Mom to Brady
September 4, 2015 – Septemner 12, 2015
My husband and I were married in August of 2012. It was a great day. We got married after three years of dating. We also took our time and decided to be just the two of us for a little over two years before starting to think about expanding our family. We were lucky enough to get pregnant in December 2014. Meaning our first little one was set to be born just after our three year anniversary and right around my birthday.
We found out we were having a boy at 19 weeks and decided to keep that a secret from family and friends until his delivery date. We had such trouble deciding on a name and it took a while but finally landed on Brady George (one of the very few we could agree on).
Let me tell you, Brady was the nicest little baby in my tummy. I was sick for about the last 3 weeks of my first trimester but that was it. He also left me fairly comfortable, with weight gain at a max of about 10 lbs. And, I really didn’t do much to deserve that. I mean, I was fairly healthy but I didn’t really continue workouts (apart from the occasional pre-natal yoga class) or go to extreme with organic and healthy food. He just decided to be really sweet to his mama.
All my midwife and ultrasound appointments were normal. Our little guy was active, with a great heart rate, my blood pressure was low, and all things were looking good.
During our last ultrasound appointment at 38.5 weeks (which I was sent to just to confirm his growth was okay because I was still measuring kind of small) we learned that my amniotic fluid was a little bit low. So, was subsequently was sent for a non-stress test and stretch and sweep at the hospital. His heart rate and movement was still good so, just to be safe they said to go home and rest and come back in the morning for an induction. It was surreal. In a great way.
Along came morning and we checked in, got all hooked up and pumped full of meds (I was GBS positive). They broke my water around noon and by 2:00 I was begging for that epidural. I went from zero to sixty really fast once they broke my bag of water. And, once that epidural was administered, I was feeling great. It took about 8 hours from that point before I was ready to start pushing. It was great. I felt a tiny bit of pressure and in three pushes he was out. … and perfect! He was crying and lifting his little head up and weighed in at 6 lbs 1 oz. Little but still within the average for full term.
We stayed in the hospital for just under two days and he checked out perfectly. We took him home and life was good. This is how it is supposed to be. He was a fairly easy going baby. Slept a lot, cried when he needed food – sometimes didn’t cry just woke up. He was so sweet. But, then about four days after we were home with him we noticed he had not wet his diaper for a while (almost a full day). He was pooping but no pees. So, we figured we would just monitor that and maybe give our midwife a call if nothing happened.
Around 1:30 the following morning I woke up to feed Brady and he was having none of it. Pursing his lips and basically falling asleep every time I would lay him down to feed. Finally at 4:00 am (2.5 hours after he was scheduled to be fed) we forced a pumped bottle in his mouth and he very slowly took it. At that point, something felt wrong so I emailed my midwife to come by that day. However, by the time she got the message that day I had two good feeds with him (7:00am and 10:00am) and he soaked his diaper. So, maybe everything was fine? But, she decided to come anyway just to make sure.
By the time she got there around noon Brady had developed what seemed like a little hiccup when he breathed but, he wasn’t struggling and had full lung and heart function. After she checked him out she said that each thing individually was probably no big deal but all together, she wanted a second opinion.
So, off we went to the hospital, checked in and saw the paediatrician. She seemed stumped. She thought maybe it was jaundice (but he wasn’t looking yellow at all), she thought maybe sepsis because I was GBS positive at the time of his birth (but had received the necessary amount of medication to ensure nothing was passed onto Brady). They seemed confused and also seemed to be the most concerned with the hiccup type breathing. So, they quickly brought in the machine to give Brady a chest x ray and hooked him up to oxygen in the neonatal nursery. It was then that things got very real and instantly our fairly relaxed demeanour took a complete 180 and turned to shear panic.
Shortly after they attached him to oxygen they said he was likely dehydrated and needed to be put onto an IV for fluids. When they were trying to put the IV in, they said he wasn’t flinching at the needle at all (just basically sleeping) which wasn’t a good sign… but still couldn’t say what was wrong.
Following the IV, they said that they needed to give him a breathing tube. “WHAT? What is going on?” And still, no one had an answer. Finally, the paediatrician came to speak to us and said that he felt he needed to transfer us to McMaster Children’s Hospital in Hamilton, Ontario. This is when I really started to panic. That’s when it clicked that something was seriously wrong and that they needed a specialist to diagnose him.
It took, what seemed like, forever for the transfer team to show up and move Brady to the Children’s Hospital. However, the paediatrician assured us that Brady’s results and updates were being sent to McMaster and he was in contact with Dr. Jon Gilleland, Medical Site Lead for the Paediatric Emergency Team at McMaster Children’s Hospital and Dr. Gilleland was providing some insight and assistance in Brady’s diagnosis remotely.
Just as the transfer team showed up, the paediatrician at our local hospital told us that Brady had a condition called Urea Cycle Disorder. The one thing out of my husband’s mouth was “Is it treatable?”… “yes it’s treatable“. Big sigh of relief, including the paediatrician who grabbed both our hands and started to cry. He was so relieved to have an answer.
The transfer team got Brady organized and we left to head to the Children’s Hospital where we would meet both our families and wait for Brady.
About 45 minutes after we arrived, Dr. Gilleland and Dr. Mariya Kozenko came into the waiting room and asked for Neil and I to go meet with them and discuss Brady’s treatment and what was going on with him. They said we could bring our families in with us but we were confident (thinking we knew it was treatable) that we could relay the necessary information back to them.
They took us into this meeting room and immediately I noticed a box of tissues on the coffee table and thought “some people probably get the worst news in this room”
Dr. Gilleland and Dr. Kozenko began to break down the Urea Cycle Disorder diagnoses. In summary, they said that Brady cannot break down the protein in his blood from protein to ammonia to urea. Basically, he can break down protein to ammonia but cannot break down ammonia to urea. So, his ammonia levels were dangerously high. They then told us that they were going to give him medication that (if it will work in reducing his ammonia levels) will work right away. From there, they would give Brady a round of dialysis. But, with Brady being so little that it likely will not work. So, we needed to prepare ourselves for an outcome where Brady doesn’t make it. “Oh my Goodness. We’re the ones that are receiving the worst news. That’s what the tissues are for.“
The team did two rounds of the medicine… it didn’t work. They did a round of dialysis, but it was very difficult to get the tubes into our little guy and didn’t seem to do what they needed. At one point, Brady went into cardiac arrest, and they brought him back. But, at that point, his ammonia levels had spiked so high that his brain was almost definitely left permanently damaged and his quality of life would not be of any quality at all.
Our little Brady passed away at 10:58pm on September 12, 2015. His heart rate remained strong (between 140-150) until he left us. He was off life support for nearly 6 hours. All the doctors thought he would pass quickly but he hung on. He allowed us to be with him until the end. We will be eternally grateful for his life and that he chose us to be his parents. We’ll never be the same. ‘We’ll love him forever, like him for always, as long as I’m living, my baby he’ll be.’
Nicole blogs at http://inbradysname.wordpress.com