Tuesday, December 3, 2013

TODAY- A "New" Mom's Declaration

Today I will trust my instincts and do what I think is best as a “new” mom. Today I will let the dog clean up the baby food that is stuck to the kitchen floor.  Today I will not freak out every time said dog drags in debris from the yard and simply consider it nutritional fiber for my boys.  Today I will let the dog lick clean the prunes from the babies’ hands and faces and save myself the trouble.  Today if a baby finds a dog bone I will consider it a teething toy instead of breaking my neck to get it away from him for fear of grossness and God only knows what germs.  Today I will tell the new UPS guy to STOP knocking during naptime, or any time for that matter, and I will do so without brushing my teeth or hair first so as to drive home the fact that this desperate woman means business, old UPS understood.  Ain’t nobody got time for the new UPS guy! Today I will use naptime to eat whatever is edible and doesn’t have to be prepared, rest, and watch mindless television because the dishes can wait yet another day, it’s winter the bugs are in hiding.   Today I will eat lunch BEFORE my boys do because feeding twins takes forever and I refuse to feel miserable all day because I have neglected my own self-care!  Speaking of self-care, today I will let the babies cry while I use the bathroom because I just CAN’T keep “holding it” any longer! Today I will not stress out over a full diaper if no one is crying because wet pants can be laundered and I have a full stock of Desitin if a rash starts to emerge.  Today if I catch one of my babies staring at the TV I will not turn it off or try and engage him in something more “interactive” I will let his brain temporarily turn to mush and try not to worry about him developing ADD later in life.  Today I will remember that the Mongolian baby in the movie “Babies” seemed to turn out ok after eating rocks and climbing in cow dung.  Today I will laugh at irrelevant advice given to me by parents of singletons rather than getting annoyed and resenting them for how much easier their life with a baby seems to have been.  Today I will remember that “new” moms of singletons or twins ALWAYS “get it” because they are in the trenches and haven’t forgotten the vulnerable state all new parents are in. Today I will stand up for Mom’s of NICU babies when I read insensitive comments online with phrases like “you’re going to be a great Mom” –Newsflash: said person is already a great Mom making life or death decisions on behalf of her child/children daily!  Today I will let myself cry when heart broken over the fact that I can’t hold both teething babies that are crying in pain at the exact same time and I will allow myself to mourn the fact that neither of my children will ever get to experience the special attention that comes with being “the baby” of the family but rather will always be “one of the babies” while home alone with Mommy.  Today I will accept the fact that I am doing the best that I can and that just has to be good enough.  Today I will accept that love and grace cover a multitude of “new” parental mistakes. Today I will remember to trust God more than I trust myself to care for my little miracles.  Today I will remove the word “new” and refer to myself simply as a Mom, a “real” Mom.  

Monday, December 2, 2013

Make Cyber Monday Matter!

Hey guys! I post so irregularly these days that I'm not sure I have any consistent readers BUT even still this is too good not to share!  Today is Cyber Monday and if you are like my family you'll spend some time on Amazon.com  Well you can make your shopping matter today & everyday this Holiday season.  By using this link you can choose the TTTS Foundation and .5% of all sales become a donation! https://smile.amazon.com/ 

Check it out!

Friday, November 29, 2013

Diagnosed with TTTS: One Year Later

One year ago today I was nearly 19 weeks pregnant & getting a routine every-two week ultrasound at the perinatologist (high-risk doctors) when everything suddenly changed. Our ultrasound tech handed us blurry images filled with black unlike any we'd ever seen before.  As she left the room what felt like a million people entered and we knew the news we were about to hear wasn't good.  That black in the images was fluid, way too much fluid around a little boy we called baby B, soon to be known as the "recipient baby," now known as Connor Lansden.  The rest of the news about baby A "the donor" now known as Timothy Austin was all just as blurry as the sonogram photos.  We were officially dealing with Twin to Twin Transfusion.  My instructions were to go home, get in bed, spend as much time as possible lying on my left side, drink lots of water, and not get up other than to go to the bathroom or the kitchen.  Our goal (as set by our Dr.) make it to next week's ultrasound with no change.  I now know the reason the goal was for "no change" was because there was no way to reverse what we were seeing, not yet anyway. Our only hope at that point was to keep it from progressing aka getting worse. As you know from reading previous posts we didn't meet that goal! Over the next week we progressed from Stage 1 to Stage 4. There is no stage 5!  More on that next week!

I am reminded today of the fear, anxiety, uncertainty, and utter shock I felt on this day one year ago. Yet as I look down from this couch I see a nearly 8 month old "baby A" pulling up smiling and I hear a very loud "baby B" waving his jiggling toys in the air.  This holiday season we are overwhelmed with gratefulness. We are thankful for advances in medical technology that made life saving intrauterine surgery possible. We are thankful for doctors, technicians, nurses, and hospital staff members.  We are thankful for praying, cooking, & generous friends and family.  Most of all we are thankful that the only blurry pictures of the boys that pop up now are due to two mischievous, fast-moving, healthy little boys!

Wednesday, November 20, 2013

A Joyous Reunion & A New Video

So we've been busy lately.  Busy dealing with snot and other glamorous sinus infection/ear infection types of nastiness :(  Any sickness we've experienced over the past few weeks is just normal baby stuff, miserable, but treatable everyday life stuff.  It's nothing like the stories I keep hearing about expectant parents diagnosed with Twin to Twin Transfusion Syndrome. Lately, almost weekly, we are contacted by someone saying, "I have a friend who just got diagnose with TTTS. Can you talk to them? They are really scared." For me, when I was diagnosed, I was blessed to be assigned a representative from our hospital (Mercy Hospital here in St. Louis). Her name is Karen and she is a nurse on the fetal care team that is assigned to high-risk cases like ours.  She was called into the room when we were given the diagnosis and the news was so overwhelming that day that her face and name were just a blur to me.  The next day she called me and with the sweetest most caring voice said, "I just called to check on you and see if you had any questions now that you've had a little more time."  She was so right! With more time, questions were finally surfacing in my mind, but my thoughts were so jumbled that I couldn't even figure out where to begin. She assured me that she would always be available for questions or concerns if we needed her, and she wasn't kidding! Karen held our shaking hands figuratively and at times literally through the rest of my pregnancy. She frequently listened to me cry and even led me to a quiet room to scream one day when I was so frustrated with the conflicting reports we were getting from different doctors.  She was at times a voice of reason and when desperately needed a voice of hope, exactly what we needed! A few weeks ago we were able to visit Karen again and she held our healthy babies for the first time since we left the hospital 7 months ago!  It was a joyous reunion.

Not all parents get to have joyous reunions like this. Not all families that Karen is assigned to have happy endings...and so we carry on trying to raise awareness of TTTS.  So below is our next video.

I found Timothy like this at the end of a nap two months ago (at 5 months old). Yes, you can hear my Kentucky roots loud & clear in my voice.  Turn up the volume though & enjoy the sound of the pacifier coming off Timothy's face! Hilarious to us! Hope you enjoy...Please spread this around far & wide.

Tuesday, November 5, 2013

The Debut of our Babbling Babies!

Alright so here's the thing...finding a video of our babies that will actually be amusing to the general public is harder than I thought!  As first time parents pretty much anything they do amuses us. They crack a smile or utter a "baabaabaabaabaa" and we think it's the greatest thing since sliced bread! Looking back over the last 7 months of videos-utterly pathetic. We are blinded by love! The videos feature more of the two of us acting like crazy fools to make our babies laugh than they do of Timothy & Connor actually doing something amusing.  Alas, I push forward with my quest to raise awareness of  TTTS and so *drumroll please* the internet debut of the two cutest little survivors on the planet (completely unbiased assessment obviously)...a video of our boys at 5 months old (back in September 2013) doing some pretty exciting babbling (okay so it's mainly Connor in this one but you get the idea)! Enjoy (please?) and share to spread awareness of TTTS!

Monday, November 4, 2013

We're Back...Spread the word!!!

We're back!!! After several months just learning how to be parents to two amazing twin boys we're ready to start posting again.  We have guarded the privacy of our boys carefully while still wanting to share photographic evidence of our great joy and pride for our boys.  We have yet to publicly post any videos of our boys but that is about to change for a very good reason!!! It seems that each week we encounter a new story of a couple dealing with the same nightmare we did but with far less information than we had.  I am sickened to learn how many medical professionals are clueless about TTTS across our nation and world!  With each visit to our pediatrician the Dr. tells us, “If I didn’t know your history with TTTS, I would never guess what Connor & Timothy went through based on how healthy they are now!”  Multiple times he has encouraged us to start sharing our story to raise awareness of TTTS.  It’s time!!! We’re ready!!! Our medium for raising awareness: Youtube & my blog. I’ve never really understood why so many Youtube videos featuring twin babies have SO many views but they do! Millions! We are a culture fascinated by multiples! So why not use that fascination for the power of good!  Starting very soon we will begin posting videos of our twins with the hopes of raising awareness of TTTS.  PLEASE help us get started by sharing our pregnancy announcement video that we made long before we realized just how complicated the pregnancy would become.  I'm not gonna lie if we end up on Ellen all my dreams will come true-ha!  

****Even now as I type this Jonny is messaging back and forth with a woman who is forced to decide whether or not to have the same Laser Surgery to save the lives of her triplets despite the fact that doctors are conflicted as to whether or not the mother's life will be in danger. Please pray for her!**** 

We're already have 4,644 hits on this video...let's get some more & start raising awareness of TTTS!!! 

The boys turned 7 months old on Sunday, November 3!!!  This tired twin Momma hasn't had time to update the monthly photos yet (our boys didn't exactly get the memo about time "Falling Back" & boy am I exhausted!) For now enjoy these 6 month photos and the "outtakes" that show it's time for me to hire a professional! 

As always check out the TTTS Foundation Website to learn more about Twin to Twin Transfusion Syndrome. 

Wednesday, June 5, 2013

2 Months Old-Our TTTS Survivors!!!

Where do we begin catching you up!?!  It’s been two months since the boys were born and there has been a world of change since our last post.  Both boys are now home, growing & thriving!  We are exhausted yet unbelievably blessed! In the beginning after the boys were born my recovery from the C-section and from over 4 months of inactivity while on bedrest was overwhelming leaving me with very little energy to do anything extra…like blogging.  Going home with Timothy and having to leave Connor in the NICU was an emotional burden unlike any other I have ever experienced.  I still have a hard time talking about what it was like to not be able to touch, hold, and bond with my son Connor for the first several days of his life.  Just thinking about it still makes my heart sink in my chest and makes me sick to my stomach. I realize most people who read this blog are already “in the know” about our lives and how things turned out.  I assumed very few “strangers” were reading my blog but recently started finding out I was wrong. Apparently I left many readers hanging.  I apologize for neglecting you-the readers who have prayed us through a disaster turned miracle!  You deserve to hear about our happy ending or rather our new beginning!  So for now I will simply summarize the NICU stay by saying-Connor’s recovery was truly miraculous! 

After several days of pure misery that seemed to drag on and on things started moving very quickly. I will never forget the day they told me “by the time you get here tomorrow we’ll have Connor ready for you to hold for the first time”-meaning tubes and wires which kept me from holding him would be removed.  Going to the hospital that day felt like Christmas morning.  The feeling of finally having my baby boy in my arms, being able to kiss him, hold him tight and whisper I love you in his ear was all that I had dreamed it would be and so much more.  

Holding Connor for the very first time!

With each day following a new machine was turned off and more monitors removed until finally after 14 days (which seemed like a lifetime but I now realize was nothing compared to what most NICU families go through) we were finally all together at home under one roof.  
His recovery was so quick doctors were amazed. 

Finally together in our own home!  

Since then Connor’s checkup with the cardiologist showed that his heart has healed nearly 80-90% since being in the NICU!  The Dr. said that by 8-9 months of life his heart will be completely healed. The best part- the healing will happen on it’s own without any assistance!  Our appointments with specialists are over!!! We will only return to the cardiologist if our pediatrician detects a problem at a later date. Overall we have two “normal” healthy little two-month old boys! 

Our pediatrician keeps reminding us just how amazing our story really is. He has said things like, "You realize your story is newspaper worthy, right!?"  The fact that Timothy & Connor are now measuring only ounces apart is very rare after what they went through! He suggested that we keep sharing our story as it may provide strength for other parents facing the unknowns of Twin to Twin Transfusion. So if you are a parent facing TTTS (or know someone who is) and you've found my blog through a random search of some sort and you want to hear more details of our struggle and recovery that we've failed to include, please please don't hesitate to write me or comment below!  TTTS can be very lonely because it is so rare.  

TTTS was once viewed as a death sentence. It is amazing how far come in finding life saving measures like the intrauterine laser surgery I had at 19 weeks of pregnancy.   Awareness is key which was one of the main reasons I kept blogging throughout my pregnancy.  Yes, we wanted to keep family/friends in the know and yes we REALLY wanted prayer but we also hoped that maybe just maybe our story would bring new light to TTTS.  Jonny and I know that in the years to come we will commit ourselves to helping raise awareness and funding for TTTS research.  While we trust in God and are people of faith in our risen Lord Jesus Christ, we do not believe that it was our faith alone that healed our boys. Absolutely not! If so then why us?  Why not so many others who yearly lose one or more babies to this horror!?    Our faith wavered and failed many many times through this trial and yet our boys survived! While our faith and the faith of others who were carrying us to the foot of the cross through prayer sustained and strengthened us, God gifted many brilliant minds with the knowledge and skills needed to provide healing for our sons. God used people like Dr. Lim our surgeon at Cincinnati Children's Hospital, or Drs. Moore & Ott (of the Maternal & Fetal care team/high risk doctors associated with Mercy Hospital in St. Louis) who made the initial diagnosis of TTTS and acted immediately upon discovering we had progressed to Stage 4 in one week and would likely lose 1 or both boys without immediate intervention.  I say all of this not to discount the work God has done but to remind everyone that not all stories of "good" bible believing, praying, Christian families who battle TTTS have happy endings like ours.  We will keep you posted as we become aware of opportunities to support research or raise awareness.  For now spread the word...we've been amazed that there are even well educated medical professionals who are clueless about TTTS!  

Thank you for reading and praying for our family, for our boys.  We ask that you continue praying for Timothy and Connor as they continue to grow stronger every day. This blog will now likely turn to stories of the ups and downs of two sleep deprived people desperately trying to figure out this whole parenting twins thing. I can't promise my words will be coherent but who needs logical thoughts when you can provide cuteness like this...

Two months old on June 3!!!
Connor (left) & Timothy (right) 

Friday, April 5, 2013

Update on Connor

Update on Connor:

Connor is still in the neo-natal intensive care unit (NICU) on a ventilator, and will be for the foreseeable future.  Here’s an update on what’s happening and what we think happened with him.

The history: In the process of twin-to-twin transfusion syndrome, Connor was the recipient twin.  The recipient twin is usually the sicker of the two, because they start to go into heart failure due to severe fluid overload (hydrops).  Connor experienced heart ‘failure’ (different than his heart stopping or heart attack) at 19 weeks due to TTTS, this was the primary reason the laser surgery was performed as an emergency procedure late at night.

Since the surgery, Katrina had done a stellar job on bedrest, and after dozens of ECG’s, monitoring, and ultrasounds, 1-3x/week over a span of 17 weeks, his heart had showed good overall improvement, with some ‘mild’ damage (per our pediatric cardiologist).  Due to his history of heart problems, we expected Connor to experience some difficulty after birth, and anticipated a short NICU stay for him.

Fast forward to now: The boys were born at 36 weeks/4 days.  After birth Connor started to experience difficulty breathing.  He was quickly taken to the NICU, and his situation started to worsen, but in a way completely different than expected.  He started to experience difficulty breathing and had to be put on a ventilator.  Instead of having too many red blood cells, as anticipated, he had the exact opposite problem, he had too few red blood cells.  The doctors ran a bevy of tests, trying to rule out brain damage and other problems.  They finally landed on the fact that they think all of his problems are cardiac related due to his heart damage from the TTTS (twin to twin transfusion syndrome), which apparently is more severe than anticipated.

His current treatment plan:  The doctors think his main problem is right ventricular hypertrophy and pulmonary hypertension.  This means that the part of his heart that pumps blood to his lungs is damaged and not pumping very well.  Pulmonary hypertension means that the blood pressure in the blood vessels in his lungs is too high.  Because of this, he is having significant difficulty getting rid of carbon dioxide and having difficulty getting oxygen into his blood.  Therefore, the doctors are trying to ‘give his body a break while his heart heals’.  He is on a ventilator to assist with breathing.  He has nitric oxide through his ventilator to assist with gas exchange in his lungs.  He is on several medications to assist with heart function.  And the one that is the toughest: he is on a heavy sedative to keep him completely relaxed while all of this is happening.  They want him to be completely relaxed, so they want us to refrain from touching or talking to him, as this will stimulate him too much and his oxygen levels drop.

This will not be a quick process.  He most likely will be on the ventilator for an extended period of time.  We do have any idea when we will be able to hold, touch, interact with, kiss, talk to, or love on our baby boy.

Please be in continued prayer for him.  This is an incredibly difficult time for our family.  

Thursday, April 4, 2013

Birth of the Boys: Update from Jonny

Update on 4/4/13 from Jonny

Here’s an update on Katrina, Timothy, and Connor.  The boys were born on 4/3/13, at 10:53 and 10:54 AM.  Katrina’s water had broken the morning prior, and we had been at the hospital for about 24 hours.  As with all twin pregnancies, Katrina had to deliver in the operating room (OR), but wanted to try a vaginal delivery.  After about an hour and a half in the OR, the doctor advised that we switch to a C-section, and about 20 minutes later the boys were born.

Timothy was born at 6 lb 3oz, 18 and ¾ inches long.  He was doing very well at time of birth, and has been able to go to the full term nursery.  He is having some issues with his blood sugar and feedings, but overall has been doing well.

Connor was born at 6 lb 2oz, 19 inches long.  He was having some issues with his breathing, and was taken to the Neonatal Intensive Care Unit (NICU).  In the NICU, they attempted using supplemental oxygen to assist his breathing; when that wasn’t enough they put him on a ventilator.  The NICU doctors were uncertain of why he was having so much difficulty breathing, as he and his brother’s lungs are similarly developed.  They ran a bevy of tests, including x-rays, ECGs, and a brain ultrasound (thinking that he might have had some brain-stem issues that were keeping him from breathing well).  The x-ray and brain ultrasound looked OK.  At this point they are still unsure, but think that the problem breathing might be due to Connor’s heart damage from the Twin-to-Twin Transfusion Syndrome.  They also placed him on nitrous oxide to help dilate the blood vessels in his lungs.  This will help reduce the work his heart has to do.  They are trying to keep him somewhat sedated through medication as well, so that he can relax and help his heart heal.

Please continue to keep our family in your thoughts and prayers.  For Katrina as she recovers from major surgery and exhaustion from labor, and tries to keep up with feedings for Timothy and going to a different part of the hospital to see Connor.  For Timothy’s blood sugar and weight to do well.  And for Connor’s heart to heal and for his breathing to stabilize, as well as giving the doctors wisdom to know what is going on.  And for myself trying to keep up with everything.

Thanks from our family! (Connor on L, Timothy on R)

Saturday, March 30, 2013

36 Weeks-Say what?! We made it?!

It’s hard to believe but we’ve made it to 36 weeks!!!  My doctors were all smiles this week and each appointment felt like a celebration for the most part (minus of course the horrible discomfort of long ultrasounds on my back and monitors awkwardly attached to my huge overinflated belly-still hate that word but I do like it better than tummy).  One of the nurses even made us non-alcoholic mixed drinks to celebrate during monitoring!

Each day for the past two weeks I have woken up feeling like I am living an out of body dream with the realization that I am still pregnant (too bad I can’t actually be out of my body for a little while though)!  With each day of growing aches, pains, trouble breathing and even heart racing, I don’t forget for a minute just how much of a miracle this really is!  Don’t forget the surgeon/doctors who performed the life saving Twin to Twin Transfusion laser ablation surgery at 19 weeks set a goal of me reaching 30-32 weeks!!!  At that point survival of our boys was the only goal and anything beyond that was said to be hopeful thinking.  Now we are just days away from a full-term twin pregnancy with boys who are measuring at weights rivaling “normal” healthy twins!  On average twin moms deliver around 35 weeks-which we officially passed today-seriously-that’s crazy in all the right ways!  

So at this point contractions are no longer a big fear inducing concern! If I went into labor from this point on they would not intervene, our babies are safe.  Of course the closer they get to 37 weeks the healthier they will be.  So the plan is that if I do not go into labor naturally I will be induced on Monday, April 8!! We have an official end date-an official birth date! Crazy! I have now been on bedrest for 18 + weeks –that’s right 4 months of putting all thought and effort toward keeping our miracle babies IN.  Now it’s time for them to come out??  That’s a difficult thing to wrap my brain around.  Doctors have said I can stop taking one of my daily medications (prescribed to prevent contractions) as of today. Unfortunately it’s not the medication with the crazy side effects-Procardia-that one I have to stay on until birth because it has proven to be effective in helping babies to heal post TTTS surgery.  I have also been told I can slowly begin resuming activity…which is good because in order to be ready to be a mom of two I need to regain energy, stamina, etc. lost during bedrest. The only problem with that is that this is the point when most women pregnant with twins STOP normal activity (even without doctor mandated bedrest) because of how difficult it becomes. 

A week ago I spent several hours late into the night at the hospital because of just how miserable my body had become!  After a whole day of heart palpations and shortness of breath I called my OB office and they instructed me to go to the hospital.  I was tested for everything under the sun-even flu, which I had no symptoms of. Results came back showing-NOTHING! Basically the only thing they could say was that my body is just overtaxed from having twins-yikes! So needless to say I’ve had other days like this since-miserable!  The worst part of the hospital visit was that I was pricked multiple times and a bloody mess because the nurse could not get my IV in.  This as well as drawing blood is a common problem with me because my veins are so small and often “blow” when they attempt to tap into them (lovely I know-thanks Dad-that’s who we think I inherited the problem from).  So the plan is that the next time I go to the hospital we will immediately request that someone from Anesthesia be called to place the IV.  This is something I wouldn’t mind prayers for!  I really don’t want to have to deal with this in the midst of labor.  Please pray it goes smoothly.

They kept me that night until almost 2am because the boys, mainly Connor showed erratic heart rates.  It all worked out fine though and seemed to be a fluke.  With each and every monitoring we do (now twice a week) the boys look great!!  Both are head down giving me the chance to attempt a “normal” vaginal delivery-again a miracle if you ask me!  We are prepared though that an emergency C-section is always a possibility. Just the chance to try is something I really didn’t think would happen and am SO happy about. 

This week we’ll be back at the Perinatal center for scanning and monitoring on Monday & Thursday, as well as at my OB office on Wednesday- our bags stay packed in the car.  Our last appointments!  So, THANK YOU for your prayers, meals, encouraging cards, care packages, and kind words that have sustained us through this difficult pregnancy!!!  Your prayers can now shift to a healthy delivery.  Wow-can’t believe I just typed that-life is good!  

Happy Easter! Have a joyous Resurrection Sunday-my favorite day of the year!  

Blessings & Love,

Ps. If you want to throw in some prayers for my exhausted and miserable body and attempt to resume some activity that would be ok too.  

Thursday, March 21, 2013

Still Cookin'

Today (34 weeks & 5 days) was a long day of appointments. Morning: Perinatal Center for monitoring and an ultrasound. Afternoon: OB office for weekly checkup.  The result: No change!
 Connor & Timothy are still cookin'!! 

We'll be back at the Perinatal Center on Monday bright and early with our bags packed (just in case) for another round of monitoring and ultrasounds.  We are so thankful that our boys are growing, growing, growing as they should be and defying all the odds...even if I do feel like a giant water balloon (see previous post).

Tuesday, March 19, 2013

How are you feeling?

How I physically feel tonight as described by google images...

I am now measuring what a woman pregnant with one child would be around 47 weeks!  

That is all.  

Monday, March 18, 2013

"I prefer to wear suspenders with my Belt"

This morning we went back to the Perinatal Center as directed, with our bags packed ready to be admitted if needed.  Monitoring showed the boys are still active and doing well.  Then on to the ultrasound for a look at blood flow and of course-the ductus.  Ultrasounds take a lot longer these days considering we have to stop so often so I can sit up so as not pass out from all the weight bearing down on me, making me short of breath and causing my heart to race-ahhh the joys of the final weeks of a twin pregnancy! Each time we are at the Perinatal Center we see one of 2 or 3 high-risk doctors.  We have seen Dr. Ott quite a bit in recent weeks because he is considered to be the expert in the group at viewing blood flow to the heart. He told us today that nothing has changed and that he feels good about   it. He told us there was some debate among doctors about how important it even was to continue to check the ductal flow when so many other factors showed nothing but positive signs of good/improving health.  Apparently just today he and another doctor from the team were reading a newly released medical journal article which basically stated in a nutshell that there is no real consensus on the best way to monitor a pregnancy post TTTS laser surgery!  There just isn't a large enough sample group of women experiencing TTTS, because it is so rare! His response to all of it was to tell us that he thinks we should continue what we are doing, since things are going so well. In other words continue the same monitoring and continue on the same medications.  In his own quirky way he put it into laymen terms his reason for continuing to check the ductal flow saying, "I prefer to wear suspenders with my Belt!"

Today was just another reminder of the fact that just a matter of 10 or so years ago our boys would not likely have survived TTTS.  The laser surgery is fairly recent! It's such a great feeling to watch doctors smile in pure joy as they realize our story for the first time and recognize that modern medicine is advancing and saving lives!  Even more reason to spread the word for awareness and support of research!  Here is a good site to check out and a good page to "Like" on Facebook.

So we'll be back on Thursday bags packed again, if all goes well then we'll return on Monday and continue with twice a week monitoring from here on out.  Today I am 34 weeks and 2 days and so happy to be able to provide a safe space for my miracle babies to continue to grow as they are intended to do a little longer! I may complain and whine about how uncomfortable I am but I don't forget for a second just how incredibly blessed we are!  Please keep in mind that prematurity is a very big deal! We do NOT want to rush this and are so happy that our doctors think it is safe to let me go as long as possible up to the 37th week.

Now if you'll excuse me this pregnant woman has a date with a bag of Reese's peanut butter easter eggs!  One of the more superficial reasons why Easter truly is my favorite holiday.

Thanks for your prayers & support!

Friday, March 15, 2013

Ductus Confuse-Us!!

Well it's been a very confusing and long day but we are home now believe it or not!  We arrived early this morning at the Perinatal Center for monitoring, both boys looked good just as they did yesterday. After more waiting we then went in for a more detailed ultrasound to get a look at the ductal flow that was the big concern yesterday. The nurses were speaking to me all morning leading into the ultrasound as if they were sure I was going to be admitted today and likely induced tomorrow.  However, the ultrasound tech had a horrible time getting a good reading of Connor's ductal flow because he was "practice breathing" which was preventing her from seeing things clearly.  Basically the doctor took a look and said that because the blood flow through the umbilical cord looked so good and other indicators did as well, that I will not go into because they are so confusing, they didn't see any reason to keep me overnight at this point.  So we will return early Monday morning & repeat this process and if we then get sent home again we will repeat it Thursday as well.  We were a little uneasy about leaving the hospital with what felt like inconclusive results but we trust that there is no way they would send me home if they had real concerns. They have been so good to us and so cautious throughout the pregnancy we just have to trust & wait and see.  It was good also to get the second round of the steroid shot that will help develop the lungs of the boys more quickly.  We are grateful the boys can continue to grow and mature in the womb. Each day that goes by is important, gestational age matters!!!  We are in no rush.  We are however anxious, not knowing, of course, what will come.  For now they look good and that is all that matters.  So I'm at home now and ready to sleep the day away-EXHAUSTED! Jonny has of course gone back to work as vacation time is so precious to us.

We will keep you posted.  Please remember you can sign up with your email address for notifications each time we post something new. It is to the right of your screen. Just enter your email address and you'll get an email telling you that you are signed up. Make sure to check your spam folder!

Love & Blessings,

She Said Pack!!!

RECAP OF WEEK 32:  Our appointment with the cardiologist was very encouraging. He did see damage in our Donor baby’s heart (Baby A-Timothy), something he had not previously seen.  This was not surprising and was said to be so minor that only now could he see it because of how much larger the boys had grown-thus the heart is bigger.  In other words the damage was not new but rather came from the stress of Twin-to-Twin Transfusion prior to the laser surgery. He still said that hearts of both boys did not appear to have any problems that would be present over time outside of the womb.  He was so sweet as we said goodbye, stating this was likely our last appointment with him but that he would be on call for us after the boys were born in case there was a problem.  He encouraged us multiple times to come by with the boys after they were born so that he could officially meet them. 

We also had a consultation with a NICU (Neonatal Intensive Care Unit) doctor to ask questions and gather information about what the immediate days after the boys might be like.  What we learned most importantly was that it was not size that would dictate if or how long the boys stayed in the NICU versus going to the “normal” full term nursery, but rather what week they are born.  He really put us at ease and seemed very confident after reviewing medical records that most likely things would run very smoothly since the boys had already passed the 30-32 week range. Of course their lungs still have developing to do so there is no way to know exactly what will happen upon birth. Contractions were few and far between during week 32.  As the boys grew, and boy did they, I became more and more uncomfortable-as is to be expected! 

****TODAY 33 WEEKS & 5 DAYS: Hard to believe we’ve made it this far!!! My personal goal all along has been 34 weeks because that is a milestone in lung development and we are just two days away!!!  This morning we went for our weekly ultrasound and monitoring.  This was the week we would see a growth check and find out just how big our boys have become, something we’ve been very eager to see.  We were a little surprised to see both boys are measuring around or just over a whopping 5lbs!  Now this of course is an estimate based on an ultrasound so they are somewhere between 4-6 lbs in reality.  The perinatal center staff made sure to make a big deal out of the fact that I was carrying around 10 lbs of baby!  It honestly felt like validation for just how miserable I’ve been feeling-that’s a lot of baby!  Let’s just say the massages from Jonny came a lot quicker after learning that.  Everyone seemed so excited for us and yet felt so sympathetic for what I am feeling in terms of aches, pains, and sleepless nights.  Again, what a blessing, there was a time when this was only a dream one the doctors today said they hoped for but just really never expected to come true!  We are praising God that our boys are breaking all the rules of TTTS!  

****Now for the BIG NEWS:  During today’s ultrasound it was discovered that our recipient baby (Baby B-Connor) has had a change in the ductal flow of blood to his heart.  One that has to be acted on soon.  This could get very confusing, it was for us, so I’ll try to keep it simple. Basically despite the fact that monitoring showed he is active and doing well his heart is beginning to show strain again because he is getting so large and it is time to get him out.  Because we have not yet reached 34 weeks of gestation we still have time for a steroid shot which can actually help the lungs develop properly.  So they gave me the shot and sent me home for the night with instructions to come back in the morning for observation packed and ready just in case.  If tomorrow observation shows that nothing has changed I will either be admitted for further observation for the weekend OR they will send me home expecting that I will come in Monday morning for further testing and potential delivery.   If in the morning they see further issues with the ductal valve I may be delivering TOMORROW!  Here is what is so confusing-they don’t think he’ll have any significant problems outside of the womb, though they will DEFINITELY go to the NICU for extra care just in case.  Obviously the longer the boys stay in-utero the better IF they do NOT appear to be at great risk. The reason for getting them out is because as he continues to grow the strain in the womb will likely be detrimental to his heart. 

Both boys have been HEAD DOWN for the last several weeks-meaning I have the option to attempt for a vaginal delivery, which I consider to be a huge blessing!!!  Our cardiologist has said he sees no reason to avoid at least attempting a vaginal birth.  We even went as far as contacting our TTTS laser surgeon in Cincinnati, a man we will forever dearly love, Dr. Lim, and he gave us the all clear as well based on the boys being head down!  MY OB however is nervous about the fact that after all I have been through with this pregnancy she does not want my birth experience ruined by the possibility of a vaginal birth with the first baby followed by an emergency C-section with the second.  Apparently it is possible that once the first baby comes out the second can then spread out with all the extra room and put himself in a breech position or worse gets tangled in the umbilical cord.  Thus I would have to not only recover from a vaginal birth but also a C-section.  Her suggestion is to simply have a Cesarean Section to begin with. I appreciate her concern for me but I have always said, since day 1 of this pregnancy that I did NOT want a C-section but I would do what was best for the boys at the time.  I have prayed for weeks that the choice would be obvious and dictated by the position of the boys.  Well as of this morning they are STILL head down!  Please pray for me (and Jonny) as we make this important decision.  Right now, I am ready to at least begin labor with the intent for a vaginal delivery, but I am more than willing to go with the flow right into surgery if it is medically necessary.  Both boys will be closely monitored the entire time and regardless of method of birth with twins you are required to deliver in an operating room, just in case.  There will be a team of doctors/nurses for each boy in the room with us…a Three-ring circus?  YES! I’ve come to accept this.  I try to think of it like my boys are a big deal, like little celebrities-only the best for them ;) 

So all in all today’s news is not bad news-it just means the boys are coming soon!  When?  Good question-We’d really like to know!  Right now we must wait and see and do our best to be with bags packed. 


1.     For our doctors, nurses, etc
2.     Please pray that God will make it glaringly evident what is best for the boys over the next few days
3.     Please pray that decisions will be made with clear heads and NOT out of fear! 
4.     And of course please pray for peace for two nervous individuals (that would be myself & Jonny in case you are wondering) who are about to have their lives changed forever sometime in the next several days as they (we) become parents!!!

There are many many risks to babies being born this early but God has already brought us through so much and we are leaning on God now to see us through these final days of pregnancy, however short or long they may be.  We will keep you posted! 

Love & Blessings,

Monday, March 4, 2013

32 Weeks-Debbie Downer Speaks

Not much has changed.  Still pregnant and happy to be.  The boys are still growing and remaining strong. There seems to have been confusion voiced by some people in my life about the fact that my doctors set a goal for me to reach 30-32 weeks before delivering. While reaching 32 weeks is reason for celebration I want to clarify that the goal is NOT to have the boys anytime soon.  32 weeks was the goal set after surgery when survival was our only goal and every day was a new milestone. In NO way do we, or my doctors, want the babies to come anytime soon.  The longer the babies remain in utero the healthier they will be.  Just to give you an idea of how important each passing week is for the development of a baby check out this chart I found on Pinterest…

We’ve come so far and I don’t take that for granted for a second!  I feel very blessed and grateful. However, we now have a glimpse of what might actually be a “normal” twin birth and hospital stay (full-term for twins is 37 weeks) and I will do everything I can to make that happen.  While there is not much I can do, there is a lot I can avoid.  For the past few weeks, every couple of days I experience a series of Braxton Hicks contractions. They don’t necessarily hurt they are just very uncomfortable, sometimes take my breath away, and definitely make my heart race. The worst though is when the contractions are combined with other symptoms of preterm labor like a dull ache in my back and abdominal cramping-honestly the cramping is the most miserable part!    Each time I experience contractions I follow the rules by stopping everything, drinking lots of water and lying down on my side. Luckily they always seem to go away. The rule is 5-6 an hour, 10 minutes apart or closer necessitates a trip to the hospital.  I’ve been using a chart like this to help me stay calm and remember the difference between truly being in labor and experiencing false labor…

While my OB has told me it’s ok to lighten up on my bedrest (meaning I can start doing small activities around the house-simple things like folding laundry-while still sitting of course) she has also made it clear I must listen to my body.  Trust me when contractions hit my body screams at me and I listen!  It’s tough though because it’s not always easy to tell the difference between contractions and other things like both babies deciding to roll around at the same time-OUCH-they are getting big enough that this is quite uncomfortable.  A lot of the symptoms I experience from IBS can also easily be confused as preterm labor.  I’m learning that the amount of water I drank earlier in pregnancy is just not enough anymore.  Dehydration is a huge cause of false labor contractions.  So if anyone wants to challenge me to a drinking contest go for it! It keeps me motivated. 

This week will bring very important appointments.  On Wednesday evening I’ll meet with my OB to talk more specifically about a birth plan.  On Thursday I will start weekly monitoring-it is exactly what it sounds like-me hooked up to monitors in the Perinatal Center for an hour.  We’ll then see our cardiologist for an update on their hearts-honestly the most important visit we’ve had in a while in my mind.  It’s been a month since we saw our cardiologist and we are very eager to hear how Connor’s heart is doing.  That appointment will then be followed by a consultation with a NICU (Neonatal Intensive Care Unit) doctor.   What I would love to hear is that our boys are doing so well that they doubt the boys will even need a NICU stay, but of course no one can predict that.  There are so many factors it will depend upon, the basic being how early they are born.  It is very likely they will spend at least a few days there regardless of size.  I just hope we don’t have to go through weeks in the NICU like so many TTTS survivors and twins in general do. 

I have to admit my nerves are on edge with the increase in contractions and worry about when the boys will come.  As much as I try to relax and not think about it, it is hard to stay distracted with so much time to sit and think on bedrest.  Bedrest is also really wearing on me-this week makes 14 weeks!  Nearly 100 days with very little freedom has really taken a toll on this independent girl.   The nesting instinct has definitely kicked in and not being able to act on it is so hard.  I worry that no matter what type of delivery I have the recovery will be incredibly difficult after being inactive for months.   If one more person tells me, “you’ll have plenty of time for that soon!” I might lost it.  Really?  I’m going to have time to get organized and go run errands once I have 2 infants!?  I think not.  I realize I should probably write my own, "what not to say to someone on bedrest" list but for now you can enjoy this list made by a woman on hospital bedrest-I am so thankful I have at least been able to be home for bedrest.

Ok enough negative Nancy & Debbie Downer for one day.  Thanks for reading and allowing me to vent.  I promise to bring back Polly Perky Pants for the next blog post-maybe.  But seriously, we really are thanking God to be at 32 weeks with two miracle babies!  We’ll keep you updated as things progress.  Please keep both Jonny and myself in your prayers-we try to take it all in stride, trust in God, and simply live day by day, but let’s face it, it’s incredibly difficult at this point.  If you want to volunteer your time helping Jonny get the house/nursery ready let us know. We won’t turn you away! 


Monday, February 18, 2013

How I Spent My Saturday-In The Hospital

Saturday started out as a day of celebration (nothing special-just our shared mood) for reaching 30 weeks of pregnancy.  Midway through the day however I started experiencing signs of preterm labor- mild low backache, cramping, a few mild contractions, etc… The same had happened the day before so when the symptoms wouldn’t go away after about an hour I decided to call the weekend exchange for my OB’s office. My own doctor happened to be on call and returned my phone call within what felt like seconds. In mid sentence as I was saying, “I doubt this is anything but…” she cut me off and insisted I not take any chances and go directly to the hospital for monitoring.  So we did.  I was soon after hooked up to 3 monitors-1 for each babies heart, and 1 for contractions.  I suddenly got very nervous when the nurse confirmed I was having contractions I wasn’t even feeling.  Blood was drawn, urine was tested (TMI? Sorry-but at this point I’m writing for other women who may have to experience this. Trust me they want details!), and an IV was put in.  A resident doctor came in-did an ultrasound on the babies (both looked good), did more than one exam (that would be TMI so use your imagination),  and then left to call my doctor to see what she advised we do.  At that point we were convinced that no matter what they said I’d be admitted over night.  Honestly, I was worried I’d end up on hospital bedrest…not something anyone wants! As the IV bag was nearly empty I was feeling so much better with barely any symptoms left.  All tests were showing it was probably just my uterus being irritable-something they say could continue to happen through the rest of my pregnancy because of the amount of weight/pressure being put on it by twins (one of the many joys of carrying twins).   Because I’m already on two medications to prevent contractions-they sent me home!  Relieved-yes.  Still nervous-of course!

So this is the life of a twin pregnancy apparently.  It was a miserable long day but we were treated so well and because it was the weekend I was actually sent to a Labor/Delivery room rather than Maternity Triage.  It’s all brand new! The rooms are huge & BE-U-tiful! Seriously, it had a Jacuzzi tub that I have to admit I wouldn’t have minded staying to use.  Since coming home though I haven’t really had any more problems.  I haven’t really mentioned contractions in my blog but I do have them from time to time-never more than 2 an hour though until Saturday.  The rule is not to worry unless you have between 4-6 in one hour.  Although they ALL tell me call if I am worried.  Having twins (and of course Twin to Twin Transfusion) makes them super cautious with me. So we’ll chalk this up to just another hiccup along the way.  Not that I needed a reminder, I didn’t, but it is motivation to keep obeying the rules of bedrest.  Although, bedrest isn’t that hard at this point considering I am always exhausted!

Since leaving the hospital I’m been drinking water like a champ-dehydration can lead to contractions.  All is well again, I’m back to normal pregnancy woes of waking up 2-3 times a night to go to the bathroom, not being able to stay comfortable in bed, heartburn, shortness of breath, you know the glorious miracle of life stuff.  I’ll take “normal” pregnancy woes at 30+ weeks over the trouble we’ve had earlier in the pregnancy any day! At this point I’m measuring at what a singleton mom would be at just over 40 weeks. Somehow being sent home from the hospital has given me a little bit more peace of mind.  Plus, reading online message boards from other women who are around 30 weeks pregnant with twins makes me realize, I’m not having nearly as many contractions as most of these women.  Maybe we really will make it weeks longer- I sure hope so…the boys have so much more developing to do.  Prayers would be greatly appreciated.  30 weeks is a milestone but it does not mean we are out of the woods for health risks. Thanks for reading.  Thanks for praying.  Thanks for loving.  


One more thing- People have been asking about the beautiful necklace my amazingly sweet husband got me for Valentine's Day shown in my last post. It came from this Etsy shop.