Evanna | One Month

I can’t believe you are one month old Evanna! Where does the time go? I’m still adjusting to being a new mom, but at the same time everything feels so natural. I will admit that before you were born, I wasn’t sure if I would be cut out for this whole mommy thing, but I’m glad to say that I am loving it and I'm loving every bit of you! I’m also finding that I’m already starting to forget what life was like before you were here. You keep me super busy and my world now evolves completely around you. Daddy is so smitten by you and loves you so very much (which has made me fall in love with him all over again). With his work schedule, he actually gets lots of time with you, and helps out lots when it comes to feeding and changing your diapers so mommy can get a few good nights of sleep. We feel incredibly blessed that we got to take you home so quickly and get these first few months together as a family. We’re so proud of you and how well you are doing, and we are just praying that you continue to grow big and strong.

Weight: 7lb 4oz (Weight taken on May 22)

Height: 48cm | 18.9 inches (Height taken on May 22)

Clothing size:  You my dear, still fit newborn outfits perfectly, but I’m sure by next week you’ll finally be in 0-3 month clothing.

Diaper size: Newborn

Feeding: On average you eat about every 4 hours (sometimes it’s 3 hours, and sometimes it’s 5 hours), and you currently take in between 70-100mL. Your daddy and I try our best to make sure you eat, because gaining weight is very important for you and something the doctors watch very closely. Due to your heart beating extra fast (about 180bpm), you also burn extra calories – so every bit counts! A dietician from the Children’s Hospital called us a few days ago, and to help you get those extra calories, they’re having us add 1 tsp of formula to every 100mL of my breast milk.  

Milestones:  You like to hold your head up and everyone comments on how alert you are during certain times of the day.  You also like to head-butt your daddy when he burps you.

Loves: You LOVE being held and cuddled. Sometimes this isn’t the most convenient thing for me when I’m trying to get stuff done around the house, but I guess I should soak it all in and take advantage of it while I can. You also love being bundled up, your soother (or else you’re sucking on my finger or your own), warm baths, and sleeping on mommy. However, I can already tell you’re going to be a daddy’s girl. You are so content with him, and for some reason you tend to eat better for him.

 

Dislikes: You’re quite the spitty baby, and at times you get very angry after a big spit-up (I find it so cute though, because you’re really just getting angry with yourself). You also don’t like being hungry. 

Adventures: Well the first couple weeks after we brought you home were primarily spent at home because we were unsure of your immune system.  But since finding out that you have some sort of immune system, I have taken you to church and a few small stores. You’ve meet all of your grandparents and great-grandparents, and we’ve had tons of visitors. You’ve experienced your first of what will be many doctor appointments, which so far have gone well. You meet the whole Irvine side of the family at Grandma Cory’s 80th birthday and were adored by everyone at your great-aunt Debbie’s house for a Mother’s Day brunch.

Mommy and Daddy could not get through the month without: Your Grandmas, Aunt Danika and Aunt Megan. The first few weeks after you were born were quite the roller-coaster, and though we are thrilled to be home right now, it wasn’t something we were planning on, so we really didn’t have anything ready. None of your clothes had been washed, and your room hadn’t been touched, and the house was a bit of a disaster due circumstances. Thankfully between your grandmas and aunts, we came home to a relatively put-together house. Grandma Walford and Aunt Danika spent many nights at our house washing, going through and putting away all of your clothing. Then Grandma Sandy and Aunt Megan came over and helped your daddy clean the house, put together the bassinet and start on putting together your room. We are so thankful to them and all of their help, but I’m sure they were just so happy that you were coming home and they could meet you!

We also have to give a shout out to our friends Spencer and Whitney for coming over while we were in Edmonton to look after our kitties and make sure that not only did they have food and water – but also some love. 

And just for fun, a few of my favourite pictures from the past month:

Lifestyle Newborn Pictures

Months ago I had come to terms that we probably wouldn’t be able to do newborn pictures because we thought Evanna would be in hospital until she was at least 2 months old, so I was going to hold off on getting pictures done. However, plans changed and the silver lining to the crazy whirlwind we’ve been put through is I got my newborn pictures after all. Like always, Jennie (Guenard Photography) did a marvellous job, and captured our little Evanna so perfectly. At the end of the session I pointed out to Jennie that these will probably be the only professional photos we have of Evanna before open heart surgery (as we don't have any idea at this point when that will be), therefore the only professional pictures she will have taken before she will have a big scar down the middle of her chest. Anyways, the photos turned out beautifully – so enjoy! xo

We love good news

I still have some other blog posts that I want to get up before I officially feel caught up, but some exciting things have happened around the Irvine home that I just had to share first.

We’ve now been home for a few weeks, and we’ve slowly been finding our own little routine. Our life fully revolves around Miss Evanna, but we wouldn’t have it any other way. Between lots of visits from friends and family, doctor appointments, pumping, sleeping, feeding and sleeping schedules, we’ve been keeping very busy. Some highlights include a lovely Mother’s Day brunch at Nick’s aunt Debbie’s house, and Grandma Cory’s 80th birthday – where for the first time in a long time, everyone from the Irvine side of the family was there. Evanna is of course the centre of attention where ever we go, as everyone fights for a chance to hold her (after first putting on hand sanitizer of course).

Evanna also had her first pediatric and cardiology clinic appointments (though I’m sure those will soon become old news). Evanna is slowly gaining weight and is maintaining her oxygen levels. In 4 weeks Evanna will have another ECHO done, and when she’s around 3 months old, we head back up to Edmonton for an Angiogram.

Now I’ve saved the news best for last. First, we finally got Evanna’s immunology results back, and she has T-Cells! This means that she has a Thymus gland, it’s just smaller than normal, and so that’s why they’re having a tough time seeing it. So what does this really mean? Well it means that her body can fight viruses and while we should always be careful as getting sick wouldn’t be very good for her delicate little heart, we don’t have to be extreme hermits. We won’t go crazy and start taking her to malls and grocery stores right away, but at least we can take her to places like church and maybe a restaurant. 

Finally, as most of you may remember, back in March Nick was offered a temporary fulltime position as a Paramedic for Calgary EMS. Well earlier this week, he was offered a PERMANET fulltime Paramedic position! I’m so ecstatic and proud of Nick! I didn’t think it would happen so quickly, and overall we feel incredibly blessed with how accommodating Nick’s work has been with letting him take some time off when Evanna was born, and then offering him a permanent position just 2 weeks later. It’s nice to see all of Nick’s hard work pay off, and it feels really good to have some security. I know its Heavenly Father’s way of lightening our load so we can concentrate on raising and taking care of our little girl.

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!