Today was a great day.  Brian and I saw our High Risk OB for a “growth ultrasound” to measure how Theo is growing.  Looks like I am in for a treat because as of now, his weight puts him in the 73rd percentile!  This is great news considering bigger babies do better with both surgery and recovery.  I was also not surprised to see him doing flips and downward dogs because that is just about what it feels like to me these days.  The appointment was positive all around.  The ultrasound tech used words like “perfect” and “beautiful” when referring to his organs and overall development.  Considering the news we’ve received to this point, this was music to our ears.

Brian and I are feeling comforted and relieved with our recent commitment to delivering  in Boston.  After covering all of our bases in both Boston and Rochester, it became clear that Boston has the experience needed to give Theo the absolute best care.  Our next step is a follow-up fetal echo at Boston Children’s, a tour of the cardiac intensive care unit, and an appointment at the Brigham and Women’s Hospital where I will deliver Theo.  Boston Children’s and Brigham and Women’s’ are attached which will make Theo’s transfer after delivery nice and convenient.  This follow up, tour, etc., will take place on December 28th.

It’s sounding like this will be our last trip to Boston until we are there at 37 weeks to begin the countdown to Theo’s arrival.  In the meantime, we will continue routine care with our OB here in Rochester. Planning ahead, we have reserved space with the housing offered through Boston Children’s and will likely be staying with friends  occasionally to switch things up.  Things are coming together and we are feeling incredibly confident in this decision.

I’m finally allowing myself to think about the fun stuff!  We can’t wait to meet this little heart warrior.

“You are fierce.  You’re a survivor.  You’re a fighter through and through.  Little brave, breathe.  There is a warrior within you.”  -Beau Taplin

At this point, Brian and I have come to appreciate the unsurprising, and that was pretty much what we were given during our appointment at Boston Children’s Hospital (BCH). The pediatric cardiologist (PC) at BCH was happy with the images they were able to capture during Theo’s echocardiogram, and we were provided with essentially the same results that we had received at Strong Memorial Hospital in Rochester a week prior. We did, however, discuss a couple of treatment options that would either be preferable or only available to do out of BCH. The challenge is that we will not know which treatments will be best for Theo until he is born and continues to grow.

The following is a brief description of the treatment options that we discussed with the PC while at BCH:

1. Patent Ductus Arteriosis (PDA) Stent:  If Theo is in good enough condition following birth, he could be given a PDA stent instead of a BT shunt to keep the ductus arteriosis from closing. The PDA stent would be preferred because it is less invasive and would not require an open heart surgery.  The less time Theo spends in surgery the better, since less recovery time would mean less developmental delay.
2. Biventricular Repair: The typical treatment of single ventricle defect includes a series of surgeries that ultimately results in blood flow to the lungs with only one functioning ventricle. As an alternative, successful biventricular repair would restore ‘two-ventricle’ circulation.  Because Theo technically has two ventricles (albeit two ventricles that aren’t separated by a wall), he may be eligible for this treatment option.  The biventricular repair would put an artificial wall between Theo’s right and left ventricle so his heart could function more like a normal, two-ventricle heart.  However, because the right and left ventricles are inverted, it makes the biventircular repair more complicated than normal.  Again, time will tell whether this will be a viable option.

In addition to hearing about some of the treatment options available at BCH, we also learned more about what our lives would look like if we pursued treatment there.  We would need to be in Boston around Week 37 in case Theo makes an early debut.  Once born, we will be able to hold him for a few minutes and then he will receive medication through an IV to get him ready for his first procedure, which will take place about a week later.  Fortunately, breastfeeding should be an option and Theo would be able to visit with family and friends before undergoing his first procedure.

The first procedure will be either the BT shunt or the less invasive PDA stent.  If Theo isn’t able to receive the PDA stent and thus undergoes a surgical procedure to put in place the BT shunt, he would need to be in the hospital recovering for 4-6 weeks.  If he is able to receive the PDA stent, the recovery time would be cut in half.  We are fortunate enough to have great friends and family in and around Boston for support during this time, as well as housing made available through BCH and some very dear friends nearby. We don’t have all the details down yet, but we are lucky to have options that make receiving treatment in Boston a workable possibility.

We also spoke with the PC about what home care will look like once we are in a position to return to Rochester.  The PC reassured us that our home would not need to be a hospital.  There will, however, be some at-home monitoring that we’ll need to do twice a day.  Additionally, a nurse from Strong will visit briefly twice a week for normal check-ups.  Although Theo’s treatment will be an ongoing process, it is not as daunting as we originally anticipated, and we are feeling as capable and optimistic about it as we ever have.

Over the next few weeks, we will be weighing our options and eventually making a decision about whether to deliver and receive treatment at Strong or BCH.  We’ll keep you posted.  Otherwise, hopefully the next few months are uneventful as Theo continues to develop in the womb.  In the meantime, we’re feeling his kicks and sending him lots of love.

I was surprisingly calm when we heard at our 16-week ultrasound that Theo had a single ventricle defect. I felt like I had cried out all of my tears during the four weeks prior. Instead of feeling crushed or blindsided, Brian and I felt like we had finally received a bit of clarity.

We made a decision as we left that appointment – a difficult one but a decision that I think will help us tremendously through the balance of our pregnancy. We chose to look at the information we learned as a blessing, and we chose to express acceptance and gratitude instead of anger and resentment. Although we still had more information to learn from the cardiologists, we were one step closer to a full diagnosis and one step closer to a plan. We were not yet out of the woods but the uncertainty was largely behind us.

The longer I live, the more I realize the impact of attitude on life. Attitude, to me, is more important than facts. It is more important than the past, than education, than money, than circumstances, than failures, than success, than what other people think or say or do. It is more important than appearance, giftedness, or skill.

It will make or break a company, a church, or a home. The remarkable thing is that we have a choice every day regarding the attitude that we will embrace for that day.

We cannot change the past, we cannot change the fact that people will react in a certain way. We cannot change the inevitable. The only thing we can do is plan on the one thing we have, and that is our attitude.

— Charles Swindoll

Brian and I agreed that we would learn as much as we could about single ventricle defect and connect with as many families as we could who have gone through similar experiences. Opening up was refreshing. We learned that essentially everyone knows someone who has experienced a complicated pregnancy in one way or another, and we’ve come to realize that many know parents who have a child with a congenital heart defect (CHD). We came to feel less alone, and having a child with a single ventricle defect became less frightening and insurmountable.

I joined several Facebook groups during my first trimester – “First-Time Pregnancy” and “Mothers Due April 2016”. Once we learned that Theo was dealing with a heart defect, there was of course a shift in our focus. I’m now a member of seemingly every possible CHD group on Facebook, including the Rochester chapter of “Mended Little Hearts”. The conversations went from, “How is your morning sickness?” to “How many open heart surgeries has your child had so far?” It’s not where I thought I would be, but I continue to remind myself that this is our path – this is the pregnancy we have been given and there is no doubt in my mind that we are up to the task. There is a larger plan and all we can do is ask questions, learn, connect and be incredibly grateful that we still have our baby boy.

I’ve had several long conversations with mothers of thriving children with similar heart defects. None of them sugarcoat the difficulty of the first couple of years, or the NICU time or the necessary surgeries. But they are so proud to share pictures of their healthy little ones after it all, and the joy on their children’s faces makes it all worth it.