"Life and love is like a roller coaster. It has its ups and downs. When you are holding on at all costs and screaming your head off. And when it is all over you feel weak in the knees and like you are going to throw up.
But the first thing you think is:
I HAVE GOT TO DO THAT AGAIN!"
In the NICU, parents quickly learn that babies have good days and bad days, just like adults do. As your baby progresses, it is almost a certainty that they will experience a few,if not many, of those "bad days", which are often termed "setbacks".
It can be wonderful when your baby is enjoying good days. You may feel as if things are finally turning for the better. You may feel that it is "safe" to bond and love your baby. And then a you hit a dip...
The bad days can be expecially sad and scary to you as a parent. The journey towards home for a hospitalized baby is many times compared to riding a roller coaster. Some days the highs are very high, but other days the dips are so low.
It can be very difficult to watch your baby endure setbacks in their progress. It can be disheartening and depressing knowing that the setback is one more obstacle to overcome before they can join you at home. Setbacks can give you information that makes you worry even more about the babies future. They can force you to come to terms with a disability that might never be cured. Setbacks can make you begin to doubt that your baby will ever be totally healthy. They can even darken over your joyous times much like a black cloud. They can cause you to draw back from your baby, in fear that something terribly awful will happen. They can make you doubt that you should love your baby.
Nearly all premature babies endure setbacks, and most babies have several setbacks during their stay. Most of these setbacks are normal, to be expected, and a part of their growth. The doctors and nurses will help you understand what is happening and why. The best defense against setbacks is education. If you understand that the setback is a normal part of preemie development, they can be less frightening. You will be better prepared to expect the setback to occur - you may feel a little more in control. If you can understand that many setbacks are not life- threatening, you can regain some sense of security and safety.
Sometimes, though, the setback your baby meets is life-threatening. Doctors are very good at explaining which type of setback is unexpected and poses a special challenges to their health. Here again, education can be your best defense. The doctors can give you likely alternatives - and often share some statistics about what course your baby may take. Athough there is little "preparation" that a parent can make when faced with the possibility oflosing a child, it can help to know all the options of what could happen.
While there is nothing that does eliminate the fear, the loss of control, and hopelessness, there is support you can receive at these times. Other parents who have had children battle the same setback can talk with you. Doctors and nurses can be incredible support for you during this time, too. Social workers and chaplains are also wonderful.
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