Wednesday, December 28, 2016

A great update

Hey folks! I hope you all are having a great holiday season with friends and family and loved ones. Our family had a quiet Christmas at home, or as quiet as it gets with four kids who just want to open all the things right NOW. We got them a large trampoline for the back yard and the house has been blissfully quiet for hours since we got it assembled yesterday. The dog doesn't like to hang out outside by himself because he's a big weenie who doesn't know how big he is but he loves to play out there when the girls are outside so even he is reaping the benefits of this gift.

Yesterday I saw my OB and today was the MFM. As of this morning we literally couldn't ask for the boys to look any healthier. Their fluid has equalized and actually Cooper has a little more fluid today! Cooper's largest vertical pocket was around 5.4cm and Lincoln's was closer to 5cm. There are cases in which TTTS can reverse so that the donor becomes the recipient and vice versa. I don't want to worry that that's what is going on here but it's not impossible so of course it has crossed my mind. But right now, today, they are as perfect as we could ever ask. Cooper measured about 12 oz and Lincoln was 13 oz so their growth is right on track and both boys have long limbs and big ole heads.

I said I wanted this blog to become boring and I find myself with delightfully little to report! Yay! This week was the first time I felt one of the boys have the hiccups and it has happened a few times in the last couple days. When I was pregnant with A(8) she had the hiccups all the time, to the point that it was no longer adorable and became a nuisance. When she was a fresh infant she had the hiccups at least twice a day and they were big and sounded almost painful but now we have total soft spots in our hearts for hiccuping babies. There are really real babies in there.





Thursday, December 22, 2016

2 little misters at 20 weeks

Today we would be at the halfway point of a regular pregnancy. I'm 20 weeks pregnant! I'm not exactly sure when was the 'halfway' mark for this pregnancy but we've been told to expect the boys to arrive about a month early if all goes well so we were probably halfway there awhile ago. Physically I'm feeling run down due to a bout of the stomach flu this week during which I briefly thought I had broken a rib vomiting. Don't get a stomach bug while pregnant! Thankfully it was short lived so I didn't end up going in to the hospital to get monitored or get IV fluids but I was very close to doing just that for a few hours. I probably would have done so if I wasn't dreading an hour drive there. The hospital in our town is not where I would choose to have our boys in any emergency situation so if I were to be admitted anywhere I'd want it to be at the hospital we plan to deliver at.
 I had to reschedule my appointment for this week due to the awfulness but thankfully they were able to squeeze us in on Tuesday before my MFM left for the holidays. She had told us that we could be seen by another doctor in the practice in an emergency but we obviously like sticking with the doctor who is familiar with our case so I was happy she had room for me. We knew during the scan that things were different but I was trying to remain as optimistic as possible. Sometimes it really annoys me how the human brain can refuse to accept things as they are and either sees things as brighter or far far darker than they really are.
Like I've said before, at every scan they check three or four doppler measurements of blood flow in different spots as well as checking for the largest vertical pocket of fluid for each baby. Tuesday's heart rates were much more different than we've ever seen with Cooper at 160 and Lincoln at 134 beats per minute. Both those numbers are within the normal range for the babies but we're just used to seeing them be within five or ten beats of each other so that was our first concrete clue that things were not going to be as good as last week. We could also see immediately that the amnion, the membrane between the babies, was much harder to see this week. Then Dr B told us that the brain dopplers were actually her biggest concern. Lincoln's number at around 36 was about perfect. Cooper's number at about 18 was not. Being told that there's a problem with the blood flow to your child's brain isn't something you get used to and I'm actually finding it more difficult this time after having such a great scan last week.
 Dr B also said that she is concerned about the fluid levels. Lincoln measured around 5.5 cm and Cooper was around 3.6 cm which seems like they are evening out more but she said that Cooper's measurement is somewhat skewed by the fact that the membrane is tenting over his limbs. It rests right along his face and then he is able to push it up with his arms and legs, which gives a nice big pocket of fluid near his bottom but he still doesn't have a nice cushion all the way around like a baby should.
We're not at the point yet where we call the specialist in Houston. We're back to watchful waiting and hoping that next week we have another awesome scan. I'm trying to be thankful that we're home for Christmas and that our next appointment is on Wednesday and we could theoretically leave within hours if we needed to get to Houston to be seen the next day. I am thankful for each day that these boys have had to grow and get stronger. But knowing all that we have to be grateful for doesn't do much to stop a mama's heart from worrying. *sigh* 

I hope you are all having a fantastic end of the year! I hope that your Solstice, Christmas, Hanukkah, Kwanzaa, Festivus, Saturnalia, or other celebrations are joyful and filled with love. Most of all I hope you are filling up on seasonal goodies. I found myself near tears in Walmart today because I was wishing to be up north with our larger extended family for Christmas. The hormones are a little more serious when there are two babies jacking them up! My mom had many siblings so there was always a large assortment of cookies and treats along with jokes about the awful smelling lutefisk. As we got older, my aunt and cousin took on baking pies for the holidays and I could really go for a slice of the blueberry this year! My mom makes a ham and cheese ball that has no redeemable nutritional value but is delicious nonetheless. Of course I miss the people more than the food but there are certain dishes that I associate with each person around that Christmas table. Maybe in a couple years we can get back! I don't have any delusions that we'll be able to make it next year with two little additions but someday we'll brave the snow and bring all the kids north for Christmas.

Saturday, December 17, 2016

19 weeks plus a little

The last handful of days have been delightfully normal around here. We finally made it through the long week of holiday performances, holiday parties, and one vomiting child. W got sick overnight Wednesday/Thursday but I swore at the time that it was just an overdose of blueberries coming back to haunt her. She seemed fit and fine in the morning so I sent her to school and settled in for a slow day of cartoons and snuggling with the small one until we got a phone call to come collect our green in the face kiddo. It turns out that she had vomited on the stairs before school but neither she nor the teenager felt like that would be useful information for me to know before I unleashed her on a class full of kindergarteners. Oops. I truly hope we didn't contribute to anyone being sick over their Christmas vacation!
^ photos taken at 18 weeks pregnant ^

As far as pregnancy goes things are delightfully normal for me. I suffer from symphysis pubis dysfunction (SPD) during pregnancy which basically means that my pelvis moves too much and hurts like a mofo and causes pain in my hips and back and legs. I was even given a temporary handicap placard during my pregnancy with B when the pain of even walking into an appointment became too much. I'm not at the point yet but don't doubt that I'll get there. It also gives me a super fun waddle the makes me look even more pregnant than I am.


I've also got the typical heartburn, insomnia, itchy skin, congestion, and aches & pains that accompany pregnancy. But I'm starting to feel a little more movement from the womb nuggets and my stress level is much much lower than last week so I'm still feeling grateful. We decorated gingerbread houses with the girls tonight and I'm taking the older two to see a performance of The Nutcracker tomorrow that I'm hoping will be a super fun outing for them. I went through one of my totes full of baby clothes  and pulled out what will work for boys and ended up with more than I expected. I need to get together with some friends and see if I can talk any of them into trading me some boy hand-me-downs for my pink and purple stuff! I set aside a few items that are a little more sentimental for me in the hopes that my grandkids may someday wear them but I'm trying to keep that to a minimum because I tend to be a pack rat. All of my kids have worn items that my mom saved from when I was a baby and all of them have had a first birthday cake made in the same pan that my first birthday cake was made from. These things mean so much to me that I want to make sure my girls have at least a few items saved for any kids they may have. Do you have any family traditions or handed down items that mean a lot to you?
 We finally got some good pictures of both boys at the same time!
 Lincoln Michael is on the left and Cooper James is on the right. Cooper still spent a lot of time curled up but it was so amazing to see him stretch out his legs several times and wiggle all around.
 This one was taken in the middle of what appeared to be Lincoln giving Cooper a kiss but they spent much of the scan punching and kicking each other so I don't expect to catch this again.
We have another appointment with Dr B on Monday and she said they'll take some more measurements this time to be sure that the boys are growing evenly and nobody is struggling with growth restriction. If everything still looks awesome like our last appointment then we'll push it out to two weeks between scans but I still see my OB every two weeks so she'll do a lower level ultrasound and check heartbeats on the off weeks. Until then, keep sending all the good growing, healing, loving vibes you've got! We appreciate every spare thought you give our little cheese doodles.

Tuesday, December 13, 2016

Week 18 updates

Being a parent often feels like holding your breath. Like these little lives are a crazy house of cards and if you or anyone around them even breathe in the wrong way it can all come tumbling down. Being a parent to two fetuses with a rare and potentially deadly condition feels like trying to hold back a monumental flood before it meets those tiny card houses.

Our appointment with the specialist, Dr B, was amazing yesterday. The boys look better than they ever have before. They measure the babies' fluid by finding the largest pocket they can and measuring vertically. Cooper had more fluid than we've ever seen at around 3 cm. Lincoln still has more fluid at around 7cm but both boys are well within acceptable numbers. Both have great blood flow and visible bladders. These things add up to our boys no longer even fitting into stage 1 of TTTS. We know that they still have TTTS and things can change any minute but for right now they are both able to move and grow and do all the things fetuses are supposed to do. Every single day that they get to grow normally is one day stronger and healthier should things go downhill again.

Usually during our scans the tech is able to get measurements and blood flow from baby 1, Cooper, very quickly because he's been squished at the bottom and can't do much wiggling away. Yesterday we got to watch her chase that boy all over the place and struggle to get his blood flows measured because he wouldn't sit still. The donut I ate on the way to the big city probably didn't help that situation but I don't even care. He had enough fluid to be difficult! I'm sure there will come a day when I'm chasing two babies all over the house and wishing they would just be still for a minute and my goal will always be to look back to this day and remember that this was an answer to prayer.

My dad says maybe this is a little bit of the Christmas magic that we both search for every year. I know that for me it has finally gotten me into the holiday spirit. We put up most of our decorations a couple weeks ago so that it would be done in case I was on bed rest or going down for surgery but I didn't really feel like doing it at the time. It wasn't the fun and festive time with my beloved family that I usually strive for. But now I have visions of sugar plums and gingerbread houses and cookies for Santa dancing in my head.

After our scan yesterday both Mike and I had similar physical reactions. It was like we had been holding back a giant wave of stress and worry and helplessness. Like we had been wound up tight from the second we learned there was a concern about the boys and now we were finally about to let go of the tension for awhile. I posted on my personal facebook wall about how it was like an adrenaline response. When you encounter a scary or stressful situation and you go into fight or flight mode where you do what needs to be done to survive. Then the stressor is gone and you feel shaky and weepy until that fades into a whole body exhaustion. We've had a crazy week around here with appointments and Christmas shows and obligations so we were both already tired and sore but I reached a whole new level last night. I don't remember having slept so hard or so well in a long time as I slept last night. Mike's body went so far as to break out in stress hives after our appointment! The human body is so crazy and amazing and weird.

So things are great today. We're feeling excited and hopeful for a more normal pregnancy and less worries. Like I said, things can change at any second and we could easily go back to a stage III or higher in a matter of days but we're thankful for every day. We're only 3 weeks 2 days away from these babies having a chance of survival outside their cozy womb. I'm hoping we're like 19 weeks from delivering but knowing that we're so close to that first milestone is awesome. I have pictures and regular pregnancy updates to share but you'll have to come back for that because this post is already ridiculously long.

Monday, December 5, 2016

In which we beat the odds

I don't think anyone expected to see the boys doing better today. We were all very prepared to be making a trip to Houston this week and even the ultrasound tech we saw today talked about when we went, not if. But the boys are doing better. Well, Cooper is the baby we were concerned about and Cooper is doing better. He has a visible bladder today and better blood flow to his brain than before. He is still well within normal size difference from Lincoln and while he is still very stuck in his smaller amount of fluid with their separating membrane right along his body, he is able to move it with his hands and feet and get an okay sized pocket of fluid.
I'm pretty sure that line you see just above his hand here is the membrane in question. Last week it was very difficult to see because it was so tightly saran wrapped to his face and body. This week it was much easier to find. I still haven't even processed the feeling I got when she started the scan and the first words she said were "There's baby 1's bladder". I went into that room prepared to be told one or both of my boys was worse or even passed away. I'm not foolish enough to think one can ever be prepared for those words but I was going to be ready for it. I was in the mental and emotional place I needed to be to hear the worst and instead was told the opposite.
 Because their imbalance no longer causes abnormal blood flow we aren't in stage III. Because we were able to clearly see Cooper's bladder we aren't in stage II. Somehow, against everyone's expectations and the odds, we have gone back to stage I TTTS where we just watch and see. The doctor in Houston wants us to keep our appointments on Mondays each week so that if there is a change we can be seen down there the same week but for now we're just going to wait and see what these little miracle boys do.
I am so thankful for all of you who have spent even a second of thought or in prayer over these boys! I know I've said it before but I truly believe these boys can feel all your energy focused on them being healthy and strong. If we still end up having to go for surgery, even just this one more week gives us all better chances. It gives them a better chance of a successful laser ablation. It gives us at least that one week less of trying to fight any preterm labor. And it gets us one week closer to these babies being viable in the outside world.
So now we wait another week and hope to hear that their fluid has balanced out. The excess of fluid around Lincoln still puts extra stress on his heart and body but he hasn't shown any sign of that stress yet. Many recipient babies have much more fluid than he currently has and it can build quickly so we definitely aren't going to sleep easy but will for sure get more sleep than we did last night.

I am excited to spend my week continuing to clean every part of my house and start wrapping Christmas presents. I had resigned myself to using gift bags for everything and I still might use more than usual because wrapping A's birthday presents the other night was quite the ordeal! Let's just say I am not getting more graceful as the days pass.

Sunday, December 4, 2016

Some pictures and the babies' names!

I forgot to share the ultrasound pictures from our appointment last week! I know many people can't make heads or tails of these things but I just love them. My mom has worked in the radiology department of a hospital all my life so X-rays and ultrasounds are something I saw more than most people. The ultrasound techs I saw throughout my first pregnancy were women who had known me since I was born and we were able to visit them again during my fourth pregnancy when my local techs couldn't tell me for sure if we were having a boy or a girl.
World, meet Lincoln Michael! It's always easier to see twin 2 because he can stretch out and move around to show us all sorts of good angles.
And this is Cooper James! Especially in 4d it's really difficult to get a good photo of this guy because he's snuggled tightly in the bottom. He has his little knees pulled up to his chest and his right elbow was up by his ear during this whole scan.
 Our naming process is time consuming and elaborate but naming these two was actually the easiest of all our children. Maybe we work better under a time limit? As usual, I went through our huge book of baby names as well as various websites and added an app this time to make a master list of names I liked. I narrowed it down from over 110,000 names to a list of 93 that I liked and thought had a glimmer of a chance that my husband would like them. I even read the list to the three big girls and put a mark next to the ones that each girl said they liked. They each had different favorites and I don't think their opinions really swayed us either way but at least they were able to give some input.
 Michael looked over the list, some of which were names I preferred as middle names, and marked 10 that he liked. There are times that I wish he could be this decisive but 10 felt really limiting when we had two babies to name! But the next step left me thankful that it was only 10. I took each of the final list and read it with each of the 93 names plus Michael and James. I then made a spreadsheet of the ones I liked the sound of so Mike could see them written out. It felt a little like wasted effort when we ultimately decided to go with James and Michael (as my momma suggested, thanks mom!) but at least we knew that Mike didn't love anything more than he liked those middle names. After he read all the options he told me his top three names were Cooper, Easton, and Lincoln.
 Can you even?! That little foot! I have a feeling these guys might have gigantic feetsies like their big sister B. It was the first thing everyone said right after she was born.
The strange thing is, both Cooper and Lincoln had stuck out in my head the whole time I was making the last spreadsheet. I had no less than 4 people in the previous weeks suggest Lincoln to me and Cooper just struck a chord. Like I could almost see my tiny little Cooper. Coop (or CJ, which is a middle name that brings me fond memories) and Linc. Mike isn't sold on the nicknames and I'll probably never use them but I like that they'll have the option. I sort of feel like my boys chose their own names and we just had to figure out what they were. Neither are names we've ever come close to seriously considering before. Neither are names I even mentioned after we learned we were having boys until I set a time limit and we sat down to get it done.

So our babies have their names. Cooper is the donor and will probably be the first born but I think of him as the little brother. Hopefully things will go well and they'll both be about the same healthy size soon! Lincoln is the recipient working on processing too much blood and fluid for his little body. I posted a link over on the FB page to the hospital I've been referred to and their stats for the particular surgery we are being considered for. The statistics helped me to understand why the doctor wanted to wait a little longer and give the boys a slightly better chance. It looks like the further along the surgery is done, the better the survival rates for both babies. We're still not going to be in the most favorable group if we go down this week but at least they'll be one week bigger. In about 18 hours we should have a good idea how they are doing and where we go from here.

Saturday, December 3, 2016

My new ride

I mentioned our new van in my last post. This was not a planned purchase. This was in fact a very poor time to be making such a purchase as we just bought a brand new van a little over a year ago that we had planned to keep for years to come and we were upside down on the loan. I loved that van! I went from a van that made me angry every single day to one that worked perfectly and was clean and new and had so many features. When we planned to have one more baby we were fine. My van would have seated the seven of us and I already knew who would sit where. My van did not seat eight.

So we were on the hunt for a new van. This hunt took us to every dealership in our town and half of them in the nearest metro area. We had a salesman in town actively looking for what we needed (although we weren't entirely sure yet what it was we needed) and several others with our info to call if something came in. But nobody had any vans that would seat eight. They had SUVs, which would work for many families but not ours because my garage is the slimmest garage known to man and our kids would destroy doors like that in five minutes or less. They also had no knowledge of minivans so we had to educate all of them.

For reference, there are three models of minivan that seat eight. The Honda Oddessy, Toyota Sienna, and Kia Sedona. We looked at every model and feature and knowing that we really wanted automatic sliding doors for getting twin babies in and out, we were able to narrow it down to certain versions of each van. Then we were able to sit in a few. We quickly learned that we could only afford used vehicles and looking at a Honda or Toyota was going to put us in something several years old. After many days and nights of both of us with a million computer tabs open, one trip to test drive a van that got sold while we were waiting, and much internal settling for something I was going hate, we discovered that Carmax offered several 2016 used Sedonas close to our price range and were also able to give us thousands more in trade in value than anywhere else we had checked. Both of us had awesome experiences at two different Carmax locations and would totally recommend them to anyone even though we ultimately bought our new Sedona from another dealer.

Carmax was able to transfer a van in the color we wanted to our local dealer for $550. But that van was sitting in Denver and we realized that Mike could drive there and back for less money and we both love Denver so having an excuse to visit didn't make him sad. They make Coors there. They only sell low point beer in our state. Enough said. And it just so happened that life worked out that he had a VERY rare three days off right when we found this vehicle. Looking back I think it was supposed to work out exactly that way. We were supposed to get the van thing settled before learning about the TTTS so it was one less thing to fit in and worry about.

So he was off to Denver. And it just so happened that he found another very similar Sedona at a dealership 90 minutes away to look at as well. This last minute addition to the tour ended up being just the right stop and he was able to bring home our new used van the same day my parents arrived for roof repairs/Thanksgiving/birthday. And of course he picked up a nail on the drive home as well so we had to get a tire fixed first thing the next day.

It isn't a fast and hot love with this new van like it was with my last one. I like it but obviously am comparing it to stiffer competition so it suffers there. I'm hoping it will be a slow building and long lasting love. This is the van that will bring our boys home so of course I will love it.

Friday, December 2, 2016

Panic, make plans, then cancel them all

On Tuesday (the 29th) I had my monthly appointment with my OB. She does a quick ultrasound at each appointment in lieu of measuring fundal height (how large the uterus is) so we took another peek at the boys. I had been feeling lots of movement from both of them until a few days before that appointment when I suddenly felt nothing for days. At only 16 weeks many moms can't feel any movement and it isn't anywhere near a good indicator of health for the babies so my brain knew this wasn't something to worry about but of course that doesn't stop a mama heart from fearing the worst. So that look was much needed! Both boys were moving and had good solid heart beats and I was able to take a breath finally. We talked a little about my delivery and hospital options and she told me that she's only ever had one other patient with TTTS. I don't like being unique in this way. She ended by telling me that she'll see me every two weeks now for awhile. I drive about 45 each way for each of these doctor appointments and they never have openings on the same day so I'm up to once or twice a week now.

Wednesday brought my second appointment with the MFM specialist, Dr B. By this time I felt like I had a much better grasp on what we were looking for and at so I could tell that some of what the tech was saying meant I wasn't about to get great news. But it is still amazing every time I get to spend a little time peeking at their little bones and faces and fingers and toes. I got to see a perfect little foot! But the measurements I saw were definitely still not good. Baby 1 had about 1 cm of fluid in the largest pocket she could find around him and she wasn't able to locate his bladder. Baby 2 had around 9 cm of fluid. Dr B came in at the end and confirmed that things were trending in the wrong direction. The boys are still fine but the blood flow in the brain of one of them (I missed who it was) was less than the week before and the fact that we could no longer see the bladder in baby 1 meant that he is struggling with his low fluid. She told me that she was going to call the hospital in Houston and see if they were ready to see me.

Houston is the closest location that offers a surgery that can potentially fix the transfusion. It's called fetoscopic laser photocoagulation. Similar to an amniocentesis, they insert a small catheter into the uterus and use a laser scope to basically cauterize the connections between the babies. This surgery carries many risks and possible outcomes but is the best chance once the babies reach stage III or greater TTTS. My understanding is that we're just barely into the numbers considered stage III.

Dr B talked to Houston and based on the conversation they said they wanted us to come down for a full evaluation and potentially same day surgery on Friday, today. We scrambled to make plans for the kids and the dog and travelling and were a couple hours from heading out the next day when I got another call from our nurse coordinator in Houston (such a great thing to have! She's a personal connection that I can call or email any time and she'll get the answers I need) saying that my doctor down there finally received my full file and wanted to wait a little longer. I know that they only start considering you for surgery at 16 weeks and she said that with it being so early the Dr wanted to wait as long as possible. This prevents us from going all the way there only to be told to come back in a week but it also meant we had to scramble to undo the plans we had made in a hurry. The Dr in Houston wants us to see my MFM here on Monday morning and they'll talk immediately after to make a plan. The nurse said it's more than likely we'll be going down to Houston next week after that appointment but it's not certain enough to make appointments or travel plans or anything.

All of this back and forth makes it very difficult to arrange care for our kids because we live 1000 miles away from our family. Mike and I both have parents that want to do everything they possibly can to help us but nobody can get a flight that fast and driving through the night to get here doesn't set anyone up for success in an already stressful situation. Thankfully we have made amazing friends in our town including many who have offered repeatedly to step in and do whatever is needed to help us. Even the local children's librarian, who genuinely loves all the kids who come in and is a good friend, offered to come stay with the kids if we needed her to! One good friend, who has three kids of her own and watches her nephew during the day, agreed to take our four raggamuffins and was even willing to take the stinky dog for the four days we would be gone during our original planned trip. Our neighbors graciously agreed to take said stinky dog though to take a little pressure off my saint of a friend. Then we had to call all those people back and tell them thanks but no thanks! I've never felt such an outpouring of love and am so thankful for the people we have in our lives! I often miss our old community and know they would do much of the same but we had family there so it was different in many ways. It has made me realize that I've often made excuses when I could have been of service to those around me. I'll be better in the future when I have my feet under me again.

So we wait until Monday. I have felt lots of kicks today and yesterday, which is very comforting, but I'm not sleeping well because I am a mom and just worry with my eyes closed. I'm trying to take this time as an opportunity to get some things done before the possible surgery. I would most likely be on bed rest for at least a week following the procedure which means a week of cleaning, laundry, and meals that I'm not able to take care of. Mike and the kids are obviously able to keep us from descending into squalor but we're already starting from about 10 steps behind because I've been letting things pile up more than I should. I could blame that on being pregnant with twins but really it's because I'm a lousy housekeeper. I do the bare minimum until it makes me crazy and I clean everything until I'm exhausted and crying. I can't explain it or fix it so we all just deal.

My friends have been such an amazing force these last few days! One came over today and demanded to do some chores and another is coming over tomorrow. It's hard for me to ask for help from anybody so for these women to know that they need to just show up means so much. It's still weird to try to think of things that other people can do around my house and even more strange to watch them do those things while I sit on the couch. I love when a friend keeps me company while I get work done but this is very different. I cleaned out my half of the garage today so that I could park our new van in it for the first time in weeks (shh, don't tell my friends. There's still work to be done in there but my children don't have school tomorrow so I plan to direct from a chair while they do the rest) and because it's cold in the mornings and I don't want to park outside anymore. That in combination with the few other things I did around here today was more than my body was prepared to handle and it reminded me in no uncertain terms that I need to take things in smaller chunks. So I'm going to be better about that.

Some info on TTTS

I'm going to post some links to some basic information about what TTTS is at the bottom of this post but here's my super not a doctor explanation. Please don't take anything I say or do for medical advice! I have neither the patience or education for anything like that.

Twin-to-Twin Transfusion Syndrome (TTTS) is a disease of the placenta. Our babies are monochorionic diamniotic twins (mo/di) meaning they have one outer sack and two inner amniotic sacks. My boys are healthy and perfect but they share one placenta. This is common for identical twins but a small percentage develop TTTS. I think of it like tree roots. Veins and arteries grow from the umbilical cord into the placenta like a tree putting down roots. In TTTS some of those roots meet roots from the other baby and they grow into one vein or artery. Blood can then flow directly from one baby to another. Sometimes it's an even flow in each direction and things are great. Sometimes the flow of blood only goes one direction and then you have a donor twin and a recipient twin.

The donor twin ends up with less amniotic fluid and the recipient ends up with too much. The donor has too little blood and nutrients while the recipient has too many. This puts stress on both babies in different ways and can lead to death of one or both fetuses.

In our twins the donor twin is Baby 1 who is stuck at the bottom of my belly in a much smaller amniotic sack that gives him very little room to move. Baby 2 is the recipient floating around the top in a big ole bouncy house full of fluid. My particular perinatologist (or MFM) office doesn't call them A & B like most people have heard. #1 is always the one closer to the exit.

I hope that helps you understand the disease a little better! Please don't hesitate to comment with questions and I can try to find answers for you. Hopefully these links can shed a little more light for those of you that want more info.

http://tttsfoundation.org/
http://childrens.memorialhermann.org/uploadedFiles/_Library_Files/Childrens/TTTS%20FactSheet%2012-24-13.pdf
https://www.cincinnatichildrens.org/service/f/fetal-care/conditions/twin-twin-transfusion-syndrome
http://www.texaschildrens.org/twin-twin-transfusion-syndrome-ttts

Meeting the perinatologist

During my 15th week of pregnancy we went to the Perinatal Center and got to spend a long time looking at all the little bits and pieces that make up our two little babies. We got to see their little feet and ribs and brains. We could see the blood flow through their umbilical cords. Because we are seeing a specialist the ultrasound equipment is far better than many places and the scan was longer and more in depth than even the usual anatomy scan.


Baby 1 is down at the bottom and should be the first to arrive. This baby spent the entire scan with crossed legs and hands behind the head like it was laying in a little hammock down there. Baby 2 is towards the top and just bounced around all over showing us every move and every body part. It didn't take long for the tech to be able to show us that this baby was definitely a boy! We were having a boy! And then she told us that she was pretty sure that our babies were identical twins but it would be easier to confirm if baby 1 would just give us a little better look. It took a lot of poking and prodding, which left me feeling a little sore that evening, but we finally got a pretty decent look to confirm that this baby was indeed another little baby boy.

My friends all wanted to know how my husband reacted but Michael is not the most effusive man on the planet. He's thrilled of course but this isn't a guy who cries or jumps up and down. I mean, put his football team on tv and there will be yelling and hat throwing and some cheering now and then but only sports bring those kinds of reactions.

After the tech was done with her portion of the scan she told us that the doctor would be in shortly. In a few minutes we met the Maternal Fetal Medicine specialist, Dr. B. She gives an air of competence and intelligence that is hard to describe but is also very blunt in many ways. It wasn't long before we were informed that our babies had TTTS. Twin-to-Twin Transfusion Syndrome. Baby 1 was kind of stuck at the bottom because he didn't have as much fluid or space to move as his brother. Baby 2 was bouncing around all over because he had too much fluid and all the freedom a fetus could need. Thankfully our babies both looked healthy and perfect in every way. They were within a few grams of each other for weight, which is well within normal for identical twins. This was something to watch and definitely a concern but they were both great and we'd just keep a close eye on them. An appointment was set for one week later and we went home to tell our girls and my parents (who were visiting to fix our roof and celebrate a birthday and Thanksgiving) that we had two beautiful boys on the way.

Our girls were admittedly less than enthusiastic to learn that they are getting brothers. They'll warm up to the idea gradually but this is all a ton to process for them. A always wanted a brother but twins is not something she expected. W wishes we weren't having any more babies and has told us to throw them in the garbage. She's 5 and we've had a 5 year old express similar feelings for each baby other than the first so we're neither surprised nor worried about this reaction. We know that 5 year olds tend to love their little siblings with a passion and we're excited to see how she takes ownership over her brothers. B is excited but doesn't really get it and would love if I would stop dragging her to doctor appointments. She's going to struggle the most when these boys arrive because they are obviously going to take mommy's attention and time. H is cautiously enthusiastic but she is also smart enough to know that she's going to have to step up and help out a little more when I'm tired or sore or whatever so she has some mixed feelings but loves babies (until they are old enough to get into her stuff) and loves how special the twins are.

Michael and I went home and spent a lot of time researching TTTS. I'll be sharing some links on our Facebook page https://www.facebook.com/4sistersand2littlemisters/ in the coming days that shed a little light on the disease and the potential courses of treatment. It's not light reading so I don't expect anyone to get as obsessed as we have to be but it will help explain things a little more thoroughly than I can. Next time I'll try to bring us up to current news and then keep the blog and facebook page updated as much as possible from there.

Now, what kind of pizza do I want to eat for movie night? And which Christmas movie do I force the kids to enjoy?

Pregnancy, the beginning

In the past, all we ever had to do was think about having a baby and we were pregnant immediately. This time around wasn't as easy but we've become thankful for the extra time we were given and obviously wouldn't change the way things worked out.

I went to my first appointment around 8 weeks and was able to see our little blob via ultrasound but they weren't able to get a good measurement for dating the pregnancy so I went back around 9 weeks and ultrasound was able to measure our baby as being due at around May 11th, 2017. Four weeks later I was back at the doctor for my regular checkup and another little peek at my baby.

Having four children with a few minimally complicated pregnancies, I've seen more than my share of ultrasound pictures. When my doctor started the ultrasound I knew I wasn't seeing anything I'd ever seen before. My brain tried to make sense of it and I thought maybe I was looking at a weird view of the head and abdomen. I knew what I was looking at but was still pretty shocked when my doctor tilted her head and said "Well, I know I have other twins right now but uh, did we know you were having two?"

There is no experience that compares to that moment. I had always said I needed twin boys so I could know 100% that I didn't need any more children. But never, never in my wildest dreams, did I ever think for a second that I would ever actually have twins. There is no history of twins on either side of our families and the extra time it took us to conceive led me to think it was even less possible now. My first reaction was a whispered "holy shit!" closely followed by a dismayed "but we just got a puppy". More on that stupid decision later, I promise.

We spent some time looking at both babies and taking measurements and they were both very active. It was so amazing to see these two tiny humans kicking and hitting each other and bouncing all around! I believe that pregnancy is as close to a true miracle as people will ever come and often marvel at the sheer impossibility of it all but this, this is just another level. One egg, one little seed that was intended to create one whole person split in half and became double.

My OB told me that she always sends her patients to an imaging center for the big anatomy scan but because I am carrying twins she was sending me to another place for a super special ultrasound before 16 weeks. I think I either wasn't listening well or just failed to grasp the fact that this wasn't ever going to be a one time thing. I was also going to be monitored by a perinatologist throughout my pregnancy because carrying twins puts you straight into the high risk category. Yay!

I'm going to attempt to share some pictures in these posts at some point but will need to come back later to add those. I have a relatively new computer and haven't saved any photos onto it yet.

Just a little about us

I expect most of you reading this are going to be friends and family who know us well enough to know most of this but I should probably introduce us to the rest of the world. Hopefully I can keep it short and sweet.

I'm Heather! Woman of many trades and varied interests with an admittedly storied past. I became a mother for the first time at 17. I found myself unexpectedly alone and facing a future I had never imagined with this tiny being in my arms. I didn't know at the time how I was bumbling down exactly the path I needed to get to a future I could never have dreamed of.

I met my husband Michael when I was 19. I worked front desk at a hotel and he was a bartender in the bar connected to the hotel. He had taken the job to fight his boredom after returning from a deployment to Iraq with the National Guard. My best friend watched my daughter while Mike took me on our first date and I came home to tell her that this was the man I was going to spend the rest of my life with. I haven't let him escape since.

Michael works 6+ long days a week for the Veteran's Administration, most of those days from home. I work 24 hours a day trying to avoid laundry and teach our kids to be pleasant human beings. We each have our strengths around here. He's a Cubs fan with a cyst in his brain that may or may not be the cause of his severe vertigo and migraines on top of already being a disabled vet.

We have four amazing daughters who act like we never feed them and think they work too hard. H is 13, A is going to be 8 this Sunday, W is 5, and B just turned 3. They keep us busy and laughing and poor and frustrated and full of love. So full of love that we decided we needed to have just one more baby. Because hello, babies are freaking awesome! I'll pick up the story of this pregnancy in my next post.