i learned today of a friend of a friend who's settling in for a long hospital stay with their little. while the situation is different than ours was, someone asked if i had any advice for a long stay. i started to respond, but then realized i was writing a whole book. so i thought i would offer it up in a blog post. hopefully it will be helpful to her, but also to others who might come here.
so my two big things i heard a lot while we were inpatient, both from nurses and other parents were:
1) make sure to take care of yourself.
2) be strong for your little one.
here are my thoughts on that....
1)feel free to not get enough sleep because you want to sit and hold your baby. feel free to sleep in the room because she's had a bad day and you want to be near her. while it's important to take care of yourself, most of the people telling you that have never been where you are. so feel free to figure out what works best for you. while our little was intubated i got eight hours of sleep at night and a shower every morning. i felt so guilty i wanted to puke most nights leaving the hospital to go stay at the ronald mcdonald house. once she was extubated, i stayed in her room and went to the rmh to shower, eat, and take a little break here and there. i slept there on weekends while jason stayed at the hospital.
so yes, it's important to try to eat, shower, and sleep. however, the reason you are in the hospital is because you are taking care of your little. so if things fall by the wayside, or you (like me) spend large quantities of time eating chips and drinking soda-when you get home you will likely go back to eating healthy.
2)feel free to lose it as much as you need to. cry. your baby doesn't understand you being strong or not. and strength does not come from sitting in a room day in and day out with a sick baby and not crying. i cried in the shower. i went and ran up as many flights of steps as i could, then just sat and sobbed. i cried while i ate alone in the rmh (others around me were a little uncomfortable the few times i did this). i cried while i sat in shilo's hospital room. if you have an older child, it's okay to cry too. abigail saw me cry many times. and we talked about how emotions are a good thing.
some other things i found helpful.
if you usually have to pay for parking, figure out if there's a way to get it reduced, free, or a parking pass. also, if you are paying for gas, talk to the social workers about help with that.
take as many free meals as you can get-gift cards, other people offering to bring you food, etc.. while our daughter had state insurance so we didn't have to pay for the actual hospital stay, eating, buying toiletries from the hospital (we only have one car and my husband had it), got expensive. and while the rmh meals were great, there wasn't always one available, and some nights they were things i couldn't bring myself to eat, even for free. ;)
be honest about what you need. if someone asks what you need, and what you need is someone to do your laundry, then hand it to them. i had a few friends of friends who wanted to help if they could, and i handed them a load of laundry, dirty underwear and all, and let them wash them. it was a huge help for me time wise (i didn't want to take hours sitting in the rmh washing laundry). even others cleaning your house, mowing your yard, so on and so forth. people want to help, and they often don't know how.
don't be afraid to be the 'crazy parent.' i went toe to toe with the doctors over different things many times. by the end of our stay, they all respected me, and knew that i was informed about my kid. on the flip side, the residual guilt i have over a few things are the ones that i didn't fight when i felt like i should have, and they turned out sucking for my kid.
that will lead into, do your best to let go of guilt day to day. talk to a counselor if you need to. there are social workers on staff that can help you as well. and there are often patient advocates that can help you out as well. don't feel silly talking to them. it's their job. and it's okay to need emotional help getting through something that's pretty hard.
some nice things to keep on hand:
lotion, lip balm, and nasal spray. hospital=the driest air you've ever experienced.
stretch pants. you can sleep in them, then wear them all day. i find that even in my short stay i tend to change shape a little while living in a hospital. so the stretch pants do a nice job accommodating my changing waist line.
cash. quarters. while most places take debit cards now, it's handy for the 10 p.m. vending machine runs because you missed dinner, or the deliveries because the rmh doesn't have a meal that night.
your own pillow from home (although i would leave this at the rmh. i am a little paranoid of hospital germs coming home).
a blanket for the room that you don't mind throwing away when you leave. the rooms are often cold. and then there's the germ factor of it touching the floor, or if the cleaners accidentally throw it in with the laundry, you don't want to be bummed that you will never see it again.
social media access. this was important for me to feel connected, and keep people up to date. i also appreciated being able to skype with my husband and big.
books, a kindle, a nook, whatever you do to pass your time with reading. crafty material if you want crafts. i made flowers to decorate shilo's bed, and i hung hearts from her ceiling and all over her walls. she had the coolest room around. i also made hair bows for her and abigail.
movies/access to netflix/music etc. it helps pass the time.
if your kiddo can be dressed, button front pajamas or clothes (not over the head) so that tubes and wires can still be easily accessed, and your kid looks cute. if they are hanging out in a diaper, baby legs, socks, and hair bows are fun ways to help you feel like you are still taking part in dressing them.
lastly, the best thing i did while i was there, was hang up pictures. there was a picture on shilo's bed of her smiling. it really did help the doctors who came in to see that she was a happy healthy little girl, who happened to be sick and in the hospital at the moment. i also hung up some family pictures both for me, and for others to realize that while they might have been 'doing their job' this was my life. and this is my daughter. and there are people at home that we are missing, and that are missing us.
if you do nothing else from this list, please do the pictures.
also, if you want to read about our 96 day hospital stay, it starts here. and there is a happy ending. it looks like this.
praying for all of those families in a hospital tonight.