First, I think it’s important to mention that when you are living through unimaginable times, despite people’s intentions, no one really knows how to react or support you. As I mentioned before, I am a people pleaser by nature and I’m pretty crapping at advocating for what I need. In reflecting on my experience and what I wish I would have asked for, here are my tips and ideas for family or friends wanting to support their loved one in the hospital:
1. Books: for me books were the best gift and I found myself buying a lot during our stay. A close friend of mine purchased the book “Wherever You Go My Love Will Find You” by Nancy Tillman. To this day, this book still makes me tear up. This book was incredibly powerful because it reminded me that even though I was not physically able to be with my baby for most of the day, I was enough in just being his mother. I loved reading books to the boys especially before leaving the hospital for the night. Even though there were times when my boys were completely sedated, reading a book helped me feel like I had a role other than pumping and this helped me connect to my boys
2. Untraditional gifts that made a world of a difference such as gift cards and MONEY!
We lived at Ronald McDonald House with both boys and despite the accommodation being very reasonable, you are still paying for your living expenses at home and usually one partner is working less to be at the hospital with your baby. My husband and I calculated that we probably spent more than $4000 on parking alone between the hospitals. We really appreciated gift cards because they took some of the stress out of the day. Tim’s or Starbucks gift cards are great options because they are both located in the hospital. Uber eats gift cards are also a great option. A lot of time is spent driving between home and the hospitals so gas gift cards can also be really helpful. Also I know money can be an untraditional and sometimes awkward gift to give but at the end of the day a monetary gift was extremely helpful as again it just took some of the burden off the daily expenses.
3. FOOD: The best thing about being in downtown Toronto is all the different food options. But for someone like me that has Crohn’s disease, I need to eat a specific diet. Eating out would be quite distressing for me as my body does not always agree with the food choices available. Due to my Crohn’s disease, I cannot eat a lot of raw food so my parents would often make a huge tray of grilled vegetables for me and drop them off at the Ronald McDonald House so I could add them to my meals. Some family members would cut up fresh fruit and veggie slices to take with us during the day. My husband's grandparents were very sweet and would just show up with homemade meals that were warm. They would even bring plates and forks from their house so we could feel like we were eating a normal meal. Friends/family would sometimes quickly stop by and just say I’m bringing you dinner or homemade cookies. When people just showed up with cookies, muffins or a tea just to say hi, these gestures made a world of difference.
4. Showing Up! As I mentioned above, I always had an excuse when someone asked to come and visit. However, parents NEED breaks out of the hospital and need to be supported by the people that love them the most. We were lucky that we only lived an hour away from the hospital and had many friends that live in the city.
5. Clothes: I highly recommend not bringing clothes. My boys couldn’t be dressed until they were 2 to 3 months old and getting clothes was just another reminder of the normalcy that I was missing because my baby was in the hospital and very unwell. The only exception are clothing items such as hats or socks because these items were useful and helped me to connect.
6. Stuffed Animals: Despite the best intentions of a personalized stuffy the space you have in the NICU is unimaginably limited and precious. While stuffy’s are cute and can be comforting, the space available was limited to essential items.
Lastly, I realize that many of the suggestions provided may not be possible due to Covid -19. These are recommendations solely based on my experience with both boys. Kayla & I continue to brainstorm & network with parents currently living in the hospital. If you read this & have any tips or suggestions that could help during the pandemic, we would LOVE to hear them <3.
During the Super Bowl this year, SickKids Foundation released a commercial with a girl named Kaitlyn.
She is 24 years old and was diagnosed with a rare disorder called VACTERL Syndrome.
So this hits close. Real close. VACTERL is part of what Adam was born with. You can see the E stands for Esophageal. By the grace of God he had no other anomalies, and wasn't considered VACTERL. It's not usually like that though. Usually babies are born with more than one. It's extremely rare to just have the isolated esophageal atresia (gap). Seeing this young girl, so healthy, at her age, accomplishing so much, absolutely shakes me to my core. It's amazing. It just really hits me how... Lucky - it's not luck though, how blessed we really are.
The flashbacks, the fear, of being pregnant and not knowing the extent of Adam's condition. Every week going for ultrasounds, juggling life, work, so much anxiety. Every minute in the NICU having extensive tests done around the clock to rule every possiblity out. Dealing with genetics when they are surprised it's "only the EA" and are up our ass for more tests to figure out why, because it's so rare to have such an isolated outcome. Being told that even though this rare it's amazing but we're going to have to stay for a year.
Not knowing how this will affect our baby later on in life. Will he swallow? Will he eat? Will he be able to sit at the lunch table by himself with his friends? Go to play on time? Eat breakfast and go to hockey practice?
Seeing this beautiful girl, grown up, becoming a nurse, with so many VACTERL issues, what she's accomplishing, when Adam only HAD the one....
The absolute guilt I feel. How can I even compare. How do I have the right to talk about this when my son is the way that he is now? Perfectly normal, like it didn't even happen. When he's not suffering from any of the other VACRL anomalies or associations. When he is the small percentage that is ok from all of this.
Why am I advocating and raising awareness when he's fine. When it doesn't affect us anymore. It's done, move on, be grateful. There are still families that are suffering every day, with what Adam didn't have.
I see it as how, why, how come he didn't have any of that when everyone else does? Matt quickly reminds me to ask instead, 'how come he was born with anything at all?!'
This is what I suffer with.
This is why I do whatever I can to help other people. Because I am in a position to do so.
It's not a bragging right. It's not a debt owed. It's not holding onto the 'one moment my child was sick' as someone so nicely put once. Though my baby didn't have any associated issues, we lived at the hospital every day and every night for eight months. My pregnancy was traumatic and absolutely ruined from the moment I found out during the anatomy scan.
Living in fear every single day, no diagnosis, no understanding of the extent of my baby's condition. Not knowing when he was born how long we were going to be there for. All. Day. Every. Day. He didn't see the sun for months. He didn't feel the breeze. He was attached to a wall, through suction, so he wouldn't die. He was intubated, unable to move, on hard narcotics when he was less than a year old. Poison in his system to keep him alive. Crying with no sound, no tears. Complications with his lungs they deflated for the surgery. Fed through the tube through his stomach. Meds. Throwing up the smallest of pieces of mushed food.
Sitting with a teacher at day care, who made sure his food was cut up small enough, who made sure he had a drink after every bite.
Not knowing if I CAN have another baby because I know that I CAN'T go through more ultrasound appointments. I can't re-live that fear, anxiety, trauma that even the thought of paralyzes my body.
But somehow feeling guilty because of where we are now. Regardless of the pain of what we've been through. Others have it worse, so I'm not entitled to feel my pain.
This is what I struggle with.
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