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) 

"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!

Bad News/Good News back to STL we go...

From Jonny: 

Today we returned to the hospital for our post-surgery check up. It was another crazy day of testing at Cincinnati Children’s Hospital.  It was a very mixed bag, in the sense that a few things were better, a few things were worse, and some items continue to be ‘stable’.  Here’s where we stand in our current situation. 

Both babies are alive and have heartbeats.  Though the donor twin (Baby A-smaller baby) continues to have mild to moderate problems, he is doing well all things considered.  To explain: In twin-to-twin transfusion syndrome (TTTS), there are 5 stages.  Stage II is that the bladder of the donor twin can no longer be visualized on ultrasound (US).  When we had surgery, our staging of TTTS was considered stage IV because the recipient twin (baby B-larger baby) was experiencing significant hydrops (fluid throughout the body including stomach, lungs, and skin) which is the primary sign of heart failure.  Throughout this entire experience, Baby A has continued to have a bladder that can be visualized on US, which means that he is doing ‘abnormally well’ (though still having problems), considering how severely sick his brother is.

The recipient twin (Baby B) continues to have severe hydrops (fluid throughout the body) and severely impaired cardiovascular function.  The good news is that there are no structural abnormalities in the heart, but the function of his heart continues to be very poor.  We had an echocardiogram the day after surgery as well as today, and the pediatric cardiologists told us that the function of the heart was primarily the same or perhaps a bit worse than the day after surgery.  Our surgeon, Dr. Lim, did state that it typically takes 4-8 weeks for hydrops to resolve and cardiac function to improve, and he is still hopeful that this will happen.  However, one conversation that we had with him today that was very hard to hear, was that he re-iterated that one of the purposes of the surgery was to protect the donor twin if the heart function of the recipient twin worsened and he did not survive.

Katrina is still at risk for pre-term labor, and although her cervix is still quite shortened, it has not gotten any worse, and may be a slightly better than it was 5 days ago.  Dr. Lim did note, that since we did not see any significant progress with the length of the cervix in the first few days, the changes hereafter would most likely be small.  Therefore, Katrina will be on strict bedrest and high dose medication throughout the rest of her pregnancy.

They boys are currently weighing 13 oz and 15 oz, with only a 12% discordance in weight, which is an encouraging sign.  The amount of fluid around each boy continues to be stable (prior to the surgery, Baby B had a severe amount of extra fluid surround him in his section of the uterus, that’s why they had to withdraw 2.5 lbs of fluid during the surgery.  This is external fluid is not to be confused with the internal hydrops or swelling in Baby B, which cannot be directly affected or withdrawn).

The surgeon has released us to travel back to St. Louis.  Katrina will continue to be on bed-rest.  We will have weekly ultrasounds.  We will have echocardiograms to measure each boy’s heart function every 2 weeks.  Katrina also may have to go to 2-3 additional visits per week for monitoring and appointments

Please continue to pray for Katrina and the boys.  Pray that Baby B’s heart function improves and the fluid in his body reduces.  Pray that Katrina does not experience pre-term labor, as the boys are only 20 weeks.  And pray for peace and strength for Katrina and myself.

We also set up a link on reputable website that people could donate to if able, to help us out with our growing medical bills.  Here is the link...

http://www.gofundme.com/1nmhq8

Thank you so much for your help and prayers so far on this long and difficult journey.

What specifically to pray for:  

1. Improved health of both babies but baby B in particular. He is referred to by the doctors, nurses, etc. as "a very sick baby" 

2. A safe trip back to St. Louis with no hospital stops! 

3. NO contractions-NO preterm labor! 

4. Peace and strength for both of Katrina & Jonny

After Surgery-Katrina's Perspective

Today I (Katrina) am 20 weeks pregnant with two baby boys, uncomfortable & incredibly sore from surgery, relieved that my babies made it through another night, exhausted from the last few days, nervous about the future yet hopeful, emotionally drained, overwhelmed, humbled, and even a little shocked by the number of people far & wide who say they are praying for us on Facebook. 

Please, please, be careful not to pass on inaccurate information or your own interpretation of what is happening with my health or the health of the babies. Please read the following or at least skip to "Here is Where We Stand Now"…

Thursday morning at 7:30 AM (CST) we arrived for a check up with the high-risk Dr. at the Perinatal Center in St. Louis.   Knowing this could be a life-changing day Jonny and I spent the evening prior alone together talking, laughing, crying, and dreaming about the future for our two sons.  We arrived understandably nervous but generally calm and prepared for whatever may come with hours of research about Twin-to-Twin Transfusion under our belts. At the appointment an ultrasound was administered and then we waited for the Dr. to review the findings.  While waiting I went into the adjoining bathroom & as I reentered the room before I could even sit down I heard our Dr. enter the room and immediately begin telling Jonny, “this is worse than I could have imagined, we have to move fast, you need to prepare to go to Cincinnati today.”  The rest of the day happened so lightening fast it is a blur.  Dr. Moore (our high risk Dr.) did another exam and told us not only had the TTTS progressed but my cervix was also shortening & funneling, as if to signal my body was preparing to go into labor.  At 19 weeks gestation this would be considered a miscarriage, babies cannot survive outside of the womb until much, much later.  Baby A (the donor baby-aka smaller baby) looked surprising good yet Baby B (the recipient-aka larger baby) was showing signs of his heart failing and the fluid around him had drastically increased. 

We left there and rushed back to our apartment and began packing. Next thing we knew we were on the road to Cincinnati with our dog in tote to drop off in Louisville with my Mom.  We arrived at the Cincinnati Children’s Hospital a little after 6 pm (EST).  As one of our new favorite doctors said we flew by car!  From there I was literally run by wheel chair into an exam room, shortly after Dr’s confirmed all of what Dr. Moore had said and stated we were at Stage 4 of TTTS.  It was after hours and the unit was shut down but doctors, nurses, and other medical professionals came back from home just for our emergency situation! Talk about humbling! A flurry of tests and preparation then began to prepare me for surgery.  At one point I had an Echo-cardiologist scanning my belly (for the record I hate the word belly) to check the hearts of the babies, another doctor poking at me to check for swelling and reflexes, two residents hooking up monitors all over my body, two nurses drawing blood and putting in an IV by the light of a cell phone so as not to disturb the low light needed for the ultrasound, and during all of this an anesthesiologist asking me detailed questions about my medical history.  It was insanity to say the least! 

Going into surgery we knew that the larger donor baby (Baby B) was experiencing hydrops, or fluid in multiple parts of his body including the heart.  His heart has no anatomic defects (very, very good news) however the fluid is causing his heart to pump abnormally, and could cause his heart to fail, of course leading to death.  If he were to die at that point Baby A would also pass because both boys were linked by blood vessels in the placenta (I am sorry to be so blunt but Jonny & I are realists and it is the best way we know to cope). Obviously for me the rest was a sedated blur.  Dr.’s told me later they were able to successfully remove 2.5 lbs of amniotic fluid from around the! Hello! This being my first pregnancy I had no idea that the misery I had been experiencing with that much extra weight- I thought it was normal with Twins & even the doctors had told me there was no way I could have known. 

So here is where I’ll copy in what Jackie already said so well for us in a previous entry… “They started the surgery around 10:20 and were finished around 10:45.  They worked very quickly and very efficiently.  There were 25 connections that were severed between the two twins.  This will hopefully allow both babies to get close to equal amounts of nutrients - so one baby is not getting more than another.” 

HERE IS WHERE WE STAND NOW: 

Dr.’s are VERY optimistic, based on other cases of TTTS surgery, that Baby B’s heart will begin to heal on it’s own.  As long as there are no other factors of illness there is a very good chance of this.  Baby is currently still very sick because of the Hydrops (fluid on the heart).  Please specifically PRAY for his heart and sick body to heal.  The other great risk that still exists is preterm labor. I have been put on two very powerful medications to prevent contractions and will remain on a much more restrictive bed rest (no more midday errand runs, I'm allowed up to the bathroom and kitchen and that’s pretty much it!).  PLEASE continue to pray that I do NOT go into labor for at least another 10 (hopefully more!) weeks.  We have been released from the hospital and will be staying in a Cincinnati hotel until at least Tuesday, when Doctors will once again run tests.  At that point they may clear us to go home.  Back in St. Louis I will remain on bed rest, continue to see the High-risk doctors there, and we will simply wait and see in the weeks to come.

Exhaustion has set in for us and I have unfortunately been turning away visitors because I just need some time to heal from the surgery.  I can’t tell you what it means to us to see the level of support we are getting.  Logging onto Facebook has been utterly mind-boggling! I had no idea we would get this kind of response when we asked for prayers.

There is a long road ahead for us we ask that your enthusiasm to pray for us will continue in the many weeks to come as we wait on the Lord for healing!  The more rest we get the more peace is settling over us! We could not have asked for a better team of doctors, nurses, and hospital staff! 

*Many of you are reaching out & asking how you can help us at this time. While we are in Cincinnati, if you are in the area and would like to provide a meal for us, please contact my amazing friend (and Sorority Sister) Courtney Tabor at cpltabor@gmail.com

    I will need at least another day or more before I am ready to entertain visitors-please understand-I hate saying that but I think it is best! 

    We will let you know more about our time back in St. Louis when we know more.

An update...Please continue praying.

Hi all.  I'm writing this post on behalf on Katrina & Jonny.  Katrina is currently at Cincinnati Children's Hospital in recovery.  An amazing team of doctors and nurses took amazing care of her and did the surgery tonight.  They started the surgery around 10:20 and were finished around 10:45.  They worked very quickly and very efficiently.  There were 25 connections that were severed between the two twins.  This will hopefully allow both babies to get close to equal amounts of nutrients - so one baby is not getting more than another.  The ratio after the surgery was about 60% for one baby and 40% for the other.  For this kind of surgery, the quicker the doctors could do it the better and they did it in 3 minutes 18 seconds.  This surgery has only been performed 3000 times throughout the world, and 650 of those times was done at this hospital, by this team.  So, she is in good hands.  HOWEVER, Katrina and the babies are not out of the woods yet.  This was only the first hurdle.  With the surgery that Katrina underwent, the survival rate for the first baby is 90% and 60% for the second, however, because she is at risk of preterm labor, those percentages dramatically decrease.  Katrina is in great danger of going into preterm labor.  Basically her body has started to prepare for labor.  They were able to remove quite a bit of fluid, which is good for both babies and Katrina.  The goal is that the babies will wait until 30-32 weeks to come.  Because she is at such great risk of preterm labor at 20 weeks already, we need to be lifting up some serious prayers.  It's going to be a long road and this could mean some serious bed rest for Katrina.  Please please pray with us that both babies will now continue to grow at a healthy, equal rate and especially that they can hold labor off as long as possible.  Katrina will be here in Cincinnati for a while so they can keep an eye on her and the babes.    When we left she was in good spirits though and talking with us.  I will update you as often as I can and I'm sure she will whenever she feels up to it!  Please put Katrina and the family on your prayer lists and pray with us that labor will hold off for at least the next 10 weeks!