The past 10 months have gone by so quickly. My delivery was very long and just as I feared Dwayne did have to miss dialysis to be there for me. Once Ryker was born Dwayne had to rush off to dialysis and it was so hard for him. Ryker was born under distress as we had a hard delivery and he was placed in the NICU ward for the first 12+ hours of his life. Dwayne felt like his heart was being ripped out when he left the hospital that morning...as the week went on it got harder for him to go and on one morning during the first week he arrived at dialysis in tears and a panic...he told his nurse he just couldn't be away from us that day and they arranged for him to go home.
Since then we have settled into a routine. Dwayne still does his dialysis 4 days a week but it is hard on him a lot of days. He gets home eager to spend time with Ryker (who is more mobile and more energenic as the days go by!) and finds most days he just needs to lay down and try to find energy to be able to play with him. I will be going back to work in April and Dwayne will be the "stay at home Dad"...it will be hard, we have switched his dialysis to the evenings during the week and have found a balance between our schedules so that we do not require daycare.
This past year has been incredibly hard financially and without our families I don't think we could've made it. With Dwayne being on disability and me on maternity leave we just scraped by. Dwayne continues to hope to get back to work as time will require us to have money for sports, school and all of the other things kids require.
One of my other fears was to have Dwayne go into the hospital once Ryker was born. How would I juggle that? In the past I would be at the hospital with Dwayne from early in the morning (7:30am) to late at night (sometimes as late as midnight). Dwayne had to have surgery to remove more of his parathyroid in December. Ryker was only 7 months old, but he was such a trooper. We did spend a lot of time at the hospital for 4 days, but we were able to make it work. We got a good laugh too when Ryker pulled Dwayne's IV right out of his arm! It is a reality that Ryker will see a lot of hosptial rooms in his life as we look after Dwayne's health. It is hard because it is not an ideal place for a baby to be, especially when they are learning to crawl and walk.
Sometimes there are moments where I feel like I am the only one...dialysis isn't like a job where if there is an emergency or special circumstance you can take the day off if needed. Dialysis is necessary for Dwayne to be with us. Ryker did have to go into the hospital over the New Year and we stayed on the pediatric floor for 4 nights. We were in isolation and I had to stay in the room with Ryker at all times unless someone else was there to watch him. Dwayne still had to do dialysis, so I really had to look after this on my own. This was also hard when I first got home from the hospital as most Dad's can take the first week or two off when their child is born...I was a really new Mom with hours to spend alone with Ryker 4 days a week, and as hard as it was on me I know it is really hard for Dwayne to not be able to be there every time he would like to be.
On a more positive note, Ryker was the best decision we ever made :) He brings a smile to our face every day, even when we feel there is not a lot to smile about. He gives us a reason to get up and keep going. We are so lucky to have this sweet little boy.
On a more positive note, Ryker was the best decision we ever made :) He brings a smile to our face every day, even when we feel there is not a lot to smile about. He gives us a reason to get up and keep going. We are so lucky to have this sweet little boy.
I hope to be a little more faithful at posting now that life has more of a routine, and I hope to share the challenges we have as a new family with dialysis in our lives.
Thanks for reading!