My name is Lucy. I was born on March 12 and I have a twin brother, Lucas and a big brother, Addison. My brothers are doing great but I am still here fighting in the hospital. I was born with Congenital Diaphragmatic Hernia (CDH), which means all of my organs grew up inside of my chest. I totally rocked the surgery to put my organs back as close as possible to where they belong. I will always have issues with certain foods and will have to be careful of germs because I do not have a spleen to boost my immune system. While I've been recovering I've been trying really hard to get the hang of this eating thing but for now I am still using a feeding tube. I've graduated out of the Neonatal Intensive Care Unit (NICU) and am now in the Pediatric Intensive Care Unit (PICU).
On June 5 I underwent open heart sugery to fix a very serious heart condition called Anomalous Left Coronary Artery Pulmonary Artery (ALCAPA). When I was born my left coronary artery was connected to the pulmonary artery instead of the aorta. So the sugergeons had to stop my heart and collapse my lungs so they could detach the left coronary artery from the pulmonary artery and stitch it into the correct position on the aorta. I also had a coarction, which means one of the arteries in my heart was too narrow. When the doctors fixed that it required them to drop my body temperature to 18 degrees. My heart is now fixed but my lungs were so tired that I had to go back on ECMO, (extracorporeal membrane oxygenation-life support) for 3 days because my lungs couldn't work on their own and the doctors couldn't close my chest for a week after being taken off ECMO because my Pulmonary Hypertension had worsened. I am currently on an oscillator to help my lungs but they are still so tired and they are not responding like the doctors said they should. My Pulmonary Hypertension is now very serious, which means that there is restriction of the blood vessels around my lungs. The pressure on my lungs is so high that it puts a large strain on my heart. So for now I am completely paralyzed and asleep to help eliminate me from any pain and for my lungs to get back into shape.
(update as of 7/30/14)
I have successfully been taken off the oscillator and am now on a ventilator, however, I am requiring so much respiratory support that the doctors have decided it is best for me to have a tracheostomy. This is a surgerical procedure that will create an opening through my neck into my trachea (windpipe). A tube will be placed through this opening to provide an airway and to remove secretions from my lungs. I will have this trach for 4 months or possibly for as many as 4 years. The doctors will also be placing a gastrostomy tube (G-tube). This tube will be inserted through my abdomen and will deliver my needed nutrition directly to my stomach.
The doctors are still optimistic that one day all of this will be a distant memory but are still very concerned that I have not progressed as they would like. They have shaken things up a bit and have started giving me steroids and are hoping that my lungs will finally start cooperating so my Mommy and Daddy can stop growing grey hairs. If this doesn't work there is a medication that can be given to me through my central line but I would have to go home on the medication and have a permanent central line with a pump drip and there is no way to know if I will ever be able to stop taking it, which could cause more complications later.
Thank you so much for all of your prayers! I am working very hard to show everyone just how strong I am so I can get home and get in all kinds of trouble with my brothers. Unfortunately the doctors have told my mommy and Daddy that they are uncertain of when my return home will be and it looks like I will be here for another 4 months or more.
All my love,
Lucy's parents, Allie and Will Gardner, have been residing at the Charlottesville Ronald McDonald house while their precious little girl continues to fight her battle. Lucy will require countless trips back to Charolottesville for follow up appointments and will need to have a very sterile living environment with heavily filtered air. When they began to do home improvements to prepare for their new arrivals the family became displaced from their home when black mold was discovered. Home renovations began but have unfortunatley not progressed as they have not been able to finance the necessary repairs to safely return home. In addition, since Allie isn't working and Will has been able to only work minimally the everyday bills are becoming excessively backed up and the medical bills that are coming in are very high. We want to thank everyone who has and who continues to provide support, love, faith and prayers. If you find yourself in a position to help financially please do so and most importantly please continue to pray and pass Lucy's story along.
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