As much as I would have loved a little more time to absorb the new information we had just received, my mom and brother showed up at our room about 5 minutes after we arrived. I knew they were coming but had forgotten in the midst of all the events of the morning and early afternoon. I explained the situation to them and was very thankful to have the support. After explaining everything we went down to see Laura in the NICU. We were unable to hold her as her umbilical line was not stable enough so we held her hand and touched her head to help her feel comfortable.
A little while later my dad showed up and I explained the whole thing again – you would think I would tire of explaining it but
the more I explained, the more I understood
so it was good for me to repeat myself. At the end of the day we returned to my room and I started my research. I know better than to take the internet at face value but thankfully there are many good cardiology journals online that you can find for accurate information. I learned that the surgery Laura would have is called an Arterial Switch – the surgeon makes an incision to remove the aorta and the pulmonary artery from the heart, moves them into the correct position and then reattaches them. This part of the surgery is relatively straight-forward and there is not a huge amount of risk involved. The tricky part of the surgery is moving the tiny coronary arteries which provide the heart with blood as they are about 1 mm in diameter on an infant heart. Even with this risk, though,
the success rate of this surgery is an astounding 95-99% – amazing odds.
With most cardiac surgeries, the children are given a life but they will have limitations – with TGA, the child should be able to lead a completely normal, healthy life after surgery. This gave us so much hope and for the first time that day, I again began to picture what Laura’s life could be – sports, music, whatever she wanted.
I got about an hour or two of sleep in between nurses coming in to gently massage my stomach by placing their entire body weight on me and punching me where internal organs were trying to find their proper place. In the morning we went to the NICU to attend rounds where we found out that they would be taking some more “pictures” of Laura’s stomach and head to be sure there weren’t additional defects that came alongside her heart defect. Thankfully, all the pictures showed up clear and Laura officially “only” had a broken heart – everything else was good.
I was discharged that afternoon and my husband and I had to leave Laura at the hospital so we could pack for our 2 week stay (ha ha) in Edmonton. We were planning to stay with my parents in the city for the next couple of days while we waited so we could be closer to the hospital.
The next morning we found out that we would be headed to Edmonton that afternoon and we left around 14:00. Laura and I flew in a King Air jet and my husband and mother drove behind us. We arrived in Edmonton in the early evening where we were transported by ambulance to the hospital.
Once in the NICU at the Stollery, Laura was assessed and then they began work on her ECHO(ultrasound of her heart) to confirm her diagnosis and be sure they were ready for her surgery which they were thinking would happen two days later, on September 15th. While they were taking their pictures I was in charge of giving Laura tootsweet(sugar water) to keep her calm – this is essentially an acceptable form of crack for babies – they can’t get enough! During the ECHO I was introduced to the pumping room where mothers from the NICU would gather to pump milk for their babies – this is a place I would frequent throughout our stay in Edmonton. It was a lovely room with a small curtain in between some of the chairs… but not all of them – it was a bit weird but you got used to it. After the initial shock of seeing pairs of breasts hanging out it was actually nice to have a quiet place to chat with other moms in similar situations.
The ECHO took about 3 hours so I continued to sit and wait at Laura’s bedside while I waited for my husband and mom to show up – they arrived late that evening with some excellent news – they had found us a place to stay for free! Our good friend in the Salvation Army had an empty apartment that she said we could use for as long as we needed – what a blessing! The ECHO finally finished and we said goodnight to Laura so we could go get settled into the apartment. That night I slept for the first time in 72 hours – I’m not sure I have ever slept so soundly in my life (if you ignore the fact that due to postpartum issues, I had to go pee every couple hours and pump every 3 hours!). Late that night my dad arrived in Edmonton as well- one of the biggest blessings during our stay was having my parents with us for the first month that we were there – they were completely willing to take on the role of maid, cook and chauffeur so that we could focus our energy on Laura. It was also nice to have our very own personal chaplain there as my dad is a fantastic minister.
In the morning it was time to head into the hospital to see Laura. We got there bright and early and we were able to hold Laura for the first time since she was taken from us the day she was born! We spent all day taking turns holding Laura and I was able to try to breastfeed her as well. It seems like a ridiculous thing to be excited about but it was nice to be given the chance to do something normal with her. Unfortunately, as it turns out, there is nothing normal about breastfeeding a baby with lines and tubes coming out of them. Laura was also getting frustrated at the whole process because she hadn’t had to work for food in a couple of days and she got a bit lazy- why work if a nurse can just put the food in her belly through her feeding tube!? The frustration would be tolerable except that when Laura got upset, her oxygen levels dropped and her respiratory rate shot up making her breathing become quite laboured.
Thursday morning we came in nice and early to see Laura before surgery and to meet with her surgeon. When we arrived we found out that her surgery would be moved to the next day but that the surgeon was still coming around to meet with us that day. We were excited to meet him and hear what he had to say about our daughter. I had done my research the day before and found that he was the head of pediatric cardiothoracic surgery and that he had 30+ years’ experience so we had the utmost confidence in him.
When we met the surgeon he was not exactly what we expected. He was a wonderful man with a lovely demeanour. It turned out he was from Saskatoon and grew up right near where my parents were living. Now, if I said that he was a warm man That might be stretching the truth but he was very easy to talk to and he got his point across very well. He sat us down and told us that the reason he had moved the surgery was because the ECHO that had been done showed that Laura’s condition was a bit more complicated than we had initially thought. We found out that there were three abnormalities to her heart in addition to her TGA: she had a leaky mitral valve, an extra flap of tissue right after the mitral valve and most concerning, her coronary arteries did not appear to be in the normal place. The mitral valve would possibly have to be replaced when she was a bit older and the flap would not likely cause any issue but he needed time to study her coronary arteries as they were likely to prove to be a difficult part of the surgery. We signed the consent forms and said goodbye to our daughter’s surgeon. We were grateful that although we wanted the surgery to happen as soon as possible, we got one more day to hold her and the surgeon was taking the time he needed to be completely prepared for her operation.