29 Weeks

As of today I've made it to 29 weeks with no plans of stopping anytime soon!  We’ve been waiting to share some good news about the heart function of Baby B until it was confirmed by the expert-the cardiologist.  At our appointment on Thursday he stated that Baby A still looks great and best of all Baby B is showing signs of improvement again!  Previously, as you may remember, progress had leveled out and we were preparing to live with the heart damage as is.  Baby B’s heart has now improved to the point that the Doctor is calling the problems “subtle.”  The valves are now pumping normally and there are no signs of leakage!  It was such a great feeling to listen to the cardiologist as he explained with a giant smile “if I were to see this baby without knowing his medical history I wouldn’t think his heart problems were even that big of a deal.”  That morning prior to the appointment I was throwing up from acid reflux in the car and absolutely miserable and yet in that moment-nothing else mattered.  Pure joy!  After the appointment I went back to being miserable physically but that's another story. 

I can’t pretend to understand why some prayers get answered in the way we want and others don’t (yes, even after earning a Seminary degree at a very prestigious school-I still don’t have all the answers-imagine that!) but I am just so grateful for the miraculous healing we are witnessing.   The longer my body can hold on to these boys the healthier they will be so keep praying friends. We are so grateful for your love & support! 

As each week passes the reality of becoming parents is setting in.  The amount of work to get ready for two babies is overwhelming to think about, particularly since Jonny has to try to accomplish almost everything alone with me on bedrest.  We've already done some work of course. I can't help but want to rip down a strip of wallpaper or two on my way to the bathroom-that's not breaking any rules-right!?  Check out what treasure we found when we ripped down a few panels of wall paper in the nursery…

Under the 1980’s flower print (on the right) was an even more lovely 1970’s floral design!  Brady Bunch anyone? 

My view of the nursery from bedrest…

Jonny has one crib put together so far.  As you can see we chose to make our master bedroom and nursery the two adjoining bedrooms for easy access. Notice the lovely pink flowers and ribbons I am blessed to be surrounded by in our bedroom, day after day. Sense the sarcasm. 

Tucker is of course helping. Some days he is my bedrest buddy...

Notice that he is doing his part to make sure our boys' clothing is already being drooled on...

Knowing how much work there is to do some friends have volunteered to come over for a workday!  Tomorrow cribs & changing tables will be assembled, wallpaper will come down, and hand-me-down baby clothes will be washed (formerly worn by my nephews-thank you Daphne!) Words can’t express just how great it feels to know we have help for all of these projects. I have to admit not being able to do anything around the house and knowing my husband has to do everything for us is probably the hardest part of bedrest for me.  If you want to learn how to let go of control go on Bedrest…works like a charm!

Thanks for reading, thanks for praying, thanks for loving...

28 Weeks-Time to Celebrate!

Words can't express how much joy I experienced at my own baby shower yesterday thanks to some awesome friends and family!  So since a picture is worth a thousand words...Enjoy! 

Adorable decorations thanks to my friends Shelley & Kendra! 

A garland of our ultrasound photos...believe it or not we have many, many, many
more that were not included!  

Check out the amazing food prepared by my mother-in-law
& sister-in-law....

Twins in a blanket, how cute is that!?!  

With my cute Mom...

We talk with our hands. 

Painting Onesies, Bibs, and Burp Cloths...Thanks Erin!!!
Great idea! 

Notice the STL Cardinals logo...
we asked her to make a second one after we saw the first! 

A sad attempt to include Tucker in our family photo...

We gave up! 

I am so blessed to have these women in my life! Thank you all! 

27 Weeks, 2 days & a good dose of Honesty!

Overall things are still going well with the boys. Baby A (the donor baby) appears to be “normal” and has shockingly defied all TTTS logic by catching up in size to his larger brother!  As of 1/24/13 both babies were measuring just over 2 lbs each! So much for being able to tell them apart based on size. All joking aside, Baby B (the recipient baby) on the other hand still has an enlarged/stressed heart.  It appears as though progress has reached its plateau and now doctors are telling us that we just need to be prepared that Baby B will likely have a longer stay in the NICU than his brother (meaning a few days longer).  They don’t seem too worried and say that most likely the problem will correct itself over the first 6 months to year of his life with little to any intervention.  Though I am not showing any signs of going into early labor at this time it was very sobering last week to hear my doctor enter the room saying, “Well the good news is we aren’t admitting you today…” Her goal is still for me to make it past 30 weeks.  My goal: As long as possible! Although full-term for twins is considered 37 weeks the average twin birth occurs at just over 35 weeks.  I’d love for that to happen for the sake of my boys. I believe it’s possible. Please pray with me that it is. 

I have now been on house arrest…ahem, I mean bedrest, for 8+weeks. As of today, I have not cooked a meal, shopped in a store, driven a car, gone for a walk, or gone anywhere outside of the house by myself in over 60 days.  People keep telling me “you’re doing a great job” and I know what they mean, I get the sentiment behind these words but all I can think is “a great job doing what?”  But I guess that’s it isn’t it. I’m doing a great job doing nothing; because that’s what my babies need right now.  Even that I’ve questioned though, I mean the surgery worked, at this point it’s just a waiting game- to see how long my cervix can hold strong, to see how much improvement Baby B’s heart can make on it’s own before birth.  I just keep reminding myself that bedrest: not only takes pressure off the cervix but also provides more oxygen and better blood flow to the babies (and a whole slew of other medical mumbo jumbo benefits that I’ve read). 

Ok, so truth is, when I hit the 7 week mark of bedrest I realized...it sucks! For those of you who are new to reading my blog, or who barely know me, yes, I said sucks.  If I’m really being honest, then you have to know that part of my hesitation to keep blogging lately has been the realization that hundreds, that’s right hundreds, of new people are viewing my blog.  If you go back to my very first post or even look at the title you’ll figure out I get a little (a lot) nervous about the thought of being misunderstood or misjudged by my words.  So I’ve been pretty intimidated by seeing the number of page views I was getting around the time of surgery.  The stories I have to tell, the words I want to share, are not simply those of a pregnant patient/guinea pig being poked and prodded by medical professionals while dealing with the very rare Twin-to-Twin Transfusion Syndrome.  I’m getting back to blogging about, well, me, my life, and whatever is on my mind.  My upcoming posts may not be nearly as important, life altering, heart tugging, or inspiring as what we’ve had to share in recent weeks but for me that’s probably a good thing because it means life is finally settling down.  This blog has always been a cathartic outlet for me, when I stop worrying about whether or not I’m being graded for my words.  So here goes…Upcoming posts will include tales of our first ever home purchase, the discovery that no two door knobs in our house are alike and that every layer of wallpaper is covering and even more interesting décor choice underneath, the gender reveal parties for our families that occurred on Thanksgiving before things went nuts, the challenge of naming our miracle babies & the pressure from others to stop calling them Baby A & B, and the struggle to try and enjoy some sort of “normal” pregnancy traditions when absolutely NOTHING has been normal. 

So for now I’ll leave you with an embarrassingly badly posed photo of myself taken last Thursday at 26 weeks 5 days pregnant-officially measuring what a woman carrying one baby would be at 32 weeks!!! THANKS AGAIN for all the love and support so many of you are sending our way through cards, prayers, meals,and on & on. 

*Note* I have been battling bronchitis since Christmas! Miserable! I am on my second antibiotic now and still struggling.  Hence you’ll notice the smile in this photo isn’t exactly a toothy grin from ear to ear.Prayers in this area would be greatly appreciated as well!!!    

24 weeks 3 days & Good News!

Today marks 24 weeks and three days of pregnancy with our amazing fighters.  It’s been a while since we updated you and for that I apologize. Thank you for staying by our sides across the miles through prayer and encouragement.  I am so happy to share that we have good news! The past few weeks of doctors’ visits have been very positive and we feel safe sharing with you that things just keep improving with the boys! 

Baby B-the recipient baby, who you should remember was the most sick, has made miraculously quick improvements! We knew that doctors were hopeful that in 4-8 weeks after the surgery we would likely see improvements with decreased fluids and healing of his heart but that progress came much quicker than expected!  As of our weekly scan on Thursday, January 3 (our 4^th wedding anniversary!) the fluid around his heart and in his abdomen is no longer visible!!  It’s gone!!! The most shocking news for us was hearing the fetal cardiologist say that his heart is no longer leaking!!!  His heart is still enlarged due to the stress that has been put on it.  As long as we can avoid preterm labor doctors are confident this will also improve. Please continue to pray for complete healing of his heart.  As for Baby A-the donor baby-the word is he looks completely normal and we even got to see hair growing on his little head in a recent ultrasound.  With every ultrasound, even the day of the surgery, the boys are extremely active to the point that it is common to hear doctors and staff say “you are going to have your hands full with these two!” The boys are even growing at a much more even rate now.  It is very rare for there to be a reversal of TTTS after surgery but of course it is a possibility so please don't stop praying now! We will praise God whether storms return, rage on, or clear up all together but we are so thankful for something to celebrate. 

In other news we are now homeowners and settling into our first home…no more apartment life for us!   Poor Jonny can finally come home from work in the evenings and relax at least a little thanks to the help from both my Mom, Jonny’s parents, and our friends Erin & Brian, who have come at different times to unpack and get us settled in.  It's a big job that I have hated it sit by and watch happen without me but I'm doing my best to follow doctors orders. Hopefully before long we can start showing you photos of our new house and scan in ultrasound pictures for you to see the grown of our little guys.  Obviously I’m not allowed to be acting as photographer-boo but as Jonny’s schedule settles down you’ll start to see more.  Also, to answer the most popular question lately, yes we are working on names so that you will know them as more than A & B! We’ll let you know when we’ve made a final decision.

As for my health, I have been battling bronchitis for almost two weeks. You would think with all the “rest” I get that I would recover more quickly but the truth is until a few days ago the miserable coughing was so bad that I wasn’t able to sleep much at all.  I’ve been put on more medications and am catching up on sleep. I of course will remain on bedrest and will be for the remainder of the pregnancy.  The rules are still-only up on my feet for trips to the bathroom, to eat meals at the table, grab a snack, etc…and only one set of stairs per day-that’s the hard one now that we live in a 2 story house! So far my greatest accomplishment has been watching the first 2 seasons of Downton Abbey in time for the start of season 3 last night. I’ve gotta celebrate the little things-right!?

Each Thursday brings new scans from doctors-we will keep you updated. Please continue to be in prayer for the improvement of Baby B’s heart, for me to kick this respiratory infection, for Jonny as he takes on all the worries of the world caring for us (meaning me, the boys, and our dog Tucker), and for many weeks to come with NO preterm labor! 

We can't thank you enough for the prayers, meals, cards, and even financial help! It is all so humbling and we will never be able to repay your kindness. 

Blessings,

Katrina 

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.