Parenting Your Preemie

WebMD Live Events Transcript

Parents of premature babies know the extra dose of fear and anxiety that comes from a child's early arrival can also be accompanied by extra joy when each new development milestone is reached. We talked about the first big year of your little one's life with the author of 'The Preemie Parents' Companion', Susan Madden, MS.

The opinions expressed herein are the guests' alone and have not been reviewed by a WebMD physician. If you have questions about your health, you should consult your personal physician. This event is meant for informational purposes only.

Welcome, Susan. Please tell us a little about your own experience that led to the writing of your book.

Almost 13 years ago my son was born very unexpectedly 12 weeks early, weighing 2 pounds 13 ounces. I knew nothing about prematurity; I didn't know what to expect; and I didn't know what this meant for his future or for ours as a family. But like all parents of preemies, I learned very quickly about the many complexities, the ups and downs of the whole new world of prematurity. While your child is in the hospital, it's like you're taking a condensed course on neonatology.

But the real impetus for writing the book came after we brought Philip home. There are many books that have been written about what to expect while you're in the hospital but I could find very little about what to expect after your baby comes home. I naively thought we were finished with prematurity when he came home, but he continued to show funny quirks. He acted differently from my other two children who had been born full-term and I didn't know what to make of this. I met other parents of preemies who were having similar experiences. I wanted to know whether what we were seeing was normal for preemies; would these babies outgrow these things, or would our children always be different? That was the primary reason that I set about writing this book, to get answers to those questions.

But there were two other driving forces that are a bit antithetical to each other: I though there should be some acknowledgement of the extra challenges involved in caring for preemies as they grow, particularly during infancy. I wanted to draw on the experiences of preemie parents to illustrate some of the common challenges that people face. I also wanted to provide encouragement for preemie parents. Having your baby born too early is such an incredibly stressful and terrifying experience and there are so many unknowns. I wanted to provide support in a positive sense that most of these babies, despite their early difficulties, do well. They may take a different path, but most of them grow up to be healthy, happy children.

As a footnote my son, who was born weighing 2 pounds 13 ounces, will be 13 in two weeks and we went out to buy him a new pair of shoes last night. We found he now takes a men's size 12!

My son is now 17 days old and remains in the NICU. He was born at 32 weeks and three days and fortunately he weighs 4.5 pounds. He has come off the ventilator, IV, etc. but still needs to be fed through a tube because his pulse oxygen drops if we try to bottle him. I had planned to nurse and the past few weeks of pumping and waiting have been difficult. However, we are grateful that he is doing as well as he is. I would love to know how to facilitate his development and wonder whether I will ever be able to nurse him. How will I not panic once he is home, not knowing what his blood oxygen level is? Do parents of preemies EVER learn to relax?

First, congratulations on the birth of your baby. I'm glad he's doing well. We had the same problem with our son in that when we fed him bottles his oxygen levels often dropped precipitously. Feeding was a very nerve-wracking business. If you want to move toward breastfeeding, I speak as a parent who tried to do the same thing, I believe it takes a lot of work to be able to move toward full breastfeeding for a child born prematurely.

On the positive side, your son was born at 32 weeks so he will need to be tube fed for probably a lot less time than my son, who was born at 28 weeks. I would suggest that you continue to pump milk, which I assume you are doing now, and if you have any extra keep stockpiling it in your freezer at home.

There are two parts to your question, so let me talk about the drop in oxygen levels a bit. The fact that babies do that is because of their immature nervous system. Feeding is a very complex activity. It takes a long time for babies to learn to coordinate sucking, breathing, and swallowing, and it seems to be the breathing that they forget to do when they're sucking. But this is a problem that they grow out of. By the time your baby is discharged he will have spent a certain number of days without having any spells of low oxygen.

To be perfectly truthful, Philip continued to have the same breath-holding problems periodically, even after he was home. But because he was bigger and I was used to it, it wasn't as scary. I simply hold the nipple from his mouth and let him catch his breath.

"I think we all suffer from a syndrome called "waiting for the other shoe to drop," but it gets easier over time as your baby gets older and more stable and begins to grow and develop."

I continue to pump for my son, though after more than two weeks my milk supply has not increased very much. I tend to yield only 1 ounce to 2 ounces at most and do not know how to kick my milk into high gear in order to feed my son long term. Do you have any advice?

About two weeks before your son is discharged, start pumping on a more intense schedule (I think I've heard every four to five hours as a recommended schedule, but you may want to check with a lactation nurse at your hospital). This means pumping every four hours through the night, as well. The larger a milk supply you can develop, the easier it is for your baby to nurse.

The one very important rule to remember when you are trying to move a preemie to full breastfeeding is to never go cold turkey. Never stop bottles all together as a method to try to encourage breastfeeding. It can be a long slow process to move toward full breastfeeding, but many parents do manage it. If you end up using a combination of bottles and breast milk, or finally move to all bottles, know that you have given your baby your breast milk when it was most important to him.

There are a number of methods that people have tried for building breast milk supply, and I can't go into all of them here, but if you contact your local La Leche league and ask for an expert on breastfeeding preemies they should be able to help you.

As for your question about whether parents of preemies ever relax, that's hard to say. I think we all suffer from a syndrome called "waiting for the other shoe to drop," but it gets easier over time as your baby gets older and more stable and begins to grow and develop. There does come a time when you stop thinking about it so much.

Looking back, was there any indication of conditions that led to your son's preterm birth? In your research, did you discover if most preemies are born early for no clear reason, or are there specific conditions that increase this risk?

In my own case, I had early contractions that I assumed were Braxton-Hicks contractions and didn't pay attention to. When they finally got so strong that I couldn't ignore them, I called the doctor and they put me on medication to stop the contractions. But there was no real reason that anyone could find that explained why I went into early labor.

In the research it says about 60% of the time no clear reason for premature birth is ever found. New research shows that a certain percentage of those cases are probably due to urinary tract infections or uterine infections that are undiagnosed and basically have no symptoms. For the other 40% of cases, some of the common reasons are:

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