An update on Katrina (22 weeks!) and the twins…

From Jonny:

The last week has been crazy busy/stressful for us.  Now that the laser surgery has been performed, we are in a ‘wait and see’ mode to see how the boys respond.  The main concern is to monitor the function of their hearts and the amounts of fluid in their bodies (especially in Baby B: the recipient twin).  We will be on a schedule where we receive an ultrasound every week, and an echocardiogram every other week.  One of our surgeons cautioned us that improvements would most likely occur over a 4-8 week period (we are now 17 days after surgery).  

So…on to the appointments we had Thursday.  The amount of fluid (hydrops) in Baby B’s body has decreased.  He still has a significant amount of fluid in his stomach, but he no longer has noticeable fluid surrounding his heart, lungs, or skin.  Improvement in cardiac function is very difficult to measure, because some of it is very subjective (descriptive).  One of the few objective measurements (using numbers/data) that they use is heart size.  Normally functioning hearts take up about 30% or less of the abdomen.  When a heart is very sick, it increases in size because it has trouble keeping up normal heart function.  At the time of surgery, Baby B’s heart made up 43% of the area of the abdomen.  On Thursday, the pediatric cardiologist reported that the heart had decreased to only 38% (great news!).  And even though subjective reports from two different doctors (Cincinnati vs. St Louis) are very hard to compare, he rated Baby B’s heart problems as moderate (which is greatly improved from the grading of ‘severe problems’ at the time of surgery!).  And Baby A continues to do abnormally well considering the circumstances, and the pediatric cardiologist rated his heart as nearly normal!

We are trying to be cautiously optimistic.  We know that we still have a very long road ahead.  Katrina will be on bedrest for the duration of the pregnancy, and there is still a very likely possibility of premature births and NICU stays.  She is currently at 22 weeks, and we are hoping to make it to 30-32 weeks (that’s one of the goals our team at Cincinnati set for us).  But the boys are doing about as well as could be imagined at this point in the process; based upon how severe their problems were at the time of surgery and how close we were to losing them.  We continue to be incredibly thankful that the entire team at Cincinnati Children’s came back in from their homes to perform surgery just a little before midnight.

On a side note, this has been one of the most stressful weeks of our lives.  Due to the way that the schedule worked out, after our doctor appointments on Thursday, we actually closed on our new house later that day, and moved in yesterday (Saturday).  We are incredibly excited to have a home that is big enough for our growing family, and also excited that I am only 5 minutes away from work now. 

We feel incredibly blessed by the outpouring of help and concern from friends and family.  I can assure you that we are incredibly thankful, even if we had not had a chance to respond or thank you yet.  Please continue to hold Katrina and the boys in you prayers.

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!

Bed Rest-Day 7

Today's post is dedicated to simply saying THANK YOU! I have been overwhelmed by the support that I have received from family and friends far and wide over the past few days.  Encouraging texts, phone calls, and Facebook messages have been so uplifting. 

My Mom made the trip over to help us out. Because we close on our first house on Dec. 20 we are breaking our apartment lease! Yes, we will lose our deposit but we will also pay rent for every month our apartment sits empty. So we decided now is the time to get the rental back on the market with hopes of finding either St. Louis University or Washington University students looking for a new place to live for the new semester.  AKA-we have to be out of this apartment by January 1! So getting our current apartment cleaned up is a top priority for those we hope will quickly come to view it.  Obviously with bed rest I have been banned from housework so my Mom came to the rescue!  She cleaned like a mad woman and the apartment has never looked better. After she left last night I went to brush my teeth and thought, something is different. Me: "Jonny did you clean our electric toothbrushes?" Jonny: "No!" Yea my Mom is pretty thorough and I'm pretty blessed! Actually her timing was perfect because late last night I got an email and a girl is coming to check out the place tomorrow!! So fingers crossed & prayers going up maybe we can actually have this burden lifted from our shoulders!

My in-laws have also been AMAZING! I received these beautiful flowers from my Mother-in-law,Father-in-law, & Grammie Grandmother in law :) in a delivery the other day (yes bed rest makes you lose track of what day of the week it is)...

I also received a bed rest care package from my Sister-in-Law (Jonny's sister).  

It included: 

• Trashy magazines perfect for reading while dealing with pregnancy induced ADD 
• Body butter to prevent stretch marks
• Nutritious snack bars said to be a good complement to prenatal vitamins
• Candies that help with nausea 
• And my favorite...a Gift Card for maternity clothes that can be used online so I can find the right lounging clothes. Maybe I can finally stop wearing my husband's gym shorts because even those are getting too small! 

This morning I was blessed with some girl time with a visit from a friend I've known for years. She just happened to be driving through and needed a place to stay on a cross country trip. We laid in bed together just laughing and talking-great therapy for the soul! 

Don't get me wrong, things haven't been easy over the last week. I've definitely experienced some extreme side effects from the Procardia and even started having low blood sugar issues. Yet, most of the time my spirits have remained high and I know it is due to the support I am receiving, the prayers going up, and the blessing of an amazing partner in marriage. 

Tomorrow is another big day. We go back for a crucial ultrasound check up. My nerves are on edge today just thinking about it. I'll update you tomorrow, of course.  

Once again, THANK YOU for your prayers, love, and support! 

Bed Rest: Day 4

Over the next few days of bed rest I hope to update this blog a bit more, particularly about my pregnancy so far.  So about bed rest...my Doctors-yes plural-my boys are kind of a big deal ;) -have told me that I am allowed to wake up and get ready for my day, shower, etc...then I should be lying down for 3 hours of uninterrupted rest.  The good news is that this rest can be in the bed, couch, or even recliner although it is best that a good portion of this time be spent lying on my left side.  After the three hours are completed I can then run a few light, short, errands-Yay! Then I must return to another three hours of uninterrupted rest.  It's challenging but the more I read about the increased fluid around our babies and the effect it can have on my cervix, thus sending me into preterm labor, the more I am just fine with bed rest, as difficult as it is.

The medicine I have been placed on to reduce the fluid surrounding baby B (the recipient baby-aka larger baby) and to prevent preterm labor contractions is a bit tricky. It's basically a blood pressure medication and today I learned just what it does to me when I actually spend time on my feet! We were specifically told, "You can go to Church!"  Yay! I was overjoyed to be able to be present for the first Sunday in Advent and communion Sunday.  However, I interpreted this as meaning I could show up early and visit with members (like I normally love doing as part of my job).  Jonny on the other hand made it clear that this was not part of the plan, so we showed up just before the service, took the elevator and then took our seats.  I hated it but my body quickly showed me why I it was so important. Even without standing during the service for hymns & such, the amount of energy expended to get to church was apparently all I could handle.  Despite it all we stayed through the sermon & communion and left only a tiny bit early.  What a blessing to hear a message about Hope, the traditional theme for the 1st Sunday in Advent and exactly what we needed right now!  It's amazing to hear about Mary expecting her promised son in the midst of my own pregnancy. It's a blessing to think about all Christians joining together in the Hope and expectation of our long awaited Savior.   We continue to hope for the very best for our two little boys taking comfort that God is with us, Emmanuel!

After the service & before getting into bed for the rest of the day (thank goodness for a laptop & wireless internet) I asked Jonny to take a few pictures of what I look like at 19 weeks pregnant with twins.  I realized today that I haven't really taken any and I know I haven't shared any publicly.  So to remember this time of expectation, below are a couple of photos...

I did a little photo editing so as not to blind you with my pink sweater! 

THANK YOU to all who have been praying with us and have reached out in support! I can't tell you how much your encouragement means to us at this time.  

Love & Blessings,

Katrina