Preparing for the NICU

As much as every parent hopes and prays for a perfectly healthy baby, a sad reality is that some of us will experience the difficulty of having a baby who must be cared for in the NICU (neonatal intensive care unit). Preparing ahead of time, even if NICU is only a remote possibility, can help make things much easier on yourself and your partner. Sometimes the simple shock of the unexpected can make any situation seem much worse than it would if we were prepared to face and overcome the obstacles.

First, if there is any indication that your baby will be premature, require surgery after delivery, or be born with a defect or genetic condition, read as much factual and supportive material on these conditions as possible. The information can sometimes be scary and even depressing, but it can help you prepare for facing the difficulties that may come. You'll be able to communicate more knowledgeably with your baby's medical team if you are already familiar with the condition that your infant faces. You might also read the book Kangaroo Care: The Best You Can Do to Help Your Preterm Infant by Susan M. Ludington-Hoe with Susan K. Golant.

Kangaroo care is another term for holding your baby against your skin (usually inside your shirt) for a period of time each day. The babies (and moms) do much better physically although no one is quite sure why. Push for kangaroo care, and if your medical staff won't approve it, negotiate for as close as you can get. If they won't allow full kangaroo care, then just ask to hold your baby as often as possible. If they won't let you do that, at the very least, touch him often and talk to him (the book has a great section on how to convince your doctor). Since most hospitals are supportive of breastfeeding, that's a great excuse for taking your baby out of the isolette and holding him! However, do realize that there are occasions when a baby's medical condition dictates that he not be held or perhaps even touched, but this is a rare occurrence.

Secondly, seek support from other individuals who have faced similar situations. There are local support groups for many conditions, and a multitude of supportive websites for new parents of special needs babies.

If you wish to breastfeed your baby, begin preparations now. Contact a local LaLeche league leader and explain your special situation to her. Ask her for contacts and support information. If your hospital provides the services of a lactation consultant, talk with her before delivery. Ask her to help you prepare for breastfeeding and to make the appropriate arrangements with the medical staff and the nursery so that you can breastfeed or pump and store milk as necessary. She can offer suggestions, provide assistance and answer questions. If your hospital does not provide a qualified lactation consultant, or if you are not comfortable with the services provided, you can find referrals to a certified lactation consultant by contacting your local LaLeche League or calling 1-800-LALECHE. Also, in some cities there may be a listing for lactation consultants in the yellow pages of the phone book.

The LaLeche League website, www.laleche.org, offers a wealth of information on breastfeeding and many inspirational stories of mothers and babies who have developed successful breastfeeding relationships in spite of difficult circumstances. Several 'real life' stories can be found at www.lalecheleague.org/bfprem.html.

Next, visit the NICU of your hospital. Ask your doctor or patient liaison to arrange a tour and a time that you can just quietly sit in the nursery and observe the activities. Most hospitals are more than happy to accommodate your desire to become familiar with what will be your baby's home for many days or weeks or even longer. By observing other babies and the equipment and routine medical procedures, you can better prepare yourself for seeing your precious child in such a foreign environment. No amount of preparation can completely dismiss the shock of seeing your tiny baby hooked to so many monitors, tubes, and wires, but perhaps it can help you accept that this equipment is beneficial to your child and is helping him grow stronger.

Keep a notebook of things to discuss with your doctor. Jot down notes about the things you observe and any questions or concerns that you have about the procedures, staff or equipment. Do not be afraid to ask lots questions. This is your child, and the hospital has a responsibility to help you understand the procedures and daily routine you will be facing. Questioning why something is being done is not a sign of disrespect - it is simply a sign that you are a concerned parent and that you want to be involved in your baby's care.

When your baby arrives, again ask questions. If you don't understand a medical term, ask for it to be translated into plain English. If you aren't told where your baby is being taken, or why a medication is being administered, or any other detail that is of interest to you - ASK! Do not feel that you are being intrusive. Again, this is your child and it is your right to know what is happening. At the same time, do realize that there are emergencies during which your baby's medical team MUST concentrate on his well being. If things are frantic and rushed, try to accept that the medical team must take care of your child and then they will explain things to you. Many hospitals will assign a nurse or other support staff member to take care of the parents while an emergency is being handled. If your hospital provides such an individual, accept their support and assistance.

Continue to hold your baby as often as allowed. Many NICUs have rockers and areas specifically for parents. Mom and dad can rotate 'shifts' to allow each a chance to be with the baby, but also to allow one another a few minutes away from the nursery. Allow your baby to nurse as often as his condition allows. Some babies are so tiny or so weak that frequent nursing places too much of a strain on their systems and uses up more calories than they are consuming. If this is the case, your doctor may recommend that you not nurse as often, but that your baby receive your milk through a feeding tube. Being fed via a tube is called "gavage" feeding. If your baby must be gavage fed, insist that he be given your colostrum and breastmilk rather than formula. Breastmilk is considered a 'clear' liquid and can be consumed instead of glucose water and earlier than formula in most cases. A mother's milk is specially formulated for her baby even if he is a preemie. So even if you have to pump and bottle or tube feed, it's worth it. It may be a little harder for a premature baby to nurse than it would a full-term healthy baby, but the gavage feeding won't make it worse.

Most hospitals have lactation rooms which offer hospital grade double electric breast pumps and a place to store milk. If you have any questions about scheduling or using these facilities discuss them with your doctor or the hospital's lactation consultant. Pumping is a time-consuming process, and it can be frustrating at times. But pumping can allow you to establish and maintain a milk supply so that one day your baby can nurse at the breast. You may also wish to purchase or rent a pump for use at home or in your private hospital room. If you are facing a long term pumping arrangement, renting a hospital grade pump or buying a good quality electric double pump is a necessity. Not only will it make pumping less cumbersome than a manual pump, but it will also better imitate your baby's suckle and help your breasts produce milk more effectively than would a lower quality pump. You may wish to use approved lanolin ointment on your nipples to prevent soreness that may come from the frequent pumping.

Try to keep the nursery from giving him a bottle or pacifier. Instruct them to use a syringe or cup if they must. But know that, even if they do end up giving him bottles, you can probably still transfer him to the breast later, when he is healthy. Some nurseries are almost insistent on using pacifiers, but they serve no purpose other than to satisfy a baby's need to suck. It would be much more productive for the baby to be allowed to nurse, or if this is not possible, a parent can allow the baby to suck on their clean pinkie. This is much less likely to cause nipple confusion than is an artificial rubber or silicon nipple.

For your own comfort, take photos of your child immediately after delivery and throughout his hospital stay. Ask someone to take pictures of you holding the baby if possible. Have a friend or relative take at least some of these for fast processing and developing so that you can have the pictures if you must be separated from your baby for a while. If your hospital allows, you can also tape photos of yourself and your partner to the outside of the baby's bassinet or incubator and bring items from home such as blankets or stuffed animals to help alleviate some of the 'clinical' coldness of the NICU. And some moms find that having a teddy bear to hold onto and squeeze and hug can help them deal with the pain of separation from their baby. It in no way remotely replaces holding one's baby, but rather serves as a transition object and an outlet for the torrent of emotions that accompany a NICU stay.

Above all else, remember that you are the child's parent. You have a right to know about each change in his condition, each procedure, each medication, each piece of equipment being used and each test performed no matter how routine or seemingly insignificant. A supportive medical staff will be happy to discuss each detail with you and to go over your baby's charts with you on a daily basis. If any member of your hospital's medical staff seems unwilling to help you understand your child's condition or care, discuss the situation with your primary doctor - even going so far as to ask that another staff member care for your baby if necessary.

By keeping the lines of communication open and expressing your desires clearly and frequently, if needed, you can assure that your baby receives the best care possible and that you will both have the best chance possible of developing a positive breastfeeding relationship.

Please note, these are my thoughts and opinions only. I am not a medical expert nor a NICU mom. Please use this message as a starting point for your own information gathering quest ... and consult your own doctors for specific medical advice.