Just over a year ago, at our 20 week ultrasound /echo scan we found out our first born child had a heart defect. He had Hypoplastic Left Heart Syndrome or HLHS for short. Basically this meant the left side of his heart wasn’t forming.
We were informed that with HLHS, our son was given a 60% chance to live till the age of 10, and of the 40% who don’t make it, they usually pass in the first year of life. There is no cure, just treatment to allow the heart to last as long as possible. One thing they did say that was hard to hear.. that everything they do from this point on would be considered palliative care.
What this meant was that Carrie would have to give birth in Toronto at a high risk facility and once born, our boy ( we didn’t know the sex til’ birth☺). would then be transferred to SickKids right away (across the street!).
Once born 3 open heart surgeries would be required to allow the heart to function off just the right side. The 1st within 10 days of birth, the 2nd at 5-6 months, and the 3rd at 2-3 years of age.Regardless we knew there was a long road ahead!
So for the rest of the pregnancy we made multiple trips to Toronto (1-2 hrs away, depending on traffic )for check ups on both baby and mom. Carrie was doing great and handling the pregnancy beautifully, and our baby was growing and doing great.. outside of his heart. We were consistently told that we had a big baby…
Well the time came for Carrie to be induced (they wanted to insure the birth happened in Toronto ). On June 16th at 2pm Carrie was induced…. it wasn’t til’ June 18 at 7:30pm that Camden William Alexander Gilroy came into this world… by c-section. .. weighting 10lbs 2 oz! We had a big boy! I called him my Big Little Man!!
At this point my life changed… I now understood what unconditional love was.. my boy was my world!
On June 23rd Camden was scheduled for his 1st open heart surgery. He was in the ER for about 8hrs, the surgeon came out 3 times to see us.. basically he informed us that it was a difficult procedure and Camden may have a long recovery ahead.
To make a very long story somewhat shorter:). . Camden spent 5 months at SickKids.. all except 10 days of this was in critical care. During this time.. he had multiple cardiac arrests.. was put on a form of life support called ECMO twice… and was assessed for heart transplant… for a time (those 10 days) he was strong enough that he was off almost all his iv meds… because of his improvement it was decided not to list him for transplant and there was even talk of getting him home before his 2nd surgery.
But this was not to be. Camden arrested while Carrie was holding him, the nurse was able to revive him and back to critical care we went.
His heart function was taking a turn for the worst and a few days later Camden was put back on ECMO(2nd time). He was on support for 8 days.. we had a discussion with the Dr’s it was decided to take him off ECMO. .. we were told that they didn’t know how long we had.. it could be hours or days and that at being listed for transplant was no longer an option.
About 11hrs after Camden was taken off ECMO we got the call.. he was having arrhythmia issues and they didn’t think he would last much longer.
Well they forgot that they had a little warrior in Camden! Within 2 days he stabilized and actually got a little stronger!
This was in September 2015.. Camden was listed for heart transplant… we knew we had limited time with our boy… so we made the best of every single day we had with our Big Little Man! He held on for 2 more months fighting through infections /fevers, more arrhythmia, he always had a smile for us… he knew how to give the nurses dirty looks (I think that was the ginger in him!)… he liked to watch his Baby Einstein on the IPAD.. he liked his head massages… he liked to hold my finger.. but most of all he loved being held.. especially when mommy was doing the holding!
On November 22nd his heart started to let go.. we knew that we only had a few more hours with him, we held him as much as we could.. we had molds done of his foot and of him holding my finger… when the time came we disconnected all his meds and respirator. We spent the last few minutes looking at his beautiful little face and our hands on his heart… we felt his very last heartbeat….
November 23rd at 12:50am Camden earned his wings.