A little over NINE years ago, Eva had her FIRST open heart surgery. The most complex of all heart surgeries because the surgeon is operating on a heart the size of a walnut. She has beat ALL the odds stacked up against her.
Here is the original post from September 4th, 2016. Eva was FOUR days old for her FIRST open heart surgery. SHE IS THE STRONGEST PERSON WE KNOW. Forever grateful for her Teams in Seattle, Honolulu, Philadelphia and Tampa.
Our job, as Eva's parents, is not only to educate ourselves & our daughter, but also everyone around us about Hypoplastic Left Heart Syndrome (HLHS), a very rare CHD.
1. In the U.S. about 960 babies a year are born with HLHS.
2. HLHS is a CHD in which the left side of the heart, the side that pumps oxygenated blood to your body, is severely underdeveloped.
3. A series of atleast 3 open heart surgeries is required for these beautiful kiddos to survive. Without them, they will pass away.
4. Families just like ours go through the following:
-Postpartum, your baby is automatically taken to the NICU & hooked up to a billion machines/meds.
-We were very lucky & have gotten to hold Eva about 4 times each since delivery.
-Our daughter was transferred to
Seattle Children's Hospital within 48 hrs of delivery & underwent her Norwood Surgery at 4 days of life.
-Post surgery, our daughter was hooked up to a billion machines to monitor her, her progress and to administer all the medications required for each HLHS baby. She is monitored 24 hrs a day by a wonderful team of Doctors & RNs.
-HLHS babies are hooked up to an ng tube for feeding which means no skin to skin contact/breast feeding and they are fed small amounts of "food" via the ng tube.
-Initially, & in many cases for 4-6 weeks, many parents stay at the Children's Hospital in the same room as their child.
-We currently, are in a sense, homeless. Just as many of the other families going through this battle with their kiddos. Our apartment/belongings are all in Okinawa while we are here in Seattle with 2 suitcases a piece. This is our reality as HLHS parents, for now.
-As parents, we are kind of learning a foreign language, with all of the medical terms associate with Eva's heart & procedures.
-Jon Jay & I have worked really hard to educate ourselves on HLHS, asked a million questions to our Doctors/Nurses and read a ton of stories from other HLHS survivors & parents, BUT....no matter how much you educate yourself & try to mentally & emotionally prepare yourself, you are NEVER prepared for seeing YOUR child post surgery.
-Eva is one TOUGH & STRONG little girl & SUCH a fighter!! We are SO proud of her!! Everything in our lives revolves around her....one day at a time.
-PLEASE keep those positive vibes, thoughts & prayers coming!! We truly love & appreciate them!!!!!
#HLHS, #PostNorwood, #SeattleChildrensHospital
