Post Surgery #1

After Destiny came out of the OR late on the night of November 9, 2010 her poor little heart had been through so much that they needed to have her on a heart bypass machine called ECMO (http://en.wikipedia.org/wiki/Extracorporeal_membrane_oxygenation).  Along with her heart not being strong enough to pump, her lungs were also functioning at a less than optimal rate, so although she was ventilated, she was not able to oxygenate her blood on her own. The basic function of ECMO is to help pump blood through the body as well as add the extra oxygen that her body was not able to provide.

While dealing with Destiny being ventilated, and on ECMO we were also trying to manage our own roller coasting emotions, a home, and a toddler. We also had one VERY big worry on our minds, where were we going to stay during all of this?? Thankfully the day after surgery we got a room at The Ronald McDonald House and that took a huge weight off our shoulders. Though it's not the same as being at home, it's somewhere comfortable that we're able to rest and get out of the hospital environment.

We have also been very blessed that my mom and her fiance have been able to take care of Brooklynn for us while we're trying to deal with everything that's going on, and at 10 days after Destiny's surgery we were VERY thankful that we didn't have to deal with Brooklynn all on our own.

We had gone home for a few days to spend time with Brooklynn and take care of things around the house (pay bills, buy groceries etc) when on Thursday November 18, (9 days post surgery) we received a call from the hospital asking that we come up to have a meeting with some doctors. Eric and I decided that he would come up on his own as I was having difficulty travelling back and forth from the c-section. When Eric got to the hospital Destiny's nurse paged the doctors that wanted to talk to him, and he waited. Finally the doctor that wanted to talk to him showed up, the transplant surgeon. He explained how with the kind of trauma  Destiny's heart had gone through during surgery it was very unlikely that she would ever be able to support herself off ECMO, and that we needed to consider our other options.

The options they gave us were compassionate care (where we remover her from all support and let her pass peacefully), or transplant. The doctors were all pretty much convinced that our special little girl was not going to make it. They decided that they would give her the weekend to see how she was doing, and on Monday November 22 we were to meet with the transplant surgeon again. On Friday November 19 they called us to tell us that they had decided to switch her from ECMO to LVAD (http://en.wikipedia.org/wiki/Ventricular_assist_device) which basically would force her body to oxygenate her blood, but would still allow her heart to rest. It was one step closer to her supporting herself, but they were unsure how she would take to the change. She handed the switch much better than anyone thought she would and over the weekend they were able to clamp her off of the machine (make her heart do some of the work on it's own) and she handled it well.

On Monday November 22, just hours before we were to meet with the transplant surgeon, the doctors decided she had been doing well enough to try and take her off LVAD completely, our little fighter was ready to fly on her own, and she certainly did fly! She amazed us, the nurses and the doctors, they had warned us that she would probably be fairly unstable for a while after coming off support as her body had to adjust and they would have to adjust her medications, though she wasn't in the greatest condition coming off support she stayed right where she was.



November 24, 2010-2 days after coming off LVAD

 So instead of having to meet with the transplant surgeon, our little fighter supported herself and slowly started getting better. Her sternum was still open, so the next goal was to get her chest closed up, and that was another really long process!  

Surgery #1

On November 9, 2010 little Destiny who was only just over a week old headed off to the operating room for her Norwood Proceedure, we were told that the operating room was scheduled for 7 hours and also that no news was good news. We were asked that one of us stay in the surgical waiting room at all times incase there was an emergency they needed to inform us of. 

Before surgery November 9, 2010.

So Eric quickly headed down to Tim Hortons to get us tea and coffee while I settled into the waiting room to do what you do in a waiting room..wait. Eric wandered around, and paced like any nervous dad would do, and I started reading a book. Other parents came and went, we chatted with a few, we chatted with each other, and we cried and prayed a lot. Eventually Eric went to get some lunch and convinced me to eat. Then we waited some more. Finally 3pm arrived, 7 hours after they had taken our baby into the operating room and we started getting anxious for news. After another 2 1/2 hours (5:30pm, 9 1/2 hours after they took her) one of the doctors that had been in the OR came to talk to us. He informed us that they had run into some problems they weren't expecting during her surgery, but they had dealt with them and the surgery was finally finished, however they were having problems getting the bleeding to stop. With that we were sent back to the waiting room and the doctor headed back to the OR.

We waited, and waited. Talked to family, cried more, prayed more, and cried even more. Around 8pm Eric convinced me yet again to eat something, and since the waiting room was mostly empty by this time I tried to nap on the horribly uncomfortable couch. After no luck with the nap, I updated  my facebook to let everyone know we were still waiting, a good friend of mine saw this status update and was relatively close to the hospital and decided to come visit with us for a bit. So we chatted and caught up for a few hours while we waited. Around 10:30pm my friend left and they came to tell us they had finally stopped the bleeding and she was out of the OR, but needed about an hour to get her back to her room and hooked up to all the machines and such that she would now be dependant on for a while.

Now being able to rest Eric found me a few blankets and I curled up on the couch for a nap, about an hour and a half later, he woke me up to tell me that we could FINALLY go see our baby girl. It was without a doubt the longest day of both of our lives, and nothing could have prepared us for what we were about to see.



November 12, 2010-3 days post-op. 

We thought our little girl had been through the worst, we would quickly find out that was not to be true.

The begining..

I've never done this blogging thing before, so I'll try and stick to it and hopefully you'll all enjoy following along while I explain what Destiny's condition is, what she's already gone through and where we're going from here. The first few posts here will probably just be catching up to where we are now because I was kind of late getting started on this, but have now decided it's probably a good idea, if you know the story up to this point be patient, I don't want to leave anything out.

In March 2010 my husband Eric and I were thrilled to learn we were expecting a sibling for our daughter Brooklynn, things were going well, all early ultrasounds were looking great! At our 20 week anatomy ultrasound it was discovered that the baby we just found out was going to be a girl had some fluid around her heart and we were scheduled for another ultrasound for a better look. A week later we had another ultrasound, however the it still wasn't clear why the baby had fluid around her heart, so we were sent to McMaster Hospital for a fetal echo cardiogram, during this time it was discovered that the baby had some problems with her heart but it was unclear what exactly, and we were scheduled for another echo cardiogram at Sick Kids Hospital in Toronto (just over an hour away from home on a good traffic day). When we had that one, we had a meeting with a cardiologist who explained that our little girl had Hypoplastic Left Heart Syndrome, which basically means the left ventricle of her heart was VERY under developed and not functioning properly.

What did this mean for our unborn baby? It meant that very shortly after birth she would have to undergo a very complicated open heart surgery, followed by two more later in life, just to repair this one problem and we prayed that there weren't going to be any complications that required more surgery. We were told that she would need to be delivered at Mt. Sinai Hosptial in Toronto, so that she could be immediately transported to Sick Kids to be monitored until surgery.

So our baby girl that was due November 28, 2010 was born by C-section November 1, 2010 and withinn an hour of birth was moved across the street to the Cardiac Critical Care Unit (CCCU) at Sick Kids Hospital, and thus begins her (and our) journey...