About Monkeydoodle and her Surgery

Our Sweet Sophia Caroline entered our world at 5:12 am on August 17, 2010 weighing 5lbs. 4 oz. and measured 18 inches long.  From the start she was just the sweetest little person on Earth.  She was born with a little jaundice (that went away quickly with bili treatments) but other than that… healthy and beautiful.

Sophia was thriving and gaining weight perfectly on schedule so we had no reason to believe there were any health concerns.   On a routine visit to the doctor in December, 2010 for her 4 month check up, the nurse practitioner said that as she was listening to her heart she could hear a murmur.  It is routine of the practice to refer you to a cardiologist just to “check things out” but that she was doing so well and thriving beautifully we should have no cause for alarm.  I have a heart murmur I have lived with my whole life, myself, so my husband and I had no reason to worry and actually put it out of our minds.

In January, 2011 we went for our visit with a local Pediatric Cardiologist to have an x-ray, Electrocardiogram (EKG), and an echocardiogram (Echo), and blood pressure checks.  We were waiting for the doctor to return to the room after reading the results laughing and playing with Sophia and having a wonderful time.  A few minutes later, the doctor entered the room, sat down, and said “well, the results were not at all what we thought we would find.”  What?  What did he just say?  What does this mean?  My mind started getting cloudy.  He said Sophia has what is called a Coarctation of the Aorta (COarc).   It is defined as a congenital condition whereby the aorta narrows in the area where the ductus arteriosus (ligamentum arteriosum after regression) inserts.  Which, for better understanding, her aorta was too narrow to get proper blood flow to her body so they would need to perform heart surgery, cut out the narrow piece of her aorta, and then piece it back together again.  Sophia would require surgery to repair her heart…and the sooner and younger we could do the surgery the better.

So, we had to wait to schedule the earliest appointment they had for March 15, 2011 (The Ides_of_March) at the Medical University of Charleston (MUSC) in Charleston, SC.  (Three hours away from our home)  So not only do we have to worry about the health of our daughter we now have to worry about all the financial burden that is about to go along with her surgery.  Medical bills, travel expenses, hotel costs, food costs, etc.  Our heads were swimming with all of this information overload.  We were told about a wonderful non-profit group, Palmetto Hearts (www.palmettohearts.org), that not only provides assistance to families in South Carolina with children that have been diagnosed with a CHD financially but also mentally.  It was comforting to talk with Sara Wallace, founder of Palmetto Hearts, to find out a little more about what we would see and need to do, what to pack, and so on.  So we prepared and then waited, and waited, and waited for what felt like forever but it was really only a little over 2 months.  We arrived in Charleston late afternoon March 13th and checked in to our hotel (and by the way, everyone at the hotel was very kind and helpful – they knew why we were there).  We had to be up bright and early for surgical work-up on March 14th.

I cannot say enough how wonderfully kind everyone at MUSC was.  Everyone we came in contact with from beginning to end were so very thoughtful and kind.  You would think they would all be hardened and uncaring due to all the sickness and sadness they deal with on a daily basis… it was just not so here.  Sophia was a trooper and put up with a LOT of poking and prodding on March 14th (her work-up day).  We really asked a lot of her and she pulled through it very well.  We went home late afternoon and prepared to wake up super early in the morning for her surgery.  Sophia slept in the pack and play very well… almost like she knew she had to gain strength for what she was about to go through.

Bright and early on March 15th we woke up and went in to the hospital.  Got Sophia into one of the tiniest little hospital gowns you have ever seen.  Then we waited for again what felt like an eternity.  It is not like we wanted them to hurry up because that would mean all of this was real and they were really about to operate on our daughter.  But, the waiting was painful and hard to deal with so you want it to go by faster.  Then, the anesthesiologist came in and said they were ready to go and she brought in a really warm and comfy blanket and held out her arms and said, “Wanna go with me?” and Sophia just went to her without a pause… it was amazing!  And off she went… Jeff and I just held each other and cried…. the amazing nurses, doctors, and staff that were in the area just left the room and allowed us to hold each other and cry and get ourselves together.  Again, they were so kind and thoughtful.

So again, we waited… for 5 hours we waited… while our sweet daughter was being put under anesthesia and operated on… while they stopped her heart to cut a piece of it out and sew it back together… we waited.  We did receive updates every hour from the nurses, waiting room assistant, and surgeon’s assistants.  But that was the longest 5 hours of our lives because it was our daughter under the knife.  When we got the news that the doctor had completed the surgery and Sophia was in recovery, it was the best thing we could have ever heard!  We spoke with the doctor shortly after we got that page and he said that Sophia did wonderfully and the repair went perfectly.  We are so thankful for that!  Now let the healing begin.

While we were in the MUSC PCICU waiting room we heard some very sad stories of other families babies about how some of them had been in there for days, weeks, and months.  Sophia is so fortunate that her CHD was, while very stressful and difficult at the time, relatively easy in the big scheme of things to have to have repaired.  So many of the babies there are not as fortunate as Sophia.  They have many other conditions, some conditions not even fully diagnosed until weeks later, that makes it not so easy to recover from, if at all.  Our heart just breaks for these babies and their families.

Sophia spent 18 hours in the PCICU (we were told to prepare for a couple of days) and was then transferred to what is called a step-down unit (a regular hospital floor).  Her recovery there was so fantastic that she was able to be released and we came home after 4 days.  (We spent 7 days total in Charleston from beginning to end)

We can never say thank you enough to our doctors and nurses at MUSC for taking such wonderful care of Sophia, Jeff, my Mom, and me.  We are forever grateful to all the other people in our lives (some of whom we have never met) who provided us with meals, financial assistance, and many prayers.  We love you and we thank you so much.

Sophia celebrated her first birthday on August 17, 2011.