So many of our T21 babies with Down Syndrome have heart conditions (upwards of 60%) Some require surgery, others have heart problems that self correct. When a family learns that heart surgery is in their future, the questions swirl, the anxiety runs high and the unknown is almost unbearable. Bryna shares her best tips for how to get through it all, and stay sane in the process…
Surgery Day
Keep Busy
During the surgery, bring something to do that will keep you occupied. We brought our computers and played solitaire games using the free WiFi at the hospital. Kept our minds off things at least for the first couple hours. We also left the ICU area and went to a special area in the hospital set up with big windows, plants and fountains. This helped to keep our stress a bit lower, being in a nicer environment.
Pumping Hacks
If you are pumping milk, check to see what’s available. For me, they actually provided all the supplies (snappy bottles and the pump/tubing). They printed labels for me, so I could just label and put it in the freezer right in the ICU when done. If they do provide supplies (or if you have to bring them), I would recommend bringing a small carrying case or backpack for the pumping stuff. I did not and it was kind of a pain to try and keep it organized. In the ICU at the hospital we were at, there is a quiet pumping room. Take your phone in when you go and put on some soothing music or pull up a picture of your wee one while you pump.
Sleep
If you can, go home or to wherever you are staying to sleep while your little one is in ICU. You will need to store up sleep for the ward and there is really nowhere to sleep in ICU (at least not where we were!).
Prepare Yourself
Be emotionally prepared to see other babies in the ICU who may not be doing well. This was one of the most difficult things for me. Your heart will ache.
Be Involved
Try to be there for rounds. This is where you will find out the plan and have the chance to ask questions or advocate for certain things. Ask your nurses when to be there. We tried to be there for both morning rounds (anywhere between 9 and 11am) and evening (anywhere between 8 and 11pm). It is a bit of a guessing game as to when rounds will happen but I found it so valuable to be there.
Hydrate
Stay hydrated. You can bring drinks in ICU but you cannot eat food (at least that was the rule at our hospital). Bring a water bottle in with you.
Bring Books
Bring a book to read. I found in ICU especially your little one will be sedated so it is nice to have something to do while sitting by the bedside.
Break Out
Take breaks and eat stuff. Make sure those breaks involve getting outside. At the Stollery, just across the street is Tim Hortons and some other stuff. Frank’s co-workers got us a Timmy’s gift card which was awesome. It got us out for a speck of fresh air and helped make sure we stayed fed. If people are asking what they can do, something like a gift card for food/coffee at the hospital or nearby establishments is a great suggestion.
Post Surgery Hacks
Baby Gear
Bring sleepers for baby, they need to be the button up ones (buttons from top to bottom). I could not wait to get her in them. They are more comfy and they actually keep the wires better contained.
For Mom
Bring slippers and comfy clothes for you. Bring toiletries for you. You can shower there, or at least wash your face and brush teeth (amazing how good that feels!)
Get familiar with where stuff is. I knew where the warm blankets were, the towels, extra diapers, etc. I just helped myself when needed. Bring food. Hopefully, they have a fridge for families (our ward did). I made sure I had fruit, hummus, and other healthy snacks as well as chili, stew, and other meals to warm up and eat. It is nice to eat some good stuff instead of hospital food and the ward is the place to do it!
Welcome Visitors
Have people visit. The days are long and it is nice to have some company on the ward. But make sure only healthy people visit!!!
Distractions
Bring things to do for you and baby. Bring a few favourite toys, bring books and computers/phones and chargers. Bring a deck of cards. Keep yourself occupied.
Blog about it
Finally, I would really recommend setting up a blog or Facebook page or somewhere where family and friends can be globally updated. I loved doing the blog. One update for everyone, no need to spam people with multiple texts or emails. It worked great!
My name is Bryna, and I come from Edmonton, Alberta, Canada. My little family includes my partner, Frank, and our two girls, Norah (3 years old) and Freya (almost a year old). Freya was born on July 4th, 2016 and we found out the day after she was born that she had Down Syndrome. We found out a few days after that about her heart condition, a complete AVSD, that would require open heart surgery to be fixed. It was a lot to take in right at the beginning, but we have learned and grown so much, and we have our beautiful Freya to thank for all of it. She is amazing and we are so proud to be her parents and be on this journey together. Follow Bryna on instagram @brynadee
Hi Bryna,
I appreciate this post very much because the threat of baby heart surgery is real and parents often do not know how to handle it. You included a lot of information and practices that I would have never considered before. It is natural to worry but this post really helps.
She did a great job, didn’t she? Thanks for stopping by Ronny!
a friend of mines lil girl is 3-6 months & just had to have heart surgery , & i wanna make her a get well basket , can you tell me things that would be helpful to send in the basket things they or she may need? thanks in advance…PG
Hi Penny
Does your friend’s child have DS or just a heart condition? I will seek suggestions but thought that knowing that fact may help.