What to Expect the First Year (133 page)

“I'm trying to be strong for my son while he's in the NICU, but I'm scared, overwhelmed, and feeling out of control.”

Most parents whose babies are in the NICU experience a wide spectrum of ever-changing emotions, which can range from shock to anger to frustration, stress to fear to numbness, disappointment to confusion, intense sadness to equally intense hope—all of which are valid, understandable, and normal. You may feel overwhelmed by all the medical equipment attached to your baby and the constant activity of nurses and doctors. You may be frightened of the procedures your baby is undergoing or frustrated by feelings of helplessness. You may feel disappointed that your little one isn't the dimpled, adorable full-term baby you'd been expecting (and envisioning) throughout your pregnancy, frustrated that you can't take him home to begin your life together, and guilty about both sets of emotions. You may also feel guilty for not feeling happy about your baby's birth or guilty about not being able to keep the pregnancy going longer (even if there was absolutely nothing you could have done to prevent your baby's prematurity, which most often, there isn't). You may feel unsettled at the uncertainty of your baby's future, particularly if he is very small or sick. You may even unconsciously distance yourself from your preemie for fear of becoming too attached or because you find bonding difficult to accomplish through the portholes of an isolette. Or, you may feel unexpectedly strong feelings of love and attachment—deepened, instead of challenged, by the ordeal you're both enduring. You may be angry at yourself for your reactions, at your partner for not reacting the same way you are, at your family and friends for not understanding what you're going through or for acting as if nothing has happened, at your ob for not preventing this. Confusing these emotions further may be the fact that they may often conflict or fluctuate wildly—for instance, leaving you feeling hopeful one minute, hopeless the next, deeply in love with your baby one day, afraid to love him the next. Compounding them may be the physical exhaustion that comes from keeping a round-the-clock vigil at your baby's bedside, which may be more debilitating still if you haven't yourself recovered from delivery or are suffering from nipples painfully cracked from pumping.

Coping with these emotions may be extremely difficult, but keeping the following in mind may help:

• What you're feeling, saying, and doing is perfectly normal. Such extreme and sometimes contradictory emotions are experienced by nearly every parent of a premature baby at some time or another (though you may often believe that no one else has ever felt the way you do).

• There is no one right way to feel. Your emotions may differ from those of your partner, the parents of the baby in the next isolette, or from other parents of preemies you've talked to. Everyone will react to it a little differently—and that's normal, too. Remember, too, as you speak to other parents of preemies (and you should) that they may be feeling all of the same unsettling emotions on the inside, but those feelings may not show on the outside. Deep emotions often stay deep inside.

• Emotions need expressing. Keeping your feelings inside will only compound them—and make you feel more isolated. Let the NICU staff know what your feelings and fears are. Not only will they understand what you're going through (since helping parents is almost as important a part of their job as helping babies), but they may offer insights that can help you cope.

• You and your partner need each other. You can each gain strength by leaning on the other—and can be more effective as a team than individually. Open communication can also help keep the stress inherent in parenting a preemie (or having a sick baby) from hurting your relationship.

• Support best comes from those who know. Try talking with other parents in the NICU. You'll find that they also feel alone, unsure, and scared. Friendships are easily formed in the NICU because other parents need you as much as you need them. Many hospitals make support available through groups run by the NICU social worker, or can hook you up with support families whose babies have left the NICU—especially through online groups. No one can relate better to what you're experiencing—and share more wisdom and empathy—than parents who've experienced it themselves. Also be sure to tap into the message boards at
WhatToExpect.com
to look for support from those who know. A mobile source of support will be especially invaluable during those long days and nights of waiting at the NICU.

• It will take time. You probably won't be on an even emotional keel at least until your baby's on an even physical one. Until then, you'll have good days and bad days (usually corresponding to your baby's ups and downs). If you're a brand new mom of a preemie, your physical recovery and normal hormonal fluctuations can intensify feelings of all kinds. Reminding yourself that your feelings are normal—that all parents of preemies ride an emotional roller coaster at least until their babies are safely home and completely well (and sometimes even longer than that)—won't make the feelings go away, but it will help give you the perspective you need to cope with them. Of course, if you (or your partner) are feeling sadness, hopelessness, anxiety, or an inability to function that's too significant to attribute to the very normal stresses of being the parent of a preemie, it could be that you're also dealing with postpartum depression.
Click here
and
What to Expect When You're Expecting
for more on recognizing the symptoms of PPD, and be sure to seek the help you need to get better fast. Remember: To take the best care possible of your little baby, you'll also need to take the best care possible of yourself.

“I've always been determined to breastfeed my baby, and since she was born at 28 weeks, I've been pumping milk to be fed to her through a tube. Will she have trouble switching to nursing later?”

So far, so good. From birth your baby has been provided with the best possible food for a premature newborn—her mommy's milk—in the only way such a tiny baby is able to take nourishment, through a tube. Naturally, you're concerned that she be able to continue to get this perfect food once she graduates to suckling. But you have little to worry about. Research finds that premature infants weighing as little as 1,300 grams, or nearly 3 pounds, and as young as 30 gestational weeks may be able to suckle at the breast and are more successful at it than they are with the bottle.

Once you do put your baby to the breast, you'll want to make conditions as conducive to success as possible. Here's how:

• Read all about breastfeeding, beginning
here
, before getting started. Also enlist the help of a lactation consultant (hopefully there will be one on staff to help you out).

• Be patient if the neonatologist or nurse wants your baby monitored for temperature and/or oxygen changes during breastfeeding. This won't interfere with the breastfeeding process itself, and it will protect your baby by sounding an alarm in case she is not responding well to the feeding.

• Be sure you're relaxed and that your baby is awake and alert.

• Ask the staff if there is a special nursing area for preemie moms, a private corner with an armchair or glider for you and your baby, or a privacy screen that can be put up to shield you—especially because it's best if you cuddle and nurse your baby skin-to-skin.

• Get comfortable, propping your baby on pillows, supporting her head. Many new moms find a football hold (
click here
) comfortable as well as easy on the nipples.

• If your baby doesn't yet have a rooting reflex (she probably doesn't), help her get started by placing your nipple, with the areola, into her mouth. Compress your breast lightly with your fingers to make it easier for her to latch on (
click here
), and keep trying until she succeeds.

• Watch to be sure your baby is getting milk. Your breasts are used to mechanical pumping and will take a while to adjust to the different motions generated by your baby's mouth. At first, your baby's suckling will be rapid—an attempt to stimulate let-down. Then, as the milk is let down, your baby will slow down her suck and switch to a suckle-swallow pattern.

• If your baby doesn't seem interested in your breast, try expressing a few drops of milk into her mouth to give her a taste of what's in store.

• Nurse your baby for as long as she's willing to stay at the breast. Keep her on your breast until she's stopped active suckling for at least 2 minutes. Small preemies may nurse for close to an hour before being satisfied.

• Don't be discouraged if the first session or first several sessions seem unproductive. Many full-term babies take a while to catch on, and preemies deserve at least the same chance. Still having trouble? Ask for help.

• Ask that any feedings at which you can't nurse be given by gavage (through the nose) rather than by bottle. If human milk fortifier or other fortification is given to your baby to supplement the breast milk, ask that it, too, be given by gavage or by the supplementary nutrition system (
click here
).

You'll be able to tell how well your baby is doing on the breast by following her daily weigh-in. If she continues gaining about 1 to 2 percent of her body weight daily, or about 3½ to 7½ ounces a week, she'll be doing fine. By the time she reaches her original due date, she should be approaching the weight of a full-termer—somewhere around 6 to 8 pounds. Do keep in mind that breastfed preemies (as with term infants) will gain a little more slowly than formula-fed ones.

“So far I've handled our baby only through the portholes of his isolette. But I'm worried about how well I'll be able to handle him when he finally comes home. He's so tiny and fragile.”

When your baby finally makes that long-anticipated trip home, he'll probably seem pudgy and sturdy to you, rather than tiny and fragile. After all, depending on how small he was when he arrived, he may have doubled his birthweight when he hits 4 or 5 pounds—the average weight at discharge for preemies. And chances are, you won't have any more trouble caring for him than most new parents have caring for their full-term babies. In fact, if you have a chance to do some baby care at the hospital (something you should be encouraged to do, especially when it comes to his specialized care) in the weeks before your baby's homecoming, you'll actually be ahead of the new parent curve. Which is not to say it will be easy—it rarely is for new parents, whether the bundle they're bringing home is preemie or full term.

If you're wondering how well you and your baby will do without a nurse or neonatologist looking over your shoulder, be assured that hospitals don't send home babies who are still in need of full-time professional care. Any care that you'll need to provide at home (beyond the baby basics), the staff will prepare you for—and if they don't give you the instructions and preparation you need, ask for them. Also ask about getting infant CPR training before you take baby home, an important skill for any new parent, but especially one of a preemie (
click here
. To help parents feel more confident before discharge, most NICUs offer parents the opportunity to spend a night with their baby in a family room close to the nursery but without any nursery staff supervision—on their own, but with backup a call light away.

If you're still feeling overwhelmed at the thought of going it alone by the time your baby's getting ready for discharge (especially if he's being sent home with an assortment of medical apparatus, such as breathing monitors and oxygen hoods), consider hiring a baby nurse who has experience with preemies and their care to help out for the first week or two, finances permitting.

“Though the doctor says our baby is doing well, I'm still afraid that she'll come through this with some kind of permanent problems.”

One of the greatest miracles of modern medicine is the rapidly increasing survival rate for premature infants. At one time, a baby weighing in at 1,000 grams (about 2 pounds, 3 ounces) had no chance of making it. Now, thanks to the advances in neonatology, many babies who are born even smaller than that can be expected to survive (see
box
). Which means the odds of your baby coming home well from her hospital stay are very much in her favor.