Monday, July 7, 2014

It's been a whole year...

It's been a whole year since we got the news of Caroline's heart defect.  What a difference a year makes.  A year ago I was five months pregnant and we were not sure if  our daughter would live.  Now we have a gorgeous, sweet, and somewhat sassy little eight month old who blesses us every day with her presence.   That is not to say that she is a perfect angel all the time.  Caroline is a very good natured baby but she definitely is strong willed and has provided us with our fair share of frustrations.  However, even in the midst of those we can't help but be reminded how blessed we are that she is here with us and doing so well.  We know that her heart is not fixed and that down the road she will still need surgeries to keep it functioning properly but for now she is thriving.  It is a real joy to watch her grow and to watch her discover everything around her.  Here are "some" (probably too many) pictures of what she's been up to lately.

But before the photos, I would be remiss if I didn't take this opportunity to thank everyone again for everything that they have done for us over this past year.  We are beyond blessed.  Thank you to our amazing families for all your support and love.  For letting us crash at your house, for the unfailing moral support, for driving crazy long distances just to be with us, for everything.  Thank you to all our friends.  We are so lucky to have so many kind, generous, and loving people in our lives.  You all prayed for us, cried with us, set up a medical fund for Caroline, the list goes on.  Please know that your support meant, and continues to mean, so much.  And thank you to all the strangers who reached out to us.  You became friends and you gave us encouragement through your prayers, comments, and advice.  It was incredibly moving and humbling to have so many people who we didn't even know offering us places to stay, donating to Caroline's medical care, adding us to their prayer lists, giving us baby gifts etc.  God showed us His abundant love and goodness through all of you.  Caroline has an incredible story and you are all part of it.  We couldn't be more grateful.


Our little carnivore going to town on a rib bone.

Family photo at Tivoli.

College friends are the best!  Thanks for the visit!

Caroline hanging out with her godmother:)

Enjoying fava beans and pecorino, a Roman tradition.
Caroline loved chewing on the bean pods.

Hanging out with Dad on the soccer field after the Soccer Tournament.

Trevi Fountain photo op:)

She found her toes and LOVES them!

Sitting in her toy box watching soccer.

The hammock is her new favorite place.
She swings in it, rolls in it, sleeps in it, you name it.

The campus vineyard where we take our walks.

Lazy summer afternoons.

With the summer weather comes outdoor baths!

Kateri and Greg came to visit:)

#selfie

Not a big fan of the baby pool.

Grandma came to visit and it was great.
Lots of cuddle time.

Inspecting the flowers on our terrace.

Caroline's excited face.  She makes this a lot.
It is accompanied by arm flapping and lots of kicking.

She loves books and being read to.

Just eating a spoon and playing cards with Dad.

Wednesday, April 30, 2014

"We are the Easter people and hallelujah is our song." - JPII


Happy Easter!  Easter in Rome is always a very busy and exciting time.  I would like to say that we braved the crowds and did Easter mass with the Pope but alas we were not that adventurous.  We celebrated with mass in our beautiful little chapel here on campus followed by an Easter egg hunt and brunch/mimosas on our terrace.  Or should I say mimosas/brunch because we all know what the star of the show was. All in all it was low key but nice, especially when your terrace has a view to vineyard on one side and the Papal summer palace on the other.  Not too shabby.

Easter Sunday

Despite a quiet Easter Sunday we have had quite the eventful Easter week.  Caroline turned 6 months!  AND she had her first foray into solid foods!  We started her on rice cereal and some pureed apple but she is not the biggest fan.  She does however like these funny baby biscuits that you are supposed to dissolve in their bottle.  She won't eat them in bottle form but prefers sucking on them.

Mmmm, biscuit.

As a side note I have to share with you the Italian pediatrician's plan for introducing a baby to solid food.
Step 1.  One spoonful of pureed apple or pear before morning bottle.  Continue this, increasing the amount, for twelve days.
Step 2.  Introduce rice cereal mixed with milk, pureed fruit, and sugar. (Yes, sugar!)  Continue for twelve days.
Step 3.  Change things up a bit.  Continue with rice cereal but mix it with olive oil and parmesan. (Haha!)
Apparently Italian babies eat very well early on.  There is even a baby brand EVOO which you can find right along side the horse, lamb, and prosciutto baby food:)

We also had a visitor this week, John!  John is a friend from college and it is always fantastic to see him.  He was in town for the canonization along with his friend, Courtney.  They came out to campus and we grilled out at the Forno...standard operating procedure for any guest;)  Caroline really liked both John and Courtney and showed no sign of "stranger danger" with them, which is funny because she has been hesitant around new people lately.  The next day we met them in the city for drinks and dinner in Trastevere.  The city was packed for the upcoming canonization but there was a really great energy and we had an awesome meal with an inpromptu photoshoot to boot! (Courtney works for one of the American Archdioceses and they sent out a photographer to takes some pictures of her while we were at dinner.)

John!
Eating John's nose

Then there was the big event, the canonization of John XXIII and John Paul II.  As I have mentioned before, JPII is Caroline's namesake and it was incredibly special for us to be able to attend his canonization.  Looking back to last summer our future was so uncertain.  The possibility of being able to return to Rome was small because of Caroline's heart issues.  And now to be back in Rome and see JPII declared a saint, its just amazing.  God is pretty darn good.

Rome was swarming with people for the canonization.  There was no way we were going to be able to get any where close to St. Peter's because of the crowds, unless we camped out which is not really an option with a baby.  Instead we went into the city early Sunday and found a nice spot by the Vittorio Emmanuele II monument to watch on a jumbo screen.  It had the added bonus of being close to the Shamrock where we went afterwards and toasted the new saints with a few pints.  I would be remiss if I did not add that we also had a fantastically delicious seafood lunch in Testacio.  America really needs to get on board with the whole little fried octopuses.

Pope Francis on the big screen by Piazza Venezia.

Caroline and cousin Mary Elizabeth

Family

Benedict!  He concelebrated the canonization with Francis.

Eating her rosary.

Cheers to the new saints!


To top off this eventful week, Caroline is cutting her first tooth!  I was able to feel the tip of it for the first time the other day.  Everyone be forewarned, you put your fingers in Caroline's mouth at your own risk now.

We are looking forward to the end of the semester (the student leave in a little over a week, crazy!) and a bit more family time.  Also, MORE GUESTS!!!  Up next, Maria & Mike Convery, and Kate Deiss:)

Rainbow photo op!  The first of many times Caroline will find her parents embarrassing.





Saturday, April 5, 2014

Ciao!

Ciao!  Greetings from Italy:)  We are so happy to be back and to be settling back into la dolce vita.  I promise to get back into the blogging swing of things and post more updates on Caroline.  She is doing really well.  We have met with her cardiologist here in Rome and things are looking good following appointments to check her heart and leg growth (one of her iliac arterties became occluded following her cath procedure post birth resulting in a difference in leg growth).  Other than that she is a normal baby, though her father would say that she is "very advanced." ;)  She started rolling over at three months, both front to back and back to front.  She is five months now and can sit up by herself.  She also loves to stand, assisted of course, she's not that advanced!  This ability to be vertical has come with a virulent rejection of tummy time, think hysterical crying.  In my new mom craziness, I am convinced that she will never learn how to crawl and thus those valuable pathways that crawling forms in the brain will never form and...well, you get the idea. (I think Ryan comes home to hear me babble on about a new insane mom worry at least every other day.)  Caroline is a very vocal baby and smiles a lot.  She has really big blue eyes which garners her quite a bit of attention.  The Italians coo over her and call her amore and patatina (the latter literally translates to small potato).  Caroline has started sipping water from a cup and seems to relish it, pulling the cup to her and trying to get as much as possible.  True to European form she enjoys fizzy water :)  The Italians keep telling us to start her on solid food, aka pasta, but we will wait a bit longer.

In other news, Caroline was recently featured on the C.S. Mott Children's Hospital blog and Facebook page (direct link to the blog article: http://uofmhealthblogs.org/childrens/hero-stories/fetal-cardiac-intervention-reedy/12258/).  We went back and forth on whether to "go public" with our story but finally decided that if by sharing our experience we could give hope to other families out there it was worth it.  Her story got shared on Facebook over 600 times and was liked close to 3,700 times!

Here is a link to C.S. Mott's page on Prenatal Care for Aortic Stenosis: http://www.mottchildren.org/medical-services/prenatal-care-aortic-stenosis  It explains Caroline's condition, critical aortic stenosis, and has videos by two of her doctors.  A link to the blog article about Caroline is featured on the top right of the page.  We really can't say enough what a wonderful place Mott's is.  Without their incredible fetal heart specialists and maternal fetal medicine specialists we would not be where we are today; back in Rome with a thriving five month old.

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!


video



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!