Thursday, December 5, 2013

And now for the main event

Caroline is six weeks old!  Now I know what you might be thinking, "Caroline? Caroline who?...Your baby?! You had a baby?"  Well, yes, yes I did.  And you will have to forgive me for my lack of posting.  So many people have been following Caroline's story through this blog and right when the story comes to its climax, aka her birth, I totally drop the ball.  After Caroline was born I left all the updating of family and friends to Ryan.  He dutifully sent out emails and updated Facebook with the latest news on our little miracle.  Meanwhile, I was processing.  Processing the whole labor and delivery thing, processing Caroline's prognosis, processing the fact that I am now responsible for this awesome little soul, and the list goes on.  I have also been working though a really rough postpartum recovery, but I will spare you the details on that.  I can just say that having this little girl rocked my physical and emotional world and not necessarily in a good way.  But things have finally started to settle down and my mental state has balanced itself out somewhat so, without further ado, I am now ready to tell you all about the arrival of Caroline Sofia.

Let's start at the beginning, shall we.  I was induced on October 22.  The hospital called us that afternoon and told us to come in at 8pm.  Ryan and I were definitely simultaneously nervous and excited as we made the hour long trek to Ann Arbor.  These last few months had been building to this moment when we would finally meet our baby and find out the extend of her heart defect.  The fact that I was being induced on John Paul II's feast day, Caroline's namesake, was more than a coincidence (at least I think so).  I knew someone up there was looking out for us and it was very reassuring.  I don't know that I felt "ready" for anything but I did feel that no matter what was thrown at us we would be able to deal with it somehow.

Induction time!

The induction went fairly well.  I was in labor for about 24 hours, fortunately not the two or three days that the doctors had been preparing me for so that was a plus.  I decided to get an epidural when I was 7cm dilated.  Unfortunately, it did not take well and I had several "windows" of pain...definitely NOT a plus.  I should have seen it as a sign of what was to come because this was when things started to take a turn for the worse as my relatively easy labor turned into a very difficult delivery.  After three hours of pushing, the doctors decided  that extra measures were necessary.  An episiotomy, a third degree tear, the use of the vacuum, and threat of an emergency C-section all followed before Caroline finally made her debut at 9:45pm.  To say that she made a dramatic entrance into this world would be an understatement.  It seems she was just keeping with the theme of the pregnancy.

Caroline was immediately taken to "the nest," a room adjacent to the OR, used for evaluation by the pediatric cardiology team.  Ryan was able to go with her and snap a few photos.

Getting cleaned up and hooked up to all her monitors.

I got to see Caroline a short time later.  It was such an awesome and surreal experience to be able to hold her for the first time, though I don't think it really sank in as I was still in a daze from the whole labor and delivery adventure.  After a few moments with her, I was taken off to recovery while Caroline went for her first, and most important, echocardiogram that would tell us what condition her heart was in.

Getting to hold Caroline for the first time.

We had to wait until the next day for the echo results.  The doctors met with us first thing in the morning and told us that the fetal intervention had indeed been successful!  Caroline did NOT develop hypoplastic left heart syndrome and all four chambers of her heart were functioning.  I cannot tell you the range of emotions that I felt.  The relief was overwhelming!  Just to think that ten weeks earlier her left ventricle had basically stopped pumping and now it was working again!  While Caroline thankfully did not require open heart surgery for HLHS, her aortic stenosis still needed to be addressed.  The doctors told us that Caroline needed to have her aortic valve ballooned again and that now, as in 30 minutes, was the best time to do it.  It was ideal because a ductus in her heart was being kept open medicinally in order to facilitate the flow of oxygenated blood to her body and reduce the stress placed on her left ventricle.  Having the duct open meant that Caroline would not need to be put on by-pass during the balloon procedure which was a major plus.  We asked that a priest be paged so Caroline could get baptized before going into surgery.  There was no priest available so Caroline was baptized by Chaplain Lindsey.  Being Catholic I was not totally sure what to expect but it was a very nice baptism.  As an added bonus Ryan, and I got to profess Jesus Christ as our Lord and Savior :)  Much to Ryan's disappointment, there was no opportunity to shout "Amen."

Caroline's baptism

Immediately following her baptism, Caroline was taken into surgery.  Three hours later, she was back in the Pediatric Cardiothoracic Intensive Care Unit (PCTU) and doing well.  The aortic valvuloplasty was a success!  Her aortic valve was widened and the pressure inside her heart, specifically that inside her left ventricle, was greatly diminished as a result of the increased blood flow through the valve.  This decrease of pressure will allow her heart to function more normally.  Caroline's aortic valve is a bit leaky and she has a slight heart murmur as a result of the procedure but that is a small price to pay.  She will probably have to have another valvuloplasty down the line and her aortic valve will most likely have to be replaced via open heart surgery at some point.  That being said, things are looking very good at the moment and we are feeling beyond blessed.

In her incubator in the PCTU.

Getting an echo done.

All wired up.

We spent the next 13 days in the hospital.  Caroline stayed in the PCTU for about a week before being down graded to the normal pediatric cardio floor.  It was difficult to see her in her incubator hooked up to all her monitors and tubes.  When they let me hold her, I cried like a baby which baffled Ryan. (Enter the post partem hormones.  I was a total mess!)  While in the hospital Caroline developed some feeding issues that needed to be resolved before we could go home.  Caroline had been put on IV nutrition right after birth in preparation for whatever heart procedure she would need.  As a result, her digestive system didn't get the normal jump start.  When she was taken off the IV feeds and given milk normally, her digestive system did not know what to do with it and the milk just sat in her stomach.  It was a long and  slow process to get her system to adjust but we eventually got things sorted out.  Unfortunately, due to these feeding complications, I wasn't able to breastfeed Caroline while we were in the hospital and now she will have nothing to do with nursing.  It is very frustrating but she loves her bottle and is eating well; so for that, I am grateful.  We will just keep practicing and hopefully one of these days she will latch on. (And then I can throw my breast pump in front of an oncoming 18 wheeler.  All pumping mothers I've talked to seem to share my strong loathing of that machine.)

An IV in her head.  It was the WORST!
Caroline had several IV's that went bad and they finally
had to put one in her head:(

Halloween in the hospital, a little lady bug (minus her hat.)

We were discharged from the hospital on November 4th.  It was a good day, a very good day!  Considering Caroline's original diagnosis and the complications and associated surgeries we could have been facing, it was really a miracle that things turned out as well as they did.  We are truly blessed.  We have a wonderful team of doctors, family, friends, and strangers to thank for getting us through.  We cannot express how grateful we are to everyone who has reached out to us, prayed for us, donated to Caroline's fund, sent gifts, and helped us through this trying time.  This experience has tested us and made us grow in our faith and trust in God.  It has also humbled us and shown us God's love and goodness through all of you and your support.  Thank you so much!

Hail to the little victors!

We're outta here!

Now that we are "home," we are adjusting to our new normal.  There are lots of follow up doctors appointments, and we have to keep an eye on Caroline to watch for possible symptoms of congestive heart failure which would indicate that her aortic valve is not doing well.  Aside from that, she is a pretty normal baby.  She is a squirmer who hates taking her medicine.  She likes to sleep during the day and keep us up at night.  She loves a warm bath and to have her legs massaged.  She is an awesome snuggler.  She gets super excited about her bottle and makes the best gremlin noises.  She is pretty much the bomb diggity and we love her!

Monday, October 21, 2013

It's almost time!

39 weeks!
It's almost time!  Tomorrow I will be induced.  (Really, just 24 short hours?!  It does not seem real.)  Ready or not, we'll finally get to meet out little Caroline and a lot of the questions that have been building over the last few months will be answered.  (and I will get to have an adult beverage!)

There have been so many emotions leading up to this point; excitement at having a baby, sadness and fear over her diagnosis, hope that everything will be fine, apprehension that it may not.  I expected to have a overwhelming rush of emotions the closer I got to my due date, but that has not been the case.  These last few days I have felt eerily calm..  I have been packing hospital bags and washing baby clothes with a resolute matter-of-factness.  Maybe I will lose it tomorrow, I am already starting to get some butterflies, but hopefully not.

Ryan and I cannot thank all of you enough for the incredible amount of love and support we have received.  Family, friends, students, and strangers have all reached out to us and it has been incredibly humbling.  I am convinced it is your prayers have helped us through this challenging time.  Keep them coming!

We can't wait to share news of Caroline's birth with you.  I am hoping for a quick induction, though my doctors are preparing me for the long haul.  They said it could take two to three days to get labor started, yikes!  The first few hours and days after her birth will be full of testing, observation, and decision making.  We will keep you all as updated as possible, probably through Facebook.

Well, I am off to carbo-load.  Apparently a must when you are preparing for a long induction:)

Blessed John Paul II, pray for us!

Tuesday, October 8, 2013

Wait, what?!

They say time flies when you are having fun.  Well, I am not sure how much "fun" these last few months have been but time has certainly flown.

After spending the last six weeks working in Italy, Ryan made it safely back to the States with only a slight hiccup.  He missed his connecting flight from NYC to Detroit.  It was not the end of the world however and he got in only an hour later than originally planned.  I managed to maintain my composure and did not embarrass him at the airport by screaming, squealing, jumping up and down etc.  I am just so pumped to have him back, though I am not so sure he is as excited about all the smothering affection he is receiving.

Ryan's return coincided with a whole slew of doctors appointments.  On Thursday we had an OB appointment, ultrasound, and fetal echo.  We spent the whole day down at Mott Children's and got some very encouraging news.  First both Caroline and I are looking healthy.  She is growing/developing well and is currently 5 lb 15 oz.  I am feeling great and have no issues.  It seems that being tall has some real perks when it comes to being pregnant; lots of room for baby means fewer of the usual discomforts for mom.  The fetal echo showed that the blood flow through the aortic valve has decreased slightly but is still sufficient.  The regurgitation through the mitral valve is almost gone which means that the blood flowing through the left ventricle is being pumped out of the aortic valve rather than backing up in the ventricle and going back through the mitral valve.  All in all the heart is not normal but it is still looking and working better than it did prior to the fetal intervention.  At the moment it seems as if we have avoided the hypoplastic left heart syndrome.  Thanks be to God!  (Though nothing is certain until she is born and all her issues can officially be identified.)  A big test is going to be how well her left ventricle functions once she is born and her heart is working on its own.  Her heart will definitely need repairs, we just don't know whether they will be big ones requiring open heart surgery or smaller ones requiring any variety of different procedures.  The left ventricle does have a lot of fibrous tissue in it due to the stress it has been under.  This tissue will affect how the ventricle functions.  We have been told that sometimes this tissue goes away by itself but sometimes open heart surgery is required to remove it.  At this point we are grateful for the good news and are cautiously optimistic about it all.

During our appointments we were briefed on how delivery will go.  I will be in a regular room until the actual delivery which will take place in an operating room with both the OB team and pediatric cardiology team present.  Caroline will then be immediately assessed and an echocardiogram done to get a full diagnosis of her heart issues.  She will be kept in the cardiac ICU and I will have a day or two of recovery in a normal room before being discharged.   We will know a whole lot more of what we are in for after those first few days of testing and observation.  The estimated hospital stay for a heart baby is 3-4 weeks.  Ryan and I will stay in the Ronald McDonald House at the hospital as long as we can and after that we will stay in Ann Arbor.  And speaking of delivery, the doctors told us that they would like to induce me at 39 weeks so they can go ahead and start working on Caroline's heart.  My response was definitely, "Wait...what?!"  That means in just two short weeks she will be here!  Crazy!!!  I just can't believe it.  It does not feel like nine months have gone by at all.

The really awesome thing is that I will be exactly 39 weeks on October 22.  Any guesses as to whose feast day is October 22?  That's right, Blessed John Paul II, Caroline's namesake!  Now, I am not saying she will be born on the 22nd but it would be cool.  Who knows, maybe she is just meant to be one more little miracle added to his cause:)  We know so many people have been praying for us and especially asking JPII for his intercession.  Thank you all so much.  This is just a little sign that your prayers are hard at work.

Here is our first 3-D image of little Caroline.  We have gotten lots of conflicting opinions as to whether she looks like me or like Ryan.  I am withholding judgement until after she is born, though I will say I think she got my lips.  Yay! (no offense, Ryan.)

Countdown is on: 2 weeks!!!  Ahhh!

Friday, September 6, 2013

8 months down, 8 weeks to go

I am officially 32 weeks pregnant!  That's 8 months down with 8 weeks to go:)  These last 8 months have been some of the happiest and hardest months of our lives.

32 weeks is a very big deal for us.  Our doctors told us that if Caroline was born before 32 weeks her chances of survival were zero.  I haven't had any medical problems with this pregnancy so far but I was still nervously waiting for the 32 week mark to come around.  At least now if something goes wrong and I deliver early she has a good fighting chance.  Yay!

These last three weeks following the fetal intervention have trickled by.  Ryan returned to Italy.  Of course I cried like a baby.  I miss him and I miss our life there.  We left so abruptly that I didn't get a chance to say proper goodbyes to our friends and co-workers there.  Michigan has been great but it feels strange not to be part of the hustle and bustle of a new semester, and not to be surrounded by exuberant 19 year olds.  That isn't to say that I don't have plenty of things to do here.  This baby will make her debut before we know it and there are still lots of boxes to check on the old To Do list.

Yesterday I had a slew of doctor's appointments that included another fetal echocardiogram.  Things are looking good.  I am not experiencing any problems and Caroline's growth is spot on.  The techs have remarked more than once on how long her arms and legs are.  Not surprising:)  The echo showed that the aortic valve has not regressed since surgery which is very positive.  The flip side is that it could regress at any time, we just have to keep monitoring it.  There is some function in the left ventricle which the doctors hope will improve over the next few weeks.  The blood flow through the aortic arch is looking alright and it appears that the bilateral blood flow between the atriums may have decreased slightly.  The mitral valve regurgitation is definitely decreased.  Over all very good things to hear.

The real test of the left ventricle will be after Caroline is born.  We really won't know until then if it will be able to function on its own so things are still up in the air as to what we can expect.  If it is not able to function on its own then we are back to the HLHS situation and a series of open heart surgeries.  If the left ventricle is able to function on its own then it all depends how good of a job it does.  Maybe she will still need surgery, maybe we will need to re-balloon the aortic valve, or maybe she can be given medicines to improve its function.  We really just have to wait and see.

I got back for another fetal echocardiogram in 4 weeks, at which time I will be 36 weeks pregnant.  The doctors will assess Caroline's heart and then we will talk delivery plans.  If her heart is not looking good I may be induced so they can intervene quickly and try and fix what's wrong, but if all looks ok then I should be allowed to carry on and have a natural delivery.  I am getting excited, and nervous of course, and I know the time is going to fly by.  Please keep up the prayers!  

Saturday, August 17, 2013

The fetal intervention

Monday, August 12th, was an amazing day.  It was such a mix of emotions; apprehension, fear, excitement, hope, but it turned out wonderfully.  Here is the whole big, long story...

We headed to the hospital at 7:00am in the pouring rain and almost rear-ended the same BMW twice which added some totally unnecessary excitement to the morning.  First stop at the hospital was at the lab to get my blood drawn.  Then it was up to the Fetal Diagnostic Center to have an ultrasound.  The ultrasound showed that the function of Caroline's left ventricle had decreased even further since the last check and blood flow between the atriums had fully switched and was now going left to right.  Definitely not something that we wanted to hear but it reinforced that we had made the right decision to have the intervention done.

We then met with doctors from both the pediatric cardiology department and the fetal diagnostic center to go over the procedure, associated risks, and any questions.  I was able to meet with the hospital chaplain and receive anointing of the sick along with a special blessing for Caroline.  Even though I was nervous about the procedure and the risks involved I definitely had a sense of peace and hope and was ready to get things going.

I was taken to pre-op and met my awesome nurses.  I cannot say enough how fantastic everyone at Mott Children's is.  From the surgeons, to the anesthesiologists, to the nurses, to the greeter at the front desk, they are all so personable and kind.  My procedure was scheduled for 12:30pm and Ryan was able to stay with me until I was taken into the operating room.  It was a bit odd for me because the procedure was not performed under general anesthesia.  I had an epidural and was completely awake the whole time.  I guess we are somewhat of a special case because the operating room was PACKED.  There must have been at least a dozen other doctors and medical students in there not including my doctors and nurses.  I was moved onto the operating table and then the fun began.  The first and most important step was for the doctors to make sure that Caroline was in the right position for them to do the procedure.  And of course she was not.  I lay on the table for about two hours while the doctors manipulated my stomach and tried to get her to move.  Finally it was decided to move me to recovery and wait to see if she moved on her own.

I got to recovery around 3:00pm.  Ryan was there waiting for me.  The doctors told me that they would give us until 5:00pm and if she had not moved we would need to come up with another plan, like coming back the next day.  Whatever other medicine they had given me in addition to the epidural made me very happy and squinty eyed, so the time passed fairly quickly and with little stress (Ryan laughed at me a lot.)  Periodically a doctor would come in and do another ultrasound to check her position.  One doctor tried to get us a 3D image of Caroline's face but she was not cooperating.  All we got to see was her ear and a LOT of hair.  It will be interesting to see if she keeps it as all the babies in my family have been bald, bald, bald.

Caroline finally moved around 4:30pm into the "perfect" position and I was ushered off to the operating room again.  Back in the OR with all my medical friends I was asked to move very carefully back onto the operating table.  I tried to move as carefully as one can when one's legs are useless pieces of lead but Caroline decided that this was her cue to shift out of her "perfect" position.  It took another half hour or so of coaxing for her to move again and then there was a sudden rush of activity.  Doctors shouting that we had to go NOW and giving instructions, nurses holding my stomach so she could not move again, and anesthesiologists telling me that they were working to get me more medicine as fast as they could but that the doctors needed to start the procedure right away.  I was amazed at how calm I was.  Up to this point there had been no drapery put up so one was erected and we were off and running.  Thankfully the meds had taken full effect and I just laid there listening to everything going on.  An incision was made in my stomach and a needle was then put through Caroline's chest into her heart.  A balloon was then threaded into her aortic valve and inflated three times to help widen and loosen the valve.  The doctors were all very professional throughout the whole thing and Caroline handled it very well.  The doctors were able to see an immediate improvement in blood flow through the aortic valve and they all sounded very excited, one of them said something about what a "slick" job they had done:)

I was back in recovery around 7:00pm and was met by Ryan and our parents.  Unfortunately I had to stay in the hospital until almost 11:00pm because of some nausea but other than the doctors and nurses were very happy with how Caroline was doing.  Ryan and I came back the next morning for a follow up echocardiogram.  All indications were that the procedure was a success.  There is increased blood flow through the aortic valve and the aortic arch, and we are back to bi-lateral blood flow between the atriums (not ideal but better than flowing from left to right.)  By having this procedure we have given the left side of the heart a chance to heal itself and now we just have to wait and watch.  There is still the risk that Caroline will develop hypoplastic left heart syndrome but the success of the fetal intervention has lessened it.  We are so thankful and blessed to have such an incredible medical team on our side.  And the support from family and friends is overwhelming as always.

On a sad note, Ryan left for Rome on Thursday.  He is settling back into our apartment and life as a temporary bachelor.  He will continue to work in Italy until closer to the baby's due date in October.  I will remain here in Michigan and continue to be seen by the doctors at Mott Children's.  Caroline's condition will be monitored through regular echo's and ultrasounds.  We will continue to keep you all updated.  Thank you again for everything.

Caroline's new onesie from University of Michigan CS Mott Children's Hospital.

Thursday, August 1, 2013

The terrible, horrible, no good, very bad day

It's been three weeks since our last fetal echocardiogram at Mott Children's.  Our spirits were  bouyed  by the impressive facility, amazing staff, and positive outlook.  We spent these last three weeks visiting with family and friends, shopping for the baby, and even having a baby shower, something I was very hesitant about.  I was finally feeling comfortable with the pregnancy and the diagnosis.

Then, on the 31st, we had our second fetal echocardiogram at Mott's.  Things did not go so well.  Heading to the appointment I felt ready for whatever news they had for us.  I felt like we had already run the gambit of emotions, from our devastating diagnosis in Italy to our more encouraging echo in Michigan.  I was sure I could emotionally handle anything.

The echocardiogram went as normal and afterwards we sat down with the head of the pediatric cardio department to discus the results.  Caroline's condition has gotten worse since the previous echo three weeks ago.  Her condition is evolving from aortic stenosis into hypoplastic left heart syndrome (HLHS), a much more serious defect.  In hypoplastic left heart syndrome the left ventricle doesn't develop properly and the baby is left with only the right side functioning.  A series of heart surgeries are required to essentially reconstruct the heart and make it functional.  The first surgery usually takes place within 7 to 10 days after birth.  Hypoplastic left heart syndrome if left untreated is a uniformly fatal condition.  The outlook for babies with HLHS improves as they get older and if the baby makes it to three years old their survival rate drastically increases.

This new information was extremely difficult to hear.  I thought I was ready for anything but I wasn't.  I guess I was just hoping that everything had stayed the same since the last appointment.  I held it together until about halfway through the consultation and then became a weepy mess.  Ryan on the other hand was awesome as always and asked all the right questions.

They also informed us that we are now candidates for fetal intervention.  The doctor told us that Boston has the most experience this procedure but that Mott's has done several as well.  The  procedure is high risk for the baby, but if it is successful will decrease her chance of developing hypoplastic left heart syndrome by half.  Without the fetal intervention she will almost certainly lose function on the left side of her heart.  Fetal intervention can only be performed within a certain window of time so if we opt for the procedure it will happen within the next two weeks.  Our file is being sent to the doctors in Boston to get their input on the situation.

We have been left with a lot to think about and some very large medical decisions to make.  Please keep us in your prayers.  All of your support so far has been incredibly helpful and it is reassuring to know that Caroline has so many wonderful people praying for her.  I am sorry if I have not gotten to responding to all of your comments and emails, I am working on it.  Please know that they are important to us and mean a lot.

We heard back from the doctors at Boston Children's.  They agree that we are excellent candidates for fetal intervention and see no reason why it cannot be performed at Mott Children's.  After much consideration we have decided to have the procedure done.  It will most likely be scheduled for August 12th.
Sweet Caroline

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.