Julia, was born June 25^th 2001 at 5:01PM.  Before the night was over her Pediatrician came to us and said that Julia had a heart murmur.  By her fourth day of life we were in Marshfield meeting with Julie Dietz M.D., a Pediatric Cardiologist.  After listening to Julia's heart for a few minutes, Dr. Dietz reported that what she heard was "not normal."  An echocardiogram confirmed that our daughter had Tetralogy of Fallot.  Of course we had never heard of such a thing and were horrified.  I will never forget my husband lying on the examining table, holding our daughter with tears streaming down his face.  We were assured that the defect could be repaired.  Immediately we knew we wanted the repair done in Milwaukee at Children's Hospital. 

We needed to wait three months for surgery for Julia's lungs to mature.  Throughout the summer we watched our daughter become increasingly exhausted, only finishing a ½ an ounce of milk at a time before falling asleep, we watched to see if she was going to have "tet spells" and made weekly trips to our local Pediatrician to check oxygen levels and blood pressure.  We journeyed to Milwaukee on September 24^th.  It was the longest ride of our lives.  Julia's surgery was scheduled for September 26^th.  On September 25^th we arrived at Children's Hospital for her pre-surgery appointment.  The moment we walked into Children's Hospital with our tiny 8 pound daughter I had a strong feeling everything would be okay.   We were told within an hour that Julia's surgery had been rescheduled for September 27^th due to an emergency situation. We headed back to the hotel for another day of waiting. On the morning of September 27^th we dressed our daughter in her tiny pajamas and headed to Children's.  The rest of the day is very fuzzy for my husband and I.  I remember everyone being very kind to us.

There were over 20 family members and friends with us that day.  Children's Hospital provided us with a large private waiting room.  The rest of the day is a blur.  I remember the cardiothoracic surgery nurse, wonderful Maryanne, giving us updates by the hour.  The surgery began sometime around noon and lasted close to eight hours.  I remember Maryanne telling us that Julia had an extra venacava, and that it would be fine, however, surgery would take a little longer then normal.  I remember Maryanne telling us that it would only be about an hour more and that they were just finishing up.  I remember waiting and waiting for Maryanne and then seeing her far down the hallway, walking towards my husband and I, giving us two thumbs up.  I remember the weight of the world being lifted off of my shoulders that very second.

For the next 13 days Children's Hospital was our home.  My husband and I never left Julia alone.  The support from the hospital staff was amazing.  My husband and I were in constant wonderment that the doctors, physician's assistants and nurses were so kind and willing to answer our many questions.  I am quite sure I may have been the most annoying mother they had ever encountered with my numerous questions.  Dr. Tweddell and Dr. Berger stopped by daily. The nurses not only took care of Julia, they took care of us.  And although I missed the orange slush drink I discovered in the coffee shop, we were happy to finally go home.  The day we left the hospital, with our daughter that now had a heart that was "fixed," was the happiest day of our lives. I doubt that there will be a day that goes by, for the rest of my life, that I will not think about Children's Hospital and our time there.  The lessons we learned about medicine, cardiology and the human body and how it functions at Children's Hospital are countless, however the lessons we learned about life and human kindness are invaluable.  Dr. Tweddell and his staff saved Julia's life. 

Julia grew into a funny and vibrant little girl. She attends dance and gymnastics. She skis the Barnebirkie ski race for children in Hayward, Wisconsin every year. Everything seemed great however; at her routine, annual appointment on March 08, 2007 her cardiologist looked concerned. An echocardiogram proved that there was reason.  Julia’s Pulmonary valve was leaking and needed to be replaced. Once again, fear and devastation. So soon?  We scheduled surgery for after Kindergarten in the Summer of 2007.  Back to Milwaukee , back to Dr. Tweddell, back to the fear of the unknown.  We arrived in Milwaukee , as we did 6 years before, with our little girl.  The surgery was much quicker this time. The amazing staff came out hourly with updates to let us know how it was progressing.  Patience.  She did well. In the ICU she turned and looked at me an hour after surgery and asked, “Are they done yet Mom?’  Our stay was shorter this time. A few days if I recall. We took turns by her side, holding her hand, watching movies and eating milkshakes. Presently, Julia is entering 2nd grade, was recently involved in the local production of The Jungle Book, is involved with dance and gymnastics and Brownies. She is a beautiful and happy little girl. Children’s Hospital of Wisconsin is amazing and nothing short of a gift to children that are in need of the incredible services it offers.