Wednesday, July 17, 2013

Some good news!

Sorry this post is a little delayed.  I know many of you are wondering how our appointment at Mott Children's went.  It was an anxious week leading up to the appointment but we actually got some relatively good news.  It's been a huge relief.  

We had our followup fetal echocardiogram at the CS Mott Children's Hospital at the University of Michigan were we met an amazing team of people who work in pediatric cardiology.  While the test showed that Caroline does indeed have aortic stenosis (a narrowing of the valve that is located between the left ventricle and the aorta), the doctor's diagnosis was far more positive than that we received in Italy.  This narrowing has put increased stress on the left ventricle and caused some reverse blood flow, or regurgitation, from the left ventricle to the left atrium.  The doctor said that both of these conditions are to be expected given the stenosis.  Due to the fact that Caroline's stenosis is moderate to severe and that she does have partially reversed blood flow in her heart, her blood is flowing both right to left and left to right, our case is being reviewed by the head of the pediatric cardio unit to see if fetal intervention is necessary.  The doctor we saw was fairly certain that it would not be.  We have an appointment with a high risk OB as well as a follow up fetal echocardiogram in the coming weeks to confirm the diagnosis.  (They were not able to see all of the aortic arch this time round and are hoping get a better view next time.)  Of course anything can happen but the good news is that if everything goes according to plan, I should be able to carry Caroline to term and have a normal delivery without problem.  

Immediately after birth, the doctors will put Caroline on an IV medication to ensure that the duct between the aorta and pulmonary artery remains open (it usually closes after birth).  They will then perform tests to determine the best course of action.  The best case scenario in the short term would be to insert a catheter into her heart and inflate a balloon inside of the aorta in order to widen the opening in the artery.  If the blockage is more severe or if the aortic arch is affected, immediate surgery might be required.  Depending on how things progress, Caroline will likely need to have the aortic valve replaced but when is unclear.  It could be when she is an infant, a toddler, or a teen, it all depends.  While Caroline's condition is still serious, this is obviously a big improvement from what we were told in Rome.

The doctors here said that 8 out of a 1,000 babies are born with heart defects.  Of those heart defects, aortic stenosis is the most rare and occurs more often in boys than in girls, so little Caroline is a special case.  C.S. Mott Children's Hospital is recognized as one of the best in the United States for this sort of thing and the team of doctors there have presented us with workable treatment options.  We are incredibly lucky that Ryan's family lives only an hour away.  The current plan is for me to stay in the States until the baby is born and for a short time after.  I am being set up with a high risk OB, a genetic counselor, and a social worker, all who will follow our progress through the rest of the pregnancy.  

Thank you again for all of your thoughts and prayers!  We'll keep you updated as things develop.

Tuesday, July 9, 2013

Her Name

Dear all,

First I wanted to tell you all thank you.  Thank you so much.  The outpouring of love and support that we have received from family, friends, and strangers is overwhelming.  The initial diagnosis for our daughter left us in shock; we were totally distraught and helpless.  Both the specialist we saw and my OB recommended we terminate the pregnancy due to the severity of heart defect that was found.  That was very hard to hear because it left us with the sense that the situation really is hopeless.  But then we began receiving phone calls, emails, and facebook messages with such words of encouragement and love that you realize there is hope.  That no matter what God's will in this situation is there will be a greater good to come out of it.  Already His grace is working through all of you and your prayers, and we cannot thank you enough.

Many of you have asked what our baby's name is.  We have decided to name our little girl Caroline in honor of Karol Wojtyla (Blessed John Paul II.)  We are still working on a middle name.

As far as our plan, we are just taking things day by day.  I know we cannot tackle this thing in its entirety, it would be too overwhelming.  We are just focusing on facing each day with its own struggles, pain, and joys with love and acceptance.  Already things have gone very well for us.  We received the diagnosis in Italy on Tuesday and by Thursday we were on a plane to the States.  The flight went as smoothly as a 10 hour flight can go, and we distracted ourselves by catching up on all the American movies we had missed in the last year.  We arrived in Michigan without incident; we breezed through customs and had NO lost luggage, yay!  Tomorrow, July 10th, we have an appointment at the University of Michigan's C.S. Mott Children's Hospital.  Many thanks go to my uncle for helping us get an appointment so quickly.  There we will have a followup fetal echo-cardiogram and meet with a fetal medicine specialist.  Based on the information we receive at that appointment we will start making decisions about how to proceed.  Until then we are with family and just trying to keep positive.

I hope to have an update for you all later this week.  Again we cannot thank everyone enough for everything.  All the thoughts and prayers, all the research and practical advice, all the medical support and offers of places to stay have meant so much to us and shown us how lucky we are to have you all in our lives.

“I plead with you--never, ever give up on hope, never doubt, never tire, and never become discouraged. Be not afraid.”
―Blessed John Paul II 

Tuesday, July 2, 2013

Our Baby

This is a difficult post to write. 

Earlier this year we learned that we are expecting our first baby in October.  The excitement was overwhelming.  The news came after several years of trying unsuccessfully to conceive due to my having endometriosis.  When we found out we were so happy and blessed to finally start our journey of parenthood.  Little did we know that the struggle of infertility would be replaced with an even greater one.

Just as a little background, I am currently 23 weeks along and so far the pregnancy has gone very well.  I had minimal nausea and have felt great for the most part.  At the outset of the pregnancy I was diagnosed with  slight hypothyroidism but the doctor was not too concerned.  I was put on a low dose of Eutirox and that seemed to fix things.  Nothing was out of the ordinary and our busy schedules continued as normal with the addition of monthly OB appointments in Rome.  A few weeks ago I started to be able to feel the baby kicking.  It is such a weird and awesome feeling.  Ryan has even been able to feel a few of the stronger kicks.  We also found out that we are a having a girl!

Last week we had our morphological ultrasound and the doctor spotted a focus, or bright spot, on the baby's heart.  He told us that it was probably nothing to worry about but that we should have a fetal echocardiogram just to make sure.  The first echocardiogram was yesterday, Monday.  The baby was being very uncooperative and the doctors were not able to get a good view of the heart.  They were able to confirm the presence of a focus in the left ventricle but they could not see the aortic valve very well.  It was the doctor's recommendation that we see a pediatric cardiac specialist today, Tuesday.  It was the pediatric cardiac specialist who told us today that something is seriously wrong with our baby's heart.  While I do not pretend to understand the full diagnosis (trying to translate medical Italian is not easy), the information that we received was that there is something seriously wrong with the baby's aorta.  This has caused a number of problems including putting a great amount of stress on the left ventricle.  This is a problem that will only continue to worsen as the pregnancy progresses.  There is a chance that the baby's heart will fail before it reaches full term.  If the baby does reach full term and is delivered successfully, she will require immediate surgery.  The list of possible complications and genetic birth defects is long.

At this point we are just taking our time to process what we have been told and to pray.  We will begin to make decisions regarding medical care in a the next day or two.  We will try to keep you all updated on the baby's status and our plans as the information becomes available.  Right now we ask that you please keep us in your prayers.  We are especially asking for the intercession of Blessed John Paul II who is due to be canonized in October around when the baby is due.

Thank you to all of you who have already contacted us with words of encouragement.  We are obviously struggling right now and your love and support mean so much to us.