I am setting up this Go Fund Me page in hopes to raise money to assist them with any expenses that they will endure. Greg has also been off work to be with his family since Xavier's birth. As we all know the reality of life is that the bills keep coming in and adding up even during tragic times.
Your kindness and generosity would be greatly appreciated.
Below is Xavier's story and the battle he fought; in his mother's words.
As many of you all know Greg Eyamie and I were excited to announce our pregnancy. During the pregnancy I had been referred to the Royal Alexandra Hospital for a high risk pregnancy. While going for my first ultrasound there it was found out that the baby did not have a valve into its heart that slowed the blood from me going into them. This caused the heart to have some issues which was very closely monitored. The baby also had some extra fluid built up around the lungs and into the skin.
The extra fluid is called hydrops. All these conditions led to extra amniotic fluid which had to get removed twice. The first time I had amniotic fluid removed I had 3.6 Litres removed. A bit of this was sent off for genetic testing which takes 4-6 weeks to get results. The second time I had 2.5 Litres removed. We were warned that as more and more conditions came up with the baby that I could in turn develop what is called Mirror Symptoms. This means I could develop the same symptoms as the baby which could have caused me to pass away. I was lucky and did not get any complications with myself.
During all this time I ended up having a total of 48 ultrasounds at the Royal Alexandra Hospital. During ultrasound number 46 the decision was made to try and drain some of the fluid from around the baby's lungs. This was successful and the doctor removed 80ml of fluid. I was then sent over for ultrasound number 47 with the fetal echo team. At this time things looked good but they still wanted to see me the following day. Ultrasound number 48 was where they found that the fluid around the right and left lungs had returned and worse. At this time after some conversations with the doctors it was decided that it was time for baby to make their debut. I was currently 30 weeks and 5 days.
August 17 2018 at 6:17 pm via C-section Xavier Lucien Eyamie made his entrance to the world. He came in weighing at 5 lbs 6 oz. Unfortunately I believe about 2 lbs of this was estimated to be fluid. He was taken care of right away by the NICU team at the Royal Alex. Originally it was thought that once Xavier was born the issues with the missing valve would rectify itself. He was doing very good right off the bat however he was needing a lot of assistance from blood products and some blood pressure medications. He was also placed on an oscillator to help him breathe and hopefully push some of the fluid out of his lung cavities. He ended up having a chest tube put into the right side which drained out the extra fluid. He was still retaining a lot of fluid in his skin at this time.
On September 1 2018 Xavier was transferred over to the Stollery Childrens Hospital at the U of A. This was because his heart walls seemed to be thickening and the team at the Stollery has some of the best if not the best doctors and groups in Canada. He was assessed and unfortunately was not getting any better. Fluid was still building up in his chest so he got a chest tube on the left side. The next goal was to get him to pee and consistently. He finally started to do this 3 days ago. We had 2 very good days of pee. He was peeing and moving around and starting to look less full of fluid.
At this time it was discovered that Xavier had a condition called Noonan Syndrome. This is very difficult to describe since the conditions are so varied with each child. We were very lucky to make it to 30 weeks pregnant since a lot of pregnancies where the children has Noonans tend to end up in an early miscarriage. All of the symptoms that Xavier was showing such as the extra fluid, heart walls thickening, fluid build up around organs, organ failure, no or very small neck, and so on was part of the Noonans.
During this time at the Stollery we got to hold Xavier a total of 5 times. Today was unfortunately the very last time Greg or I was to hold our son. We were notified this morning when we went into the hospital to visit Xavier that things were not going very well. I immediately asked to hold him and was granted that request. When Xavier was moved into my arms this morning his heartbeat started to go down and fast. He was telling us that his fight was up. We had to listen to our little man as he had spent the last 8 months total and 4 weeks in our world fighting tooth and nail to stay with us.
It is with great sadness and heartbreak that Greg and I say RIP to Xavier Lucien Eyamie. You will be forever loved and missed. You were truly a fighter. You fought for so long to be with your mommy and daddy and we fought for you as long as you told us you were fighting.
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