A PSP member asks...
Our baby will need surgery and the hospital staff we have interacted with have not been helpful in terms of helping me think through how to have a successful (re short!) and comfortable (as possible) hospital stay.
I am still breastfeeding and am particularly concerned about making sure that I am able to continue doing so. I am seeking advice on the following questions (PS: these are questions I am agonizing over and I would appreciate ideas on just one of them; don't be alarmed by the fact that there are three questions!):
- What would you bring for your baby and for yourself?
- I am seeking guidance for both comfort measures and practicality (i.e. travel bottle brush/travel drying rack, white noise machine, zip-up footed pajamas, cooler with ice pack for breastmilk, eye mask, etc.)
- How can I best manage post-surgery time?
- There will be 24-48 hours where his eyes will swell shut completely. I am looking for ideas on how to entertain him while he is frustrated because he can't see.
- How can I be a good advocate for my baby?
- During delivery, I was fortunate to have my midwife boss around the hospital administrators/staff who were being adamant about unnecessary procedure (or annoying with their commentary). If I experience similar annoyances with hospital staff, I'm seeking guidance on how you would approach dealing with perceived interference and/or declining procedures.
I believe in the wisdom of this group and am hoping you can help a nervous mama out!
“I would highly recommend talking with your hospital’s child life team. Child life specialists are highly skilled at helping children understand and cope with their procedures (so they are less scary). I am a music therapist and have worked with some child life specialists, and I can tell you they are amazing at what they do. If you reach a roadblock with your hospital, I’m happy to connect you with child life specialists I know who are passionate about their work.”
“Ask for child life (in advance is best, by when you get there works too). Most child life specialists are in big children’s hospitals and can be found in the operating rooms and typically in the ICU. We are advocates and they will know how to assist you at their hospital.”
“All Childrens' hospitals also have Child Life and Music Therapy. They're great!! They should be able to help distract during procedures, come by your room to sing songs, play the guitar etc... bring toys. Make a playlist of familiar songs.”
“I would take any comfort or security items you have with you. Pacifier, stuffed animal, blanket, anything that smells like home.”
“Whatever makes life easy at home and whatever your child truly enjoys—bring! Bottle cleaner kit, special soap, sound machine, lovey, soother, mobile, baby carrier, ear plugs/eye mask, pillow, blanket, pump. Typically, large children’s hospitals have the materials for children, but it’s not always available and they are typically used by many kids prior to your child. They may not be as nice/visually appealing/functioning as yours at home. They usually have a fridge/freezer for milk being given to the baby.”
“In terms of activities for your son, I'd think about fun tactile and sound activities. Different fabrics in a wipes container that he could pull out, wave around, feel (I have one if you want to borrow it). I was thinking egg shakers, but that might get too loud for the other patients. Maybe some of those soft babybooks that have crinkly pages? Ball with different textures that he can feel and roll around? I'd ask if there's an occupational therapist in the hospital who would be available to help with activities and have some supplies.”
“Sing him a song or talk to him as he wakes up, the sound of your voice will offer comfort and reassurance. Pain control is important at this time, and your team will definitely work with you to make sure that this is optimized! If he's getting opioids, make sure he doesn't get constipated, if he is, bring it up to your team. Your nurse is your number 1 advocate, and ICU nurses are super experienced.”
“Bring an assortment of pillows with you, breastfeeding pillows, boppy lounger, it'll help keep both of you comfortable and he'll be able to lie at an angle in your lap.”
“Are you pumping? The hospital should have special fridges dedicated to breast milk storage, and there may be times it's easier to take breast milk from a bottle rather than nursing, in case it hurts him to support or move his head too much.”
“White noise machine probably isn't a bad idea if your son uses one to sleep now. And my son was hooked up to monitors and was getting oxygen, so we just kept him in the hospital gown to keep it easy.”
“Bring a white noise machine (and for you, earplugs/noise cancelling headphones so you can try and get some rest). There's an endless amount of noise and machine beeping in ICUs. They are the worst place to get rest.”
“Rounds are in the morning, and that's when your whole team (attending, residents, nurse) talks about any issues and the plan going forward. I'm not sure which hospital you'll be at (I trained at NYU), and all rounds were family centered, which means that the team walked around to the rooms and either stood by the bedside or right outside the door, and parents were encouraged to participate. You know your child best, so if you have questions or concerns you should absolutely raise them!”