Edmonton & Calgary NICU

From the moment we found out about Evanna’s CHD (congenital heart defect), we were told that after she was born she would be transferred over to the Stollery NICU in Edmonton, as all pediatric cardiology surgeries in Western Canada are done there. However, before Evanna was born, they weren’t sure she had a ductus arteriosus (a blood vessel connecting the pulmonary artery to the proximal descending aorta. It allows most of the blood from the right ventricle to bypass the fetus's fluid-filled non-functioning lungs, which closes soon after the baby is born), or something called major aortopulmonary collateral arteries (MAPCAs - vessels that connect the systemic and pulmonary arterial vasculature, thereby supplying pulmonary blood flow. MAPCAs are tortuous vessels that arise directly from the aorta or its branches). We now know she has the later.

So after Evanna was born they transferred her over to the Stollery with Nick and his mom following behind and they started her on prostaglandin in case she had a ductus arteriosus that would keep it from closing, and began to monitor her. Nick and his mom stayed with her for a while before heading back to the Ronald McDonald to get some sleep. My mom stayed with me on the postpartum unit, but other than not being able to keep anything down and an apparently grouchy roommate (to which my mom responded by having me transferred to another room), I don’t remember much from that night, as I was pretty out of it.

Nick holding Evanna at the Stollery

Sandy holding Evanna

Early the next morning (April 30), a doctor came in and assessed me and my incision, and then granted me a 4 hour pass so I could leave to go see Evanna. Being less than 24 hours postop from major abdominal surgery, it was no easy task walking all the way from my unit to the car, and then from the car all the way to Evanna’s unit at the other hospital, but I managed it. When we first got there, Evanna was having an ECHO being done and the doctors were in the middle of rounds, so Nick and I just hung out at Evanna’s bedside and meet her nurse. Finally the tech finished with her ECHO and right about the same time the doctors had made it to her bed and began to discuss her case. Once the doctors finished, Evanna’s nurse Gail asked if I wanted to hold her – to which of course I said yes. The moment she was placed in my arms I began to cry. For the first time I felt like she was mine, and at the same time the gravity of the situation sank in. After a little while Gail asked if I wanted to go pump because it had been almost 24 hrs since my C-section, and they were afraid that if I held off too long, that my milk wouldn’t come in. So I headed off to the pumping room, but within 5 minutes my mom came and got me because the cardiologist had come and wanted to speak to Nick and I. We were brought into a private room and meet Dr. Urschel. He said that he had reviewed the ECHO, but wanted to send Evanna for a CT later that day to get a better picture of her heart. He wasn’t very optimistic, and according to the ECHO, she had the worst case scenario when it came to a final diagnosis. None of Evanna’s collaterals were bigger than 1mm, and if they don’t grow there is nothing they can do (we’re talking supportive/palliative care at this point) and due to how intertwined her heart is with her lungs, she could never be a candidate for a heart transplant. This was a major slap in the face, and a pretty sad meeting overall. They also talked a little bit about the probability that she had 22q11 (a chromosomal defect) that would explain why she has the heart defect and her missing Thymus gland.

After the meeting I went back to the pumping room to try again. Apparently I pumped quite the amount considering it was my very first time ever pumping (our nurse Gail was extremely impressed considering I just had a C-section, all the stress we were under with Evanna being in the NICU, and that this was my first baby). Once finished I spent a few more minutes with Evanna, but with my 4 hour pass already expiring and Evanna heading off for a CT, we decided it was time to leave. 

Stollery NICU

That night was probably one of the worst nights I have ever had thus far. My mom had gone back to Calgary and Nick and Sandy were with Evanna at the Stollery. I was alone on the postpartum unit surrounded by other moms who had their babies with them in their rooms while mine was hooked up to tons of machines in an NICU at a different hospital. I cried for hours in shower (I’m so glad I had a private room).

Dr. Wong came the next morning and thankfully discharged me right away. After Nick said goodbye to his mom, he came and picked me up and we headed back over to the Stollery to see Evanna. Once there, we meet with Dr. Urschel again who basically said that the CT came back with the same results as the ECHO and that surgery wasn’t an option right now and nothing could be done at this point there in Edmonton. Meaning: they were sending us back “home” to Calgary the very next day. I couldn’t believe it, I just experienced the craziest couple of days and now we had to quickly pack up and drive back to Calgary! Part of us was very upset and sad because they were sending us home under grave circumstances. Our little girl’s heart condition was not looking very good and the overall prognosis was severe. However, another part of me was a little happy that we were going home. We were going back to familiar ground and be closer to friends and loved ones. Nick and I spent the rest of the day just holding and feeding Evanna and soaking everything in. 

The next morning Evanna was transferred by air to the Alberta Children’s Hospital (ACH), while Nick and I scrambled to pack up, clean our Ronald McDonald room and drive back to Calgary. (Side Note: yes, I was offered to fly with Evanna, however Nick and I both had our vehicles in Edmonton, so that option just wasn’t feasible.) I don’t think I have ever driven so fast in my life. I wanted to be there so bad for when Evanna arrived to ACH (hello momma instincts and hormones). I would have gotten there way before she arrived, but due to a big accident just outside of Calgary I ended up getting there just as EMS was leaving (interesting side note: the team that helped transfer Evanna ended up being some of Nick’s co-workers and they knew that Evanna was Nick’s daughter, so it was comforting to us to know that she was in safe hands of people we knew). After talking to EMS about her transfer, I made my way to Evanna’s room where she was being assessed by ACH NICU staff. 

Alberta Children's Hospital NICU

 Later that evening Dr. Fruitman came by to talk to me (Nick decided to drive home first to do a few errands around the house, so he missed seeing Dr. Fruitman), and we got to talk about Evanna’s diagnosis. She apologized for the not so good news that we received in Edmonton, and said that we just have to hope that Evanna’s collaterals grow big enough so they can eventually do surgery. She then laid out a plan to see how Evanna held up over the weekend, have another ECHO and ECG done on Monday and maybe get us home by the end of the week if Evanna was stable. So, that’s just what we did. Other than a quick trip home on Saturday to shower and grab some new clothes, Nick and I stayed over at ACH to help care and feed Evanna. On Sunday after a family and ward fast, my dad came to the hospital so he and Nick could perform a priesthood blessing on Evanna. This meant so much to me, and I truly think it’s what helped Evanna do so well in the NICU all week long.

When Monday rolled around, Evanna had her second ECHO which she did so well for. Seriously, she caused no issues for the techs and was the perfect patient. She then had a quick ECG, and we meet Dr. Patton (another pediatric cardiologist) and 2 of his residents. Nick and I liked Dr. Patton a lot. He and his resident stopped by every day that week, and took the time to thoroughly explain everything and answer all of our many questions. Dr. Patton went on the explain that the ECHO results came back with much better results than the Edmonton one, and that they found 4 collaterals that were around 3-4mm in size. Nick and I were ecstatic with the good news and so happy that all the fasting and prayers worked. The next step was to monitor her throughout the week, and start a discharge plan!

Evanna and I after one of her early morning feedings

Evanna having an ECHO

Nick and I spent the rest of the week staying with Evanna to help care for her. We did all of her diaper changes and feedings (which I’m sure the nurses loved, because then they didn’t have to do it themselves), and held her lots. On Thursday May 8, we were finally discharged and allowed to take our baby girl home!

Evanna's first bath

 Overall it was a long, exhausting and crazy 9 days between the Stollery NICU and ACH NICU. I know that our time at home is only temporary, and we will have a longer hospital stay when Evanna has her open heart surgery later this year, but it’s such a tender mercy that we were able to bring our little girl home for the time being and enjoy these first few months as a family. 

Daddy getting Evanna ready for her first car ride

We're going home!