(1) bring dark clothes so blood stains don't ruin your clothes. It's not a lot of blood, but even a small blood spot can ruin a light colored shirt.

(2) bring lots of cloth diapers to use as bibs

(3) request a private room the moment your child gets out of recovery and into the PICU. You won't be guaranteed one at that point, but at least you will be put on the list for those who want one. We did this and got a private room from the start. It made a huge difference for us as we could sleep overnight in our daughter's room on a couch/bed they have next to the window. Laying down with her and getting some rest too helped her and us equally.

(4) Go out and buy a "Soft Spoon" from Sassy right now!!!! Unlike the regular kind that is a metal body coated in rubber, the "Soft Spoon" body is made totally of flexible latex...no metal whatsoever in this spoon. It is very friendly to sore mouths. We bought it at the local supermarket there in St Louis, but having it ready before you go on the trip would probably be helpful. Our daughter loved that spoon and still won't eat with anything else.

(5) Request your child get Benedryl if s/he seems to have an itchy face from the Morphine. It helped our daughter tremendously - not only with the itching, but to help her sleep as well!

(6) Try KFC's mashed potatoes and gravy as soon as s/he is able to eat more than just pudding or formula. After 5 days of vanilla pudding and vanilla yogurt, our daughter LOVED those mashed potatoes! Also macaroni and cheese is a favorite of hers now.

(7) Be prepared that things probably won't go as you expect after the surgery. (our daughter still isn't drinking from a bottle at 2 weeks post surgery, for example). Lots of things will happen that only make sense at the time, but which you hadn't anticipated before. Like I figured the salt on the crackers would hurt our daughter's tongue, but actually it was more the fact that she couldn't maneuver the cracker in her mouth that upset her so much. Their little tongues remain swollen for quite a while AND they have to relearn how to use the tongue now that it's been stitched up into a new form. It takes loads and loads of patience and love.

(8) You are only human. You WILL get upset and frustrated and want to pull your hair out when s/he cries or whines or throws temper tantrums one too many times in a day. But try to keep things in perspective and see that indeed each day does get better...even if only a little bit on one particular day. There will be days that seem like setbacks, but it's all truly progress. I was feeling like a big 'blue meanie' because I wasn't the patient Mother Teresa 24/7 with our daughter after her surgery. But when I talked to other moms who said they'd felt a little on the verge of insanity as well, I felt much more able to cope with my feelings and help our daughter more.

(9) Apparently some kids stitches come out completely by 2 weeks after surgery. Our daughter's haven't, and another boy is 4 weeks post surgery and still has some stitches. You may even have to clip those stitches yourself a few times along the way. Take these kinds of 'schedule changes' in stride. Your baby needs you to be calm when s/he doesn't know how to be.

(10) Be prepared that your child might have to get splints on his/her arms after surgery. If the child continues to put his/her fingers in the mouth, splints might be required to keep the child from injuring him/herself and those stitches! One mother assured me that her son was able to even crawl with those splints. It's not so terrible and could really help your child if s/he is too orally fixated.

(11) Don't give your child ANYthing hard to play with after the surgery. Don't let him/her play with your pen from your pocket, for example. It will only cause more tears when you have to grab it away when s/he tries to put it in his/her mouth.

(12) And if ANYthing comes up that you think is weird or frustrating or making you feel like crying: ASK us (the Beckwith-Wiedemann Family Forum Discussion Group) for help and ask Dr Marsh for help. Reach out. That's what the group is here for. And emailing some of us privately is also very helpful (I can tell you that first hand after I whined to a couple of you myself!).

(13) If you are bringing other children, bring a family member to care for them if at all possible (but if they are old enough, the best bet is to leave them with Grandma). We had planned on using a baby-sitting service for Brit's twin brother Zach. It was actually a blessing that it didn't work out and my mother came to help us. It would have been very very difficult to manage with just a baby-sitting service. The 'hassle' of having your mother-in-law staying with you is minuscule in comparison to the immense amount of help she can lend!

(14) Once your child is released from the hospital, you will likely be required to stick around for at least a few days. DON'T coop yourself up in your hotel room. Go out! It will do you all good. Just make sure to bring plenty of things to keep your baby hydrated (yogurt and pudding are full of fluids, just make sure they are kept cool if milk based). St Louis' web site is an amazing source of ideas to occupy yourselves during your stay there. 

(15) If you haven't scheduled your surgery with Dr Marsh and want to go with him, schedule the surgery now even if you think it isn't necessary for several months. He's usually booked up 2-3 months in advance. The only thing we would have done differently would be having it done earlier, but we didn't know to schedule that far in advance.

(16) If you are flying a long distance (i.e. from Europe to the U.S.) see if you can get a flight sedative for your baby. It is perfectly safe and was a godsend to us with twin one year olds on a 22 hour flight!

(17) Another very important flight tip: if you don't purchase a full price seat for your child, you won't have a reserved seat for him and he may end up on your lap. If there are any available seats on the flight, they will probably let you bring on a car seat to put in that empty seat. This makes things much more comfortable for everyone on the plane! But you can't use the car seat if you haven't brought it along to the gate in the first place. Plan on trying this if at all possible. If they won't budge about letting you bring a car seat on to utilize that empty seat, ask for a flight bassinet. It's only a cardboard box basically, but putting our son in it to sleep on our flight from NYC to Tel Aviv (laid out across two tray tables folded down in front of us) made a potentially horrendous flight pretty comfortable. The twins rested and so did we somewhat.

(18) Rent an apartment while you are there instead of a hotel room. It's cheaper and gives you more convenience. You can cook your own food, you can have one person awake in the living room while the other sleeps. In any case, try calling Lodging Services at the hospital for tips and information on housing options. The person to talk to at St Louis Children's Hospital is Patricia. The Ronald McDonald House is also an option but can only be reserved three days in advance. The Best Western Holiday Inn has special rates for families with kids in the hospital.

(19) The St Louis Children's Hospital has WATTS lines available to parents free of charge to call family back home. Use them!

(20) The surgery takes about 45 minutes, but from the time your child is taken away until you see him/her again will be about two hours.

(21) Locker services are available and pretty helpful to keep things in you don't want to lug back and forth every day.

(22) Ask for Thick-It to make liquids easier to manage and therefore easier to get down after surgery. In the supermarket/pharmacy it will likely be in the geriatric section.

(23) Parents can get their parking tickets validated free while their child is in the hospital. You can do this at the main entrance each time you enter or leave the hospital.

(24) Use the 8th floor outside garden to give your child and yourself some fresh air as much as possible. It's truly a beautiful garden.

(25) Call "Same Day Surgery" the day before to get instructions on what you are expected to do and where you are to go and when. Your child will likely be on a fast from midnight and only allowed water/pedialite from midnight to 6 a.m. After that nothing will be allowed. But it depends on when your child's surgery is scheduled as to what the hours of the fast will be. CALL TO MAKE SURE!

(26) When I had my daughter (now 5) in for the surgery, I was so overwhelmed. She was just about two and they had physically tied her to the bed to keep her from tossing about and shaking the tubes loose (at first just her arms, but her legs were restrained quickly there after). Just thinking back to that aspect still brings me to tears. After 4 days she was allowed up. She couldn't walk at first and it hurt her as she had been tied down. This took a about three days to return to normal functioning with no discomfort.

(27) Re: bottle feeding after surgery - I have been using a special playtex bottle for our son. It is a hard sided bottle that has a bottom that can be unscrewed. When I am feeding him with a normal nipple (one that I have not cut a large hole in) I use this bottle. I am able to unscrew the bottom once it is in his mouth so that the liquid flows down into his mouth with less sucking. This way the nipple does not collapse from the pressure and he does not have to keep letting go to let air in the bottle.

(28) While our son was still in hospital after surgery, the nurses gave us a bottle that has a long thin nipple (cleft palate bottle). The bottle is thin plastic and you are able to squeeze it to get formula into his mouth.

(29) St Louis Children's Hospital has a complimentary washer and dryer so you can do laundry daily if you want to clean your stuff.

(30) After the surgery, if she demands a faster feeding try a rounded sipee cup or open mouth cup. Our daughter's doctor had us use regular cups, but she was about two. It was messy, but she rather enjoyed it once she got the hang of it :-). If I had realized more of what to expect, I would have introduced her to a regular cup at home in a relaxed atmosphere making it a game and letting her get the feel of it before it became a necessity at the hospital.

(31) As for foods: anything soft. Mashed potatoes, applesauce, spaghetti o's w/out meatballs of course, pudding, custards, almost anything available in a baby food jar would be my guess. Children usually function remarkably well all things considered, usually better than the parents :-) and they adjust and adapt quickly.
 

And finally if any of you have other tips to add, please don't hesitate to email me (Julie). I'll add them to this list and get them up on the web site as soon as possible.

See our: Tips for how to prevent ear aches/popping on flights

See our: Surgeon Database for tongue reduction surgery

See our parent's views on:
How to decide what age is best for child's tongue reduction