It’s Congenital Heart Defect Awareness Week, and I’m reminded of the difficult days of waiting for our little guy’s surgery, the hospital stay, and recovery. It was our family, friends, and neighbors that made this difficult time easier to bear. Sometimes, it’s hard to know how to help a friend with a medically fragile baby or child. I thought I would share what helped us, our baby and his sibling, and in hindsight what I should have asked for help with.
For Baby:
Baby clothes – When your baby is in the hospital, the cute onesies and jammies aren’t practical. It’s easier to have separate bottoms and tops. That way you can change their diaper, and not disturb their lines and IV. Also, shirts that have snaps allow the medical lines to feed through the holes. Zippers don’t work as well. For kiddos with heart surgery, it’s helpful to find shirts with snaps offset to the side, and then the buttons won’t rest on their incision site.
Baby Gear: Our hospital PICU allows families to use bouncy chairs in the hospital bed. However, the chairs can’t be the rocker kind; they need to have a flat bottom. Another soothing item was our little guy’s Music Mobile.
Pacifiers – Often this is one of the few sources of comfort a baby can use immediately post-op. It’s also a tool the doctors used; a strong suck is an indicator of improved health.
Books – If it’s a long hospital stay, this can provide some distraction and sense of normalcy.
Baby Blanket – Hospitals get cold, and the hospital blankets are depressing! Wonderful volunteers made cozy baby blankets at our hospital, and I loved being able to put something on our little guy that made him feel like we were home.
Fresh fruit – Self-care and parenting is always a challenge, with a medically fragile baby in the hospital it’s even harder. Being stuck inside a hospital, eating vending machine food gets old. It’s amazing how an apple can cheer you up.
Toiletries – I actually brought my toothbrush, but was so sleep deprived I left it in the hospital parent lounge bathroom. I wasn’t about to use it again later. Thankfully, a volunteer had brought in a small bag of toiletries I could use.
Food Train – I don’t just mean home cooked meals either. It was difficult to leave the house to shop for groceries, for fear of bringing an illness home to our little guy. Our daughter’s preschool teacher organized a food train. One mom worked long hours and brought over some frozen dinners over for us. She showed up to my house during a chaotic moment of me trying to manage my son’s wound bandage. This awesome mom jumped in to help my daughter and pre-heat the oven!
Logistics of a Hospital Stay – When our little guy’s surgery was unexpectedly moved up, I had to spend the next few days calling specialty pharmacies to start his pre-op meds, making insurance calls, and coordinating pre-op appointments. It was madness. Coupled with the stress of the surgery, I completely overlooked accommodations for me and my husband. In hindsight, I wished I had asked an organized friend to call the hospital and figure out the logistics. There is the Ronald McDonald house for families that live far away, however, we lived closer. I had no idea there were parent lounges available, and which floor they were on and what they provided. I didn’t know about programs for siblings. I didn’t know to request a second pull out couch, and bring our own pillows for the PICU stay. I pieced it all together during the crazy hospital stay.
Prayers and Positive Thoughts – I only shared our son’s health status with a few friends, but they quietly shared our news with our permission. The morning of our son’s surgery I was flooded with text and Facebook messages sending prayers and happy thoughts. It really meant so much to now people cared about our son.
Emotional Support- For some family and close friends it’s difficult to talk about what’s happening. They care deeply about your baby too. In some respects, it’s easier to talk to people who had some distance from the situation. One friend could listen to the medical procedures, and it didn’t freak her out. Some friends distracted me with their normal parenting problems, and I could forget the seriousness of our little guy’s health.
Stay Away – I had family who wanted to physically be there, but because they had cold viruses, they thankfully stayed away. I really appreciated their understanding of how fragile our little guy’s health was.
For Siblings:
Toys – When we unexpectedly had to yank BeBe out of preschool to protect our son’s immunity, she was upset. However, a family member loaned her a bin full of their toys. It was awesome and so helpful! A few weeks later I had the toys slowly “disappear” until I had a full bin in my car and could return the toys.
Extra attention – Her preschool teacher was amazing through this. When BeBe could no longer attend school, she would drive by our house and drop off crafts on our front porch for BeBe. Later, she would come by and sit with BeBe on the front porch to go over lesson plans. She was an amazing teacher!
Family love – The absolute best was my parents and other family members letting her stay at their house and showering her with love and attention.
guest
We had different issues to deal with, but we found it very hard when family members (we live in a different country) wanted to be updated every 2 seconds, and taking it personally when we didn’t take their calls or reply instantly to their messages. We were actually not allowed to use our phones in the intensive care unit, where we spent a lot of time.
One way we handled this was designating a family member that updated everyone else, but some people still took it badly, not realizing we were dealing with life or death situations, and that making them feel better/validated was the least of our worries.
So I’d also say that although everyone meant well, it would have been nice to be given some slack, and not to feel pressured.
blogger / cherry / 174 posts
@ MM – That’s a good point. I actually didn’t tell many friends in the beginning about his diagnosis. It’s hard to explain why I didn’t, other than it was just too upsetting to discuss at times. I think it made some people feel left out, and I miss those friendships now, but it’s just the way things worked out.