If you have just found out that your baby has HLHS, you probably won’t be ready to read this entire book. Right now you are feeling overwhelmed and it’s hard to process so much information. This section, however, is to help make your hospital stay a little easier.

What do I do now?

If you have just come in by ambulance or helicopter you are probably very afraid right now. Your baby has been snatched out of your arms (or in some cases, your body) and swept away with a bunch of medical personnel and countless machines.

What do you do? Part of the time, especially at the beginning, all you can do is watch. Feel free at this time to call one of the people in the Baby Hearts Support Group. These are parents of children with the same problems your baby has. They’ll be happy to talk to you and answer any questions you may have. They are listed in the back of this book.

After your baby is stabilized, you can take a more active role in caring for your baby. If this is your first baby you may feel clumsy and embarrassed to do anything. But please don’t worry. The nurses are trained not only to care for your baby but also to teach you how to care for your baby.

At the beginning you may not really be able to do much of anything. Ask what you can do. The most important thing for you to do is to let your baby know you are there. Even though there will be many tubes and wires on your baby, you can find an arm or leg to stroke. You can move close and softly sing or talk to your baby. You can offer to change diapers.

One thing I did for my baby was to go to a music store and buy some tapes of music I knew he had heard (and I borrowed a tape recorder from Child Life services). I brought his quilt from home. I borrowed a mobile that had the same music as his mobile at home (from Child Life services). I put stuffed animals from family and friends in his crib to make it feel more like home.

When you have a critically ill baby you feel an overwhelming sense of vulnerability, fear and concern. If you already have another child, you are accustomed to solving medical problems with kisses, band-aids and Tylenol. With rare exception, anytime your child is hurt or ill there is something in the medicine cabinet that makes everything all right. I think one of the hardest things for me to deal with was the feeling of helplessness I had. There were few things that gave me a little sense of control and comfort. The one thing I could do, that no one else could do for my baby, was to pump my milk for his nourishment. I forced myself to eat balanced meals because I wanted to make good milk. When I realized that by taking Lasix Alex lost potassium, I made sure I ate at least one banana a day and drank a lot of orange juice. After the doctors started giving Alex my milk, they were able to discontinue giving him extra potassium. A mother’s body just seems to naturally know what her baby needs. It’s every baby’s perfect food.

Anything that sounds, smells or feels familiar will be comforting to your baby. That is why it is so important for you to touch your baby, talk to him and sing to him. Doing these things will be comforting to you, too. Both of you need to try and make this strange environment as comfortable and soothing as possible. Don’t forget, you (or your spouse) are just getting over the stress of having a baby and your baby is still recovering from the birth process. It is important for you and your baby that you spend as much time as possible with him at the hospital.

It is always appropriate to ask questions. If you are concerned about something tell your nurse or one of the doctors. It is their job to explain anything to you that you feel you need to know. If you are at a loss to even know what to ask, skim through this book. Maybe you will find some comfort from looking over some of the questions and answers.

If this is not your only child, you must also consider your other children. I took pictures of my baby, his nurses and doctors, and my husband showed them to my older son. It was good for him to see that even though his baby brother looked ill, there were many good people in the hospital taking care of him. Child Life specialists will have other ideas to help you talk with siblings about the baby’s hospital stay.

1. Make any special religious arrangements (such as baptism).
2. Always wash your hands with soap before touching the baby. Anyone who enters your baby’s room should wash his or her hands. No one should be permitted in the room if sick (fever, sneezing, coughing or runny nose). If someone is afraid he/she might be coming down with something but doesn’t have a fever or any symptom, a mask should be worn as a precaution. (If you ask a nurse, one will be provided.)
3. Get to know your baby’s nurses, doctors and the equipment being used.
4. Read information given to you about patient’s rights so you can be an advocate for your baby.
5. If you are a first-time parent, ask the nurse if the hospital has resources (nurse educator, video-tapes, handouts, pamphlets or books) to teach basic child-care (such as bathing, feeding, etc.). For Yourself
6. If both parents can be with the baby or if there are some other relatives or friends who can help, the best thing to do is to set up shifts for each person so the baby is never left alone (without a familiar voice). Setting up shifts allows everybody to get some rest.
7. Wear comfortable clothes and shoes. Bring a sweater or jacket in case the room is cool.
8. Mothers may want to wear support hose to prevent legs and ankles from swelling.
9. Mothers interested in breastfeeding can ask the nurse if the hospital has a lactation consultant to discuss breastfeeding when the baby is hospitalized. Most hospitals have pumping facilities, and your milk can be frozen and stored for use when the baby is feeding (usually through a feeding tube).
10. You may want to get a camera and take pictures of your child. Most parents of newborns take many pictures those first days of life and you will want these pictures later to explain how very special your child is (and why they have the scar they do).

1. Arrange to get off work.
2. Arrange care for other children and pets.
3. Call family and friends. You’ll need emotional support.
4. Make sure you have all the documents you need to take care of the admissions process.
5. Get a letter from the Social Work department releasing you from paying for parking.
6. Make sure you read all forms before signing them and ask the nurse or doctor to explain anything you don’t understand.
7. Find bathrooms, the cafeteria, security.
8. Know where emergency exits are.

___ Check into hospital and fill out necessary paperwork
___ Have lab work done
___ Heart Cath (if necessary)
___ Pre-op (bathe baby & make necessary religious arrangements)
___ Surgery
___ Post-op

Baby
___ wean from medications
___ extubate
___ remove IVs
___ remove chest tubes
___ feed

Parents
___ learn or review basic child care tapes (optional)
___ take CPR class
___ make necessary arrangements for any monitors or medical equipment needed at home
___ call parents in Support Group and find out from local hospital when meetings are held (if applies)
___ Discharge and Go Home!!!