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Sunday, November 7, 2010

My Hospital Stay Tips

I've been meaning to write this for some time, but just never seem to actually sit down and do it.  I thought some people might find it helpful to have a good set of hospital stay tips, in case they had a baby/toddler/child that is facing their first hospital stay.  Please feel free to leave a comment with your own tips. 

1- If possible, tour the hospital your child will be staying at.  Talk to the doctors and nurses, find out where things are, and ask any questions you need feel will help you be prepared.  Find out how meals and the such work, where the bathrooms, showers, and washing machines are, and all that good stuff. 

2- This is one I really can't stress enough.  If at all possible, stay with your child  day and night.  I know that this is not doable for everyone, and my heart really goes out to those that want to be there and just cannot find any way to make it work, but I really feel this is huge for your child.  The nurses will be great with your child.  They will take good care of your child.  However, they usually have at least 2 children to take care of and they just cannot give your child what you can.  They cannot give them the same amount of hugs, skin-to-skin contact, feelings of safety, and reassurance that you can.  When I was in the NICU with Madi, the first night they did not have a private room for us so I stayed in a separate room within the NICU designed for parents to stay with their babies the night before they took them home.  The plan was they would come to get me when they needed me.  I regret that decision all the time, though I cannot change it.  Madi was upset and instead of coming to get me, they decided she needed pain medication (she may have, I'm not saying that, but she might have just needed momma too), and gave her morphine.  They gave it too fast, though, and she stopped breathing (or her heart stopped, I'm really not too sure, it's all kind of hazy right now).  They came and got me after they got everything under control, but I should have been there in the first place.  I still cannot imagine what it would have felt like if I wasn't, and the stuff they gave her to counteract the morphine did not work.  I can't even think about that.  I was in such a daze because I had just given birth and all that good stuff, and I should have just insisted I slept in a chair by her bed.  They moved us to a private room the next day and I clearly remember the set of twins across from us.  One was going to get to go home, but one was not, so they separated them to rooms side-by-side.  The parents would come for an hour or two and hold them (give them "friendly touch" as they called it) and then leave.  I felt so bad for the baby that was going to have to stay, though.  They would turn his lights on max during the night and poke and prod him all night.  He would cry this pathetic little cry, and no one was there to ask them to turn down the lights, or to do his testing during the day and let his little body rest and heal at night.  They did all his blood transfusions and everything and never let him rest.  How was he supposed to get better?  In Madi and my second stay in the PICU, a nurse was telling me one of the hardest things she had to do was let the babies cry because she had to attend to her other children too, as well as doing her computer logging and the such.  Beyond all that, I really think that the reason we got out so quickly the first time (5 days instead of the normal 2 weeks) is because I was there with Madi and she got so much skin-to-skin time.  I was nursing her and holding her just 2 hours after her first big surgery to close her back and put in her first shunt.  I know it's not typical, but I really think it helped.  The fact of the matter is no one loves your child as much as you, and no one will advocate for them like you will.  If there is any possible way to be there, I really believe it is best.  If you cannot be there, maybe you have friends or family or people from Church that can take shifts.  If none of that is possible, make best friends with child life.  They can get volunteers in your child's room as much as possible so they are not alone.

3- Do not be afraid to ask questions and speak up.  Just because they usually do something at a particular time or in a particular way does not mean it has to be done that way.  They always wanted to bathe and weigh Madi at 2 or 3 am because it was their slow time.  She was trying to sleep, though, and would get very upset.  I asked if I could just give her baths and weigh her in the morning myself, and they were fine with that.  Some things have to be a certain way, but not everything does, and it doesn't hurt to ask.  I also found it helpful to bring a laptop with me.  Not only did it help me pass the time, but I also could use it to look up information if I was confused on something.  For example, they wanted Madi to go NPO (nothing by mouth) for 6 hours.  For a breastfed baby, though, most hospitals only require 2-4 hours.  I looked on the La Leche League website, as well as a few others, saw that 6 hours was not necessary, talked to the doctor about it, and they happily agreed to 4 hours.  They just hadn't realized Madi was nursing.  Of course you have to be careful because there is LOTS of bad information out there on the Internet, but it is nice to be able to research a bit more if you feel you need to.

4- The hospital can be a noisy place!  Bring a fan or a boom box for some white noise.  We always bring our CD player/boom box (do they even call them that any more, or am I just really showing my age right there???) with a nice relaxing classical CD, then put it on "repeat" all night long.  It really changed the atmosphere of the room and helped us both get good sleep at night.

5- If your little one sleeps in bed with you at home, you can request that they let you sleep together at the hospital too.  We always have to sign a waver that says we will not sue them if Madi falls out of bed, but they have no problem with it.  Instead of a crib, they would bring us a "big bed" along with some blankets to roll up and put on both sides of the bed, next to the railing, to close up any gaps.  Even if you do not sleep together at home, sometimes it is nice to be able to be close.  Many times after surgery, kiddos just need to be closer.  I did not realize you could do this until a few nights in to our first PICU stay.  Madi had just gotten out of surgery and would not let me put her down.  I kept falling asleep sitting up on the couch with her, which they frown upon (they will take the baby from you and put them in the crib as they say it is a "fall hazard").  I told the nurse that I just wanted to be able to sleep next to Madi so she was comfortable and she said, "Oh!  You can do that!  Hold on!"  She came back with my waver to sign and a big bed for us.  It was awesome!!

6- Do not forget what you need to take care of yourself.  Bring everything you need to keep yourself fresh, like a toothbrush, toothpaste, change of clothes, deodorant, and things like that, but also things to keep you upbeat.  Bring movies, your laptop if you have one (you can even request one at some hospitals), music to listen to, some snacks, a water bottle, books and/or magazines, games if you have games you like, and pictures that your other children drew for you to hang up in the room as well as pictures of your other children (Conner was not even 2 when Madi and I had the most hospital time, it was rough!!) to name a few.  Chocolate, of course, is always pretty necessary too, as is money for food (unless you are nursing and get it free)

7- If you have a baby, and there is any way to nurse them or pump and give them your milk, do it!  You can also ask for donated milk instead of formula if you need to supplement (I supplemented with donated milk by using a supplemental nurser system until my milk came in).  Breastmilk is amazing and contains all kinds of crazy and cool stuff like DNA, Immunoglobulins (antibodies), Lysozyme (antibacterial), fatty acids, probiotics (or is that prebiotics, I can't remember), and so many other great things.  It also helps by lowering the SIDS rate, decrease the risk of some childhood cancers, and so much more.  Plus, it's free, and I like free.  There are a few things to know if you are nursing/pumping.  You can ask for a hospital-grade pump to have in the room.  I needed to pump every time Madi went NPO and many times after surgery when she wasn't feeling good, and it was so nice having a pump right there in our room.  They also gave me labels to stick on the bottles of milk so they could freeze or refrigerate it for me.  I got many comments about all the milk I had in their freezer (which I was later able to donate to a baby in need.... pretty cool!).  Another really important thing to know is you might be able to eat for free!  Since your insurance company does not have to pay for formula, they usually will pay for your meals.  It was so nice to get to pick up the phone, tell them I was a nursing mom, order food, and have it delivered to the room for free!  Some hospitals give tickets for food, some deliver it, some do both, but either way, you will be well fed :).  I found it helpful to bring my "hooter hider" to pump under, since you never really know who will walk in your room or when.  The doctors thought Madi was adorable and would come and watch us through our window and talk about how cute she was.  I thought it was super sweet, but I would have felt a little awkward about it had they been watching me in action.  I know they see it a lot, and think nothing of it, but I liked my privacy. 


8- If you find your child wants/needs to be held a lot, it can be really helpful to bring a good carrier, such as an Ergo or Beco, to hold them in.  If you have a wee little one, a good soft wrap, like a gypsymama or moby, works really good too.  This will give you free hands to do whatever you need, but will also let you keep your little one close.  You do have to watch for wires and the such, but it is very doable!

9- I liked having a pre-written care plan for Madi that the nurses could read before they started their shift.  When I had Madi I knew that we would be stuck at different hospitals for a little while.  Thankfully it was only a few hours, but I sent David with Madi and my care plan before I could be there.  The nurses said they had never seen one before, but were excited about it and they all made sure they read it and helped us out.  I put things in there like the fact that our goal was to breastfeed and to please help us do whatever we needed to make that possible, that I wanted to nurse on demand, to please keep the lights dim at night, to test as much as they could during the day so that we could rest at night, and things like that.  They nurses were very respectful and helpful.  Of course, you can request something and that does not mean it will be able to happen, but it doesn't hurt to ask :).  The important thing is just to know that your plan may have to change, and that's ok.

10- If you do not like a nurse, ask for a new one!  I thankfully never had to do this, but you can.  If you like a nurse a lot, ask for them again.  I did this a lot.  It really helped to have the same nurses as many days/nights in a row as we could. 

11- If you have an older child, bring games, postcards, their favorite lovies, and anything else that will make them comfortable.  I have not had a stay with an older child yet, since Madi is not quite 2 yet, so maybe some other more experienced moms can chime in with advice here.

12- Visitors are always nice, but it can be hard when your little one is in and out of cat scans and x-rays and all that fun stuff.  I found it helpful to just have them text with a time range that they wanted to come, and I'd text back with what time would work.  Sometimes I had to have them wait a few minutes, but it was so nice to have people to talk to and interact with.  The hospital can be so lonely!  I remember when Madi and I were there for almost 3 weeks and I was so homesick.  Having company made my day!  Don't be afraid to ask for visitors, but also do not be afraid to say "no" if you just need some time to yourself, or if your little one is under the weather and needs things quiet.

13- Updating everyone can be frustrating.  Everyone that loves you and your child will be calling to see how they are doing.  It is a good thing, don't get me wrong.  I always really appreciated that people took the time to call and that they cared enough to do so.  It was hard, though, when I had a crying baby or doctors to talk to, or had testing going on, or whatever, and obviously people do not know your schedule or circumstances.  I found it helpful to have a blog that people could read for updates (well, this blog ;)), to have a "go to" person they could call that I kept updated, to have people e-mail so that I could get back to them when I had time, and to send out mass e-mails every so often of what was going on and what people could be praying for.  It is awesome to have so many people loving your child and praying for them!

14- Do something special for your husband and little ones back at home.  I missed Conner so so so bad when we were away.  I had never been away from him before, he was still nursing, he still slept in bed with me, and wow was it hard to be away!!  I found it helpful to bring cards to write to him.  Even though he was little, he loved getting them in the mail.  I also got fruit snacks for him from the cafeteria to bring him every time I ran home to visit (when someone would sit with Madi for me) or when he came to visit me (when it was not RSV season, that is).  It sounds silly, but it was our thing, and it really meant a lot to him!  I think it really helped me too.  (** Just a little update... Conner is now 7 and STILL appreciates those fruit snacks and asks about them any time I am coming home from the hospital.  It's now our little tradition :)).  I also wrote David little cards and notes.  It helped keep us all connected and close.  We did not have a video chat set up, or I would have done that too.  It would have been really helpful.  We also were not able to have David and Conner stay at the Ronald McDonald, because David had to work (our moms helped watch him during the day), but that is also a great option for having the rest of your family close for visits and the such.  The Ronald McDonald house is awesome!!  They have kitchens and playgrounds, vending machines and toys, computers and activities, and a lot more.  Another great thing was letting some of our friends bring Conner and David dinners while I was gone.  They loved the company and yummy meals, and it helped take a lot of stress off of David.  Some of our friends even helped him clean the house during Madi's biggest stay, and it meant so much to all of us!

15- Don't forget a nice pair of slippers.  Hospital floors are very yucky, so you probably shouldn't (though I did) go around bare foot, so it's nice to have a pair of slippers to slip on and off.

16- Get out sometimes.  Take your child for walks.  Take them to the hospital playground or playroom if they have one.  Have someone sit with your child while you go shower, run home, spend time with your husband or other kids, or do whatever you need to do to stay happy and sane. 

17- Don't forget gum!  Sometimes things get crazy and you realize it's been a while since your last tooth brushing.  It's a fast way to freshen up until you have time to take care of yourself.  It really sucks when you can't figure out where that smell is coming from, and you realize it's you.  Yup, been there.  Deodorant and gum were my best friends some days!

18- It is ok to question why.  Do it politely, but do not be afraid.  I would have had a c-section, instead of the birth I wanted, had I not asked why I had to have that c-section.  I am so glad I asked why!

Well, that's all I can think of for now!  I hope this helps someone out there!

Here are some more tips to share from fellow bloggers:


Amanda_in78 said...

That's a fantastic list!
Music - for me, was a big one. We had Nick a year ago, and his shunt placement at the beginning of December and I really enjoyed listening to my christmas music.
As well some hospitals will have food delivered to your room (for a price). I found this out the last day we were there.
If you are unable to stay, don't be afraid to call in the middle of the night (or day) for an update about your child. I was encouraged to do this and no one should give you a hard time for calling because you were worried about your child at 2 am.

Anonymous said...

I completely agree with you. My daughter, Ruth, a few years ago had a stay in the hospital and nearly lost her life. I believe that children are far more likely to survive if there is lots of skin-to-skin, Mom's or Dad's voice and gentle touch, and low lighting. Also, I believe in minimising the prodding and poking. Many times the tests are inconclusive because of contaminations or newbies doing the testing. If you feel your child is in distress because of the feet being overwhelmed with blood extractions, ask them to take it another time and give baby a rest. Also, educate yourself on good blood drawing methods. There are methods that I have seen used that are virtually painless and it DOESN'T involve squeezing (which is incredibly painful) at all! Encourage the person doing the draws to learn about this. Be patient with them, however, as sometimes they are nervous and new to the profession. Always be kind.

Anonymous said...


Another tip is to take a pen with you in case you need to sign paperwork or make notes as well. Get as much sleep as you can as well. Do not hesitate to ask questions either. Also I would also have plenty of food and drinks available. Pack a bag of clothes and toys and so on beforehand.

Get any contact information for everyone including therapists and nurses if possible. This includes phone numbers and email addresses too. It will make it easier for everyone. Try and be independent as much as possible. Having said that do not reject any offers of help. Make sure you get exercise and fresh air at least once a day. Most importantly relax. Your child will be in good skilled hands and get high quality medical care. I think these tips apply for any hospital stay irregardless.


Laurel’s mom said...

I second the tip about asking questions. Also try to sing to your baby softly and also if possible gently touch her too. Stroke her hair and smile at him or her. Another thing to do to pass the time is to read to your baby. Talk to your newborn in a gentle voice occasionally as well so they can get to hear your voice. Ask for a prenatal NICU tour and don’t feel bad about asking the staff to tell you more about what happens that is technically a part of their job description. My stepkid Louise was willing to sit with my son when I needed a break from the hospital NICU. She filled in for me when I wanted to eat or take a shower at home. She even made notes. I had a camera so I got permission to take pictures of my baby. Pack accordingly. I had a hospital bag filled to the brim with items for our hospital stay. Also have snacks on hand. Don’t feel bad about requesting help.
I needed plenty of help during my son’s NICU stay. People were kind to us. They looked after my newborn healthy girl and cooked for us. I received cards and letters in the mail plus money to help. Emails were sent out by my partner updating everyone. Even though it was Christmas time we did not do much that year. We had a low key small no cost Christmas tea of turkey sandwiches and small mince pies plus mulled wine and jam tarts.

Thara said...

I fully agree.

When my son was a infant, not long after birth he was taken away from us to the NICU where he spent nearly three weeks. They were observing him carefully after his first ever operation in case. My husband followed closely behind while l bonded with my daughter who was still in the delivery room with me on my chest. He too had open spina bifida and was born nearly four years ago. I used to pray for him each night as we left him there and often irritated the nurses with my questions. Even when he had his clubbed foot procedure I had a short typed up list of questions to ask the doctor. This was some time later.
My son’s orthopedic doctor used to chuckle. He is now going to be four years old this year. He did not have hydrocephalus that required medical intervention so I cannot really talk about that aspect of spina bifida or the surgery but when he was a baby I had a bag that was packed as a additional precaution which was left by the front door. My handy tip is to buy reading material. Also make sure to bring some spare cash to purchase drinks or food from the cafeteria. My husband updated all of our family and friends on my behalf. I was too busy bonding with both of my children to think about relaying any news or updates.
I still appreciate all of the gifts, cards, prayers, calls, texts, visits, emails and letters. They made me feel people still cared about our son and family.