TTTS Success Stories

Discussion in 'Pregnancy Help' started by TwinLove, Mar 16, 2009.

  1. TwinLove

    TwinLove Well-Known Member

    We would like to hear your success stories Momma's! This will be part of a sticky in the Expecting Forum in hopes that it will help out others going through similar situations.

    Thank you! [​IMG]
     
  2. tiff12080

    tiff12080 Well-Known Member

    I am thrilled to post this and hope I can help other parents though their difficult times. My boys were diagnosed at my 20 week ultrasound. My peri gave us some hope but also warned about the terrible possibilities. She sent us to the Children Hospital of Philadelphia to be evaluated for the laser procedure. We got in 2 days after the initial diagnosis. I spent the day there worrying, but also feeling reassured that they could help. We were happy to find out that they were in stage 1 and there was a good chance they would stay that way, but no promises. I would have to be checked twice a week for the remainder of the pregnancy. Every week I worried. Some days I would go and it would seem like the fluids were worse, but the donors bladder was always visible, which meant no surgery. At about 27 weeks I stopped work and was on a modified bed rest along with extra protein in the form of Boost and whey protein shakes. They really seemed to help. The condition steadily improved and at one point their fluid levels were almost equal. The growth discordance was not more than 20 %. At 34 weeks and 5 days my peri decided it was time. My boys were born at 5 lbs 4 ounces and 6 lbs. The recipient was redder and the donor pale, however there did not seem to be any lasting effects. I am blessed that my boys thrived and I know that my prayers were answered. They are doing great and I couldn't be happier. To all you dealing with this just know there is hope.
     
  3. am12607

    am12607 New Member

    When I was 18 weeks pregnant, my doctor noticed that my girls did not have equal amounts of fluid. It was not a big difference but it was enough to make him worry knowing that they were mono/di twins. He put me on modified bedrest. I quit my job, laid around on the couch, ate a lot of protein, and drank an enormous amount of water each day. I went back two weeks later and things were looking about the same. Both babies were growing at a normal rate and looked healthy, but one was a litter smaller and had a little less fluid. At 24 weeks things started to get bad. Baby B (the recipient) had WAY too much fluid (sorry.. I can't remember the amounts now) and looked like she had some fluid in her stomach. Baby A (the donor) had a shockingly low amount of fluid but still had a visible bladder. She was measuring about 3 weeks behind Baby A and was not as active as Baby B. They did an amnio withdraw the next day after this was discovered. They took so much fluid off of Baby B that I lost 4 lbs. instantly! I could really tell that there was a relief in the pressure also. I had started having a lot of discomfort in my upper abdomen and ribs area. The amnio withdraw helped! Things started looking better for both babies. The fluid disappeared from Baby B's stomach and Baby A started to increase her fluid levels. That lasted for a few weeks and then the absolute worst happened. We went in for our normal doctor visit hoping for another good report; however, we found that Baby A's heart was barely beating. Her heart rate was in the 40's!! The dr. told us the devastating news and said that we needed to go check in at labor and delivery immediately. He said that she probably would not be alive when we got to the hospital. Of course, we were shocked and devastated. I checked into the hospital. We called our family to tell them the news. They continued to monitor Baby B (who was still healthy) but didn't even monitor Baby A because they didn't want us to watch the heart monitor and "watch" her die. They did a couple of ultrasounds that night and found both babies heartrates. We signed some papers and made some very difficult decisions on what to do with our baby that would not live. The next day we found two heart rates. The doctor told us that she might live another hour, another day, or another week, but that she WOULD NOT live. We were given no hope at all. We were told that as soon as her heart stops, I would be taken in to c-section to deliver. They didn't want to go ahead and deliver b/c I was only 27 weeks, and it was better to save one and keep her in as long as possible than to risk losing both of them. Again, we were told that Baby A would not live inside or outside the womb. Anyway, I will try to get to the point.... I stayed in the hospital for 3 weeks waiting on my baby to die. She would not give up!! The nurses came in every 4 hours to check heartbeats and Baby A's heart rate fluctuated but it was always there. I had ultrasounds every few days and they saw that Baby A did not have enough fluid and also was not getting enough bloodflow. After a couple of weeks, the doctors were baffled. They started to say that if she actually survived, she would be severly handicapped due to the intermittent bloodflow. So, we began to prepare for that. Eventually, at 30 weeks, I was sent home from the hospital and had to go to the clinic every other day to have the heart rates monitored. At 31 weeks and 5 days, Baby A's heart rate was fluctuating again but I was far along enough now that everyone felt good about getting them out! I gave birth that day to two totally healthy, perfect little miracle babies. Our little fighter was 2lbs. 14 oz and our other blessing was 4lbs. 2oz. They are now perfectly healthy 15 month olds. They were slightly delayed (maybe a month) during their first year, but not any more than any other child born at 31 weeks. They have caught up now and are all over the place! Our biggest (and only!) health issue has been REFLUX, which is a pain, but I am not complaining! Our doctor was baffled by the situation and totally gives it up to God. He has no other explanation and I agree. We prayed and prayed for our babies. I hope our story can help someone that is going through a similar situation, because there is always hope!
     
  4. meganguttman

    meganguttman Well-Known Member

    At 19 weeks, I went in for my u/s to determine the sex of my baby...that's right I thought there was only one. My midwives had told me several times that there was "no way you're having multiples, you're too small". I was small, because Ryan (Baby B) was in the less than 3rd percentile, stuck to the uterine wall with no viable fluid pac and we were unable to find a bladder or determine the sex. The u/s tech works with Dr. Quintero (TTTS expert) and immediately called him. They determined that I had one placenta and was just short of qualifying for Twin to Twin Syndrome. They determined that without a doubt, Ryan was suffering from severe IUGR. I put myself on bedrest, drank milkshakes (boost made me want to vomit) and drank tons of water. A week later Ryan had some fluid and we could see his bladder (and his pee pee). The u/s tech and I screamed so loudly with joy that we got a stern talking to from the dr. next door. Over the next several weeks, we watched as Ryan's fluid grew and grew. We seemed to be out of the woods of TTTS. Around week 31 Ryan's fluid went over 9cm and Jake's went to 4. We wondered if they could be reversing the shared flow. I was given steroid shots at 32 weeks as they feared I would be having an emergency c section in the next few days. Ryan had plans of his own though. My water broke at 33 weeks 1 day and it was definitely Ryan's. There was triple the amount of water as Jake's (which broke as I was put into the hospital bed).

    After my csection (by choice) the placenta was examined. The report came back with stunning news. There were TWO placentas fused together. Jake's placenta was fine, but Ryan's was black and mostly dead. Turns out there was NO way we could have had TTTS. Both boys were really small. Ryan was 3lbs 3ozs and Jake was 3lbs 11ozs. Ryan was on CPAP (forced air) for a day and both boys suffered from jaundice for about 2 weeks. They were in the NICU for a month as grower/feeders and working on remembering to breathe while eating. Although the NICU was the hardest thing I had to endure, I felt much safer knowing they were being watched 24/7 instead of checking on them once a week via u/s. Whenever I go through something hard, I always have to find the silver lining. Knowing they were safe was mine. Both boys made it onto "normal" growth charts when they hit 6 months. Ryan has weighed about 2lbs more than Jake since they left the NICU. They've just barely qualified for Early Intervention twice and two weeks after the assessments they reach the milestone they "failed" during the test.
     
  5. threeboys

    threeboys Well-Known Member

    My TTTS survivors will be 4 this July. I was diagnosed at 17 weeks, 4 days, and immediately put on modified bedrest. I had one amniotic reduction to reduce the fluids for the recipient. My doctors saw me for ultrasounds at least once a week and most of the time twice a week. I drank 3 ensures/boost a day and ate a high protein diet. My donor weighed 4 lbs. 7 oz, and recipient was 6 lbs. 7 oz. They were born at 35 weeks, 5 days. They are both healthy little boys. Other than still having a difference in their weights, there is no evidence of TTTS.
    It was definitely the scariest time of my life. The TTTS Foundation provided knowledge, compassion, and understanding, and helped me get through the pregnancy. If you are going through TTTS, I highly recommend contacting Mary at the foundation. TTTSfoundation.org.
     
  6. michellelr

    michellelr New Member

    I am a fairly new registered user here, but have browsed many times for info. This is a great site with informative, helpful and supportive info. So, thank you to everyone here for sharing, it helps. I could go into a very detailed story here, but i will be as concise as i can. I found out we had twins at 12 weeks- big surprise to us. My TTTS events started around 16 weeks gestation when they noticed size differences in the two babies. They talked about TTTS and said the risk for developing it was around 20%. Even though i did not want to i started researching it and got really concerned. My husband told me not to look into it, but i wanted to inform myself- just in case i had to deal with it. I started having closer followup after my 20 week u/s and the size difference was more dramatic as were the fluid balances. At 20 weeks i started weekly followup and at 23/24 weeks had to have a amnioreduction due to a much larger amount of fluid around baby A ( Hannah). they drained 1.5 liters the first time and 1 liter the second time. Each time i had contractions after but was stable and went home. At 24 weeks i stopped working per the doctor request so i could make it through the pregnany as long as possible. We knew the amnioreducations were not going to solve the problem and i was TTTS stage 1/2. A consult was placed with Dr Quintero in Tampa and his staff immediately called me for an evaluation. Deciding to have the laser treatment- which i did qualify for because our small baby was suffering greatly with SIUGR and we had TTTS which Dr. Q said the two syndromes can often overlap and a true diagnosis could often be difficult when there is both. anyway, the laser therapy could treat both but the consent had soooo many risks, BUT if successful both babies could continue growing and no longer suffer inside of me (which was how if viewed it) as Baby B (Sarah) was anemic, less than 1 lb , had only intermittent flow going to her body and had a 2 cm fluid sack around her head only. My husband and i prayed alot and the next day we decided to have the procedure . As we viewed it the alternative was to continue with weekly amnioreductions and sarah possibly not making it, i could go into premature labor which is increased with the more procedures you have before deliver and i was only 25 weeks. We wanted to save our babieS. THe procedure took 2 hours which i was sedated, but awake to see what was happening. Fortunately it was a success and Dr Quintero is a remarkable physician. Weekly u/s after this procedure we saw the fluid shifts slowly even out, baby Sarah getting 100% blood flow and growing. Our babies were scheduled for a c section at 32 weeks, then 36.5 weeks as i continued to do well. THe c section was because one baby was breach. At 36 weeks ( and 3 days after my 40th birthday) to the day my water broke and Hannah Faith at 5 lbs 2 oz and Sarah Hope at 3 lb 12 oz were born and sarah only needed a 2 week icu stay for growth. hannah came home with me. THroughout the pregnany i kept myself informed as much as possible - fetalhope.org is a great site to learn more and hear other stories. It was a very difficult pregnancy emotionallly and i thought when it is over i hope i can help someone else if i can even if just listening or offering hope. thanks for letting me share.
     
  7. momof5

    momof5 Well-Known Member

    At 18 weeks when I found out I was having twins I was told my fluid levels were a little unequal and there was a very thin membrane between them so I would be watched for TTTS. At 28 weeks I had literally grown a ton in just 24 hours. I was measuring 43 weeks and my OB sent me for an ultrasound. I was admitted to the hospital on strict bedrest 2 hours later. I was diagnosed with severe TTTS. My Baby A was my "donor" baby and "stuck twin". She had no measurable amount of fluid and my Baby B (receipient)had way too much. I had 3 amniotic fluid drains and spent 4 weeks on hospital bedrest and 3 weeks on home bedrest. I gave birth vaginally at 35 weeks. My girls weighed 4 lbs 15 oz and 5 lbs 4 oz. It was a very scary pregnancy but everything turned out great!
     
  8. Brizzy_Twins

    Brizzy_Twins Well-Known Member

    I'm not a parent, but I am an Identical Twin who went through TTTS.. So i hope its okay that I post our story.

    We are 18 years old and we were born 16 weeks premature.. We also had TTTS - (Stage 2 Surivors). Although we were really premmie, we have made it. Our parents didnt know till birth that we had it.. and the doctors never explained to our parents that it only happens to Identical Twins sharing a placenta.. We were so early that our Mum only had one ultrasound while pregnant with us.. and thats when she found out she was having twins, thats all she knew. We didnt make it to a second Ultrasound. Our parents didnt know all the stats about Placentas, Sacs and such. We always believed we were Identical but it never occured to us to research about TTTS, until we came to this twin board. It is only until recently that we found out that we are Identical, after reading about TTTS. It has been a long and hard journey for both of us and our parents, but we wouldnt have it any other way. And because of TTTS my twin Alisha (was diagonsed with asmatha, as she was the reciever and was recieving too much blood.) And I was diagonised with Cerebral Palsy at 2 years old.. as I was the donor and wasnt recieving enough.. although its only mild.. i feel so lucky to be so blessed. We were born in May, and spent 5 months in Intensive Care and 1 month in special care till we got home. Once we were home we had Colic as well..

    After finding out all this, our story that we have been told by our parents makes so much sense. But it is weird.. and its crazy that we have only found out now that we are Identical.. I couldnt believe that the doctors didnt tell our parents. But I guess at the time all our parents cared about was getting us through so we survived.
     
    Last edited by a moderator: Feb 26, 2016
  9. talivstouwe

    talivstouwe Well-Known Member

    Hi! I just wanted to share our story here as well.

    At an ultrasound at 12 weeks, my OB did not detect a membrane, and although she was not concerned, I was. We made an appointment with a perinatologist in our area, and at the appointment I was 14 weeks pregnant. We found out that our twins were sweet little boys, they shared a placenta, and were suffering from TTTS. We had weekly appointments from there after, and had an echocardiogram as well. At 18 weeks our ultrasound showed that our twins were not doing well. Our recipient (Jacob) had an enlarged heart, and our donor (Boden) had very poor blood flow, nearly no fluid, and we had yet to see his bladder on ultrasound. We had to make a quick decision and flew to Cincinnati 2 days later. We went through a day of testing on Monday, and met with the team of doctors that afternoon. We decided to have laser ablation surgery the next day.

    They separate 13 blood vessels, and we did not know it at the time, but also did a microseptostomy. I was awake for the procedure and it was amazing to see my boys on the camera. We were also given photos taken by the camera attached to the laser. They also removed a liter of fluid from Jacob's sac.

    The surgery went very well, and we flew home 3 days later.

    At an ultrasound the following week our ultrasound tech and doctors were very confused because it appeared that Boden had suddenly gotten bigger than Jacob. After some searching they found that the membrane had torn and was floating freely, only attached at one side. The boys' cords were already tangled.

    I was admitted to the hospital at 24 weeks for monitoring, and we met with neonatologists several times. Between our 2 MFM docs and the neos, we decided to deliver at 32 weeks to try to prevent a cord accident from occurring after that point.

    I was monitored three times each day for one hour. This was decided on by both my doctors and me. Boden (Baby B) had an occasional brady episode, but only a few times.

    We had an ultrasound each day, usually in the morning. I had steroid shots when I was admitted at 24 weeks. The boys did very well the whole time, and it was pretty amazing to see them daily on the ultrasound. I had passes out of the hospital 3 times during the 8 weeks I was there.

    The hardest part for me was that I had a 2.5 year old daughter at home - which was almost an hour away. I got to see her about once a week. My husband was working full time, and my mom and MIL took turns caring for her while he worked weekends. I was pretty lonely - but - thankfully my sister worked in the city I was inpatient in. She did my laundry, kept me company, and brought me magazines, books, movies and other goodies.

    I delivered Jacob and Boden via c-section at 31 weeks, 6 days. Prior to delivery I had been having contractions for about 4 weeks, taking Terbutaline as well as 2 pills to keep them under control.

    Jacob was 4 pounds 2 ounces and Boden was 3 pounds 8 ounces. I developed a hematoma after my c-section and was very ill, requiring a blood transfusion, and although I got to see the boys very briefly on my way to the birth center (where they put the new moms) I didn't get to see them again until the next night because I was so sick.

    The boys did very well in the ICN. Our NICU is pretty amazing - it is state of the art, which is incredible for our small area. We had our own twin suite and could stay there 24/7 if we wanted. Jacob was discharged after 5 weeks 6 days, and Boden after 6 weeks 4 days. We were very lucky that they came home without apnea monitors.

    They are both doing amazing today, and are the happiest little guys I could have imagined. They are so fun, so well-mannered.

    I could write for hours on this subject, but I'm keeping it "short." ;) I do love to share my story and info, though - so if you want more (numbers - we kept detailed records of each ultrasound!) I have them and you can pm me. :)
     
  10. WaterGuzzler

    WaterGuzzler Well-Known Member

    I'm so excited to share my success story finally! I spent a good amount of time here while I was pregnant after finding a few stories on here about TTTS while googling. I hope that others will find this and give themselves the same hope that I tried to muster up.

    I found out at 9 weeks that I was pregnant with identical twins. They called me in for an ultrasound due to my "unusually high" hcg levels to rule out a molar pregnancy. Lo and behold, I was having twins. I am a nursing student and at that time I was doing my OB/pedoatrics rotation so I knew of the complications that could arise. My first concern was that I was having momo twins because they didn't see a dividing membrane. Everyone told me not to worry about that as it is so rare. I told them that even if that wasn't the case, there was still the risk of TTTS. They blew it off. I had heard about the window to best see a membrane so I called my OB's office to schedule another u/s. Evidently they were going to call me anyway to get me in sooner. YAY, we were on the same page!

    At just over 10 wks I went in and there was an obvious membrane separating them. When I look at the photo now I can see that there is a very slight difference in the size of the sacs but it wasn't concerning at the time. We scheduled another u/s for Christmas Eve when I was 15w5d. I was excited at the prospect of finding out the gender of the twins and being able to tell everyone that night at the family Christmas party. Little did we know that we would be sharing daunting news instead. Our u/s tech used to work for Dr. Quintero so was very familiar with TTTS. When she told us that it was brewing we were devastated.

    They were now referring me to a high risk practice with Dr. Q. I couldn't just sit and wait so I emailed him that night. He emailed me back (with a personal email!) Christmas morning and said he'd get in touch with me. We went in the following week thinking we may be having surgery the next day but because of the strict criteria that had to be met we didn't. Our donor's fluid was not low enough to qualify. We were literally within mms! We were referred to a perinatal cardiologist as well due to our recipient's heart being enlarged and not functioning optimally.

    We were monitored weekly by both Dr. Q and the cardiologist. Meanwhile we were watching Lia's heart progressively get worse and Eve's fluid decline. She was officially "stuck" 3 weeks later so we were scheduled for laser therapy. These were 3 of the most excruciating weeks we've ever endured.

    At 18wks3d we had the surgery. We were Stage III. We didn't know how the girls would fare until our u/s 24 hours later. It was amazing to see them in utero with the camera. We didn't see much of Eve because she was stuck facing my placenta, but still amazing nonetheless.

    After the surgery we were still monitored weekly by the cardiologist and Dr. Q. We watched Lia's (recipient) heart get worse for a little bit, and even Eve was not behaving properly. Their size discrepancy had always been about 25%, then it improved to 19%, and then it started to become wider again. Now Eve was suffering from IUGR which we found out was unrelated to the TTTS but related to her velamentous cord insertion instead. I was admitted to L&D for monitoring due to a change in Eve's dopplers. I spent 4 days there while having daily dopplers until they decided it was time to deliver them via c-section. Eve was showing signs of hypoxia (anemia, late decels) and was not growing appropriately.

    At 29w6d I delivered my girls. It was very sad for me. I did not want them out at all but I couldn't argue because they were obviously not doing well in utero anymore. I fought for as long as I could for them to keep them in but now it was out of my hands. I had to trust the doctors and God.

    Lia came out crying, weighing 3#2oz. Eve came out silent but I finally heard the weakest little sound that was supposedly her cry a few minutes (I'm sure it was less--it just seemed like forever!) later. She weighed 1#15oz. I didn't get to see them until later that night.

    And so the NICU journey begins...

    They were both on CPAP for 9 days, after Lia being ventilated only for the first day. At 9 days old Eve was diagnosed with malrotation of the bowel unrelated to TTTS. 2 days later Lia was diagnosed with the same thing. Both had surgery to correct it. The surgeon said there is only one other reported case of identical twins having a malrotation. Leave it to our girls :) They had typical feeding issues but spent most of their time only as growers/feeders. They were discharged at 51 and 54 days old when I would have been about 37 1/2 wks pregnant.

    Lia does have brain damage (specifically PVLM--periventricular leukomalacia, meaning death of the white matter) that resulted from the TTTS, as well as congenital heart disease. She has elevated BP because of her heart, but nothing that is too concerning. We will not know how the brain damage is affecting her until she grows but we are hopeful. She seems to be progressing nicely now at 4 months old.

    Eve was given a clean bill of health. She is still very small due to her SIUGR but has no issues related to it outside of her size. At her 3 month weight check she weighed 6#8oz.

    Neither had brain bleeds or any of the typical preemie problems other than reflux. We were very lucky and blessed. They are most certailny our miracle babies (and definitely our LAST babies!).

    I hope someone can find this who needs the encouragement. I know it helped me tremendously to read others' stories. I think the best advice would be to be an advocate for your babies. There were times when we struggled with some of the physicians at the high risk clinic. They didn't understand the magnitude of the situation, even though they worked with Dr. Q. Thankfully we had Dr. Quintero and his u/s techs on our side. And if it hadn't been for the weekly monitoring things likely would have ended up tragically due to how quickly things started progressing in our particular case.
     
  11. bia2

    bia2 Member

  12. bia2

    bia2 Member


    My story is almost exactly like yours. I was diagnosed at 24 weeks with stage 1 TTTS. I was HUGES at that time and having a lot of contraction. I was committed to the hospital for observation and got the steroid shots because my doctors didn´t really know how things would turn out. I had to stop working at that time and was scanned first every other day and then 3 days apart etc... My donors fluid never went under 2,6 cm and we were told that if it got to the point that it went under 2 cm we would do the laser surgery. His bladder was always visible. But my recipient went up to 12 cm of fluid! I was home from week 25 and was on medications to stop the contractions and that helped a bit but not much (I still was having a lot of them). I think on week 29 their fluid levels were beginning to get better and at week 32 their fluids were almost equal :) They were born at 35 weeks and 3 days. There was a little size difference, recipient was 6.5 lbs and our donor 5.1 lbs. They never needed to go to NICU and their breathing was never a problem. Very healthy little beautiful boys:)

    By the time I was diagnosed (24 week) my doctor warned me that most likely that the boys would be born very premature and that we would probably never make it further than 32 weeks. I remember thinking " I´m going to prove her wrong". And I did :)

    I have never in my life gone through such a difficult time! I still don´t know how I got through it. To have to worry about your babies every second of every day is so hard and I don´t know if I ever want to go through another pregnancy (this was my first one). But I also know that compared to other people who have had TTTS I am very lucky to have my sons.
    Every day I am so thankful for my perfect, healthy little beautiful boys :)

    Here are pictures of them 6 days old:
    http://photos-h.ak.fbcdn.net/photos-ak-snc1/v2093/205/84/1181525146/n1181525146_30220907_9591.jpg

    5 months :)
    http://s3.frontur.com/img/61530/20091219005843_0.jpg

    And here they are today:
    http://barnaland.is/album/img/61530/20100109200052_0.jpg?d=63398664158200000
     
  13. BRMommy

    BRMommy Well-Known Member

    My boys are 5 years old and are healthy, active, happy kids with no developmental issues. I am very grateful to Dr. Quintero in Florida for saving my babies.

    I was diagnosed with TTTS at 15 weeks. My Baby B was "stuck" and barely had any fluid while Baby A had way too much fluid. We contacted TTTS Foundation immediately, and they sent us so much helpful information by Fed Ex Next Day Delivery. After frantically doing research on the internet and going through all the materials from TTTS, we decided that we had to go to Dr. Quintero to save our babies. At the time of the diagnosis, we lived in California and it would have been closer (and cheaper) to get the surgery done at UC San Francisco. But we wanted to go to the best doctor possible for our babies and decided to fly out to Florida. I had surgery at 17 weeks. From the date of the surgery, I was on strict bedrest for the rest of the pregnancy. It was really hard being on bedrest for nearly 5 months, but all the effort paid off because I made it to 36 weeks and delivered by scheduled C-Section.

    My boys were 6lbs 5oz (Baby A) and 5lbs 6oz (Baby B). They were born perfectly healthy and did not need any NICU stay. They have been hitting all the milestones at the normal age, they have not had any developmental delays, and they are just the smartest, cutest, most good-natured kids you'll ever meet!
     
  14. njobe

    njobe Well-Known Member

    Glad to hear all of the good stories! I hope mine sends some hope to others as well. I got an u/s at week 12 and my OB could not find a membrane, so she referred me to an MFM for a better scan. At almost 16 weeks, we found the membrane - what a relief that was! Then at my 19 week u/s, my MFM diagnosed me with Stage 2 TTTS. Recipient (Jaxon) had 10cm of fluid, while Donor (Noah) had only 2. Noah's bladder was also almost non-existent and Jaxon's heart was showing to be a tiny bit enlarged. He called in a favor to the children's hospital in Houston and they fit me into their schedule the next morning for further evaluation/possible surgery. Of course, we hauled it to Houston that night, but it was worth it in the end. I was on the operating table having the laser ablation surgery the day after my consultation in houston. We almost lost Noah during the surgery - his heart was almost stopped - but after the last vessel was cut, his little heart starting beating normally.

    On the way home from Houston 2 days later, I began leaking fluid, went to the hospital here in Dallas and was put on bedrest for the rest of the pregnancy. They wouldn't keep me in the hospital since I was only 19 weeks. To everyone's surprise, I made it to 23 weeks and my MFM said that he was willing to rescusitate the babies at that point even though everyone else said viability is 24 weeks. So I moved into the hospital that day. Some of the same nurses and techs from before remembered me and said they were surprised but so happy I made it that far. Much to everyone's surprise, our boys held out until 26w6d, when I started bleeding and they had to do an emergency c-section.

    My boys spent about 3 months in NICU/Special Care, and we had some problems during that time, but to look at them now you would never know they weighed only a little over 2 lbs when they were born. they are 10 months old (7 adjusted) and weigh 18 pounds 1 ounce each - yes exactly the same weight! Jaxon has some issues, but we thank GOD every day for both of their lives. We had a very happy ending, or beginning, however you want to look at it.
     
  15. Idttwinboys22310

    Idttwinboys22310 Active Member

    I have been waiting what seems like forever to write this! My husband & I wanted to have another baby and after 3 months of trying I was pregnant! Went to the doctor at 7 weeks to make sure then had a follow up at 9 weeks. I took my husband with me for this one & my obgyn said he would try to find a heartbeat....which I know is early but he couldn't. So I told him how I would worry unless we found it, he said piece of mind is everything to pregnant women & went ahead to get me a real quick unofficial ultrasound. He said it would all of 2 seconds to let me see the heartbeat well the ultrasound tech took about 10 minutes on my belly & then said she had to step out. I knew something was wrong.....the doc came back in & said it's twins! Then they said that they where fraternal b/c of 2 sacs. I really wanted a boy & a girl. So we scheduled another appt. for week 19 to determine the sexes. So we go in and we find out it's 2 boys! Then my doc calls me back into the room & says he was a tiny bit concerned that he wanted me to have a special ultrasound this week. He said he wanted to make sure what type of twins we where having. So down to Christ Hospital we go 2 days later. After a 3 hour ultrasound another doc came in & started talking about TTTS. He referred me to Children's Hospital the very next week. Then an eight hour mess of tests began.(Found out it was identicals) And we met with a whole room full of doctors who gave us the option on what we wanted to do. They said if we did nothing then our babies would have a 5% chance to even make it in the world. They do things a little differently here in Cincinnati (i didn't know how lucky i was to live 25 minutes from the hospital until all of this) the sizes of my babies werent off, the fluids where fine only a 3 to 6, but their hearts where showing signs. Baby B's heart walls where already starting to thicken which put me at a level 3c with my babies. I was sooo scared. Sitting there bawling my eyes out in front of a panal of docs. Feeling stripped of every ounce of happiness pregnancy brings. I felt completely disconnected from the whole pregnancy. I cried for days we chose to do the surgery that was offered the next week. The docs said they didn't know how fast this disease worked so we should opt the move quickly. I remember being told going into surgery that we could come out with no babies. That we had a 70% chance of having one baby live & a 60% chance of having both babies. I didn't want to bond with these kids, didn't want to have a baby shower, we actully didn't even name our kids until 3 weeks before they where born. But after the surgery things went well. 3 days after surgery my babies hearts had shown 15% better flow. We had 5 connected vessels. And then all the other appts. began every thrusday my husband & I where at the hospital for 5 hours getting echo's & ultrasounds & meeting with our surgery doc's & seeing the MFM docs. First they said make it to week 24, then week 28, then week 32 - I should also mention I was on procardia the entire time to help my babies blood flow - it also has been shown to stop contractions. We had absolutely no scares after surgery, The whole pregnancy did a complete 180. It was one of the darkest times of my life wondering every day if i would go into labor, if one of the babies would pass, about nicu, everything i'm sure we have all thought about with this disease. But my babies made it to week 36! Not one bout of preterm labor, no contractions, no nothing! Coltin Pierce came first weighing in at 5lbs 15oz & Trentin Isaac 5lbs 4oz came a minute later. No nicu, no oxygen, no anything they both came directly back to the room with me & stayed there. They are perfect in every way. TTTS is so scary but my babies made it & there is hope lots of it!

    Feel free to contact me if you just need to talk & are going through this hell.
     
  16. cowgirl

    cowgirl Well-Known Member

    When I was 5 weeks pregnant I found out through a home pregnacy test. I was suppose to have the radioactive iodine test done for my thyroid, but right before they performed the test I begin to worry because me an dh had had unprotected sex one time. At that point my dd was 6 months old. I canceled the appointment and instead did a test and yes I was pregnant. We were in shock. Then at seven weeks I started to bleed so I thought I was miscarrying. The doctor sent me for an ultrasound and that is when we found out the pregnacy was twins. At sixteen weeks I went for my ultrasound and requested to have them also measure my cervix because I was convinced I felt to much pressure. They measured me at 36mm and said I was fine and the babies were fine but they had a very difficult time ever finding the membrane seperating the boys. They also saw my placenta was attached to the front of my uterus and that there was only one but fluid levels were like 6 and 6. The peri told me she wanted me to come back in a week not because she saw anything wrong but just to satisfy her mind. The next week baby A had a fluid level of 8 and baby b had a fluid level of 2.5 and we knew we were heading down the TTTS road. We contacted the TTTS foundation , I talked to others here who had lived through it, I talked to Dr. Quintero's nurse in Florida and Dr DeLia from Milwaukee called and talked to me. He encouraged me to drink 3 high protein boost every day and told me his reasearch showed moms with heavy morning sickness in the beginning (me) and pregnacy in less than a year from the last one (me) were protein anemic and that contributed to the fluid levels. I started the shakes and the next week things were headed back in the right direction. Within 3 weeks there was almost no differnce in their fluid levels. At nineteen weeks however my cervix all but disappeared and so I had a cerclage and was put on bedrest. We experienced preterm labor and I also went through a mini stroke that for several months made one eye crossed and I had to wear a patch on it, but the boys were ok.
    At 35 weeks my body begin to shut down and the doctors said I had to deliver right then. The boys came into the world at 6.9 and 5.9 and you could tell baby A had been getting the blunt of the food because he was so red and baby B was very yellow. The doctors also said Baby B's umbilical cord was a tiny shriviled mess and that he was truely a miracle. I feel I owe my boys to Dr DeLia and his advise. They both survived and came early with good weights. We stayed in the NICU for a week and got to go home and the main issue the boys have is their asthma. Other than that they are thriving.
    I am glad to share my story and want all moms who face this to never give up because there is always hope.

    Mary
     
  17. marikaclare

    marikaclare Well-Known Member

    Hello all -
    Our story was a little different as we had acute onset TTTS. I had been put on bed rest for cervical funneling at 20 weeks, almost got a cerclage but my cervix cooperated and we dodged that one. I was monitored closely with weekly ultrasounds and I had received steroid shots because I kept having contractions (I even had the home monitoring unit to check my contractions twice a day). At 27 weeks, I had my weekly ultrasound on a Weds and everything looked great - the boys were measuring the exact same size 2 lbs 1 oz and their fluid was equal. The next night I had way too many contractions, spoke with the nurse and then the dr, drank a ton of water and re-checked my contractions which had slowed down. The next morning, I went to see my MFM and on ultrasound the boys had TTTS with a significant fluid discrepancy. I was admitted to the hospital for closer monitoring and put on magnesium sulfate to stop my labor. My contractions stopped but Zachary (our stuck twin) was not looking good on ultrasound, so they decided we needed to do an amnioreduction. We consented to the procedure and five minutes later my water broke. The decision was that the boys needed to come out and so they arrived very early at 27 weeks 5 days - Lucas was 2 lbs 1 oz and Zachary was 1 lb 11 ozs. We had a long stay in the NICU but it was largely uneventful - Zack struggled a bit with breathing (on a vent for 4 days, CPAP for weeks and came home on oxygen) and Luke had an easier time with breathing. The boys are great today...we did early intervention and they have caught up on everything before their 2nd birthday. My husband has even done "Your Baby Can Read" with them and they can sight read over 50 words - my fears about their brains have disappeared:) Good luck to anyone going through this!
     
  18. drainl

    drainl New Member

    After an abnormal Quad screening, an ultrasound at 18w showed mono/di twins! In the frequent ultrasounds for the rest of the pregnancy, the girls were always very close in weight, so we had no reason to be concerned. My primary hospital and high risk hospital both wanted me to deliver in my 36th week anyway. My last US was 3 days before delivery and the girls were estimated to be exactly the same. On 35w6d my water broke and 12 hours later I delivered them vaginally. Baby A was 4lb15oz (and pale) and Baby B was 5lb9oz and bright red! So they had a very mild case of TTTS and never needed any special treatment because of it. I am grateful my water broke when it did and the girls knew it was the right time. It was also very easy to tell them apart for a few weeks until their color evened out!
     
  19. NicoleLea

    NicoleLea Well-Known Member

    I'm so happy to be able to share the story of my girls.

    At around 21 weeks my girls were diagnosed with stage 2 TTTS at my first visit with perinatal specialists. I didn't know what it was and was shocked when the doctor explained it to us. Twin B was measuring 0 for her amniotic fluid and I don't remember what twin A was, but it was a lot. Both were much smaller than they should have been and he was very concerned about it. The doctor gave us a 50% chance that they both would survive and we were devastated. He told us about our options as far as fluid reductions or placental surgery for treatment. We needed time to think but went through with the fluid reduction at that first visit. It was so traumatic because of everything happening so suddenly and I was so worried about my baby girls!!! After that I went in every week for ultrasounds and to be monitored. We decided on the laser surgery and were all set to travel. The nurses contacted us to get all of our information together ASAP. Well, since I had declined a blood transfusion, the doctor backed out and refused to operate on me. I was so upset but thankfully there was still the option of fluid reductions. I had that done one or 2 more times and then the girls started to grow more and the fluid started normalizing. We were relieved but cautious, knowing how easily things could turn bad. The doctors goal was to get me to 34 weeks and deliver then.

    At about 28 weeks, they noticed a "dilated bowel" in twin A and said they would keep an eye on it. The following week things turned very bad. Baby A had developed hydrops (fluid surrounding all her internal organs) and they didn't know why, only that it was very serious. I was admitted to the hospital, just waiting for the day they would deliver. We knew they would be preemies, just not by how much. They told me I may be waiting a week or a month, but they wanted to keep the girls inside as long as possible to give them the best chance once they were born. But since twin A was so sick, it was a very fine line. Wait too long, and she would die.

    I only sat in the hospital for a week and had ultrasounds every day. By 30 weeks the doctor came in and said it looked very bad and that he needed to take them that day. I was visited by a ton of specialists, neonatologists, etc. who painted a pretty bleak picture and I was so nervous my baby wouldn't make it. I went in for an emergency c-section that morning and cried the whole time. My husband was there holding my hand.

    When they pulled out baby A she didn't make a sound. They started working on her immediately, and then came baby B. She cried and it was the tiniest cry I ever heard. They started working on her too. The girls each weighed a little over 2 lbs. when they were born. Then they showed me the girls and whisked them away to the NICU.

    I sat in my hospital room after the surgery, just waiting for news. They had to do tests on baby A to find out what was wrong with her and what they could do about it. Hours went by and we got the news that they had figured it out. Her small intestine had died and burst open, filling her body with fluid. They would need to do surgery right away. I again was so afraid...this was major delicate surgery on a premature, 2 lb. infant in her first day of life. We had no idea what would happen or if she'd make it through.

    Many hours later we got a call that things went well and she was doing alright. It was such a weight off my shoulders. They removed the portion of dead intestine and gave her a colostomy. They said they would put the intestine back together in a few months when she was bigger and stronger.

    It was a long, hard road in the NICU after that. Baby B was mostly alright, except for her prematurity, and grew and improved. After 2 months she was able to come home. At that time, they did the 2nd surgery on baby A to fix the intestine. We thought it would be the end of things, but it wasn't. Her health declined, she failed to grow or gain weight, had multiple infections, etc. Eventually they diagnosed her with "failure to thrive". We visited her every day and did all we could at the time and just prayed she would get better and come home. After almost 5 months in the NICU and an emotional rollercoaster we told the doctors we wanted her to come home. She was just sitting in her bed all day by then, getting fed and taking medicine. They knew being at home would be a better environment for her and agreed to release her. The day she came home was one of the happiest days of my life. At almost 5 months old she only weighed about 5 lbs.

    It was still a long road to recovery after that...she saw many specialists, had to be on medications, special food, etc. but she did better once she came home and was with us and her sister. We were grateful for all the doctors had done but she needed more than medicine, she needed love.

    After about a year she was doing much better and though she did still have some issues with digestion she was growing and looked very healthy. She had no intellectual problems or anything. She exceeded our expectations by far.

    Now the girls are 4 years old and they are both doing well. The minor digestion issues have continued and we were told they probably would her entire life. But it doesn't hold her back at all. They are both healthy, active, and smart as can be. They are the best things that have ever happened to me. I always marvel at how hard of a start they had in life, yet how they overcame the worst odds.
     
Loading...
Similar Threads Forum Date
Having anxiety about TTTS. Pregnancy Help Sep 11, 2013
New Here -- Pregnant with Twins Who Have TTTS Pregnancy Help May 25, 2013
TTTS or normal tight abdomen? Pregnancy Help Jun 26, 2012
Just diagnosed with TTTS Pregnancy Help Oct 3, 2011
Question about TTTS for friend Pregnancy Help May 2, 2011

Share This Page