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Gavin’s Story

Welcome to our CaringBridge site. We've created it to keep friends and family updated. We appreciate your support and words of hope and encouragement during this time when it matters most.

On March 13, 2013 I gave birth to Gavin Christopher Canning at 8:02am via c-section. He weighed 7lbs 10oz and 20.5 in long. He has an older brother named Jordan and an older sister named Brianna. He is our miracle baby.

Here is our story about how it all began:

On March 13, 2013 I went to Valley Care Hospital for a routine c-section. At 8:02 am I gave birth to Gavin Christopher Canning. He weighed 7lbs 10oz and 20.5 in long. We were so excited to finally meet the Lil guy. I got to hold him in the recovery room once he was all checked out. I held him for hours until I was finally moved into my own room. I breast fed him right after the delivery and around noon it was time to feed again. I tried and tried to get him to latch on but he wouldn't. I noticed that he was breathing funny and his was choking on his saliva. I asked the nurse to come and check him out. I thought maybe I was just being paranoid but turns out I wasn't. The nurse said there could be fluid in the lungs and showed me how to suction his mouth. Then she decided to listen to his chest. She said I will be right back and went to get the pediatrician. Now during this time my two other kids were in the room. The pediatrician listened to Gavin's chest and said they needed to take him to the nursery to be checked out and asked Mike to go with them. An hour went by and then Mike came back crying. He said something was wrong with Gavin's heart. He wasn't getting enough oxygen in his body. They were going to transfer him to UCSF. We were shocked. They wouldn't allow me to go because I just had surgery but Mike followed them.

At UCSF they ran a bunch of test and decided he needed surgery right away. Mike had to make the decision without me and even though he was nervous doing so, it needed to happen or Gavin wouldn't make it through the night. He had a cardiac cauterization to determine the severity of his condition.

On Saturday March 16th, I was released from Valley Care and headed up to UCSF with Mike to see Gavin for the first time since he was transferred. I was excited but nervous at the same time because I had no idea what to expect. Mike has been keeping my informed with his condition but you never really know how bad things are until you see it with your own eyes.

After seeing Gavin lying there all helpless and connected to all these tubes and machines I completely lost it. I couldn't believe that happy Lil boy I held hours after delivery was the same little boy lying there. The Cardiologist came in the room and said we needed to talk. I was nervous as to what she was about to tell us.

She said Gavin has HLHS, Hypoplastic Left Heart Syndrome. Here is a link that will best explain his condition,

His full diagnosis is HLHS, Aortic Stenosis, Mitral Stenosis and Endocardial Fibroelastosis. He is currently taking 1/4 Asprin, Lasik, Captopril and Vitamin D.

He would need a series of surgeries and then a heart transplant later on in life. Mike and I were completely shocked. We knew it was serious but had no clue it was that serious. They said he would need the first of 3 surgeries right away. So on 3/18/13 Gavin had the Norwood operation. He did really well with the surgery and was able to be released on 4/5/13. He went home with an NG tube for feeding. And he is on 4 different medications. Somewhere between 3-6 months he will have the Glenn operation and then somewhere between 3-5 yrs he will have the Fontan operation. He will see a cardiologist every couple a weeks to watch him closely and see how he does before the next surgery. He still needs to gain some more weight. It has been a long couple of months. But Gavin is a fighter. He is truly a blessing. He has taught us to appreciate each other more because we don't know how long we will have with each other.

I will try to update you as often as we can.

Latest Journal Update

It's been a while

Wow, I guess it has been a while since I have posted an update on Gavin. First of all, we have moved. Mike got orders to Bodega Bay, CA. So we are living in Petaluma, CA. It works out because we can actually keep our same Cardiologist. And still go to Stanford. We are adjusting to the new location. I miss my family and friends but we are only 2 hours away. The kids are trying to adjust to their new schools and making friends. Also, keeping me busy with their activities as usual.

Gavin is doing pretty well. We saw his Cardiologist and GI doctors in July. They are stressing that we really need to get some weight on Gavin. They want to get him scheduled for his Fontan early next year. He is finally up to 23 lbs but he needs to be 33 lbs for the Fontan. I think after our next visit in November they are going to schedule him for his heart cath. I am nervous to see how things are going. He seems to be doing well. But it just makes me nervous when we start talking about another surgery. The second one was a nightmare. I am not ready to do it all over again. But no one ever is.

Gavin is being evaluated for Speech Therapy and Feeding Therapy. He is eating by mouth but he still has a problem with choking. I make sure to cut his food up in smaller pieces. He eats but its mainly grazing. He just doesn't have much of an appetite. I am going go try to give him a little coconut oil through his feeding tube at nap time and see if that helps with weight gain. I have been told it has worked for other kids so we will see.

All in all Gavin is doing well. We have to get through this cold and flu season with minimal illnesses. He really can't afford to lose any weight. And we are trying our hardest to keep him out of the hospital until his Fontan. So the kids know to change their clothes, wash their hands and sanitize. Cross your fingers for us. The kids will be taking some pictures soon and I will update with new pictures. He is getting so big.