PICU Fatigue

You, your baby and any other people helping by visiting or taking shifts will be extremely tired. While the first week may be handled fairly well, as the hours turn into days, and the days turn into weeks, your mind and body are going to be off schedule.

At home you have work, meals, naps, bedtime routines and chores to give you a sense of time. This is not so in the hospital. In the hospital nurses, doctors and other staff will be conducting tests, giving medications, assessing and disturbing your baby at all hours of the day and night. After a while you will have to be your baby’s advocate and do some unpopular things. By the time a week and a half had passed after Alex’s second surgery, I was beginning to lose patience.

My baby had an ear infection, was cutting a tooth and had had open heart surgery. In spite of all of this, it seemed that nobody would let my baby rest. I knew there was no way he would heal without proper rest. Finally I got to the point where I would wrap Alex up in his quilt, sit in a rocker and rock him to sleep shooing everybody away and whispering that they could speak to me later. I would also pull the curtain closed and block entrance into Alexander’s room when he was asleep in the bed. Again I would ask people to come back at a later time if what they needed to do was not of critical importance. I asked the nurse to keep everybody away, but I always ended up having to tell people to come back later myself. It’s frustrating to have to do this to other people (and it’s always a group of people because you are in a teaching hospital), but it’s more frustrating to see your sweet baby becoming crabby and unhappy simply because he is exhausted.

Bonding

Another problem with long hospital stays for the first surgery is the timing of the procedure. The first days and weeks of a baby’s life are a critical bonding period. It is not uncommon for parents of critically ill infants to take home a baby who feels like a complete stranger.

To avoid problems with bonding there are some things you can do. The most important thing for you to do is to spend as much time as you can at the hospital talking, touching and, when possible, holding your baby. You can even make tape recordings of you, your spouse and/or other children talking to the baby, singing songs or reading poems, nursery rhymes or stories. The nurses will play these tapes for your baby when you are not at the hospital.

Another important part of bonding is being in charge of your baby’s care as much as possible. Although the nurses are the care experts in the hospital, you are the care expert in your home. Both parents need to help change diapers, feed the baby and comfort the baby when upset.

The last thing you might do to establish a good bond would be to determine what kind of routine you would like to have once you go home. Try to establish that routine at the hospital. This is not an easy task, but you should be able to set a time for meals, bath time, and bedtime. If you start doing these activities at the same time everyday you will be able to slip into that routine more easily when you go home. If you feel awkward doing any of these regular activities in the hospital, the nurses will show you some simple techniques or provide you with video-tapes that show you basic newborn care.

Possible Complications After Surgery

The most common complications (in alphabetical order) are:

• Arrhythmia - an irregular rhythm of the heart (too fast or too slow)
• Ascites - fluid on the abdomen
• Atelectasis - non-inflated lung tissue
• Bacterial Endocarditis (BE) - a bacterial infection in the heart tissue
• Cardiovascular collapse - when the heart fails to pump with enough pressure to maintain the body systems
• Edema - swelling, especially noticeable immediately after surgery. Your baby’s face, hands, feet, torso and testicles will probably look swollen. Diuretics will help relieve the edema
• Infection - infection is most likely to occur at the site of the wound, in the urinary tract (because of the Foley catheter) or in the lungs (pneumonia - because of fluid on the lungs)
• Otitis media - middle ear infection (possibly caused by the feeding tube) li> Phrenic nerve injury - severing or otherwise injuring the phrenic nerve which controls the diaphragm (the breathing muscle). Edema (swelling) of the phrenic nerve can cause the diaphragm to work less efficiently and effectively than normal.
• Pleural effusion - fluid around the lungs drained out via a chest tube
• Rejection - the body’s immune system attacks the heart because it is foreign tissue
• Sepsis - a bacterial infection (in the blood) which can occur anywhere in the body
• SA Node Injury (Sino-Atrial Node Injury) - damage to the natural pacemaking conductors
• Thrombosis - the formation of a blood clot within a blood vessel usually due to a central line, arterial line, or suture lines

Being Discharged

Once the doctors have discharged your baby, you should be given a discharge sheet. This form tells you what warning signs and symptoms to be aware of and what to do if they occur. The discharge sheet has the appropriate phone number for you to call. It also has the date of your follow-up appointment with the doctor’s name and clinic address.

Before going home you should be required to complete a CPR (cardiopulmonary resuscitation) class. You must know what to do if your baby loses consciousness or chokes. The hospital will give you a paper to help remind you of what to do in the event of an emergency. I put mine on the refrigerator.

An additional reminder of what you learned in your CPR course is in Appendix A (in the back of this book). You may want to review this page with any babysitter you have caring for your child. Remember: This instruction sheet is not a substitute for an American Heart Association course in Infant CPR. This page is simply included to serve as a reminder of what you have already learned.

Home Care

Once you are home you must make decisions about how your child will be cared for. Ideally, either the mother or the father will stay home with the child. Daycare facilities represent a higher risk of infection than home care. Certain diseases can be life-threatening, especially for transplant babies. RSV (respiratory syncitial virus) is one such infection. While dangerous for any newborn baby to contract, it is even more dangerous for a baby with a heart condition and could be life-threatening. In older children and adults RSV simply acts like a cold. Another virus especially dangerous for transplant babies is CMV (cytomegalovirus) which also presents itself as an ordinary cold in children and adults.

In order to protect your baby from infections there are some simple things you can do:

1. avoid day care settings
2. don’t smoke or allow anyone to smoke near your baby
3. don’t take your baby out in crowded settings especially if in an enclosed space (such as stores, small restaurants, etc.)
4. don’t take your baby to places where many young children will be (that even includes church nurseries)
5. don’t take your baby where you know someone is sick and don’t let sick people in your home
6. don’t be afraid to ask (or tell) people not to touch your baby (nobody should touch your baby without first washing hands) and
7. wash hands often (yours, baby’s and family members).
   It is especially important to wash hands after using the bathroom or changing diapers. Some doctors recommend that heart transplant babies should not have pets or houseplants.

That was a big list of don’ts. Here are some do’s:

1. do treat your child as normally as possible
2. do visit with relatives and friends, especially outdoors or in open spaces when everyone is well
3. do kiss your baby (not on the mouth or if you are sick), love your baby and have fun
4. if you go out to a restaurant or some place where someone sneezes or coughs, move or ask to be moved to another place away from that person
5. do keep your baby up to date on immunizations - childhood diseases are much more dangerous to your baby (heart transplant babies cannot have live virus vaccinations)
6. get a special bracelet or anklet for your child to wear indicating that the baby has HLHS or is a heart transplant patient and list the medications the baby takes and
7. do have a positive attitude - that alone goes far in developing a healthy person.
   One other thing you may want to do is to contact the nearest Fire Station and/or paramedics in order to inform them that your baby has a heart condition and may require emergency treatment or resuscitation.

Your baby will probably require some kind of medication (most commonly Lasix and digoxin for Norwood babies; additionally, cyclosporine and Imuran for transplant babies) and possibly some kind of equipment - whether it be some kind of monitor, feeding device or portable oxygen. Make sure you feel comfortable administering the medicines and using any equipment. Get a phone number of somebody to call in case you develop a problem or have a question. The nurses will be happy to help you learn how to care for your baby before you leave the hospital. Your baby may also need some kind of therapy (speech, physical or occupational) to help promote normal growth or to reteach certain skills. The hospital social worker can help you identify programs right for your child.

Child Development

Just because your child may seem a little slow to develop certain skills does not mean that your child will require additional help. Remember that your baby has had open heart surgery. Your baby has been on a ventilator, sedated and restrained for days. This is not true for babies without heart problems. Normal babies have many consecutive days to learn, move and grow.

Our children’s progress will be slower due to interruptions in their learning processes. Some parents may be alarmed if their baby is not on schedule with other babies they know. They might also compare their baby’s progress with that printed in parenting books or magazines. This is not fair to your baby.

If you have concerns about your baby’s progress, there are a number of things you can do: 1) only compare your baby to himself. Is your baby doing better than he was three months ago? If yes, then you know the baby is progressing. Remember, too, that after surgery and hospitalization your baby will regress (go back to earlier skills) and that this is normal. It may take a while for your baby to regain skills you thought had already been mastered. Surgeries and hospitalizations are hard on babies and young children.

The second thing to do is to talk to your baby’s pediatrician. The range of normal behaviors for babies varies widely; your baby may be within normal limits. If you still feel your baby is delayed, then 3) request a referral from your pediatrician. Your pediatrician will know the best place to send your baby locally to help your baby catch up.

Perhaps the best way for you to know if your baby is progressing is for you to 4) take pictures, videos or keep a diary of your baby’s achievements. I had a calendar on the wall of my son’s room where I could jot down achievements briefly: rolled over, played with toys, held a cup, fed himself a cracker, etc.

The fifth thing you can do is to call one of the parents in the support group. They may help you by telling about their own child’s progress. When you hear how slow some of the children were to develop certain skills, you will see your child is not alone. These parents may also be able to provide you with certain tips as to things you can do to help your child with motor development (sitting up, crawling or walking), speech and language development or cognitive development (how your child thinks and deals with his world). You may find it encouraging to note that many children who were slow to develop some skills rapidly start to catch up a given period of time after surgery.

When it comes to child development no two children are alike. Every child will learn in his own way on his own day. I am constantly amazed at how one day it seems a baby cannot do a particular thing (hold a cup, say “Mama” or find a missing object), but seemingly overnight the child becomes an expert. The next day it is as though the child has always been able to do the “impossible.” Some children watch other people and their world for a long time before they try a new task. Surprisingly, some of these children are successful almost immediately. It is not uncommon to hear a mother exclaim that her child did not walk for over a year. Then, all of a sudden, one day the child got up and started walking as though he had always known how.

The most important thing to keep in mind is that your child’s progress is only important in relation to himself. It does not matter if every other child in the neighborhood can ride a bike and your child cannot. What is important is that someday your child will learn to ride a bike. Perhaps the other children in your neighborhood will be riding bikes at five or six and your child will be seven before doing so. In the larger scheme of things - in a person’s lifetime, does it really matter what one did at age three or four or five? Or is it more important that a person had a fun and challenging childhood that helped him or her develop into a productive adult?

In the Social Services section of this book I have listed different facilities designed to help children develop certain skills. It is not uncommon for children with heart defects to require some kind of outside help. There are many kinds of therapy available for critically ill infants, many for free or for minimal fees. If your child does require therapy, it is important to note that the sooner the problem is identified and therapy begun, the sooner the problem can be remedied.