow down. Our hope is that this means this is a new development that has been caught early.

We booked a hotel room in Ann Arbor tonight, and we're just going to relax for the rest of the day. We have to be at the hospital at noon tomorrow. Thank you for all your prayers. Please continue to pray that the procedure goes well and that the TAPS will reverse itself so no further interventions are needed. Also for Nate and me, as we are completely exhausted and worn out from all this. We will update you when we have information.

Love,
Nate, Sara, & The Twins


Hi Mom and Dad! I'm feeling a little tired; I think I need a blood transfusion!

Friday, January 3, 2014

We Feel the Love!

Can I just say that I feel like the luckiest girl in the world!?

Nate and I have been blessed with not one but TWO little girls (I STILL can't believe that!) and we have such amazing people in our lives. Since this whole thing started 2 1/2 weeks ago, we have felt so much support from our parents, sisters, families, friends, work, and even people we didn't know. We have been blessed with amazing doctors who care not only about my health and the health of our babies, but about our emotional well-being as well. We were blessed to quickly get a consultation at (we think) one of the BEST hospitals for our babies' condition, and even more blessed to get in quickly for surgery to give our babies another chance. (I think Nate has been converted to a U of M fan.. just saying.) Thanks to the amazing places we work for, we have had no trouble getting off work for any of these appointments or procedures, which just makes this all so much easier.

OK, now I get to brag about my hubby for just a minute. Not that there was anything wrong with our marriage before, but this whole experience has made the two of us closer than we have ever been. I can just feel that he loves me and our babies SO much and will do anything for us. Whenever he's home, he basically waits on me hand and foot, and he even brought me cupcakes home from work last night. (But he only let me eat them after I proved I had eaten enough protein for the day.......) I couldn't ask for a better person to go through this crazy experience with. Love you babe. :)

I was 7 weeks pregnant in this picture, with what I thought was a normal pregnancy with just one baby. Little did I know what was ahead for us. :)

Being activity-restricted is probably the most boring thing EVER, but I am so thankful to have amazing support from Nate and our parents who have already begun bringing us meals, plowed/shoveled our driveway and sidewalk, and check in on us every day. I just had a yummy Subs-N-More lunch catered to me by Mandy and Kinsley (see picture), and my sister is on her way here to relax and watch a movie with me. Many others have offered to bring us meals or help out with whatever we need, and we are SO thankful. If you have offered, we WILL take you up on it (doctor's orders!)

Kins had lots of fun looking at pictures of the babies and all the fun toys, clothes, and blankets we have for them already. She also thinks their names should be "Girl."

On top of all this, we know more people are praying for us and our babies than we will ever know about. I just wanted to say another thank you to all of you! We could not (and wouldn't want to) do this on our own. So many people love our little girls already; we can't even comprehend how much they are going to be loved when they finally make their appearance into the world. :)

We love you all!
Nate, Sara, and the Girls

PS. A fun fact! I talked to my surgeon this morning (yes, the amazing surgeon who I love), and she told me that she grew up and played soccer with Monica Lewinsky. Funny, huh!?