Ring, Ring...Hello?

The title of this post is currently the story of our lives. Or at least waiting by the phone is. I kind of did it for most of Monday, all of Tuesday, and by today I was losing my mind! We are waiting for the hospital to phone to tell us when Abbi's surgery will be. Two weeks ago we got the call. That was on a Monday and they wanted her to come in on the Wednesday for the surgery. But she had a cold a week prior. So they need to be three weeks cold free before they will operate. That brings us to this past Monday...

So basically we need to be prepared for this phone call anytime. If one can really be prepared for such things. I think on Monday, I thought I was prepared. By Tuesday, hmm, not so much. By today, back to the whole..."Hey, I have a free week in March 2010? Can we squeeze it in then?"

Before Abbi's nap today, I brought out her photo album and led her up to the surgery. When we've looked at it before she is convinced the baby is Gabe (although judging by the amount of pink in his wardrobe, he might be a cross-dresser!). So I showed her "Baby Abbi" and when Abbi was a baby. She finally seemed to understand that she is indeed the baby. So once we got that established we moved onto the surgery.

We are calling it "Abbi's sleepover at the doctor." She gets the concept of sleeping over from staying at Rob's parent's place. So I told her that the doctor's need to fix her heart to make it work better. We've kind of discussed her scar, but really, its so pale, you really can't notice it much anymore - which is so amazing to me!

I'm hoping to take her to Build-A-Bear a few days before, and she will get to pick out her very own special bear to take to her sleepover at the doctor. And I'm pretty sure they still do this, put the little heart inside before they stuff it. I hope that will be somewhat significant. Like the bear has a special heart, just like you.

Her previous surgery she was so young (a few days shy of 5 months old), so she really had no concept of what was taking place. Or at least didn't appear to have a concept.

** Just as a head's up for you queasy folks out there, there is some "medi-speak" and some graphic pictures from Abbi's first surgery below. I don't want to be responsible for anyone fainting at their computer desk!

For those of you who don't know about Abbi's heart condition, I thought I might do a little recap. Abbi has Hypoplastic Left Heart Syndrome (HLHS), as well as Double Outlet Right Ventricle (DORV). Some heart parent's know the procedures and the inner workings of it all, probably as well as the doctors do. Me, not so much. I do know that HLHS means that the left side of her heart is underdeveloped. But in Abbi's case its only the left ventricle that's not working, rather than the whole left side. So I think in some senses, the DORV makes up for it. The right ventricle is pumping blood for both ventricles. So although her heart's obviuosly not working at its full capacity, it still does what it needs to do.

Children with similar heart conditions need a series of three surgeries. All at different ages and stages to allow their heart to adapt. When she was born she was taken right away to the Stollery Children's Hospital for monitoring (she was born in another hospital in the city, and then they transport the babies to the Stollery). They had to see if she needed the first procedure, called the Norwood.

Amazingly she didn't need that surgery. She was in for 6 days, and we were able to take her home. It was a hard time. Mainly because we were new parents, knew nothing about babies, let alone little ones with heart conditions. We got through it with a lot of help from our friends. And of course, the Big Guy giving us grace, patience, and wisdom from above.

During a procedure when she was about 4 months old she got a blood clot in an artery in her groin. Its a similar procedure to an angiogram where they are sending a camera up to explore the heart (in preparation for the surgery). There is a risk of clotting, and yup, she clotted. That meant that she needed a needle every twelve hours of a blood thinner, up until the surgery. So that meant two months of two pokes a day. Me, being the fainter, could do no such thing. So it fell on Rob. He'd give her a needle in her little thigh at 6:00am, and go to work. He'd get home from work at 6:00pm and give her another needle in her little thigh. I felt so bad for the both of them.

Fast forward to the surgery in late November 2006. She was just about 5 months old. This is us at 7:00am in the morning, at the Pre-Admission Clinic (PAC). As you can see, its not really a great picture of any of us, as I think we are still half asleep!
This is the PAC nurse, Cindy, getting Abbi all prepped for surgery. They put a numbing cream on the backs of their hands and feet, and then wrap it with gauze. That way whatever limb they decide to use, its already numb, and its easier to get the needle in without irritating the child as much.

*Side note about Cindy. Did any of you happen to watch ER, and saw the second to last episode where they featured Camp Del Corazon? Its a camp specifically catered to heart kids. The Stollery sends heart kids there, and every year Cindy goes down as a chaperone. The camp is actually on Catalina Island, but as I understand it, ER is filmed in L.A., and the producer is friends with one of the camp's founders. So I thought it was great how they featured these heart kids. The two main kids were actors (one of whom had Abbi's exact condition), but the rest of the kids were all real heart kids who attend the camp. Kind of cool!
Some more pre-op pictures. Definitely not the most glamorous shots that early in the morning, pre-coffee! Once she was taken in, we were off to Denny's. OK, OK, I realize that needs a little explaining. Rob and I used to go out for breakfast at Denny's quite a bit, but as the kid(s) came along, that has happened less and less. So we decided, well, we have three hours to burn, might as well go to Denny's. And so the tradition has stuck. During every lengthy procedure that Abbi has had, we can be found at Denny's. Weird? Slightly. Delicious? Yes!

So we got back from Denny's and we were riding the elevator up to the waiting area. As we are walking down the corridor, along comes the surgeon, drinking a coffee, totally casual. "UM, excuse me, shouldn't you be operating on my baby?" "Oh yeah, we are all done. It went really well, blah, blah." Whew, still a bit of a shocker!

Then, just like that, she's lying on a bed in an ICU, filled with tubes, wires, on a ventilator, etc, etc. I mean I suppose it was 3 hours later, but still, last thing you knew you were holding your precious, seemingly healthy baby.
Definitely hard to look at, I know. Even moreso when its your own child. I still remember the walk through we got of the PICU before Abbi was born. They were trying to prepare us for what she might look like. I remember coming to the beside of a little girl, probably the age that Abbi is now. I nearly fainted. I'm not a medical person. I hate needles, I hate blood. I generally dislike doctors. But this whole experience has changed that for me, in a sense. I still hate needles, but I also have to be strong for Abbi when she gets them. I mean can you imagine Abbi crying because she's scared, and I'm crying because I'm scared...and then I faint...oh my, what a gong show! Thankfully God has given me a tough skin through all of this, most days anyway...

Abbi was in the ICU for two days, and then transferred to a unit called the I.C.E. room. Stands for Intermediate Care something. This is her hanging out with Daddy, and also her first taste of food since the surgery. She chowed that bottle down like nobody's business! Then we were onto the ward. I believe its one nurse to four patients on the ward, so at that point, its more necessary for the parent's to play a bigger role in their child's care. In the picture below she is not looking too impressed with any of it, I think this is two days before we went home.
This is Ruth (or Gammy, when referred to by the kids) at Abbi's bedside, quilting. This was the first quilt she ever made, and of course, it was for Abbi. Rob's Mom also came in to help out, although I don't have any pictures of her at the hospital.
While we were there, they set up their Christmas tree. In the evenings we would go sit and watch them put this giant tree together. Probably three stories high, in the atrium of the Stollery.
Abbi was released on December 3rd (6 days later - see a theme here?). The day before my birthday, and it was the best birthday present I have ever gotten!
So here we are, nearly 2.5 years later, preparing for surgery number two (normally surgery #3 for most heart kids). Its called the Fontan. This should be the last surgery needed. Many kids go through all of the surgeries and can go through life quite well. As they get older they may have a harder time keeping up physically, and get tired more often than most of us do, but generally they can live pretty normal lives.

That's a bit of our story. Its been hard at times, but we have known God's presence throughout. And we have seen a determined, strong little girl through it all. She is tons of fun, a delight, most days (although Old MacDonald Had A Farm does get old on the 20th verse!), as well as stubborn, and sassy. Both of those last two things might make the hospital experience fairly difficult (considering she is terrified of all things medical), but it also means she's a fighter. She has already overcome so much already, and we are praying, hoping that she will continue.

The funny part? As I was typing this out...I got the call! Pre-Admission Clinic May 5th, and the surgery is scheduled for May 14th. Wow. I finally feel like we can "prepare" in some senses. Of course the dates don't always mean anything. It could get bumped up, it could get pushed back. Those things you really have no control over, but at least we have a general timeline.

So until then, there is much to plan for, prepare for, and pray for...

Below are a few pictures of her in the first days that we brought her home after her surgery. Isn't God good?