Twin Twin – We Win… and hoping more will too.

Our TTTS Story

This is our story, specifically as we told it through my CaringBridge blog.
Yesterday we went in for a visit with a Maternal Fetal Medicine doctor as recommended by my Obstetrician, just for a general check-up on the twins.After the ultrasound, they diagnosed us with Stage 3 Twin to Twin Transfusion Syndrome.  Read more about the diagnosis here:
Basically what is happening is there is unequal share of the blood flow in the babies.  Baby B is the donor, or smaller baby, and Baby A is the recipient and bigger baby.  Baby B is measuring a week behind in weight and is low on his amniotic fluid, while big brother is doing somersaults in his nice roomy sac 🙂
We were sent to a Pediatric Cardiologist who did an ultrasound of their hearts to determine how bad they were suffering.  Baby B has poor diastolic blood flow in his cord, but his heart looks good.  Baby A is receiving too much blood, so his heart is working extra hard to pump all he blood through it.  His heart is enlarged, but other than that in good shape.  I am on blood pressure medication to lower my normal blood pressure to help lower Baby A’s, so he is not working so hard.We were told we would need to travel to Children’s Hospital in Cincinnati for treatment immediately.  The treatment would be done through my abdomen with a camera and a laser.  They will identify which blood vessels are giving the bigger baby the excess blood.  They will cauterize the major blood vessels to him, so he’s not getting too much.  Hopefully the placenta will re-distribute the blood more equally.  They will also cut the connecting blood vessels that go from one baby to the other.  This will prevent losing both babies should one die.
I will post more updates when I receive them.  Thank you for all the thoughts and prayers.
Posted by Mommy at 9:22 AM
Forgot to mention…  without treatment, there is a 90% chance we would lose both babies.  With the treatment, there is a 60% chance they can save both babies and a 90% chance at least one will survive.
Posted by Mommy at 9:45 AM
Our flight out is at 8pm tonight.  Tomorrow’s schedule:7:15am – MRI
10am – Ultrasound at the Fetal Care Center
1pm – ECHO (ultrasound on their hearts and their functioning, and cord blood flow)
2:30p – Meeting with Social Services
3p – History and Physical at the Fetal Care Center
4p – Team meeting with all the doctors and nurses, including Dr. Crombleholme, who will be preforming the procedure.  This is when they will decide the action plan.  We hope they will want to do the surgery right away or Saturday morning.  Most likely Monday morning though.
Posted by Mommy at 4:29 PM
Our flight landed about midnight,and it was pouring!  We got in the rental car about 12:30.   Then we decided to take the scenic route around Lousiville, KY by going the wrong way on the loop!  Then about 30 miles in to our 100 mile trip, we were forced to exit and the highway was shut down, from what we could tell from the traffic map on my phone…  We stopped at a gas station, where they were no help…  “take that road to the 4-way, go left, then go over the bridge and get to that 4-way and go right.”  We decided to make our own route.  We wrote down the highway numbers and which way to turn, and lucklily we did that, because shortly down the way on the country road, my phone lost 3G coverage.  Thank you AT&T.  We turned off a different way then all the truckers, and it actually ended up being a short cut!  We finally arrived to the hotel at 2:45am.  Then we proceeded to shower and get ready for bed, and I blew up the hair dryer.  I fell asleep about 3:45 and Daddy fell asleep around 4:30.  The alarm went off at 6:30.  BOOOOO
Posted by Mommy at 11:43 AM
 Morning Testing
We woke up to a nice snowfall.  Then my phone took us the scenic route through downtown instead of staying on the highways, so we were late for the check-in time.They still got me back at 8 for my MRI.  I layed on my left side for a whole hour!  That last 20 minutes was brutal.  I had to hold my breath 4 times.  Thought I was going to pass out with the combination of sleep head syndrome.  I guess the MRI takes so long because the tech has to catch the boys when they are still for shots.  When I was done I asked her if they were good, she replied, “Uh, ya, not so much.”I had another ultrasound of the boys with the Fetal Care Center, the people who will be preforming the surgery.  They were squirmy so she had a hard time getting the readings, overall I’d guess it took an hour and 15 mins.  They were hugging each other, slapping each other, and both posing in the same position at one time with their arms up over their heads.  We didn’t get much of a report on her findings; I guess we get that from the doctor.  Since Wednesday, they both appear to have grown an ounce, up to 7 & 9 ounces.  That could always be human error on the measurments.We are eating lunch now and off to the ECHO.  After that we will get to meet with the doctors to get imaging results and an action plan.  Will update later!
Posted by Mommy at 11:49 AM
We feel so much better after the consult with the doctor.  He informed us that his success rate is 75% for BOTH babies, 93% for 1 baby.  Dr. Crombleholme says he believes his success rate is higher due to the fact that they triple check the arteries, and both doctors agree which ones to laser, twice.  We are so relieved that what we thought our chances were was 60% for both has increased.   Surgery is scheduled for Monday morning. The MRI results showed how much excess fluid is floating around in there, which is why those of you who have seen me recently have noticed me growing quickly, and also the cause of my pain.  1-2 Liters of that fluid will be drained off during the procedure.  The MRI also revealed that the donor baby (little guy) has some sinus abnormalities, but reversible and typical of a TTTS donor.  The main concern and reason for doing the MRI is to check for brain abnormalities, and both’s brains look totally normal.The ultrasound revealed the probable cause of the TTTS.  Little guy’s cord is not attached directly to the placenta, but to the membrane.  The veins finger out to the placenta, but are not fully protected, causing strain on them.  Imagine a solid rope attaching to the placenta, and a frayed rope attaching off to the side of the placenta; the connection is there, it’s just not ideal because the cord is not protected.The ECHO cardiogram revealed that the recipient baby (big boy) has more strain on his heart, and his “score” has gone up, which is not good.  They were able to get a diastolic flow on the little guy which they could not find on Wednesday night.  Needless to say, the doctor is not worried about the big babies heart until Monday.The surgery has 3 parts.  First, the lasering of the major arteries going to the big baby and separating the connection between the two babies.  Then, they will laser a few holes 6/10 of a millimeter in the membrane between them, allowing them to share the fluid without being at risk for the babies accidentally tearing it.  Then, they will drain off that excess fluid.  The fluid levels will be totally stabilized within 24 hours, and my baby bump will go down.  The scope they stick in my abdomen is about 3mm wide.  They will put in an internal stitch, and do the super glue stuff on the outside suture so I can shower, and they can run ultrasound gel on my stomach without a problem.  The surgery should take about 2 hours.  The one thing we are unsure about is my anesthesia.  Because of my back issues, they say the anesthesiologist may feel uncomfortable about doing an epidural because of the lower back issue I had before getting pregnant.  If that is the case, they will do general anesthesia.  One of the nurses overheard me say I was told to get an MRI, but then changed my mind after finding out I was pregnant, so since I had the MRI this morning, she called down asking them to check my back so we may get an answer on that too!I will go in Monday morning at 5:30 for pre-op, then the surgery will start at 7:30.  Daddy won’t get to be in the OR 😦
They say we will be able to go home Friday night if all checks out.  After the surgery, I will be on bed rest until delivery.  He said I would be able to shower, get something to eat, and go to my doctor appointments.  He said no errands, no laundry, at this point I shouted, “YES!”  Everyone in the room laughed.
We thank all of you for your continued prayers, and for sending our story to prayer lists.  They are greatly appreciated and will be most needed on Monday morning.  I would like to end by saying every time I read the guestbook comments, I tear up.  I have never felt so much love and support in my life!
Posted by Mommy at 5:40 PM
Hey everyone,
Our spirits were definitely lifted yesterday after speaking to the medical team that will be performing the procedures on Monday.  It’s easier to stay positive knowing that we are in such good hands and after discussing the updated percentages of 75% and 93%…  It’s absolutely amazing what these doctors can do.  Mommy has been a real trooper so far; she’s in a lot of pain, not sleeping much and still remains up-beat and easy going.  I’ve got the easy job of being her chauffer, providing what she needs and just being here to support her… and watching the movie “Black Sheep” while she naps… 🙂
We still have a long way to go though, so keep those positive vibes coming our way.
Posted by Daddy at 11:00 AM
Only 1 day away now!! I am not sleeping good because I wake up so uncomfortable. I hope it’s the hotel bed and not my belly causing it. Today I think we are going to take it easy; I guess I did a little too much because I was in pain in the evening.We left the hotel around 11:30 and went to Skyline Chili so Daddy could have some Cincinnati chili! Well, I had some too but it was not my first time having it. Then we drove about 10 miles south to Babies R Us in Kentucky. The biggest thing I was concerned about being on bedrest was not being able to go to Babies R Us to do my registry! Luckily they had a wheelchair available for us to use. We were there for a good 3 hours. I had a lot of fun even though we had to wait to go down aisles and Daddy would push me past something I was looking at! He thought it was funny being in total control of me 🙂 Afterwards, at about 4:30 we went to have dinner. We first walked in to a restaurant called Longhorn that Daddy had been to before and said it was good. Can you believe that at 4:30 on a Saturday there was a 45 minute wait? We went across the street to Chilis and the wait there was a 25 min wait, but we ended up finding a spot at the bar. What on earth are all these Kentuckians doing trying to eat dinner so early? I was in a lot of pain at dinner, so we came home and rested. That really helped.Now I just have to make it through another day worrying about my boys; mostly I am worried about my big boys heart, since he has severe cardiomyopathy. I looked that up on wikipedia; very bad idea. I am hesitant to sleep on my right side because that is where my little guy is and I’m afraid of cutting off his circulation because of his membranic cord insertion. I will feel so much better when we are on our way to the hospital. Daddy is being so supportive of me when I start to worry and overall, an amazing rock for me. I wouldn’t expect anything different because this is the same man I married. He is truly an amazing husband and I know he is going to be a great father to these little guys.He finally woke up so we are going to go get some breakfast.
Posted by Mommy at 7:05 AM
Well, in about 12 hrs we’ll be checking into the hospital for the boys surgery.  They will still have a ways to go before they catch-up to their dear old dad’s surgery count though… hopefully they never will either.I’ll be sure to post updates on CB as they come in tomorrow morning, so enable the email alerts/text alerts if you want to get them near real-time.  I also downloaded the CB iPhone app in case I have any issues with connecting my laptop.Thanks everyone for your thoughts and prayers.
Posted by Daddy at 4:19 PM
Neither one of us slept much last night; so we got up earlier than we needed to and made it to the hospital about 515am EST.  She is checked in and ready to go; she’s waiting for another ultrasound then off to surgery.
Posted by Daddy at 5:12 AM
Completed the ultrasound and pre-op; I’m now in the waiting room and just received my first report that they were about to get started with the procedures and that Mommy is doing well.Everything should take about 2-3 hrs.
Posted by Daddy at 7:24 AM
I just received another update, they’ve completed the placental mapping and are starting the laser procedure.Seems like they are ahead of schedule and that’s a good sign! 🙂
Posted by Daddy at 7:52 AM
She is out of surgery now, awake and recovering… Surgery went well, but the doctors are concerned with the placental share of the lil guy.
Posted by Daddy at 8:55 AM
Well, still another 2 hours before I get to eat and get this darn catheter out! I’m having some contractions but they seem to be slowing down a bit. They say it’s normal and they should taper off, if not they will give me some medicine. My scar is very tiny; it’s about the size of a ladybug :)I’m feeling ok, just very nervous about our little guy. The doctor estimated he’s only getting 15% of the placental share. He said if we’re going to lose him it will be in the next 12-24 hours. I’m trying to remain positive and hopeful for him; he’s already proved to me that he’s a fighter. Please pray for him extensively. He needs the prayers. Thank you all for your support!
Posted by Mommy at 10:42 AM
Mommy and I are going to sleep now. Her contractions subsided hours ago and she’s doing really well. We’ve been watching movies to kill time and to take our minds off things. Lord of the Rings, 40 Year Old Virgin and Airplane made the cut… I also went out a grabbed some PF Changs for dinner… Mmmm!We want to thank everyone for the love and support you’ve shown us so far; we are truly blessed to have such great friends and family.Say some prayers to St. Jude for us that both boys pull through the night.
Posted by Daddy at 9:36 PM
Both babies hearts are beating this morning! We are waiting for the doctor to come by, so we will update when we hear what he has to say! Thank you for your prayers; they have been answered! Keep them coming!
Posted by Mommy at 6:44 AM
Just spoke to one of the doctors and he said that the boys look good so far; lil guy is not acutely affected by the smaller placental share, but is far from being out of the woods yet.We are scheduled for an ultrasound on Friday morning and we hope to see improvement in the big guy’s heart…When we return home, Mommy will remain on bed rest and we will have a weekly ultrasound to make sure they continue to grow at the right rates.Thanks again for all of prayers and support.
Posted by Daddy at 7:30 AM
We are back at the hotel now, I am going to get some rest now that I know my boys are OK.  Daddy forgot to mention that the doctor said that their fluid is now equalized.  Big brother looked mad on the ultrasound this morning because he is no longer in his nice big bounce house!  I am cuddling up with the boys first blanket that was given to them from the Fetal Care Center.  Love those people 🙂
Posted by Mommy at 10:03 AM
All is well today, I’ve been laying in bed just about all day. Just a few minor aches and cramps but that is to be expected. I’ve felt a lot of kicking today, but it’s really hard to tell who is who since the little guy has a little placenta wrapped around the side and front of my belly.Daddy was able to get some work done earlier then he went and picked up some Outback for dinner! Anxiously awaiting Friday to see how the boys are doing! Thanks for keeping the prayers coming. I bet we’ve got a couple thousand people praying for us after all of those prayer lists we’ve been added to! We really appreciate it!
Posted by Mommy at 8:56 PM
I’m still doing the same thing as yesterday, just laying around and taking it easy.  I can’t wait to get home and sleep in our bed; this hotel bed is hard as a rock and I wake up every couple hours in pain from the bed!  As far as pain goes from the surgery, I have noticed a great decrease today.  Getting in and out of bed is easy again!The schedule for tomorrow is:
8am – Ultrasound
10:30am – ECHO Cardiogram
1:00pm – Meeting with Dr. Crombleholme (surgeon)Our flight leaves tomorrow at 7pm.  Can’t wait to be home!
Posted by Mommy at 1:57 PM
We just had our ultrasound, both heartbeats were nice and strong!! Fluid levels look a lot more balanced. Little guy’s bladder was much fuller, which is a great sign! They said the cord flow sounded much better for him, but we will get more detailed results with our ECHO which is in an hour and 15 mins.
Posted by Mommy at 8:07 AM
During the ECHO, the boys were having a kickboxing match! They were slapping, punching, and kicking each other!! That put a huge smile on our faces! We won’t get the results from that until our 1:00 consult with the surgeon. I will update again after that.
Posted by Mommy at 10:58 AM
Even greater news!! The condition has been STOPPED! The surgery was a great success! Both babies are already showing improvement in cardiac function. There is always the concern of the placental share, but the doctor said some of that could have been relieved with releasing the pressure that was on the little baby.The only issue the placental share could pose is that the little guy’s growth could plateau around 26 weeks, but as long as they stay in until they reach a mature gestational age, he will basically be a healthy little baby.Now I have to go home and rest to keep them in as long as possible!Thank you all for your prayers; they have been answered! Now we just need continued prayers that they will stay in as long as possible, past the 32 week average delivery for TTTS babies!
Posted by Mommy at 12:37 PM
We had our first follow-up appointment with the Maternal-Fetal Medicine specialist.  He was very impressed with how the boys are doing!!!  Their fluid levels are near equal and normal.  I think they had drained off more fluid from the big baby anticipating he would make it right up because today they both looked like they had more room than on Friday.  Their dopplers (various measurements of blood flow from heart and cord) were very good.  I will see the MFM weekly, and they will take growth measurements every 3 weeks.We got many good 3D pics today, so that made us happy.  They were hugging, the big baby was giving little guy some spankin’s too!
Posted by Mommy at 8:10 PM
MONDAY, MARCH 14, 2011
The boys are still doing great! The doctor was very proud to see the little baby’s cord flow at a NORMAL flow. He kept saying “great” and “beautiful.” He feels that this makes him believe we have more time to work with until delivery, which makes us feel great.They will do growth measurements next week and we hope to see some catching up. Also, we have another ECHO next Wednesday so we’re excited to see how the big baby’s heart is improving.Keep the prayers coming; they are definitely being answered!
Posted by Mommy at 5:42 PM
MONDAY, MARCH 21, 2011
The boys are doing good, and the little baby is showing 2 weeks worth of growth over a 4 week period, which is good, as long as he IS growing and that end diastolic flow is still going.  As long as he has good end diastolic flow, he is safe.  He will always have slower growth than his brother.  As long as he is of a good gestational age, he will be just as healthy as big brother.  The little baby is 10oz, basically 19w3d, and big brother is 1lb, 1oz (17oz), or 22w.  I am 21w6d today.  Though the discrepancy seems discouraging, the doctors are not worried since he is still growing, just at a slower pace.  We meet with the pediatric cardiologist on Wednesday to take a better look at the big baby’s heart.  The doctor expects by then that his heart will be close to totally reverting from the damage the TTTS caused 🙂  Will update more then!  Keep those prayers coming!!!
Posted by Mommy at 7:14 PM
Today we had another ECHO to see how their hearts are doing since the surgery 3 weeks ago. Basically they are much improved, but the big baby’s heart still has a little thickening around the right ventricle. Other than that his heart isn’t terribly distressed like it was! The little baby looks great. His heart looks pretty much normal, and he has that positive blood flow going now and she thinks that betters his prognosis. We will have another ECHO in 5 weeks.I asked her if the big baby’s heart would have to be watched as a child, and she said she will probably check him right after he’s born, at 6 months, and a year. If no problems by the 6 month and 1 year mark, he will be given a clean bill of health :)Thanks for all the prayers everyone. We need them to keep going up!
Posted by Mommy at 6:55 PM
MONDAY, MARCH 28, 2011
Innertwin membrane rupture
Well, today I have some good news and some bad news.  The good news is the little baby is continuing to get postive blood flow.The bad news is they cannot find the membrane that seperates them.  It looks like it has ruptured and the boys are now in the same amniotic sac.  They switched sides, and we can only guess when they switched sides that they broke the membrane.Now Daddy and I have to decide when I want to be admitted to the hospital for daily monitoring.  They were monochorionic/diamniotic twins, now they are monochorionic/monoamniotic.  They now face the risk of cord entanglement, and that is why they will monitor me every day.  Some people want to be admitted when they are 24 weeks pregnant, others see no point until both babies have a good chance of viability, which is 28 weeks.  We haven’t decided yet.  The doctor said that the risk for cord entanglement usually is higher as they are smaller, then lessens as they get bigger, so it is good that we have passed that extrememly high risk time.I am trying to look at this as one of the lesser of the worst things that could happen at this point.  So, I guess all in short we really need those prayers to continue!
Posted by Mommy at 5:22 PM
This morning I had an appointment with my obstetrician.  They also saw the membrane on the side, and not between the two babies, confirming that they did indeed rupture that membrane.  They also switched sides AGAIN, and are now both in the breech presentation.  This will not be an issue as I will 100% be having a c-section.I had to do my glucose test today to check for gestational diabetes.  I will have the results from that tomorrow.  Those little boogers better not give me any more problems!!!Also, they checked their weights, the little baby was 14oz, and the big baby was 1lb 8oz!   If this is correct, that means the little baby did almost 2 weeks worth of growing in a 2 week period!  We will get a better estimate next Monday when the Maternal Fetal Medicine specialist checks, since these weight checks were preformed on 2 diffferent machines.  I am really hoping that we show another 2 oz of growth in that little guy next week so he will finally hit the 1lb mark, but I understand that it might not show any growth because of human error and machine discrepancy.After last weeks appointment, we made the decision to be admitted at 26 weeks for monitoring.  We did some calculations with our in family Neonatal Nurse Practitioner, the boy’s Aunt.  Since the little baby is so small, he is going to have a hard time surviving before 26 weeks, so we mostly based the decision on him.  The big baby weighs enough to have a 45% chance of survival now, at 24 weeks, where as based on the little baby’s weight, he only has a 15% chance.  My personal goal is to get to 28 weeks minimum, at which point I will breath a sigh of relief.  Before 28 weeks, it will really be a struggle for that little guy.  I just have a feeling that these boys are going to fight and despite the 2 early delivery challenges they are facing, they will make me sit in that hospital bed for the full 8-9 weeks!  That is OK though :)Keep the prayers coming for a minumum delivery of 28-30 weeks!  Thank you everyone!!!
Posted by Mommy at 4:43 PM
MONDAY, APRIL 11, 2011
It has been 6 weeks since I went under the knife to recieve a miraculous surgery that saved our boy’s lives.  If not for that surgery, it is certain that by now we would have lost one if not both of them.  We are thankful for every day that I remain pregnant with these two little guys.After our visit with the Maternal Fetal Medicine specialist, they are both doing great.  The big baby is measuring just a little ahead at 1lb 12oz.  What we saw at the OB last week was confirmed.  The little baby is growing way more than he has been expected to!  He is now at 1lb even, confirming that he has done 3 weeks worth of growing in 3 weeks.  His cord flow still looks good, basically buying us a lot more time with this particular issue.  The doctor said that basically when they notice absent flow, you can get about 3 weeks out of that baby before having to deliver, so while he still has positive flow, there is no real time limit.  We are so relieved that he is doing wonderful.  That was originally our main concern.  We are truly truly blessed to have such a great prognosis for the baby they thought wasn’t going to make it 12-24 hours post op!It is official; I am being admitted to the hospital next week for monitoring, and with a busy week and weekend ahead of us, I think I will go on Tuesday when I am exactly 26 weeks.All of the praying everyone has been doing is being answered, so don’t stop!  Thank you everyone for your support!
Posted by Mommy at 6:53 PM
SUNDAY, APRIL 17, 2011
Failed my first glucose test… REALLY??? Called the MFM and he said he could care less if I have gestational diabetes, and don’t tell my OB he said that, so that was nice to hear 🙂 worse thing that could happen to the boys is they would be big babies. DUH we need them to be big! Maybe this is a blessing of it’s own?I will take the 3 hour test when I get admitted to the hospital, and that will give us a more definitive answer. In the mean time, no excess candy and ice cream 😦
Posted by Mommy at 12:17 PM
OK so I know everyone is DYING for an update.  I checked in to the hospital yesterday, and am finally getting settled in.Yesterday they hooked the boys up to the fetal monitors, and both were good the first 2 times on the monitor, then the third time they decided to rebel and were squirming all around and kicking the monitors!  The readings looked good, and there is no sign of fetal stress on either.  The MFM’s partner came to visit us yesterday.  She flew to Cincinnati to witness our surgery, so this was the first time I actually got to visit with her.  Daddy could not be here at the time she came, and I know he was very upset to miss out on a first for the boys.  The little guy was practicing his BREATHING!!!  It was so cute.  You could actually see his lungs expanding.  The big baby it was not as obvious to me, but he too was breathing.  They both have stayed on their sides of the womb for a whole week now, so I think.  I have not felt them switch or felt like they did based on each’s individual personality, and they were both still on the same side.  Both my OB and MFM are optomistic that we are not going to be deilvering any time soon.  They both think that the reason will be the low placental share of the little baby and not cord entanglement.This morning they woke me up at 7am to start my 3 hour glucose tolerance test.  The nurse looked at the results from my test, and they think that you have to pass 2 out of 3 blood draws.  The acceptable level is 140, the first one was 139, the second 168, and the third was lower, I think around 120.  I have to wait for the doctor to officially diagnose me.  I really hope I passed in their eyes!  I also recieved my first steroid shot about an hour ago, as a “just incase” we deliver soon.  This will help mature their lungs.  I will have another shot tomorrow to complete this round.  I will get what they call a “rescue” dose in the future if there is any sign that we will be delivering 48 hours-7 days later.My OB comes by and sees me every day, and the MFM will com either each Tuesday or Wednesday, depending on who else they have to see since they have to make a special trip up here.  I will still only get weekly ultrasounds by the MFM.I am about to be monitored again today.  For right now, they are hooking me up to the monitors 3 times a day for 20 minutes, and will increase that if need be.So far all is looking well and I most likely will be hanging out here for the next 8-9 weeks!

Posted by Mommy at 1:23 PM
FRIDAY, APRIL 22, 2011
I forgot to update with the results of my glucose tolerance test… I passed!!! No gestational diabetes for me! Now I can eat all the ice cream, cheesecake, and reeses peanut butter eggs I want!The boys are still doing well on the monitor. Sometimes the little guy doesn’t like being monitored and he will kick it and move away from it! He’s such a naughty boy already!I received my second steroid shot yesterday, so if for whatever reason we do end up delivering in the next week, this will greatly benefit them.Thanks everyone for continuing to lift up our family in prayer.
Posted by Mommy at 11:35 AM
MONDAY, APRIL 25, 2011
The MFM came tonight. Little baby STILL has good diastolic flow in his cord!!! He said when he met us and first diagnosed us, that he definitely did not think we would still be doing this good at 27 weeks. He also told us that he did get to talk to Dr. Crombleholme about their innertwin membrane rupturing, and he does have evidence that the further along in the pregnancy that this happens, the less likely they are to become entangled as if they had been in the same sac the whole time. So far the monitoring has not suggested that they are tangled up to a dangerous point. We will have a growth check next week.We got to see both of the boys swallowing fluid today. That is always reassuring that they are getting ready for life outside.I have had a lot of visitors in the hospital. Daddy has done a wonderful job of coming during his lunch breaks and coming by each night. He even sacrificed his back for me on Saturday night sleeping on this crappy couch bed here. I do not know what I would do without him. He is my knight in shining armor.We are so thrilled that our boys are doing so well and that our little guy continues to beat the odds. I wonder if it has something to do with all the prayers we are receiving 😉
Posted by Mommy at 7:50 PM
MONDAY, MAY 2, 2011
Tonight we had two doctor visits!  One with the MFM for a growth check, and one with the pediac cardiologist for a repeat ECHO cardiogram.  We recieved good news all around.  The big baby now weighs 2lbs 6oz, and the little guy weighs 1lb 8oz.  In gestational age, the big guy is measuring 2 days ahead, and the little guy is measuring 3 weeks and 2 days behind.  They are now only at a 38% discrepancy.  We got 2.5 weeks worth of growth in 3 weeks out of the little guy.  I was a little disappointed that he did not get the full 3 weeks, but I have to look at the bright side, we are blessed that he IS still growing, and his cord flow looks better than his brothers!The ECHO showed us that the big baby’s heart is now PERFECT!!!  We are so glad to be able to say this!  She said she would give them both a 10 on their heart scores!  She still wants to see them after they are born just to be sure that they are both normal.  There are many aspects of the ECHO that they cannot see on babies in the womb because of how much they move and you cannot control the viewing angle.All else is going well.  I am starting to get used to the hospital.  Poor Daddy feels run ragged.  He has a lot on his plate right now and somehow he juggles all of it!  I still have a hard time when he leaves at night, and I do not expect that to get any better.  It is very hard for me not sleeping in our bed with him.  At least I get a break from the snoring for a while :)Tomorrow I will be 28 weeks.  This is a HUGE milestone for us!  The boys should be able to survive with minimal long term birth defects if born at this point.  This was our first goal, now each week after this is a blessing.  I know we will have no problem getting to 32 weeks, so I am setting that as our next major goal.Thank you for your continued support and all the prayers!  We are so blessed to have so many who care.
Posted by Mommy at 10:56 PM
MONDAY, MAY 9, 2011
We are still doing well!  MFM came tonight and the boys look great!  Still positive flow on both!  I told him my next goal was 32 weeks and his response was, “I think you have 32 in the bag.”  The boys continue to be fighters.  We are keeping our fingers crossed that we will get to week 34 without any problems!For those who live in DFW, our MFM, Dr. Zaretsky, taped something on TTTS for Channel 5 news, and they are supposed to air it on the 10pm news either Thursday or Friday.  He said, “Whatever day they don’t do the special on the guy who had the face transplant.”  They aired a special on him tonight, so I am going to be looking for Dr. Z each night this week.  We owe a lot to him!
Posted by Mommy at 11:28 PM
TUESDAY, MAY 17, 2011
Still doing well!  The boys both have positive cord flow STILL.  They were both practicing their breathing!  She thinks she saw some peach fuzz on one of their heads!  Hopefully they won’t be bald for the first year of their life like I was!
They are for the most part doing well on the monitor.  We have had some large drops in their heart rates, but it has been picking back up within 30 seconds.  They tell me not to worry unless it stays down for a few minutes.  These short drops are most likely them rolling over on their cords.  The monitor has been picking up random contractions from me, but they say as long as they are not painful, it is OK.  Lastly, they are watching my blood pressure.  It has been a little on the high side from time to time.  There are only trace amounts of protein in my urine at this point, and no other signs of pre-eclampsia, so they are just watching it.  Please pray that all of these things stay where they are and do not progress any further!  We only have 4 weeks at most to go, and I’d really like to make it that far and not one of these silly little things be the reason we don’t make it that far.
Posted by Mommy at 11:08 AM
Well, today has been a rough day since I updated about the boy’s ultrasound last night.  When the doctor came to see me, he said he wanted to go ahead and test me for pre-eclampsia.  I get weighted each Monday, and this week I gained 6lbs.  He said more than 5 is an issue.  He thinks it could be water weight.  The 3 things he needs to diagnose me is high blood pressure, swelling, and protein in my urine.  He ordered blood work and a 24hr urine test.  The blood work was fine, but he said that it doesn’t always catch it this early.  I am not sure how fast I will have results on the urine test, but I finish tomorrow at 1pm.  I got weighed again before starting the urine test for a more accurate baseline, and I gained 2lbs since yesterday!  The only cure for pre-eclampsia/eclampsia is delivery.  We can ride it out depending on how I do, if I do even have it, but it is fatal to the mommy at a certain point.
I also started contracting pretty regularly around lunch time.  My doc isn’t worried because they are not painful at this point.  I am really worried because they are very frequent (5-10 per hour) and starting to intensify.  They still are not getting painful, just very uncomfortable.  I really don’t know what to expect as far as pain goes, but I am thinking in my head of a pregnant woman in labor on TV, and I am definitely not sweating and cussing 🙂
I will update when I get the results from the urine test.  If it’s not the boys acting up, it’s mommy.  I am not ready to have these boys yet, so please pray that my body will allow me to stay pregnant this last 4 weeks.  Thank you all!!
Posted by Mommy at 6:55 PM
Last night my contractions continued to come pretty regularly with a couple of painful ones.  They gave me a Terbutaline shot to stop them.  It worked almost instantly, and made me shaky and my heart race.  This morning they picked up again, coming every 2-3 minutes, so I got another Terbutaline shot.  Once again they stopped.  They did a Fetal Fibronectin (FFN) test on me.  This basically detects a certain protein that is a glue holding the amniotic sac to the uterus.  If it starts to seperate, the fibronectin is excreted and can be detected by the test.  The general rule is if you have a positive FFN that you are likely to deliver within the next 2 weeks.  If it’s negative, they can say you are not going to deliver within a week.  Mine came back NEGATIVE, thank goodness, so we may be repeating this test weekly.  They also examined my cervix to see if these contractions are pre-term labor.  No dilating, so I am NOT considered to be in pre-term labor!!!  I also PASSED my urine test for Pre-eclampsia, so he will be watching my symptoms.  It still could be developing, just not enough protein in my urine to be concerned about.
The contractions have just started up again within the last couple of hours, so depending on what happens tonight is how they will treat them.  He is probably going to put me back on the Procardia for the contractions, but if they become painful, they will put me on muscle relaxers or pain killers.  They only like to use the Terbutaline a few times a week.  Until we get some cervical change, this is about the extent of the treatment; it may just be me riding them out.  The doc thinks contractions of a pregnant woman at 30 weeks with twins are normal, since my belly is almost as big as someone full term with one baby.  I guess we will see how it goes for now!
Thanks for the prayers for mommy & babies!
Posted by Mommy at 5:51 PM
MONDAY, MAY 23, 2011
Dr. Zaretsky came tonight to do our growth scan.  Big man weighed in at 4lbs 3oz, and the little guy is 2lbs 7oz, both with amazing positive blood flow!  I forgot to get the weight in gestational age, but basically the big baby is around 2 weeks ahead all of a sudden!  He did not seem to concerned about it though.  I asked him to look at his heart and he could not see any enlarging or thickening.  We do have a little extra amniotic fluid for them to swim around in, but not worrisome amounts.  He thinks the extra fluid may be from the big baby growing so fast, but not sure.
I asked his opinion on the swelling and excessive weight gain I have had (14 lbs in 2 weeks), and he thinks I am most likely developing pre-eclampsia, just not quite there yet since there is still no protein in my urine.
This morning my OB mentioned that Dr. Z did not think I was going to make it to 34 weeks after my OB giving him the update on last week.  Dr. Z wouldn’t really tell me why other than I am at the average delivery for TTTS patients, and all we can do is watch the clinicals, and what my body decides to do.
They are not going to stop labor should I go in within the next 3 weeks.  The OB is supposed to be having his nurse schedule my c-section for 34 weeks on the dot which is June 14th.  I cannot believe we are already so close!  I really want to keep these boys in until June 14th, but I’m still contracting and having a little more pain, mainly which I think has to do with the size of my belly, location of the little baby’s butt, and his feet being in my ribs.  The contractions are still not painful enough to be considered true labor contractions.  I am a little down after hearing the person I look up to and trust my care in tell me that he thinks I am not going to make it to that 34 week date.  I should be used to this now since these boys have proved all the docs wrong in the past, but with these contractions, blood pressure, and weight gain, I am kind of believing him.
I will try to start updating this more often, as I have been getting a lot of phone calls since everyone is worried about us, and it’s getting hard to keep up with them all between visitors and trying to rest.
Please pray that my body will calm down (of course I have to calm down emotionally too), and that they can be born at 34 weeks and have that minimal NICU time (~2 weeks) that we were hoping for.
Posted by Mommy at 9:18 PM
Yesterday was a great day.  My best friend since childhood gave birth to a healthy 8lb5oz baby boy.  Welcome baby C!
On another note, yesterday was not such a great day for me.  I drank a ton of water, but barely had much to pee.  I kept drinking and drinking, still nothing.  I spent most of the day sitting in a wheelchair in my friend’s hospital room while she was in Labor & Delivery, coming back to my room when it was time for medicine and testing.  At my 4:00 monitoring session, I was having difficulty breathing.  Usually when they strap all the monitors one me, it sets off contractions.  While the contractions are still pretty painless, they are uncomfortable and take my breath away.  The problem was my breath never came back and I felt like I could not breathe for a couple hours.  I moved positions and finally it went away.  Before my nightly monitoring, I went up to postpartum so I could meet the baby!  A few minutes after being up there, we went under a tornado warning and they forced us all in a storage room in wheelchairs.  We didn’t think it would last too long so we cooperated, and I told the nurses there that I belonged to antepartum.  Then after sitting there for about 30 minutes, my legs began to hurt, I was feeling lightheaded and nauseous, so Daddy and I left to find a working elevator and made it back.  They pulled my bed in the hallway and I layed down.  I felt a little better after that.  Then when we were all able to go back to our rooms, she strapped me up for my nightly monitoring session and could not get the boys to hold still.  After about an hour of moving the monitors around, she found the little guy on the opposite of my belly.  I was really starting to freak and hoping they would send me for an ultrasound, but then they found them.  I was a little concerned because BOTH of their heartrates were on the low normal range.  They are usually in the 150’s for a baseline, both were in the 100’s-110’s.  They came up a few times, but not to their usuals.  They called the doctor and he was reassured by looking at their strip (the thing that prints the heart rate tracing).  The normal range is 110-190, but he really did not seem worried about those numbers lower than 110, because it wasn’t a lot lower.  Of course I was again freaking out over this and the fact that I still wasn’t peeing a lot.  I was sure I had gained 5 lbs yesterday alone.  This morning my weight was up 4.8 lbs…
My OB came to visit me and he is really worried.  He said he has been trying to pin pre-eclampsia on me, but with my only symptom being swelling and mild blood pressure, he is now thinking it could be something else.  He ordered an ECHO cardiogram for ME this time.  He wants to make sure I do not have perinatal cardiomyopathy, which is essentially heart stress that can lead to heart failure.  Some women develop this close to delivery, and some have postpartum cardiomyopathy which is heart problems after delivery.  He is pretty certain that if it is perinatal cardiomyopathy that it will go away after I deliver.  They will be coming up some time today to do the ECHO.
My OB also ordered another 24 hour urine test to re-check to see if I have protein in my urine.  They do a daily test with a dip stick, and she asked for a sample.  I barely had 2 ounces to give her and it was dark and dehydrated looking.  It came back +1 on the protein.  The levels the dipstick picks up are not always accurate, but it goes from negative, trace, +1, +2, etc.  The 24 hour test will tell us.
I have lost my privileges to walk around outside my room.  I am supposed to be in bed, allowed up to shower, use the restroom, brush my teeth, and other essential things.
If either of these tests show something, we may be facing delivery soon because of maternal risks.  The good thing is my OB talked me in to my second round of steroids yesterday.  Daddy and I were thinking about waiting until next week, because you get maximum benefits of the steroids when the babies are born within 7 days.  I will get another shot this afternoon, and by tomorrow they should be in full effect to be on their way to helping the boys lungs.
Of course we are not ready to deliver so soon, but safety is safety.  I am actually calmer than I expected to be today, I guess all my prayer has truly helped me put it in God’s hands.  I was a wreck last night and barely slept.  I just kept on praying and praying.  I know something is wrong with me and the best thing at this point for the health of me and the boys is to deliver.  I am OK with this.  We are blessed to have made it to 31 weeks, although I was really hoping for 34 and a minimal NICU stay.
I will post an update probably tomorrow after the ECHO and seeing my OB again.  The cardiologist just came by and told me that someone will come to my room for the ECHO and he will be back tomorrow to give me the results.  I am going to try and get some rest today, so the best thing you all can do for me is pray pray pray!  Thanks!
Posted by Mommy at 10:40 AM
 Mommy Update…
Mommy asked me to update everyone on her health situation.
Today’s been a rough day for her, she’s been retaining a ton of water, had another steroid shot, was having trouble breathing and is very worried about her health and the babies having to be delivered early because of that.  Her doctor ordered an EKG and echo-cardiogram, plus they checked her lungs for fluid, urine for protein and blood oxygen levels multiple times throughout the day.  Good news is that the results all came back negative; no heart issues, no fluid in her lungs, not a significant amount of protein in her urine…  Bad news is that they haven’t figured out why she’s retaining this much fluid…  Babies are doing fine, so she’s trying to tough it out for now but it’s been an emotional roller coaster.  Please keep her and the boys in your thoughts and prayers.
Posted by Daddy at 9:55 PM
THURSDAY, MAY 26, 2011
I am feeling a lot better today, minus the swelling and shortness of breath.  I gained another 5.5 lbs overnight, so far up 12 lbs since Monday.  My urine output is still not ideal, but it matches up with the swelling.  As Daddy mentioned last night, I passed all of the testing yesterday, so that is good, it’s just one of those things that you really wish they could put their finger on so you would have some answers.
My 24 hr urine test came back just below the threshold for amount of protein that is considered acceptable.  Mine was 292 and anything over 300 would most likely tell the doc that I for sure have it.  Last week when we did the test it was in the 160’s.  The cardiologist thinks that part of my swelling may be related to the Procardia that I have been on since February for the big baby’s heart.  Granted his heart was fine and they told me I could stop taking it for that, I went ahead and stayed on it because it also helps contractions.  He is taking me off the Procardia and hoping that will stop the swelling from progressing any worse than it already is.  My thighs are so swollen that I do not have knees anymore, and you guessed it, I have cankles 🙂
Also being off the Procardia might raise my blood pressure, and if my diastolic numbers get too high, I will be delivering.  The OB thinks it’s a matter of a few days to a week.  He is thinking around 32 weeks most likely, which is Tuesday.  All of these strange symptoms I am having is my body trying so hard to keep these babies in, and he really feels I just need one more thing to to convince him it’s time to deliver.  The MFM wants me to deliver, but my OB is holding off a few more days to watch my health, and I agree that if there is not a lot pointing to it, we need to get a few more days out of this pregnancy if at all possible.
On another note, they took me down for an ultrasound today.  The boys are both doing GREAT.  They checked their weight too, and came right on target with what the MFM got on Monday, so we are pretty convinced that those numbers are accurate.  The big baby weighed 4lbs 4oz and little man was 2lbs 9oz.
Thank you for your continued prayers.  I will try my best to keep everyone up to date!  Now I need a nap 🙂
Posted by Mommy at 1:45 PM
FRIDAY, MAY 27, 2011
Good news!  I started peeing a lot last night.  My thighs look and feel so much better today.  I did not get a lot of sleep last night again, but at least it was for a good cause.  I only gained 1 lb overnight.  That’s all for now; just wanted to let everyone know that something turned for the better last night.  Must be all those prayers!
Posted by Mommy at 1:16 PM
SATURDAY, MAY 28, 2011
Well, today is the day! I started bleeding this morning and the doctor decided it’s time. They’re taking me back to the OR. Please pray for us and the boys!!!
Posted by Mommy at 9:19 AM
The Boys are here!!!