When you have kids there's all kinds of milestones - crawling, talking, walking, potty training, kindergarten, learning to read, first lost tooth, first sleepover, learning responsibilities, going to the park without a parent, first time staying home on their own, having "the talk", moving on to high school, dating, driving, graduation, moving out on their own. Wow. All 4 of my children are at different stages in this list.
The last few days it's the milestone of the boy, the youngest, that's occupying my thoughts. On May 10th Jack will be 5 years old. He was born with a major heart defect and had open-heart surgery at age 4 weeks. For some reason over the last few months, my mind has been filled with thoughts of "5 years ago today...". I'm usually ok, but for some reason the 5 year mark is making a mark.
December 20: 5 years ago today we found out at the ultrasound that our baby had a heart defect. You know that feeling when you just know that something is wrong? Ya, that. The tech wasn't talking, then she went to get the radiologist, and he came in and took over the controls, and he wasn't talking either. I will never forget his words "There's something wrong with your baby's heart. But it's fixable." Wow. It's amazing what rushes through your head in a heartbeat (pun intended). I still feel bad that I never thanked him for saying it's fixable before I had a chance to freak out. Those few words may have been the difference between a potential major breakdown and me actually calmly processing this information. Everytime I drive by the Ultrasound clinic I have a flashback of being sad and scared. (It's nearby, in the same parking lot as the wine store and Dairy Queen, so turns out I go by it quite often!)
Thanks to the internet, we learned an awful lot about heart defects that day (and in the following months). He had Double Outlet Right Ventricle (DORV) meaning his aorta and pulmonary artery were both connected to the Right ventricle. The utrasound tech couldn't find his aorta because it was on the wrong side and hiding behind the pulmonary artery. There are many types of heart defects, and this was considered a 'rare' and 'major' one, correctable with open heart surgery with success rates varying from 80% to 98%.
December 24: 5 years ago today we went to the obstetrician to learn more about his condition, and what else could be wrong, and what this means, and what could happen, and the risks of having an amniocentesis, and the reasons we should really consider having one done. And what unthinkable choices and decisions we might have to make, depending on what the results were. At this point we didn't know if we had a baby who could be fixed, a baby who may have down's syndrome or some other issues, a baby who would be severely mentally and/or physically handicapped or if we had a baby who may not be able to survive more than a few days or weeks outside of the womb.
December 27: 5 years ago today we went for an amnio to find out if the baby's heart defect was part of some major chromosome problems or an anomaly. Finding out what was wrong won out, over agonizing until he was born to find out if he had a chance at life.
December 29: 5 years ago today, the obstetrician called to give us the best news that could possibly be expected under the circumstances - our baby "just" has a heart defect, all chromosomes are normal - and there's a Y, so it's a boY! I remember it was a Friday at 6:30pm. I had given up hearing anything that day, and was wondering how I was going to make it to Monday waiting to hear the results. I remember being so happy that he 'just' had a heart defect and 'only' needed open heart surgery. My little boy has a chance! My little boy might be ok after all! And it really is a boy.
May 1: 5 years ago today, we went to the doctor and there were signs of labor, so we had to go to Saskatoon so the baby could be born there where they have a pediatric cardiologists who could care for him when he was born. Lucky for us, my parents live there, so we had a place to stay.
May 9: 5 years ago today, we were going stir crazy in my parent's 2-bedroom apartment, waiting for this little one to make his appearance. We went to the doctor, who decided to induce labor. Baby was overdue, and getting big.
May 10: 5 years ago today, our son was born and weighed in at 8 pounds, 12 ounces. Good news, because we knew what he would have to go through and that the bigger and stronger he was, the better. Strangely enough, his birth was the most normal and average and 'textbook' out of all 4 kids.
Our almost 15-year old daughter was there. That may sound strange, but she was always very mature and responsible for her age, and we gave her the option to attend the birth. (Best Birth Control Ever!) Our 12 year old daughter stayed with grandma and grandpa and the 2 1/2 year old.
May 10: 3:30pm: 5 years ago today, our son was whisked off to NICU, put on oxygen, and underwent his first surgical procedure - they needed to make the VSD (hole between the left and right ventricle) larger so more good blood could get over the side where the aorta was pumping from. At least 'some' good blood was getting through his system, and the more the better.
May 13: Mother's Day. 5 years ago today, I was discharged from the hospital. The maternity ward was overflowing and they needed the room. I felt so bereft. My baby was in NICU and I had no intention of leaving the hospital without him, so I became an unofficial inhabitant of the hallways and waiting room. Have you seen that movie where Tom Hanks is an immigrant who is stranded in the airport and randomly lives in the terminal? That's sort of what it was like. I learned the true meaning of 'Hospital Time' - lights, sounds, days and nights, passage of time, it's truly another world.
I spent every minute I could with my baby, holding him, feeding him, changing him while he was connected to oxygen and heart monitors. Sadly they don't let Mom's live in NICU. They did find me a bed in a room down the hall with 3 other beds where parents could lay down for a rest. You gotta sleep somewhere. The nurses were fantastic - at night they came and got me when my son was hungry, and during the day they came and got me from the waiting room when I was allowed back into NICU. (Don't get me started on the whole "You can't be in here when the doctors go through due to privacy for the other patients, because you might overhear something" BS) Luckily for me, I have a fantastic husband who made a few trips back and forth to Regina so the older girls could go to school, and looked after things at home and kept me sane. Luckily for me, I have a fantastic Mom, who looked after Carly whenever she wasn't with Daddy, and looked after me in the hospital, visiting, making sure I ate, and taking me to her house so I could shower once in awhile between feedings when baby Jack was sleeping. Luckily for me, we have lots of fantastic family and friends who supported us all through, including my sister who also came to visit lots and some friends who even made the trip from Regina to Saskatoon to see us and meet the little guy through the NICU window.
For now, my son was stable and we just had to wait a few weeks for him to get bigger and stronger so he could be moved to Stollery Children's Hospital in Edmonton for surgery, where they have two of the best Pediatric Cardiac Surgeons in the world.
I'm going to have to continue Jack's story another day in Part 2. This is harder to write than I thought. No wonder it has taken me 5 years to get the courage to put this into words. Sometimes it seems like yesterday and sometimes it seems like so long ago. I still can't look at the pictures without tearing up, but I'm so glad we took pictures to remind us just how much he went through and how lucky we are to have a healthy happy little boy.
