THE HOSPITAL STAY
What should we take to the hospital?
For the Baby:
·- You won't need a lot of baby clothes, since the baby will be in a hospital gown most of the time. But, do bring socks or booties and a hat to help keep the baby warm and a few comfortable outfits for the baby to bring him home in. (Outfits that open easily in the front are helpful, since the doctors often check the incision, and keeping it open may be more comfortable for the baby.)
·- The hospital should provide diapers and formula during your stay.
·- If you bring baby blankets bring brightly colored ones, and label them. Even with these precautions, they may get lost easily with the hospital laundry. Consider bringing a stuffed animal or something that can't get so easily mixed up.
·- Coloring books, crayons, puzzles, hand-held games etc. (for siblings).
·- Music cassette tapes with lullabies to help relax the baby and drown out the sound of the equipment (see if the hospital has cassette players at the bedside, or bring a small portable one.)
·- Record cassette tapes of your voice to have at the bedside when you are not there. You can record yourself reading a few children's books.
- Car seat for when you are discharged. (If flying, you can put the baby in a car seat on the airplane. You can check the base, and just take on the carrier. The carrier can be strapped down with the airplane seat belt.)
·- Insurance cards, phone book, email addresses (if access to a computer - some hospitals have computers for use by patients and their families.)
·- Prepaid calling cards if you are going to be long distance. Often the hospital phones don't let you call out without a card. (Note: cell phones are usually not allowed in certain parts of the hospital.)
·- Warm, comfortable clothes for parents (sweats, sweaters, etc.), a pillow and toiletries.
·- A journal to write down your feelings, and keep track of what happens during the stay. In that journal, or in a separate notebook, you can keep track of medication dosages and changes as well as other important information. Don't hesitate to ask questions or have the nurse or doctor double-check a dosage if you think there's an error.
·- A few folders or large envelopes (9x12) for copies of forms, physician's drawings of your child's anatomy, notes, discharge instructions, etc.
·- The names and addresses of your pediatrician and the pediatric cardiologist. The hospital will usually send a copy to the child's physicians on record, so make sure that their names and addresses are correct on their records.
·- Prior to discharge, request a copy of your child's medical records for you to keep.
How long will we be at the hospital?
That depends on a lot of factors. Ask the hospital what their average length of stay is after the Norwood or a transplant. Remember, it is very hard to give estimates since every baby is different. Babies who don't have any complications following the Norwood may be discharged in as little as 2-3 weeks, and those with complications can be there for several months or longer. For a transplant, ask how long the typical wait is for a donor heart, and how long the recovery usually takes. It's impossible to predict how long your baby will need to be in the hospital, so it's best to try to keep an open mind and not make any plans for after the birth.