Matthew & I had the honor of sharing our story at the March of Dimes Signature Chefs Auction last night, and we wanted to share our story with you too. So many of you have helped to lift us up over the past two years and with all of our family back in Canada, the support through Facebook has been incredible.
This was not an easy to story to write and it is not an easy story to read. If you are going through or have gone through a similar struggle, this might hit too close to home for you. We go into some pretty intense details which aren't always great to be reminded of.
First of all, we would like to thank you for being here tonight, and thank the March of Dimes for inviting us to serve as your Ambassadors.
Two years ago, Kate and I could hardly have imagined we would be standing here tonight. We had just moved to California from our native home of Canada (eh), and although we were two thousand miles away from our nearest family, we were excited to finally set some roots and start a family of our own. That said, you can imagine our surprise when, just two short months later, we found out we were expecting twins.
It was clear early on that the pregnancy was not going to be easy. On account of the twins, we were classified as “high risk” and told we would likely deliver two to four weeks early. Complicating things further, the initial ultrasounds discovered that Twin B/Austin's amniotic sac was underdeveloped and, in subsequent appointments his weight consistently bordered on critically low. But we were not going to let that dampen our mood. We made pregnancy announcements; we flew home for Christmas; we started searching for a home capable of fitting our growing family. We planned for the best, knowing we could lose the pregnancy at any time.
But no amount of planning could have prepared us for what happened next.
I will never forget the moments leading up to my emergency c-section.
I had been admitted to the labor and delivery floor of the Kaiser Santa Clara hospital two days earlier due to severe pain in my stomach and back as well as dizziness and nausea. My team of doctors didn’t know exactly what was happening but it was suspected that I had experienced a placental abruption and was bleeding into Austin’s sac.
The morning of my delivery started out with good news. I received my lab results and after multiple blood and platelet transfusions, my numbers were actually looking really good. I called Matt (who was at our apartment with my visiting mother in law) and I also called my mom (who was still in Canada) to give them the good news. The babies and I were stable.
Shortly after that, however, I started hemorrhaging and was immediately rushed to the operating room. Vanessa, my labor and delivery nurse, quickly called my husband to let him know that the babies were coming.
I will never forget Vanessa holding my hand in the operating room. Everyone was moving in fast forward and all I could do was say a prayer as I laid there quietly with tears streaming down my face. I had always envisioned that Matt would be the one holding my hand as we welcomed our babies into the world but instead, Vanessa gave what strength she could as I was put under general anesthesia.
On March 15, 2016, Mason and Austin were delivered via emergency c-section. They had made it to just 28 weeks and 1 day of gestation.
I was able to see my boys in the NICU within an hour of their unexpected births. They didn’t look like regular babies. Their skin was an uncommonly deep red and their bodies did not have any sign of that characteristic baby chub. They were held in separate incubators, which regulated their body temperatures as they were unable to do so on their own, and they were attached to countless wires, tubes, and monitors. We were told they would have CPAP support for breathing and a PICC line for feeding. We were also told they would have regular apneatic episodes, but that it was nothing to worry about. Nobody ever panicked in the NICU.
As surreal as it was, the NICU quickly became part of our daily routine. Eventually we got to do the things with our children that most parents do within the first few hours. We held them; we bathed them; we dressed them in the cutest onesies their miniscule bodies could fill. Still, I never imagined that the first time I would hold one of my sons, he would fit in the palm of my hand.
I cannot describe how painful it was to be discharged from the hospital knowing that I had to leave my babies behind. I felt like I had two lives- I was a mother to twins in the NICU but when I left the hospital, it felt like I left my new role behind. Whenever I was in public, I wanted everyone to know that I was the mother of twins! I craved the recognition and congratulations that is normally showered upon new parents but I would have to wait months before I could show off my baby boys.
Mason came home, fittingly, on Mother's Day in May. He was what is known in the NICU world as a "feeder-grower", and hit all of his milestones right on schedule. All told, he spent 55 days in the NICU, and was still a full month short of his due date when discharged. He has not stopped growing since.
Austin was not nearly as fortunate. On the day we finally moved into our bigger home, we received a phone call from Dr. Dong in the NICU. Earlier in the evening, Austin had stopped breathing and had needed to be resuscitated by CPR. As calm as his voice was, we could tell he was worried. After three days of minimal improvement, on April 20, 2016, it was recommended that Austin have exploratory bowel surgery. He weighed just 3 lbs at the time, but our options were limited; the incision went from one side of his abdomen straight across to the other. Unfortunately, Austin’s struggles were just beginning.
Over the next few months, I watched one of my children grow stronger and healthier while one of my children deteriorated before my eyes. There were times that I would sit in the parking lot of the hospital, trying to muster up all of my strength because I didn’t know if I could bring myself to see Austin again. I didn’t know if I could stop crying, let alone try to smile and sing happy nursery rhymes to my precious little baby.
I spent the month of August living in the hospital with Austin 24/7 and, by September, it was clear that he was steadily declining and would not improve on his own. Austin had already undergone three unsuccessful surgeries to reconnect his bowels and he was severely malnourished. A stoma was our only option. The first time I saw Austin after that surgery was one of the most painful moments of my life. My beautiful little baby boy was covered with IVs and breathing tubes, swollen to twice his normal size and he had a new hole in his abdomen with exposed bowel. The shock of it took my breath away. Nevertheless, I spent the next three days getting used to Austin’s ostomy bag then the next month learning how to change the bag and care for his delicate skin. It is amazing what can become normal.
All told, Austin spent almost eight months in the hospital before being discharged. When he was finally able to join his twin brother at home in November, he came with an entourage of medical equipment and a calendar full of medical appointments. We carried his IV pole everywhere we went, and we learned all of his care, from running his pumps, to changing his dressings, to measuring his feeding tube and threading it through his nose and down to his stomach.
But with a tremendous amount of support, we were able to make it through. Austin did grow stronger at home. He had his final surgery in March of this year, and he has been completely support free since May. It was just in time to travel and meet family in Canada for the first time in June. I never imagined that a child could have seven surgeries in his first year of life and still smile like the world was made just for him.
Fittingly enough, we spent the boys’ first birthday in the GI clinic with Austin’s doctors and surgeon. Austin’s medical team became one of our biggest support systems and thankfully they continue to support us by joining us here tonight.
Austin is still catching up to Mason, especially with his gross motor skills as a result of muscle weakness from months of immobility in the hospital. Mason started walking three months ago while Austin just took his first steps this past week at 20 months on age. Austin might always be 2 inches shorter than his identical twin brother and he will always have his scars but my hope is that one day, the reminders of his medical journey will be a source of strength for him.
We owe thanks to too many people to count, but March of Dimes holds a special place in our heart. I think these little guys are going to big things with their lives. It is because of your generosity, and the ground breaking research that it funds, that my little guys are on stage with us tonight. Thank you for being here, and thank you for supporting the March of Dimes.