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) 

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,
Katrina

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.  

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.  

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,
Katrina

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. 

PLEASE PRAY…

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,
Katrina 

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! 

Blessings,

Katrina  

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.  

-Katrina 

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.  

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...

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