Well it's me! I am half awake, super tired, but back in my own clothes in the hospital bed writing to you all. My IV is still in and so are the leg compressors to keep my circulation up. I am also wearing the contraction belt. My back hurts worse then my incision and this heart medication makes my hot and sweaty and dizzy. It also makes my heart race like I have run a marathon. During the surgery whenever they would laser a connection I could feel it vibrate all the way up into my neck. It was so weird! Along with removing 3 pounds of fluid, they did a microseptostomy in two places, which is when they laser two little holes in the membranes that separate the babies so that fluid will free flow a little bit. I was awake for most of the 1.5 hours and slept for maybe 30 minutes. My blood pressure kept dropping super low and it made my nauseous. Thank god the nurse behind me was kind enough to give me meds to bring it back up, to settle my stomach, and to itch my nose and head when they started to itch. My arms were strapped to the table, along with my legs. Dr. Lim basically said it was a preview for my c section! Dr. Habli was there and it was so nice to see a familiar face. Our nurse have also been super nice and accommodating!  So! I have to be in this hospital bed until 6:30am tomorrow when we will have another ultrasound to make sure the babies make it through the night. Then I will be released to go back to the hotel and lay down until Tuesday the 5th when I come back for my follow up tests if all goes well!

After removing the excess fluid I feel less pressure and I can also visibly see the boys kicking when I look at my shirt! I am glad it's been 7 hours since the procedure and I have felt both so I am praying they will stay that way until the morning and ultimately until we deliver!

Anyways...

I got a picture of Gavin's face and his hands. We didn't get to see Gabriel because they only go though the recipients amniotic sac for the procedure, but they are identical so you can figure they look the same!

Also for mom's with TTTS I have put a picture of my incision site so you will know what to expect!
Here are Gavin's Hands



Here is Gavin's face



My incision

Jessica just got out of surgery, it went well. Her and both babies made it through the procedure. Now we just have to wait and see. They removed 3 pounds of amnio fluid and severed 26 connections that the babies shared. Placental share they are saying is 80/20 split. The donor having 20% share. We just have to pray that he keeps fighting and they can both stay in there as long as possible. She is having mild contractions and a little nauseous but other than that no real pain. She will be closely monitored for the next 4 hours and monitor her contractions all night. Hopfully she will be released in the morning with both babies having survived throught the night. We will anxiously be awaiting the ultrasound at 6:30 AM.

The Dr joked that this was good practice for her c-section. :)

They got pictures of both babies but we are waiting to see them. Can't wait.

Well I'm here laying in a hospital bed with leads on my chest, and iv in my hand being monitored for contractions pre-op. At 7am they will take me and my mom down to the PACU where I'll meet with my team of anestisologists and my surgeons before we go in to have the procedure. It freaks me out that I'll need to be awake but not full awake. They said I cannot fall asleep and start snoring so if I do they will have to give me meds to wake my ass up! Talk about something stronger then coffee. I'm more worried about my blood pressure and oxygen levels. I didn't take to my first epidural very well with Ethan and had to be put on oxygen and moved around a million times to get it back up. I've never had surgery before so the thought of it all is completely freaking me out! After its over I will only have 1 stitch with a liquid band-aid over it. It should take about a week to dissolve.

After my surgery they will bring me right on back up to fetal care. I won't have to wait in normal recovery to come to since I won't be fully out. I'll have to lay in bed and get IV fluids with my catheter and monitors all hooked up for 4 hours. I am going to contract afterwards so we will see how I handle it. After the 4 hours are up if all is looking well then I get to get up to use the bathroom and get something to eat. I get to drink right after its done though! Hallelujah! I am so THIRSTY. Anyways. I have 30 minutes before I have to be wheeled down there.

I had to take off all my jewelry and I feel completely naked without my engagement ring on :( I miss Tim and Ethan and wish Tim would have answered the phone this morning but he did get off at 1am and I called him at 4a so he was probably sleeping hard. If anyone talks to him tell him I miss him and love him and Ethan and will get a hold of them as soon as I am coherent enough. Anyone with my mothers phone number or mine can text to get an update but don't be too overwhelming!

I have to be there in 30 minutes. I am beyond myself. Anxious, nauseous, can't drink anything, nervous (poopy) feeling belly. :( I don't take medication very well and last time the epideral made my O2 and blood pressure drop and made me super nauseous. So we will so how it works out today with the local and sedative.

my surgery starts 7:30am eastern and is supposed to last two and a half hours. My mother will be manning our phones and my blog with updates!

I shouldn't feel this nervous! They know what they're doing and have been doing it for a while! I'm not sure right now if I'm more nervous about me or the babies. :/ I just hope I don't feel any pain and make it though all this with both of my boys to go see my son and fiance at home. They've had one maternal death post op which scares the ba-jesus out of me!

keep us in your thoughts! I should probably try to go to the bathroom so the doctors can focus on my belly and not cleaning my numb behind the entire procedure lol

off to get ready. EEK!   

Well I finally talked to Tim on his way to work and got to hear Ethan say "mamamama" and cry a little when he heard me before Tim left. He is nervous about the surgery but he agrees its really the only and best shot we have for our boys right now! I won't get to come home until Tuesday if there are no complications now.

We have to be there at 5:30 am and the surgery starts at 7:30 and should take about 2.5 hours all together. My mom has to wait in the waiting room. I will be giving an epidural, a local, sedative, catheter ect for the first hour to make sure I am good and ready to go. Then an hour and a half will be mapping out the connections and severing them if all goes well! I am just praying for no post ob complications, no pain, to not go into labor immediately after, and to hopefully and god willing leaving with both of my babies still alive inside me waiting to be born. I am praying that the placenta share is close to even so that when the shared connections are severed that Gabe, our smaller donor baby, will be able to get enough blood and nutrients to continue to grow!

Lori, Tim's mom is with Ethan right now, while Tim is at work. Ethan just keeps saying mama and is standing on his own in the middle of the room now I guess. I saw it once or twice before we left but he's doing it all the time now just screaming "ma ma ma ma ma ma ma," I guess. Tim said he crawls around looking up on the bed and behind the couch and in the bathroom looking for me :( I cannot believe we have to spend another 6 days apart :( I miss him and Tim more than anything and have never been apart from them this long. I know this is what's best for my family and our little men and its selfish to want to be home with Tim and Ethan right now. Blah!

This is what our surgery will be like tomorrow. Only I will be under and epidural, sedative, local, and probably won't remember any of it!

We just finished up with our appointment at the fetal care center. Dr. Lim was very nice and sat down to answer all of my questions. We are going to be having surgery tomorrow morning at 7:30am.

Gavin's cardiomiopthy has gotten worse. His Tei Index numbers have more then doubled on his right and left ventricles but there was no signs on the Tricuspid regurg. The doctor told us that if we do serial amnioreductions that I would need to do one or more a week until delivery and the risk to the babies and me would only get us to 23 weeks. That the risk of having 3 amnioreductions, which I have already had one, is the same risk to the babies as having the SFLP one time.

They said "doing the amnioreductions at this point would be like trying to spit on a fire."

But if we do nothing with the babies, AR or SFLP, then Gavin will die within the next 3-4 weeks due to his heart condition. And that doing the serial ARs for the next 3 weeks to make them viable will do nothing because babies born at 24 weeks weighing a pound with his heart condition wont survive, and Gabe won't be over a pound and has secondary kidney issues to the TTTS.

Gabriel is hanging in there! His heart looks great and his bladder is full. But if we lose Gavin because of the shared blood connections we will lose Gabriel or he will have extreme neurological issues or become brain dead.

There is a 93% chance we could bring home one baby, a 70% chance we will bring home both, and an

Before Dr. Lim came in to see us they had already had me scheduled for the first surgery of tomorrow morning. That's when I realized how serious this had become. I am now at a Cincinnati stage IIIC, which means we have serious cardiac issues.

SOOO, now I am on peridal? I'm not exactly sure. I have to take it every 6 hours on the hour to help Gavin. It will be no different then breastfeeding Ethan. I'll just have to set an alarm on my phone and be diligent about it.

We are in the cafeteria now, wasting time, while we wait for my prescription to be filled. They said an hour and a half. So I'm now eating a vegetarian panini, brocolli cheddar soup, and a smart water. We are going to go check into our new hotel after this for tonight, Residence Inn North/Sharonville, thanks to Emily on babycenter for gracious helping us out!

Today Dr. Lim told my mom, she at her age, (which is young) that she had a better chance of winning the lottery then she did having identical twins with twin to twin transfusion syndrome.

No eating or drinking after midnight except to take my medicine at 6am so hopefully we can have a feast in our hotel room.

I'm a bundle of nerves and have still yet to talk to Tim. His mom has Ethan and I told her all about it. He is sleeping after his graveyard shift and has to be back at 6pm to work late again!

I wish he and Ethan were here. :(


Oh and on a positive note I have gained 12lbs worth of fluid in a week and a half!!! 

To add an element of excitement to our adventure we were just shuttled out of our nesting room. I was put into a wheel chair and we had a flippin fire drill! We are in building A and there was a "code red" in building B aka a fire. So we had to go to the main hallway and the nurses had to show me where the para slide was so I could slide safely from the 7th floor to the GROUND!

Then midst the fun of the fire drill there was a girl on the loose and police looking for her so they had to lock down the doors.

That lasted all of 25 minutes and now we are safely back in our little room, in our chairs, with our laptops, waiting for my team to get our of surgery.

Well here we are.

Well here we are. Just hanging out in the "nesting" room of the Fetal Care Center of Cincinnati Children's Hospital. We had our echo this morning at 8:30a EST. Laying on my back was KILLER. At 21 weeks and some change I didn't think it would be this bad already but I felt like I was going to pass out! I was short of breath hurt. I had to shift probably 5 times and finally succumb to laying on my side. The cardiologist didn't come in to see us this time. The tech just said, "you are free to go and your results will be sent up to your team."

So here we are, waiting again. My stomach is a bundle of nerves, and dunkin donuts (kind of a bust). I've been to the bathroom twice since we've been here. My belly always gets super upset during stressful events. I have to try my hardest not to fart during the ultrasounds when they are pushing all over the babies while my intestines and belly are yelling out loud.

I talked to Tim for a minute. He still hasn't gone to sleep since he shift started last night and is so beyond tired he is wired to go. Ethan talked to me on the phone. He is full of "ga ga ga ga" and "ma ma ma ma" noises today AND has been standing on his own while I've been gone! He had done it a few times before I left, just randomly popping up to stand in the middle of the floor, but I guess he's done it quite a bit the past two days. I feel like I'm missing everything and we've been gone literally like 48 hours.

I am exhausted and going to sit back here in this big comfy chair, close my eyes, and think about the consequences my stomach and behind will face if I eat this extra dunkin donut I got for the road.

Oh the joys of being pregnant.

Well last night after sharing another deliciously prepared hotel meal with my mom, (ready for fresh fruit and real food), we watched the Queens Jubilee on ABC, cranked the air in our room down to 64 and slept hard. I woke up at 4:45 central time and called Tim. He was working a graveyard and I missed him.  Just hearing from him made me feel 20 times better. I hope today brings good news for the babies and their hearts are perfect! I would love to be able to just go home to my family and have an amnioreduction. My only fear is having to come back in 2 weeks. I only have 4 more weeks and some change that I am a candidate for the surgery but we are hoping to completely avoid the surgery all together. I would hate to have to have a procedure done that would comprimise the babies if unneeded.

Well off to Dunkin Donuts to use a gift card my aunt gracious supplied us :) and then off to my test! Pray for good news everyone. I think with that babies on everyone's minds and in their prayers we could see something good today!

Picture of my lovey

My 9 month old lil man :) He is the reason this whole situation with the twins isn't so stressful. He always knows how to make me smile!

Well here we go again.

We showed up at Good Samaritain Hospital at 11:05a after driving in circles to try and find a place to park through all the crazy construction they have going on. We finally make it up though the maze of a hospital. I am completely out of breath by the time we make it up to the 8th floor. -JEESH-

....and then we waited 40 mins to be called back to my 11:00am appointment.

After the ultrasound which only lasted all of about 20 minutes because the babies were really cooperating with us! and the results are:

Cervix- long and closed! 4.02cm was the shortest measurement and the doctors said that was beyond excellent for having twins with twin to twin and all the exccess fluid! So bravo cervix! I wish you could give your friend, the placenta, some advice of how to function correctly for a change. Maybe have a sisterly conversation to jump start to into regularity. -in my dreams-

Anyways....

Gavin- Baby A, our recipient is measuring 21 weeks 3 days, I am 21 weeks 1 day so he is a little ahead of schedule! He is 16 ounces so we have made the 1 pound mark! :) He is looking great and plump. He was all stretched out. He is head down already on my right side. His little noggin was touching my cervix and his feet are stretched all the way out to my ribs. He has 12cm of amniotic fluid which is still in excess. He should only have around 4cm.

Enough about Gavin! Gabriel, Gabe- Baby B, our donor is measuring 20 weeks 1 day. So he is still a week behind which hasn't changed. He is only 12-13oz right now which is still good! He is breech on my left side. His little neck is kinked right now against my rib cage, hence all the darn pressure I feel against my lung! and his is in the fetal position with his knees half way tucked up and his little arms were free moving from his mouth, to suck his thumb, down to his umbilical cord. and the kicker is HE HAS FLUID IN HIS BLADDER, but no measurable about around his body, not that it isn't there. The pressure of Gavin's excess fluid is just applying pressure to his amniotic sac. He is just recycling there, my environmentally conscious fetus, is peeing, drinking it, and peeing and drinking it.

On both babies their heartrates and blood pressure in their bodies and umbilical cords are in normal range! Their weight discordance is still only about 15%

So we are still in stage 1.

The ultrasound technician in Springfield just didn't take the time to see if Gabe had emptied his bladder or if it just wasn't there. She just did a quick scan and called the doctor in and off we went. So this trip may not have been needed. We have an echocardiogram tomorrow morning at 8am and if their hearts are still stable and Gavin's leak hasn't progressed we are stable still. Dr. P, we saw today. He said that if we are stable we can just go back home or if it gets worse we will be candidates for the surgery. .

Either way no surgery or surgery I will be choosing to do another amnioreduction. To take some pressure off of Gavin's heart and to allow Gabe to not be so smooshed against my ribs and compressed in his sac. The last time we had a reduction his little amount of fluid nearly instantly doubled because of the lack of pressure!

So now we are back at the hotel, to sit and wait for another 18 hours for my next appointment.

So it all depends on how Gavin's little beating heart looks in the morning to the next step in our adventure.

Ohio, here we come!

I really need to take a moment to thank everyone who has made this trip to Cincinnati to help our lil men possible. Mary from the TTTS foundation for supplying me with an abundance of useful information on the disease and providing emotional support. Thank you for also putting us up in this wonderful hotel for the first two nights we are here before our surgery, it is beautiful and we would have never been able to afford to stay in a place so nice just a block away from the hospital. Thank you to the entire team at the Fetal Care Center of Childrens Hospital of Cincinnati for graciously donating a hotel room for one night and a gas card to assist in us making it home after the long drive here. And thank you so much to Erika and Emily from my baby board on Babycenter.com. Emily for her gracious donation and support. And Erika for allowing us to have access to a very good discount on a hotel room for the rest of our stay. We are on the list for the Ronald Mcdonald house but all the help has made is possible for us to make it here!

Last night was the worst night of this experience so far. Being away from my son and fiance, cold with the air blowing, sweating with it off, worrying about how the guys are doing at home, having to pee two or three times, sore belly, ahhhh!

We went to bed at 11:30p eastern and woke up at 7a. So I am way off my normal sleeping with our lil man. I am so tired and I'm not sure if I'm hungry or nervous but my belly is way upset. It could be all the hotel food we ate last night before bed. We each had a cup of vegetable chicken soup, shared a huge portion of shrimp spinach dip with tortilla chips, half a turkey club sandwich with these awesome seasoned fries. I myself at three pickle slices dipped in ranch, and we shared a piece of raspberry NY style cheesecake. Talk about a big ole meal! There was no one at the hotel last night at all, except the entire Cincinnati Bengels Team!, so the lady in the lounge here definitely hooked us on on dinner for a VERY good price! Just a perk of people asking "are you about ready to pop?!", "no I'm only just about 5 months, with twin boys," "oh my god! wow! congrats!" :) 

 We have an ultrasound in 3 hours so now we just have time to waste! Hopefully the boys at home wake up and call me before I see how these little men in my belly at cooking along. 

I felt a lot of movement yesterday in the car. Gabe, our donor, who is a stuck donor with no fluid now, kept sticking his little foot or knee straight out and you could see and feel it! like a 1 inch x 1.5 inch lump! My mother, who is my traveling partner on this whole experience thought it was completely disgusting. Gavin of course was doing back flips in his massive ocean of an amniotic sac. 

I haven't felt them yet this morning, so of course my worst fear is always that we lost one over night. It will be reassuring or devastating to see them on the screen moving or not moving. I am also hoping that Gavin's heart isn't enlarged and that his tricuspid regurg. hasn't gotten any worse either. Our hope with Gabriel is that we have a beating heart and kidney function. 

Well I am going to shower, get dressed, gorge myself on the leftovers that are in the hotel mini fridge, and try to stay calm until we see how these babies are doing.

4 months after Ethan, It's twins

So this whole adventure began on February 14, 2012, Valentines Day, when we were set up to have our first ultrasound. We were unsure of my last menstral period, because I was nursing our first, then 4 month old, Ethan. They started the ultrasound by measuring my uterus as well as the fallopian tubes, general OB stuff, I was so used to the whole idea of an ultrasound after just having had about a million with my first pregnancy.

My fiance Tim and I were so giddy and anxious to finally see this little bean and see how far along I actually was! I was shoked that I already felt so bloated and so very pregnant. I had horrible morning sickness and had a really hard time keeping anything down. Along with the extreme fatigure which I sort of pushed off on being a stay at home, full time nursing mother, to a bouncing, scooting, sitting alone, tank of a 4 month old son named Ethan.

Anyways back to the story....

We were sitting in the room and the ultrasound technician started looking at the screen with a very concentrated look. She stepped out of the room to consult with another technician, which instantly made us very nervous. The thoughts "is the baby ok?", "is it alive?", "is there a heartbeat or major defect?", just kept running through Tim, and my mind. Then the second tech stepped out and the other one said, "well I am going to have to tell you what I am looking at...." She took the wand and said "here is one baby..." and scanning to the left she said "and theres the other."

And then there were two.

Pictures of the Twins!


We had our son Ethan with us for this appointment because we couldn't find a babysitter. Our general OB's nurse came in and asked if she could take E from us for a bit to let the news set in. Just as she was walking out our Maternal Fetal Specialist, who we would soon become very close to, walked in.

He explained I was 6 weeks 1 day along. There were two yolk sacs and two little beating hearts in the same sac. We were going to have two little identical people in our lives soon.

It took us about 8 weeks to finally get settled into the fact we were going to have twins. Everything was sailing along super smoothly and we were having regular 4 week appointments with our general OB, Dr. H., and appointments every 2 weeks, Dr. A and Dr. T.

At our 18 week appointment everything changed. After our ultrasound we were given the devistating news that our twins, boucing baby identical BOYS, had a fatal disease called Twin to Twin Transfusion Syndrome, or TTTS. TTTS is when the boys have an unequal placenta blood share in which one baby has more fluid and the other almost none. As well as a list of complications for both the overage or fluid or the lack there of. We were suddenly faced with a 80-100%  of losing our boys without medical intervention.

Our MFM, Dr. A, came in and suggested that we immediatly pack our bags and find a way to Cincinnati, Ohio, to go to the Fetal Care Center at the Childrens Hospital of Cincinnati to meet with a group of surgens to discuss our options for treatment as well as a complete and correct diagnosis.

After our trip to Cincy, as the locals call it, we made a choice that since we were only at Stage 1 of 5 of the disease and that we only had a 1/3 chance of it progressing past stage 1, we would go home and have an amnioreduction to help level out the fluid levels and hopefully restore balance and take the pressure off of Gabriel, our donor. It would also take the pressure off of Gavin, our recipients, heart. This was at 19 weeks.

At 20 weeks we went in for our bimonthly ultrasound and found that Gabriel had no measurable fluid and no visable bladder. This was devistating. It means that we were in the third of mother/babies progress.

We just had to have identical twins, 1 in 250, chance of having twins with TTTS, 10%, chances of progressing past stage 1, 33%.

We were in this small tiny group of pregnancies with this small tiny chance of this disorder and the small chance it could progress. Could this get any worse?

We will have to go back to Cincinnati to have Selective Fetalscopic Laser Photocoagulation, or SFLP, and here we are. Our testing begins tomorrow. We have a three hour ultrasound, a fetal echocardiogram, and blood work tomorrow, and wednesday we have surgery.

Tomorrow we will have more information! So I guess I'll leave here tonight, a basket of nerves, 400 miles away from my fiance and son, sitting in a hotel room with my mother, trying to fall asleep, to hear hopefully the best bad news tomorrow that we can.

Two heartbeats, two babies moving, a sliver of hope.