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!


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