Lily’s Story

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My wife Jessica and I always knew that we were going to build our family through adoption. It always felt like the best fit for the two of us and even before our wedding we had started the process to become an “adopt-ready” family in Ontario. One of the steps you take in this process is to meet with the social worker assigned to you and go through a rather long list of THINGS that you are, or are not, comfortable with in a potential child. The list is very detailed and we found ourselves having impromptu discussions to decide things as we went along. Then our social worker asked us if we would consider a child with Down syndrome.   Jessica answered before I even had a chance to think about it: a strong, resounding, “Absolutely!”

What we didn’t know at the time was that a little girl had just been born who would come into our lives and change just about everything. She was born with Down syndrome and with that a couple of the heart defects that are more common with Down syndrome diagnosis. While her birth parents were struggling to make the hardest decision of their lives, this little girl had her first open-heart surgery to help correct an atrioventricular septal defect (AVSD) and co-arctation of the aorta. In the end, her birth parents made the tough decision to place her for adoption in order to give her the best life they could and shortly afterwards our social worker gave us a call – she thought that she had just the child for us. After the span of a couple months (what felt like the longest months of our lives), we finally got to meet our Lily.

In the long version of this story, there were home visits and a giant learning curve as we learned to feed this tiny girl with an Ng tube and syringe. We learned about the symptoms of heart failure and what to look out for. We jumped in head first, as we joined this little girl for her pre-op ECHO and EKG, and on the day she came home with us for good, we met her amazing cardiologist who walked us through exactly what they had planned for her next surgery. We left that appointment feeling a little overwhelmed and thankful that we had almost a week to prepare ourselves….until the phone rang at 9:30pm that night. There was some concern that another surgery would bump Lily’s the following week; would we be able to bring Lily in for her surgery tomorrow?

Time can play tricks on your brain and that day was the longest and fastest day that I have ever lived through. Someone had warned us earlier that Lily’s surgeon often brought families into a room to give them updates at the end of the surgery and not to worry because that didn’t mean he was going to give us bad news. So, when he appeared in front of us hours later, we weren’t shocked when he motioned for us to join him in the smaller sitting room. Then he began to speak. He told us that while the AVSD repair went incredibly well, they were able to confirm a diagnosis of Pulmonary Vein Stenosis. He explained that with this condition, the veins that bring oxygenated blood from the lungs to the heart to pump out to the rest of body narrow and close off completely. He went on to explain that they attempted to repair and open up the veins but that the prognosis was not good: the veins would continue to close over time until Lily lost function of the lung completely. In a blur, we heard words like, “progressive”, “transplant”, and “fatal”. And we just stood there, in total and complete shock: we had just gotten Lily and now we might lose her.

Lily’s recovery had a couple bumps in the road: her sternum remained open for 4 days to allow the swelling to recede; she developed a chylothorax which created a number of pleural effusions (pockets of fluid around the heart and lungs). As first-time moms, and now first-time heart moms, we were terrified. We had no idea what any of these were and what they meant for her recovery. While we were surrounded by so much support and kindness from everyone we encountered, we just wanted to be at home but at the same time, felt very secure knowing that there was always an extra set of eyes watching this little girl. Finally, after 3 weeks, we got the golden ticket: we were allowed to go home!

4 days later, we wished we had never left. We had an exhausting 24 hours: Lily wouldn’t settle and would sleep for only 20 minute bursts before waking up in tears. Shortly after I handed her off to Jessica so that I could get some sleep, I heard a scream: Jessica telling me that Lily had stopped breathing. The next few hours are a blur of calling 911, watching paramedics grab her and run out of the house, having her revived at our local hospital and then transferred to Sick Kids, watching as the police shut down Bay Street so they could get our baby there faster.

We never did find out what caused Lily’s cardiac arrest, a thought that still haunts us to this day. After being readmitted to Sick Kids an ECHO and heart catheter showed that Lily’s left pulmonary veins had closed off completely and she no longer had function of that lung. They also found that a blood clot had formed on her tricuspid valve. There was no way of knowing which of these caused her cardiac arrest or if it was something else entirely and suddenly we were in a new reality. Within 3 days, Lily started having seizures that were indicative of a brain injury, which was confirmed by an EEG and MRI. It seemed as though the cardiac arrest had hit a giant RESET button on Lily’s development and we had a brand new infant. The brain injury affected her sight and caused a Cortical Visual Impairment: for days, we shone flashlight and light-up toys in front of her, hoping desperately for a reaction but she looked right through them.

That was 2 ½ years ago and it’s been the most amazing journey. We’ve had our share of struggles: worrying about weight gain and a developmental delay that sometimes feels impossible to overcome. But then we just look at Lily and see all of the amazing things she has done since that terrible, horrible, no-good, very bad, day. Her vision has come back, she is babbling and giggling up a storm and she is starting school in September. Her heart is strong and her lung pressures have remained stable: we are on yearly ECHO’s! While we have no idea how her future will play out – the word transplant is still on the horizon – she amazes us every single day and she continues to astonish us with how much willpower she has just to keep moving forward.

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Crystal

Crystal Trumper  is a regular blogger for Cardiac Kids.  Read her bio and more about Lily’s story here

Be sure to check back next week for Jean’s first post!

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