Can we talk about literally living at the hospital for a second. Whether it’s one day or one thousand days. I almost feel like the shorter the stay the more likely the parent(s) / caregivers are to stay bedside, like literally bedside. We were there for the better part of a year, and I did not leave Adam’s side. I can count the amount of times I left the hospital on one hand. Once was for my childhood best friend’s wedding. Once was to meet Gordon Ramsay. Another time was to see Jim Cuddy from Blue Rodeo, once again to see Shania Twain, and my best friend dragged me out to go shopping (where I dragged back a mini Weber bbq toy for Adam - that was a fun walk back lol!) Every time we did leave, someone else came to stay with Adam - my mom or my mother-in-law. They came to “babysit” so to speak. The nurses always used to laugh and say to me, you know you can leave him right - we’re right here, it’s essentially free babysitting. But no, we wouldn’t leave Adam if we were at home, so we didn’t want to leave him there. As the weeks, and months went by, we became friends with some of Adam’s core nurses and they convinced me to go for lunch or go shopping with my best friend a bit more often (I hate wandering downtown anyways, so it was a big deal to get me out on a walk downtown on a good day!). We became comfortable leaving Adam with them, without a Grandma around the 5-6 month mark. In fact, when I met Gordon Ramsay the nurses had to literally convince me to go. I’m SO glad that they did! I think that was one of the only times I ever left Adam without any family members and only the nurses. Did/ do you stay bedside throughout your child’s stay? Here are my reasons why I HAD to stay: What if something happened and I wasn’t there? This was never the case, thank God…. but still, you never know, and anxiety and catastrophic thinking is a huge bitch, especially when you live in a hospital and are exposed to codes every day. What if Adam’s Surgeon came by for rounds, or a Fellow? I NEEDED to be there for every single visit with Adam’s surgeon or the Surgical Fellows. I had to know what was going on 100% of the time. Two words: Replogle Change What if he choked, or stopped breathing… I had to be there. But also, it got to the point where I’d be telling the nurses Adam’s replogle needed to go down further - but an NP, Surgical Fellow, or Surgeon needed to do it. Adam’s replogle advanced so much, it became a joke with his Surgeon and I where he literally just told the nursing staff “Listen to Mum, if she says it has to go down, put it down!” - um, AMAZING! Obviously it was checked by an NP first, but we kind of got to bypass the “ask the Surgeon first” step! Volunteers …are amazing. I was ALWAYS there, so they were always disappointed they never got to spend time with the adorableness that was my chonky smiley boy. But I walked in from getting a coffee one time to a volunteer holding him - my heart broke. Like why does a STRANGER have to comfort my baby?!?! Was I not there when he cried?! Did he need me and someone I didn’t know have to step in?! The guilt was real. Now the Volunteers are amazing for this reason! Especially with babies, if the family can’t be around for whatever reason, or they have another child or children at home that need them. They are so so amazing. I was just there ALL the time and it threw me off. Tests. Scans. Procedures. I needed to know what was happening 100% of the time. The nursing staff were directed to call me over night if something had to be done (it never did, Adam slept through all his diaper changes lol!) However, in the NICU they do tests, scans, procedures whenever a Doctor or Specialist or Technician is available - 24/7. We couldn’t be there for those overnight, and it bothered me SO much. I barely slept. Especially since those first weeks in the NICU were to find out all of the details of Adam’s EA and the associated anomalies (which thank the Lord, every single test came back normal!) As for the ICU - I stayed there LITERALLY ALL THE TIME. The only time I left was when Matt was in there and my Mom wanted to come in. We didn’t let anyone else in, except for Matt’s mom as well. Only two people were allowed at a time, so often it was me and someone else, and just me overnight. Overnight at the ICU was terrible. They tell you that you can’t stay overnight. I told them to F* off. In fact, the convo was “you know technically you’re not supposed to stay here overnight” and my response was “technically I do not give a F*” ….she stopped bugging me after that - they knew I wasn’t going anywhere. I would have literally needed to be dragged out, it wasn't worth their struggle - I sat in the corner by Adam quietly *most of the time (but that's a different story altogether). I slept on a chair. I had just bought a Canada Goose winter coat and joked that I had a nice duvet to cover me. It was Hell. The things that happen in that ICU in the day, seem to be worse at night. I witnessed things that no one, let alone a mother should ever be exposed to. But I HAD to be there, especially then - when something, for the first time, actually could happen. If you couldn't tell by me saying it 10x, I wasn't going anywhere. Theme of the blog. My personal choice, if you're comfortable with it then all the power to ya! There are few things, when you do leave the room, that you should absolutely do. Some of those tips include:
Long-term or short-term - How do you feel about staying bedside?
Have you? Would you? What would be your reasoning for each choice? Drop a comment below, or on our Instagram post to carry on the discussion.
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I was chatting with three of my oldest girlfriends last weekend about what to register for when having a baby. These are a group of friends who have been by my side through it all, there is no BS, no drama, just four loyal girlfriends that came together through the unique sport of synchronized swimming years ago when we were just kids. Three out of the four of us have kiddos and the fourth is expecting in the new year! The new mama-to-be wanted our opinions of the “must have” items for the new baby. Despite the negative experiences my boy’s faced when they were babies along with the difficulties I had getting pregnant, I still LOVE all things baby! I was so excited to look at her baby registry. As we started discussing the must-have items, my two other friends with kids made general comments such as, “you cannot survive the first three months without X, Y & Z”. I would just laugh and say “well I didn’t need any of that stuff haha”; I didn’t need that stuff because my babies were critically ill and in the NICU at Sick Kids. I find that anytime I try to make a funny joke or comment on MY experience of being in the hospital, most people respond by saying things like, but…. “everything‘s OK now”, but... “you got through it”, but... “it’s over”, but…”look at your boys now”. I know these comments come with good intentions when they find the conversation uncomfortable but I find comments like this to be upsetting rather than encouraging as they minimize my lived experience. Without being offensive to my girlfriends, I know that I am super sensitive and aware of the “but” comments. I love them and am super happy that my friends have healthy babies and cannot wait to meet the new member of our crew but looking at a baby register and talking about what is needed for the first 3 months still brings up sadness. I think as a society, we need to recognize that everyone deals with trauma differently and there shouldn’t be a timeline on your healing. Things may trigger you YEARS later and it’s normal AND okay that triggers bring you right back to the trauma. When people find out about my kids’ stories, another common response is to tell me about another kid they knew who was sick. People would respond by saying things like, “well, my sister’s husband’s cousin’s kid has cancer and they are being treated at Sick Kids and it’s really bad”. These responses would (and still do) infuriate me! I know that many people experience hardship but it’s not a competition, we have to be supportive and understanding of all circumstances. The crazy thing is that one day I found myself responding to someone making a generalized comment about a kid and family I didn’t even know! WTF, I know exactly how it feels to be on the receiving end and I still responded this way! I was shocked when I caught myself. I KNEW BETTER! It made me realize how we all want to find a solution or give hope to an uncomfortable situation instead of just acknowledging the feelings and sitting with the discomfort of the situation. I always wondered why people didn’t respond by saying things like: “I’m so sorry that was your experience”; “That is unfair and shitty”; “This was not your fault and you, your boys and family didn’t deserve this”; “It’s okay to still be angry and sad about your experience even though your kids are older”; “I’m so glad to see your boys doing well; how have you been coping?” These types of comments were seldomly said and yet it's what I really needed to hear, especially in the thick of it. I conscientiously try to provide these kinds of supportive comments to people in my life but clearly it’s not always a natural response. Why? I recognized all that I had to be grateful for but I was still angry and had so much built up rage. I started listening to A LOT of audio books during my walks. I gravitated towards books by women explaining what it means to be a woman and a mother in today's world along with the accompanying endless expectations. I really related to Rachel’s Hollis books, Girl Wash Your Face and Girl Stop Apologizing. I am also a huge fan of Brene Brown’s work and Glennon Doyle’s book Untamed. All these books pointed out the same main messages that I was getting from our society. The main ones being: always be grateful, mothers are selfless and love being moms and women never show anger. These books helped me realize that even after giving birth we are still just humans and being a mom doesn’t give you angel wings or some crazy superpowers that everyone talks about. It does however, distort your body LOL! But seriously, listening to these authors made me realize that I myself, and society as a whole has to be kinder to ourselves; it’s impossible to be perfect at everything…. My experience really left me wondering why does our society always rush to try and give advice to make things better? Why is listening to feelings so uncomfortable? Why isn't there room for anger to sit beside gratitude? For me, when people acknowledge(d) the crap in a situation, I felt heard and my experiences felt validated. I continue to work on listening and supporting the experiences of others without trying to problem solve or draw comparisons. I’m not perfect and sometimes, I find myself sliding back into comfortable territory of glossing over feelings to offer solutions or “reminders”. But I stick with it, and I challenge you to reflect on how you respond to other people’s emotional situations and spend some time acknowledging the experience of others - you may be the first one to do it! |
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